AIBD 2020: Advances in Pediatric IBD

On the final day of AIBD, the session I chose to focus on for this article was “Advances in Pediatric IBD”, which included presentations from Dr. Anne Griffiths, MD, FRCPC, Dr. Joel Rosh, MD, FACG, and Dr. Carlo Di Lorenzo, MD.

Dr. Griffiths opened with a review of the advancements in pediatric IBD throughout the year. In her presentation, she noted that early use of anti-TNF therapies are associated with remission and a decreased risk of disease progression later on in life. This led into Dr. Rosh’s presentation on when to begin treatment with anti-TNF therapies. Dr. Rosh noted that while 40% of pediatric Ulcerative Colitis (UC) patients can maintain steroid-free remission with mesalamine, the remaining 60% of pediatric UC patients are likely to need immune-modifying therapy.

When determining which biologic to use on pediatric IBD patients, Dr. Rosh listed that some of the factors include:

• Time of disease onset

• Biomarkers (the patient’s test results)

• Safety and efficacy of the treatment

• Psychosocial aspects and the opinion of the pediatric patient themself

The presentation on pediatric IBD included what was, in my opinion, a well-rounded approach to holistic care. The doctors spoke to the importance of mental health care, and other lifestyle factors that may have a role in a patient’s symptoms. The majority of this information came from Dr. Lorenzo’s presentation on “Therapeutic Approaches to Functional Bowel Disorders in Children with IBD”. In other words, his presentation covered the segment of the pediatric IBD population that also suffers from Irritable Bowel Syndrome (IBS). Dr. Lorenzo explained in his presentation that approximately 35% of IBD patients fit the criteria for IBS as well, and it is especially common in patients with Crohn’s disease. Even I myself have been diagnosed with having IBS and IBD.

This combination of IBD and IBS in patients can affect multiple aspects of a person’s quality of life, including but not limited to increased fatigue, anxiety and depression. In order to combat this negative impact on mental health and quality of life, Dr. Lorenzo outlined steps that a patient and their care team can make, which I have listed below:

• Involve mental health providers earlier on in the patient’s care. In some clinics they even have providers who specialize in mental health for IBD patients.

• 30 minutes of daily exercise is associated with decreased symptoms. This does not necessarily mean vigorous exercise (as that can be challenging for many of us with chronic illness) - but even a walk around the neighborhood can improve a patient’s well being.

• Providers are encouraged to teach parents to respond to their children with reassurance. This was associated with a decrease in pain among the children.

• Symptoms may worsen with less sleep. Healthy sleeping habits can increase a patient’s quality of life.

As someone who was diagnosed at a young age, and was introduced to the world of IBD as a pediatric patient, I enjoyed this talk and seeing the advancements that are being made for the pediatric community. After attending AIBD this past week, I look forward to the future of IBD treatment and advancements with confidence and positivity.

AIBD 2020: Special Considerations in the Management of Young(er) Patients with IBD

After attending the session, Special Considerations in the Management of Young(er) Patients with IBD… And What They Can Teach Their Elders, I am inspired to hear the radicalization of care that is being conceived for pediatric IBD. Dr. Sandra C. Kim, MD, the Director of the IBD Center at the PMC Children’s Hospital of Pittsburgh, broke down the session into three parts. The first talked about the precision of medicine in Very-Early Onset IBD (VEOIBD), the second was on nutritional therapy, and lastly, the third focused on psychosocial care for young IBD patients. This is vital information as there is an increase in annual incidences of IBD pediatric diagnoses; in fact, there has been a 50% increase in children with IBD over the past decade. Children with IBD also deal with disproportionately greater costs than adults and accumulate a higher cost per lifetime. There is great importance in centering pediatric GI and adding nuance to the conversation around holistic care. Following is the breakdown of the three-part session Dr. Kim presented. 

-   “What I really needed to know, I learned in kindergarten: Precision medicine in VEOIBD”

o   VEOIBD includes patients that are less than 6 years old and often involves a genetic disorder. It is also the fastest growing demographic in IBD patients.

o   Younger patients, those with a stronger disease, and those with family history tend to have some form of Monogenic IBD, which can impact the therapy given. It is important to have this distinction made to better choose between therapy options.

o   For evaluations, GI doctors will start by lab testing, searching for complete blood count and checking inflammatory markers. Other areas of interest and evolution may include Immunological studies, genetic evaluation, and histology if needed. If the disease is more complex, there could be an incorporation of other specialists including Immunology, pathology, or surgeons.

-   “Let thy food be thy medicine: Nutritional therapy”

o   Exclusive Enteral Nutrition (EEN) is a no-solid food, formula–based diet. According to ECCO/ESPGHAN guidelines, EEN is recommended as a first choice for induction therapy for children with mild to moderate Crohn’s Disease, especially for those patients who have not finished growing.

o   Dr. Kim also provided a study specifically done comparing a combination of the Crohn’s Disease Exclusion Diet (CDED)–which includes removing animal fat, wheat, dairy, red meat, emulsifiers, maltodextrin, and carrageenan–and Partial Enteral Nutrition vs. EEN by itself. The study showed that the CDED plus Partial Enteral Nutrition combination had higher rates of remission and higher tolerance rates..

o   However, as we know, timed diets as intense as these are often not sustainable. Dr. Kim points out there are real-life barriers to access nutritional diets such as these two. The biggest barriers include the time and energy being put into them and the cost of them. They are currently predominantly seen used by families in a higher socioeconomic status. I am really grateful that Dr. Kim brought up the importance of access to care and that doctors need to be in tune to be sure that the care they are providing or suggesting is truly accessible to their patients.

-   “It takes a village: Collaborative IBD Care”

o   Depression is present in the majority of IBD pediatric patients, and depression is increased when disease is active and steroid is used as a treatment.

o   Children with IBD are shown to have a lower quality of life and social interactions are greatly impacted. Anywhere from ⅓ to ½ of children with IBD have limitations in daily life activities.

o   The greatest gap in pediatric GI care noted was in psychosocial care. Specifically, patients felt there was no person to discuss transition between adult and pediatric GI treatment with. This experience is one I am sure many of us can relate to. There needs to be proactivity from both pediatric GI and adult GI providers and the process should be started well in advance.

o   Other tools for successful transitioning include: utilization of checklists, educational tools, actively engaging patients and families, and written health care transition plans. Also, the dedication of clinics for adolescent patients.

o   Dr. Kim offers for GI clinicians to ask the tough questions and have a comprehensive medical summary ready to go.

o   Both adult and pediatric MD’s should anticipate existing gaps of knowledge and eagerly teach self-management skills to patients.

As a patient advocate with CCYAN and having received a diagnosis at a young age myself, this session gave me so much hope, specifically in regards to the acknowledgement of the impact that IBD has on a child's psychosocial development as well as validation of the toll that IBD has on a child’s mental health. MD’s, such as Dr. Kim, hear our stories and advocacy work and remind us why we do what we do.

AIBD 2020: Optimal Management of Clostridium Difficile Infection (CDI) and CDI Recurrence in Patients With IBD

C. difficile is a naturally occurring gut bacteria which is harmless, until the gut bacteria balance gets altered by antibiotics, allowing C. difficile to multiply. This is when it becomes an infection, leading to diarrhea and potentially causing serious bowel issues. Many cases of C. difficile infections occur in a healthcare setting because of their links to antibiotic therapy.

As mentioned in my previous article, a C. difficile infection (CDI) can be incredibly destabilising for IBD patients and can cause flare-ups even in patients who had previously been in deep remission. Hence, to know more about CDI and IBD, I attended the AIBD 2020 CME Symposium on ‘Optimal Management of Clostridium Difficile Infection (CDI) and CDI Recurrence in Patients With IBD’. 

The first talk in the symposium was given by Dr Sahil Khanna on the epidemiology, risk factors, and diagnosis of C. difficile infections in IBD patients, and here are the key takeaways from his presentation - 

• The number of patients with C. diff infections is rising every year, and so is the proportion of patients with both IBD and C. diff.

• The risk of recurrent C. diff infections is higher for patients with IBD compared to patients that do not have IBD.

• Risk factors for CDI in IBD - antibiotic use, prior CDI, colonic disease, active/uncontrolled IBD, active immunosuppression (biologics), chemotherapy, long-term hospitalisation, surgery

• Patients with IBD and CDI are more likely to not respond to IBD therapy, undergo surgery, have more frequent ER visits/hospitalizations, greater recurrence and mortality rates, and incur higher healthcare costs compared to IBD patients with no CDI.   

• All IBD patients with a flare should be tested for CDI because of overlapping symptoms.

• A PCR test is insufficient for testing CDI. A 2-step algorithm comprising of GDH and EIA is desirable.

The second talk in the symposium was given by Dr Ari Grinspan on the treatment of CDI, and the important points of his presentation, from a patient perspective, are listed below - 

• IBD patients are at a very high risk of CDI recurrence.

• FMT is a safe and effective option for treating recurrent CDI. It has a cure rate of 80-90% among IBD patients with recurrent CDI and the probability of a post-FMT IBD flare is very low. It also improves the microbiome diversity. 

• FMT should be done earlier, perhaps after a 1st recurrence of CDI, for better long-term results.

• Escalation of IBD therapy after a C. diff infection is safe.

• COVID hasn’t increased CDI rates, but patients with diarrhoea should be checked for CDI.

• OpenBiome (stool bank) is on a temporary clinical hold because of COVID, hence, FMT for recurrent CDI is on hold at many centres. 

The symposium concluded with case discussions and a Q/A session, of which an important point to note was

• Probiotics have no role in the treatment of CDI among patients with IBD. Recent research has shown that probiotics may not only be ineffective at preventing recurrence but may even cause harm. 

The symposium, although directed at clinicians, was enlightening to me as a patient. Chronic illness takes over almost every aspect of our lives, and as a patient, the more knowledge and information we have about what we are dealing with, potential scenarios, control measures, the more we feel at ease and are able to move forward with life without having a constant fear of the unknown. This information is even more valuable to patients living in regions with substandard healthcare facilities and/or are financially strained. I’ve thoroughly enjoyed AIBD 2020 so far, and even though many sessions have been technical, it has really increased my understanding of my condition, and also made me aware of my own lapses in self-care. I hope this article helps you in similar and other ways. 

Thank you! Stay safe :)

AIBD 2020: Talking Nutrition with Your IBD Patients

On the first day of AIBD 2020, one of the breakout sessions I attended was “Talking Nutrition with Your IBD Patients.” Led by Dr. Maria Abreau from the University of Miami Miller School of Medicine, she was joined by Ashwin Ananthakrishnanan, MD, MPH (Massachusetts General Hospital and Harvard Medical School); Kelly Issokson, MS,RD, CNSC (Cedars-Sinai); Andrew Grossman, MD (Children’s Hospital of Philadelphia); and Mark Mattar, MD, FACG (MedStar Georgetown University Hospital). 

I want to start out by saying that this session and what was discussed made me extremely hopeful for the future of patient care when it comes to incorporating and implementing complementary therapies. The word complimentary was used to highlight the fact that dietary therapies are not necessarily alternative therapies, but can play a role in and be an integral part of treating mild to moderate IBD. 

As Dr. Abreau mentioned, too often patients are told by doctors that food doesn’t matter, and that they’ll come to her and say, “My last doctor said it doesn’t matter what I eat.” 

Having personally experienced this exact situation firsthand, when a doctor once told me that no food will affect me except for popcorn and Chinese food, to hear an expert in the field finally say that, “You lose the patient’s trust when you tell that diet doesn’t have anything to do with it,” is in itself a step in the right direction. Her hope is that those who joined this session, which was specifically centered around approaching and having discussions about nutrition with patients, will have at least learned not to say that it doesn’t matter what you eat. I share that same hope. And no, this does not mean that food causes IBD, and it certainly doesn’t mean that food can cure IBD - this just means that food, something that is a part of our everyday lives, does play a role when it comes to your body. It means that both the progression and management of the disease, as well as the process of bringing one closer to remission, need to be seen with a multi-faceted lense. 

The presentation consisted of addressing a variety of patient scenarios, from the management of stricturing of Crohn’s disease to a teenager with growth stunting. By going through each case and discussing their individual situations and needs, this inherently showcases how incredibly individualized both IBD and nutrition are. 

When discussing the presence of strictures in patients, as seen in one of the patient cases discussed, the panel brought up an important point. While this is a scenario where low fiber needs to and should be emphasized, low fiber is brought up much more often than it should be. It ends up being the default suggestion to everyone, which is not beneficial, and can actually be harmful. Instead, patient individuality needs to be at the forefront. 

There were a few distinct common threads that were woven through each of the cases that I want to especially highlight below. 

1: The importance of Mental Health/Mindset Surrounding Food

• As a patient, it gives me hope that doctors and dieticians are working together and having discussions about helping patients with the very real food avoidance/ food fear that can come with IBD by focusing on not only mindset reframing, but also their own verbiage. It is critical to help patients establish a better relationship with food as part of their healing, and this is something that requires support, which I’ll dive into soon when addressing the importance of working with a dietitian who is well-versed in IBD. 

• Too often, it creates great duress in patients when they are presented solely with a seemingly-never ending list of foods that are off limits to them; the thought of food elimination alone can be triggering on top of an already overwhelming situation. Instead of solely focusing on, “What do I need to avoid?” it’s imperative to help shift it to “What CAN I eat?” (like proven anti-inflammatory foods). In doing so, it’s also important that more doctors begin to make it clear to patients that in a setting of active inflammation, food intolerances may be different than they are in remission. 

• The fact that these conversations are being had and these changes are being made on a professional level is going to be of immense benefit to both the physical and mental health of IBD patients. 

2: The Importance of Nutritional Status 

• Assessing and addressing nutritional status in IBD patients is a must, both in general and in those on dietary therapies when any kind of elimination is involved. This includes vitamin b12, d, iron, etc.  

• As I learned in another session, “Infectious Complications in IBD and How to Manage the Patient with Ongoing Infection,” malnutrition increases the risk of infections in IBD patients. Intervening early and being vigilant in respect to nutritional status is imperative to mitigating additional repercussions. 

3: The Importance of Working with a GI-trained Dietitian 

• To sum it all up, one of the most prominent threads woven throughout this session was the need for quality, accessible dietitian support. All of the above points come back to this one; because there is wide variability in which foods can trigger symptoms in an individual, because food fear is a very real thing, and because malnutrition can lead to even more complications, all experts on the panel recommend seeing a GI/IBD focused dietician. 

• It’s imperative to know that nutritionists are NOT registered dieticians. Yet, as patients, it can often be difficult and challenging to identify and find true GI or IBD focused dietitians. To help with this, as Kelly Issokon suggested, these following sites have searchable databases to locate one:  

  • https://iffgd.org

  • https://www.eatright.org

I hope that with resources and insights like the ones above, and with conversions like these, access to dietary therapies, information about dietary therapies, and the ability to succeed with dietary therapies (again, as complementary therapies, not necessarily alternative therapies), will become more attainable and feasible for all IBD patients. 

AIBD 2020: Highlights of IBD Publications in 2020

As part of the Advances in Inflammatory Bowel Diseases (AIBD) conference, I joined Session V: 2020 Editor’s Focus, introduced by Miguel Regueiro and moderated by David Rubin. In the session, David, alongside Gary Lichtenstein, Jean-Frederic Colombel, and Raymond Cross showcased some notable pieces of research that had been published in various gastroenterology journals throughout 2020. These were followed by the best clinical abstract research presentation by Shintaro Akiyama, and a summary of the pregnancy and IBD study called ‘PIANO’ by Uma Mahadevan.

Notable papers from four different gastroenterology journals were discussed. The journals included Gastroenterology https://www.gastrojournal.org, the American Journal of Gastroenterology https://journals.lww.com/ajg/pages/default.aspx, Clinical Gastroenterology and Hepatology https://www.cghjournal.org, and Inflammatory Bowel Diseases® https://academic.oup.com/ibdjournal.

Managing IBD during the COVID-19 pandemic

David Rubin and colleagues published an article about managing IBD during the COVID-19 pandemic (https://www.gastrojournal.org/article/S0016-5085(20)30482-0/fulltext). The key take home messages from this article were that:

1. people with IBD do not appear to be at a high risk for infection with SARS-CoV-2, the coronavirus which causes COVID-19;

2. People with IBD who aren’t infected with SARS-CoV-2 should not stop their IBD treatment;

3. People with IBD who are infected with SARS-CoV-2 but have not developed symptoms of COVID-19 should temporarily stop methotrexate, thiopurines (e.g. azathioprine, 6-mercaptopurine, thioguanine), and tofacitinib, while delaying biologics for two weeks while monitoring for symptoms of COVID-19;

4. People with IBD who develop COVID-19 should temporarily stop methotrexate, thiopurines, and tofacitinib, and biologics, until their symptoms have gone, or if available, when a follow-up test comes back negative;

5. The severity of COVID-19 and IBD should result in a careful risk-benefit decision regarding COVID-19 treatment and IBD treatment.

One study by Erica Brenner and colleagues (https://www.gastrojournal.org/article/S0016-5085(20)30655-7/pdf) found that steroids, but not anti-TNF biologics (e.g., adalimumab, certolizumab, golimumab, infliximab), are associated with worst COVID-19 outcomes in people with inflammatory bowel diseases (IBD), providing some reassurance for those on anti-TNFs.

Identifying people with Crohn’s disease who are more likely to fail on certain biologics

Aleksejs Sazonovs and colleagues in the UK published a paper (https://www.gastrojournal.org/article/S0016-5085(19)41414-5/abstract) which looked at a new way of potentially predicting those people with Crohn’s disease who may develop anti-drug antibodies to infliximab and adalimumab. When people develop anti-drug antibodies to biologics, they can become ineffective, resulting in a change in treatment. This study found that a particular variation of a gene, called HLA-DQA1*05, was linked with an increased chance of developing anti-drug antibodies to infliximab and adalimumab in people with Crohn’s disease. Although further research is needed, if this finding is proven, it could mean that people with this type of gene could be identified before starting treatment, so that they could be placed on different treatments or combinations of treatments to help prevent the development of anti-drug antibodies.

Low FODMAP diet does not influence microbiome

Cox and colleagues performed a study in people with inactive IBD looking at the FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) diet. They looked for an effect on symptoms, the fecal microbiome, and markers of inflammation. Although a low FODMAP diet appeared to improve irritable bowel symptoms, the researchers did not find any difference in the composition of the microbiome and markers of inflammation. They concluded that they don’t really know whether a low FODMAP diet has anti-inflammatory effects for those with IBD.

Safety of newer medicines called JAK inhibitors

Olivera and colleagues looked at the safety of a newer type of medicine used to treat IBD (and other immune-related conditions) called JAK inhibitors (short for Janus Kinase inhibitors). The only JAK inhibitor medicine approved in Ulcerative Colitis is called Tofacitinib, although there are others available and licensed in rheumatology. The researchers looked for the risk of serious infections and infection with the varicella-zoster virus (herpes zoster infection). Compared to other treatments, serious infection risk with JAK inhibitors were no different than other treatments used. However, there was an increased risk of herpes zoster with JAK inhibitors. Therefore, people starting these treatments should receive a vaccination against herpes zoster.

Differences in IBD gut microbiota

Pittayanon and colleagues looked for differences in gut microbiota in people with and without IBD. Although some differences between Crohn’s disease and ulcerative colitis were seen, the researchers concluded that while there were some differences between people with and without IBD, these findings were not consistent. 

Promising results from a new biologic called Mirikizumab

Sandborn and colleagues presented findings from a Phase 2 clinical study on a new biologic called mirikizumab in people with ulcerative colitis. Mirikizumab is known as an anti-IL-23 biologic, since it attaches to IL-23, an inflammatory molecule in the body involved in IBD.  The study looked at clinical remission, clinical response and improves on endoscope at 12 weeks. The results were positive and showed that the 200 mg dose seemed to be more effective than 600 mg. As a result, mirikizumab would move into a larger phase 3 clinical study in a larger group of people.

Subcutaneous injection of vedolizumab in ulcerative colitis

Sandborn and colleagues also looked at the effects and safety of vedolizumab as a subcutaneous (under the skin) injection, compared to intravenous vedolizumab, which is how it is currently given. In people with ulcerative colitis, the subcutaneous injection had the same effects and safety as the intravenous version. The researchers now wait for the subcutaneous injection to be approved by the medicine regulators. They then expect doctors to begin moving some people with ulcerative colitis over to the subcutaneous injection, which may provide some more convenience for people to fit treatment around their daily lives.

New oral medicine called Etrasimod appears to be effective in ulcerative colitis

Sandborn and colleagues found that a new medicine called Etrasimod at a dose of 2 mg was more effective than placebo, and the study would be progressing from a Phase 2 to Phase 3 study in ulcerative colitis. Etrasimod is a next-generation, once-daily, oral treatment which changes signals within cells involved in inflammation.

Another new oral medicine called Mongersen does not appear to be effective in Crohn’s disease

Sands and colleagues published the findings of a phase 3 study of Mongersen, an oral medicine that targets inflammatory signals in gut cells, in people with Crohn’s disease. Although the phase 2 study showed promising results, the phase 3 study was disappointing, showing that clinical remission was no more likely with mongersen than with placebo. The researchers said that reflections on the negative results led to another piece of research to help them learn why the results of this study were negative. These reflections showed how it is important to ensure that the study design is well thought out. They noted that the phase 2 study was performed in a small number of hospitals in Italy, and pointed out that collecting study data from a single centre can risk the future results of studies.

Other research highlights published in IBD journals throughout 2020

• Antibiotic-resistant intestinal microbiome can persist in people with pouchitis.

• A number of different biomarkers (biological clues) were found to be present years before an IBD diagnosis. This understanding may lead to the development of future trials to prevent IBD for people who are at higher risk, or at least to help ensure people are diagnosed earlier on.

• Home infliximab infusions cost more than office and hospital infusions. Home infusion-based patients were also seen to be more likely to not adhere to their treatment, compared to office and hospital-based infusions. 

• Further studies are required to understand whether further treatment is needed after people have been in hospital with IBD to prevent acute venous thromboembolism (blood clot) within 60 days of being in hospital.

• Imaging of the anus using Magnetic resonance (MR) enterography can reveal unsuspected perianal fistulas in people with Crohn’s disease. 

• IBD-attributable hospital costs declined modestly over time for people with Crohn’s disease, but did not change for people with ulcerative colitis.

• Anxiety and mood disorders increased the risk of stopping anti-TNF biologics, especially during the first year following treatment initiation in over 1000 patients.

• Curcumin was shown to not be effective in preventing post-operative recurrence of Crohn’s disease.

• A Mediterranean diet can improve body composition, liver steatosis and disease activity in IBD. 

• High levels of certain while blood cells called eosinophils is more common in paediatric-onset IBD and is associated with a more severe disease course.

• Primary sclerosing cholangitis-ulcerative colitis (PSC-UC) is a milder form of ulcerative colitis and should be regarded as a unique form of UC. People with PSC-tend to be younger at diagnosis and have milder disease severity, despite being more likely to have inflammation of the entire colon. Response to treatment similar to people with ulcerative colitis.

• Daily aspirin use is not associated with worsening IBD. 

• Infliximab is not associated with excess weight gain in women with IBD.

• Cumulative histologic disease activity is associated with neoplasia in chronic colitis. 

• Anti-TNF biologic use is associated with lower rates of colon cancer, as shown by analysis of the Explores EMR database between 1999 and 2020. Anti-TNF biologics on their own or given with other treatment reduced the rate of colon cancer.

• The prevalence of anxiety, depression, and post-traumatic stress disorder (PTSD) over a 15-year time period in veterans with IBD was shown to be increasing. 

• High dose flu vaccinations are associated with better response to vaccine in people receiving anti-TNF biologics. 

• A Canadian based study in 2016 estimated the cost of IBD, at $ 498 bn for Crohn’s disease, and $ 377 bn for ulcerative colitis. Pharmacy costs were shown to have the largest incremental cost. 

• Direct healthcare costs attributable to IBD have more than doubled over 10 years between 2005 and 2015, driven mostly by increasing expenditures on biologic medicine. 

• The Crohn’s and Colitis Foundation’s Cost of IBD Care Initiative also reported the cost of IBD care to be high. From a study with over 50,000 people with IBD, the average direct costs per year were $ 22,987 per person. Costs per year increased significantly from 2013, driven by the cost of biologics, opioids, steroids, and emergency department use, among other factors.

• High deductible health plans do not decrease costs and are associated with delays in essential care.

Best clinical abstract research presentation - winner of the best clinical abstract

Shintaro Akiyama looked at contributing factors for fistula development in people with IBD treated with proctocolectomy (surgical removal of the colon and rectum), with ileal pouch-anal anastomosis (J-pouch surgery). He found that pouchitis (inflammation of the lining of a pouch created during surgery) can develop in up to 70% of people with IBD after J-pouch surgery. He also highlighted that not all instances of pouchitis are the same, which has led to the development of the Chicago Classification of Pouchitis. He concluded that deep inflammation of the resected colon is a specific predictor for fistula formation in J Pouch, and so people with this may require closer monitoring by their healthcare teams.

Pregnancy and IBD - The PIANO study

Uma Mahadevan talked about the 12-year PIANO study, which included over 1700 pregnant women with IBD in the US. The study is still ongoing and still recruiting those on biologics or small molecules. Of 1490 women with a pregnancy outcome, the average maternal age at delivery was approximately 32 years, with a total pregnancies averaging 2.1. The womens’ disease duration was around 8.3 years, with 62% having Crohn’s disease, 36% having ulcerative colitis, 2% having undifferentiated IBD. Most of them were on infliximab, followed by adalimumab, certolizumab, golimumab, natalizumab, vedolizumab, and ustekinumab. 51 women had multiple biologic exposure (mostly with other anti-TNF biologics).

She concluded that exposure to biologic, thiopurine or combinations of treatment during pregnancy was not associated with increased negative maternal or fetal outcomes at birth or within the 1st year of life. Disease activity of the mothers is an independent risk factor for spontaneous abortion, and preterm birth increased the risk of infant infections.

Healthcare professionals should continue biologic and/or thiopurine therapy throughout pregnancy and lactation, given no evidence of increase in harm from drug exposure and the clear association of active disease with side effects.

AIBD 2020: The Role of FMT in IBD

I attended the Clinical Breakout Session titled ‘Role of FMT in IBD’ chaired by Dr Jessica Allegretti. On the panel were Dr David Binion, Dr Alan Moss, and Dr Monika Fisher.  

Fecal Microbiota Transplant, or FMT, is one of the emerging treatment options for IBD. It is considered as an effective treatment option for C.Difficile infections. As around the world, several clinical trials are underway in India as well. It can be an attractive option for patients in a country like India, where biological therapy is expensive and not covered by insurance. As a result, patient interest in FMT has increased considerably in recent times. 

Although the session was not aimed at a patient audience, I absorbed a significant amount of information that can be useful for patients. Some of the key points to note as a patient were:

• A C.Difficile infection (CDI) is very destabilising for someone with Inflammatory Bowel Disease (IBD). Even patients who have been in deep remission for years can suddenly experience flare-ups post a C.Difficile infection. Hence, it is of utmost important to treat the infection as early as possible in patients with IBD.

• Patients with IBD have a 50% chance of recurrence of C. Difficile infection post-treatment with a 10-day Vancomycin course. 

• COVID has impacted the availability of FMT as a treatment. 

• IBD therapy may need to be ramped up post a CDI, but high-dose steroids should be avoided. 

• Diet can be considered in some regards as a prebiotic and influences the microbiome, which can have significant effects on the clinical course of a patient.

• Patients with mild disease (ulcerative colitis specifically) benefit the most from FMT.

• There is very little data to support the usage of FMT for the treatment of patients with Acute Severe ulcerative colitis. 

• For some patients with mild-to-moderate Crohn’s/colitis, FMT may be beneficial.

• FMT is not yet FDA approved for the treatment of IBD in the absence of CDI. It has to be done in a clinical trial setting.

• FMT can be done for patients with internal pouches as well. The success rate is almost the same as for IBD patients without a pouch.

• Colonoscopic delivery of FMT seems to be more effective and provides the best results.

• Retention of donor material can be an issue for patients. The therapy still works even if some material comes out.

• Sometimes, patients can be sedated to take a small nap post the procedure to avoid loss of material.

AIBD 2020: Clarifying Complications of Therapy

One of the sessions I delved deeply into on the first day of AIBD was “Clarifying Complications of Therapy”, which began with a presentation by Dr. Laurent Peyrin-Biroulet, MD from Nancy University Hospital, on malignancy (cancer) in IBD patients. Following Dr. Peyrin-Biroulet, was a presentation on infectious complications in IBD, by Dr. Edward V. Loftus Jr., MD from the Mayo Clinic.

Before delving into the details of risks and complications associated with immunosuppressive therapy, let us first outline which factors play into how immunosuppressed an individual is. First and foremost, not every patient with IBD is inherently immunosuppressed, rather only those who are on immunosuppressive medications fall into this category. Even amongst patients on the same drug, the following factors alter the amount of immunosuppression an individual may experience:

• Increased age

• Malnutrition

• Comorbidities

• Medications

• Hospitalization

In other words, if two patients are both on the same immunosuppressive drug, but patient A is 20 years old with no comorbidities, and patient B is 60 years old and has COPD, patient B may be at a higher risk.

During the presentation on cancers in IBD patients, Dr. Peyrin-Biroulet noted that the focus was on anti-TNF drugs specifically, and that no robust data was available for other immunosuppressants. I want to make note of that, because this data does not speak for all IBD treatments, or all IBD patients.

Three of the cancers that were discussed in this presentation were skin cancers, lymphoma, and cervical cancer, all of which are associated with heightened risk in IBD patients who are immunosuppressed. That being said, Dr. Peyrin-Biroulet noted certain measures physicians can take to mitigate these risks as much as possible. I’ve created a simplified outline below for each of the cancers discussed:

Skin Cancer

1. Risk: there is an increased risk of non-melanoma skin cancer in IBD patients.

2. Prevention: use of sun protection and skin surveillance.

Lymphoma

1. Risk: there is a risk of lymphomas in IBD patients who are immunosuppressed.

2. Prevention: avoid more than 2 years of combination therapy in young males, and for older males who have tested positive for Epstein-Barr in their past, restrict the use of thiopurine drugs such as 6-Mercaptopurine (6MP), and azathioprine, as they may pose a greater risk of lymphoma in the patient.

Cervical Cancer

1. Risk: there is an increased risk of cervical dysplasia and cervical cancer in IBD patients.

2. Prevention: HPV vaccine is recommended to protect against HPV, which may lead to cancer.

In addition to Dr. Peyrin-Biroulet’s presentation on cancers associated with IBD and immunosuppression, Dr. Loftus spoke to the increased risk of other types of infections among immunosuppressed IBD patients. This included an increased risk of fungal infections, an increased risk for herpes zoster, and the importance of testing (and if necessary, treating) tuberculosis prior to starting anti-TNF therapy. 

In the presentation, Dr. Loftus included a table that I found interesting and informative on determining whether or not to pause immunosuppressant treatment for IBD during an infection, in addition to treating the infection. I’ve simplified the table below, and added examples to the different drug classifications. Please note to consult with your doctor before making any changes to your actual drug treatment plan.

For Thiopurine (Including azathioprine and 6-mercaptopurine [6MP]):

1. Viral: you may need to stop immunosuppressants

2. Bacterial: stop, then individualize plan

3. Fungal: stop, then restart when cleared

4. C.Diff: continue

For Anti-TNF (Including but not limited to infliximab and adalimumab):

1. Viral: probably OK to continue (exception of Hepatitis B)

2. Bacterial: stop, then individualize plan

3. Fungal: stop, then restart when cleared

4. C.Diff: continue

Anti-Integrins (Including but not limited to vedolizumab):

1. Viral: continue

2. Bacterial: continue

3. Fungal: continue

4. C.Diff: continue

An Ecosystem of Advocacy

My fellowship at CCYAN is coming to an end. Coincidentally, I have felt short of ideas these few weeks. I’m writing this one late, partly because it has taken me a long time to fully recover from COVID, and partially because I was torn inside my head about what I wanted to say. Lately, my brain has felt like a cauldron with a stew of thoughts in it. I had been hiding safely in my home from COVID, but now that it got me, it’s time for me to go back to my pre-covid life.

At the time of writing, I’m about to fly back to my campus. I had deferred my exams for the previous semester hoping that the pandemic would settle down by Sept/Oct. That did not happen. I have lost a whole academic year. I now need to work twice as hard to get my degree. The pandemic has also doubled my healthcare expenses, and hence I need to work more than usual, which decreases the time I can devote to my academic work. I have also not been to the doctor in more than a year. After a long time, I have once again felt the fear of things going wrong and beyond my control.

One of the things that I’ve come to realise and feel in recent days is how isolating IBD can be. IBD symptoms can vary from person to person, but when you look at those symptoms in conjunction with life experiences, every one of us is on a very different path and fighting a very different battle. It is true for every chronic condition. One community, one group, can never be the answer. We need multiple communities composed of people with diverse experiences to thrive and work with each other. An ecosystem. Without that, there’ll always be someone feeling alone in their experience.

I have always been someone for whom repressing is more comfortable than expressing. Does that not make me inadequate for the job of a patient advocate? Repressing pain and trauma has enabled me to survive. The goal of life shouldn’t be to survive, though. I have compromised on every other aspect of my life so that every day I can do enough to stay on track with my goals and ambitions. Some compromises must be made, but some are forced upon by circumstance and external agents.

In the ancient world, people believed that the sick were cursed by gods. Treatment consisted of praying and giving a sacrifice to the gods. The ill thought that they were cursed. They were killed when the gods didn’t pay any heed to prayers. You might think times have changed, but they haven’t. Too many of us have been told that our illness is punishment for our past sins. Many of us believe it also, so much so that a patient recently said to me that their experiences didn’t matter because they were not good experiences. India is a country where the concept of “invisible disability” is yet to be introduced. In such an atmosphere, people with chronic conditions and invisible disabilities are forced to compromise. After all, it’s practical and easier for everyone. Any ill person that “complains”, does not radiate positivity and inspiration is useless. The attitude in general, towards sick people in my country, reminds me of the phrase - “Ignorance is bliss.”

So if you’re chronically ill - not only do you have to make compromises in various aspects of your life, not because they should be made, but because it’s comfortable for everyone else, you also do not have access to communities where you can share your frustrations, your experiences with people facing similar, if not the same set of circumstances.

Some say that we should not highlight our disability. Some argue that many people are successful with Crohn’s Disease or Ulcerative Colitis, but they do not talk about it. Talking about it is just asking for pity. The people who are going to succeed will succeed despite it. Such thinking patterns stigmatise our illness and strengthen the notion that patients are the problem, not the illness. Patients are not doing enough; others are.

As with everything else, things will not change unless we accept that there is a problem and that there is a real need. The irony in India is that those with voices do not have the need, and those with needs do not have a voice. There is an urgent need to build communities that provide support and advocate for better solutions.

I often feel that I say the same things every month, but I also feel that these things haven’t been said enough times. So to my fellow patients and the people who understand our needs - keep speaking up and keep talking, until our voices are too loud to ignore.

Thank you. Stay safe.

Finding the Moments That You’re Thankful For

I became obsessed with the card game Hearts during my sophomore year of college. Simply put, if you have the least points when someone else reaches 100 points, you win the game. You do this by avoiding the hearts suit and the queen of spades. Each heart is one point and the mighty queen of spades is 13. However, if you end up with all of the hearts and the queen, you can shoot the moon, giving you zero points for that round and giving the other three players 26 each. And sometimes you shoot the moon after starting out with a hand that was destined to be a horrible round. 

November always rolls around and I get excited about Thanksgiving with family in addition to the other things I love about fall - the leaves, hiking, cool runs, coffee on the porch, football, you name it! But, more importantly, November is a time for me to reflect more closely on my year...what’s been good, what’s been bad, and what goals do I have for myself now? It’s almost laughable to say that in 2020, but I do have much to be thankful for. I think about how, almost five years ago, I was just starting to get the hang of living life with ulcerative colitis (UC), but I was probably bitterly reflecting back on the hand I was dealt that year. 

I wish I could go back and comfort 23 year-old me and let her know things would get better. That the hand of mismatches wouldn’t seem so awful in a few years. That, in time, she’d be thankful for the support that encouraged her to do something with all of her frustration, anger and sadness when she was ready. Thankful for her own grit in deciding to share her own story to educate others and provide a safe space for anyone who didn’t feel seen or heard. And that was only the beginning - listening to patient after patient while on clinical rotations as a physician assistant (PA) student, truly hearing their stories reminded me of the providers that heard me when I had mild, easily dismissable symptoms, but ones that were way out of the ordinary for me. I’m now thankful that I’ve been an IBD patient myself and that I can use this experience to truly empathize with others going through a similar diagnosis one day.

I’ve also been so thankful to learn about my CCYAN co-fellows’ experiences; if you’ve read or watched any of our content this year, you know how amazing and inspiring they are. Their stories help me grow as an advocate, but also help me reflect on some of my darker memories of my IBD journey. For some, you may not remember because you were so young, and for others it may be all you’ve ever known. Yet, for another group, the line between pre- and post-diagnosis could be so sharp that it now demarcates two distinct periods of your life. I know some have shared that it is almost too painful to look back at certain memories during life with IBD, and that’s ok. However, I think the same people would agree with me that there’s still a light brightening that darkness. There’s still a new sprout growing from those ashes. The physical and mental pain we have all lived through serves as a stepping stone for strength. Just as we can look back and see the growth that came from the positive experiences we’ve had, we wouldn’t be where we are now without our painful experiences either. 

Lastly, I realize you may not be at a place where you are ready to reflect yet, but I hope you will get to a point one day where looking back on your IBD journey can be helpful and perhaps cathartic for you. I’ve learned so much in less than 5 years - about myself, about others, and from others - that I’ll carry with me for the rest of my life. I will be a more empathetic PA in my career because of it and will always strive to be an advocate for IBD patients. Even though I initially looked at the hand I was dealt and my heart sunk, I think I found my own way to shoot the moon. 

A Capital Mistake

Disclaimer: These are my views and observations, based on my experience with online Inflammatory Bowel Disease support groups in India.

 “It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts.” 

~ Sir Arthur Conan Doyle, Sherlock Holmes

When I began my fellowship at CCYAN, I was a stranger to patient advocacy. I had a very vague idea of what the word meant. A couple of months later, I began a local initiative to explore the possibility of building a patient advocacy group for the Indian IBD (Inflammatory Bowel Disease) population. I started by imitating and trying to replicate the actions of existing advocacy groups in the US and the UK. However, it didn’t work. I soon realized that there is a larger fundamental problem that has to be addressed before I speak up for anything. It is the problem of patient education and health information. 

Patients in India are far less aware and informed about their condition than patients in the developed nations. A higher rate of illiteracy, language barriers, lack of counselors, and short consultation times are major reasons. While it may seem that this problem can be rectified easily by disseminating educational materials among patients in various ways, the reality is that the void created by a lack of information is not a void at all. My observation is that the void has been occupied by incorrect and unsubstantiated information that prejudice a patient’s mind when it comes to learning and accepting correct, evidence-based information about their condition. This “defect” in the knowledge that a patient has about their condition can lead to deterioration of their condition and, in some cases, prove to be fatal. 

The lack of patient education itself is a mechanism through which misinformation spreads. Existing patients with defective knowledge pass it on to the newly diagnosed. In the absence of rectifying sources/agents, such information can propagate and spread among groups of patients - very much like a virus. One of the places where things go “viral” is social media. The networks that connect us all are one of the pathways through which information that has no factual basis propagates.

In India, we have a small, but a fair number of Facebook and WhatsApp groups of patients suffering from Inflammatory Bowel Disease. Members of these groups exchange information daily on various topics - meds, diets, exercise, doctors, etc. I observed that there is a small subset of people, not always, but usually the creators of these groups that influence these discussions. This subset of people also acts as a source of “information” and “knowledge” for the other members.

In my experience, the majority of the discussions revolve around food and alternative treatments. Sporadically, there might be a discussion on the unaffordability of biologics, the struggle of young adults with the condition to get a job, study, or get into a relationship. However, these discussions are limited to a few comments, and that’s it. Several topics are not discussed out of shame. Erectile dysfunction because of IBD/surgery, anal dilation, rectovaginal fistulas, marital problems, reproductive issues - these are just some of the few issues that people seldom discuss in these forums. A support group is supposed to be a safe space, but these groups don’t feel like one to me. Nobody feels safe about opening up on problems that affect them very much because of fear of judgment and shame. The “advocates” too, rarely take any initiative to remove the stigma and taboo. We, the patients of India, with our ignorance, play a major role in keeping the taboo and stigma associated with IBD intact. The creators and moderators of such groups rarely take care to protect the newly diagnosed from misinformation. Many even float their own theories and post uncorroborated information. 

A year ago, the mother of a 31-year old patient called me. She was crying. She asked me to visit her son and counsel him. I received her call a couple of weeks after I had moved to Bangalore for my graduate studies. I was unsure, but I went to her home and visited her son. He was lying down on the bed, with a heavily bloated stomach and a hot pack on his abdomen. I started talking to him. He told me that he had been diagnosed with Crohn’s disease 7 years ago. Initially, he was prescribed Pentasa, which he took for two weeks only. He did not feel that he was responding to the drugs, and hence, he stopped taking the medication without consulting his doctor. He never visited his doctor again.

On the advice of “advocates” and “experts” on the internet, he began buying and consuming naturopathy products, special brands of water with a certain pH, and many other products that he claimed were alternative medicine. He was importing many of these items. When he ran out of money, he borrowed money from people on the pretence of treatment and bought the products. He hadn’t seen a GI in 6 years! He showed me the results of a 3-year-old imaging test. It mentioned internal fistulas. He could not even stand up. His old mother was caring for him. Sometimes, when he would be in a lot of pain, his relatives would take him to the emergency room where he would be advised immediate surgery. He had been refusing the option of surgery every time. I spent an hour trying to talk him into surgery and explaining that an ostomy is not the end of the world. He wouldn’t budge. I returned - disappointed and angry. A few days later, I received a message from him. It said that he did get a temporary ostomy, but he’ll be going back to naturopathy to save his colon. I wished him all the best and urged him to act responsibly. I never heard from him again.

This person was ready to die instead of accepting treatment from a doctor in a structured and safe manner. He spent his time lurking on the internet in such “support groups,” where he learned various expensive and ineffective remedies for his condition and went on to irrationally and blindly pursue them. He could have avoided the surgery, had these very “advocates” told him to get back to his doctor. 

Let me clarify here that I’m not speaking against the use of alternative therapies, some of which in recent times have been supported by some studies as a good supplementary treatment option. I object to disseminating unsubstantiated information in a manner that evades judgment, analysis, and scrutiny. Science, rational thinking, reason, is how humanity has come so far. It’s the gift we have—our capacity for reason and imagination. 

Modern medicine does not fully understand inflammatory bowel disease and many other conditions. This, in turn, has become an opportunity for some people to form and present their theories which are either completely unscientific or based on some science, but completely opaque to scrutiny. These baseless theories and cures are dangerous. Desperate patients often end up losing a significant amount of money, time, and health. Such theories and their preachers often evade accountability. 

We can only fight something well if we know what we’re fighting against well. I feel that most IBD patients in India are fighting blindly. The larger population of IBD patients in India faces a wide variety of problems compared to the handful of patients who have the luxury to engage in comfortable discussions in closed spaces on social media. Those problems are rarely discussed and confronted. 

Inflammatory Bowel Disease is a complex disease. Good communication is the first step towards helping patients navigate the physical and emotional roller coaster that comes with having an illness like IBD. We must develop a culture of sharing medically verified and factual information amongst ourselves. It’ll help create a community where everyone is aware and informed. The newly diagnosed, who are often confused, shall receive appropriate guidance and support. Only then can we begin to speak up as a collective voice for matters that can help improve the quality of life of Indian patients with Inflammatory Bowel Disease. 

That’s all from my side this month. Stay safe :)

The Difficulty of Finding a Treatment

For the ordinary individual, health is accepted as a given. It’s a part of life that mostly runs in the background like a minimized window on a computer. It’s always running, keeping us alive, and impacting our physical and mental states. Yet again, for most people, it’s rare to directly confront it on a minute to minute, or even second to second basis. Instead, it emerges at the forefront of life either by active and deliberate personal choice, or when something goes wrong. When a previously silent computer program running in the background becomes unresponsive, what was once insignificant becomes a major issue. To a greater extent, when that disruptive program causes our computer to crash and lose all of our work, it’s catastrophic. In a similar way, the typical individual goes to the doctor only on the occasions when their health is compromised by infection, injury, or other issues. Plus, when our health is stable and we are well, the changes we make, like starting a fitness regime, new diet, or implementing mindfulness strategies to our lifestyle, are done by choice.

However, when you live with a chronic illness, health management becomes significantly more complex. For one, chronically-ill patients often do not have the benefit of having a lifestyle defined by stable health. Chronic illness is by its very nature unpredictable. Diseases like Crohn's disease and ulcerative colitis revolve around periods of peaks and valleys - remission and flares. Once again, living with a chronic condition transforms the nature of managing health. The process of searching for, utilizing, and adjusting to a treatment for inflammatory bowel disease, or other chronic conditions, is one of trial and error. Unlike treating the common cold or a broken bone, the path to recovery is much less clear cut. Personally, I have tried various medications across a variety of different medication classes only to discover that they were not effective for treating my particular case of ulcerative colitis. It takes constant monitoring of your symptoms, and a commitment to embracing change to successfully navigate the healthcare system as a chronically ill patient.

It’s a difficult reality that many patients struggle through countless medications, clinics, and treatments before finding relief. Simply put, when you live with a chronic illness, your health is never certain. It’s unlike managing short-lived, common conditions, because there’s no clear timeline. Patients are forced to adjust to a new normal. This new reality is a reality where an individual must persist despite burnout, despite anxiety, and despite certainty. It involves significant sacrifices in one’s lifestyle, and even identity. Confronting health is no longer a special event or a choice, instead it’s a part of the daily routine. I believe this is part of why accepting illness is full of so many emotions, and why fatigue can easily take over. Everyday, patients are fighting a difficult, and often invisible, battle while living normal lives full of other responsibilities. The process, and the challenges, involved with finding and managing treatment do not make this balancing act any easier. Thus, it’s important to recognize the difficult, frustrating, and exhausting experience of patients worldwide. After all, despite illness, set-backs, and struggles, we persist to live lives as friends, artists, and advocates.

How My Mental Health Was Affected by IBD

Mental health has been on my mind a lot lately. From hearing it in relation to the COVID-19 pandemic, to having conversations about the need for more resources for IBD patients, to dealing with my own experiences with depression and anxiety - mental health resources are perhaps one of the most underrated and underfunded sectors of healthcare. I realize this as I’ve gotten older, immersed myself in the medical field, and as I have utilized it for my own mental health after being diagnosed with ulcerative colitis (UC) in 2016. 

I bet many of you have also dealt with IBD affecting your mental health whether you realize it or not. For most of us, we were the only person we knew who had IBD at the time we were diagnosed. Some of us may not have even heard of it until we were told after our colonoscopy or endoscopy. The world around you suddenly feels a lot busier and bigger, and you feel very small and alone. Alone, wrapped up in your thoughts, your pain, your exhaustion, your fear. None of us asked for this. What did we do to deserve this?! In the days after my colonoscopy, this thought permeated my mind and I wanted to curl up in a ball and wish it all away. 

But, you can’t do that when you are a busy pre-med student working full time and taking classes! We are expected to stay strong and keep up our front that says “Everything’s fine,” when, in fact, we’re not. I had great people to talk to and that would listen to me, but I still went through a mourning process. I mourned my life before when I thought I “just had a sensitive stomach.” I mourned that fact that my diet would probably change and change again and that I maybe would have to be on immunosuppressive medication. I dreaded the future conversations that would come up when someone would ask why I had to go to the bathroom so much or why I couldn’t eat or drink something. Really, everything’s fine…

But, it’s not. CHRONIC is a word that I hoped never to hear in regard to my medical history. We now have a new label that we must carry for the rest of our lives, and it’s anything but predictable. We have to explain this diagnosis so many times we feel like it might actually define us. The reality of my UC diagnosis began to truly sink in and anxiety began to seep into my daily life. My energy and concentration was poured into reading about UC, finding a better “diet”, looking for tips on how to achieve and stay in remission, and finding some kind of outlet for my anger and frustration.

Honestly, I should have given myself a little more time to process and try to seek the help of a mental health professional. Now, I think, I should’ve thought about my IBD and mental health together rather than separately. I let myself have a little time to mourn my UC diagnosis, but I thought I needed to be strong and keep my diagnosis to myself, much like others had before me. If we don’t look sick, perhaps no one will know. Even when we try our best to be strong and adapt to this normal, our mental health often still ends up suffering. 

I think it would make such a positive difference in the lives of so many if we are all equipped with a medical and mental health treatment plan after being diagnosed with IBD, because the fact of the matter is that the mental health symptoms are just as debilitating as the physical symptoms of IBD, and they’re often intertwined. We need this kind of support as we manage our diagnosis - which sometimes can land us in the hospital or needing major surgery. I can’t speak to these kinds of experiences, but they can be traumatic in their own ways. How many failed medications or pain does one endure until they receive a potentially life-changing surgery? Thinking of the mental health hurdles that my co-fellows have dealt with and shared so vulnerably leaves me in awe of their strength. When they share what they have lived through, it also makes me sad that there was not adequate mental health services available to some of them when it could have offered an outlet for some of their pain.

Even now, almost 5 years out from my diagnosis, I take medication for my depression/anxiety and have re-established a relationship with a counselor that has experience in treating clients with chronic illnesses. I still go through the peaks and valleys of life and IBD, but, now, I’m better equipped to handle the lows when they hit or when a flare affects my mood and interest in doing things. I want the mental health support that has been so instrumental to some of my healing to be more accessible and affordable for those with IBD in the near future. 

I hope speaking candidly about mental health and sharing some of these reflections helps you feel less alone and more validated in what you’ve been going through. The process of untangling all of these emotions is normal when grappling with a chronic illness diagnosis and what that means for you and those you love. Everyone processes major life changes and trauma differently, but don’t be afraid to ask about mental health services when you see your GI or primary care provider. Finding the right mental health support could be the treatment you never knew you needed. 

The Acceptance and Struggle of a Childhood IBD Diagnosis

Being a kid is supposed to be a whimsical experience that one treasures and wants to have back. We long for those easier, good old days. But, when you are diagnosed with Inflammatory Bowel Disease at the age of 8, those childhood hopes can get lost. 

When I was diagnosed with Crohn’s disease, I did not know what it was. I remember telling my friends and them thinking I kept saying “Crow’s disease” (granted, I did have a speech impediment). Honestly, even I couldn't fully understand what was going on with my body. I felt alone, isolated, and trapped in my body. I felt frustrated because of the lack of support I felt from my peers and the lack of communication that I could provide to the people in my life. I felt confused as to whether I was being too dramatic or if I was really as sick as I thought I was. It becomes hard to trust your body and self when—for so long—your symptoms are not understood. Still today, these emotions can flood my body when I think about my diagnosis or even have to deal with unrelated health procedures. The body has a mysterious memory intact.  

 In response to these events, I have found that I tend to forget things related to it. To be honest, pretty much everything—specifically during my diagnosis phase of life—is most often a blur. Being diagnosed as a child really made me deeply struggle with the faults of reality and mortality and sickness early on. My body is easily triggered by hospitals or doctors. Whether my response bodily or emotional, I cannot immediately make sense of it all at the time. 

I often struggle making sense of my diagnosis. Being diagnosed at such an early age, the disconnect between what was real and fake is hard. How could it have such a constant effect on my life when I forget most details surrounding it?  It can be hard when you are surrounded by so many people who have such an understanding of their diagnosis and can write such beautiful lessons they have learned when most days I do not even remember what age I was diagnosed at. It is so easy to compare journeys, thinking your IBD is not as bad as the next, or that you feel alone with it. But what we can hold is that we don't have to be positive all the time. It can be painful and we can hold both the pain and the lessons we have learned. We do not have to make sense of our diagnoses. There does not always have to be a bright side to everything and that does not make you less of anything. Everyone has their bad days, whether you see them or not. Just remember that it is okay to struggle, it's okay if not everything makes sense, and we are so happy to have you here.

Planning with Crohn's

Stay with me for this one – I promise it won’t be as boring as it sounds! If you immediately switch off when you hear the world ‘plan’, or indeed ‘regime’ or ‘strategy’, you’re not the only one! There are, however, benefits to planning when you live with a chronic condition like Crohn’s Disease – and more importantly, if your plans become routines, then they’re more likely to become second nature, and you’ll find yourself doing those tasks subconsciously. Here, I will share some of my planning tips, which you may just find helpful. It’s all about finding what works for you so that you can manage to fit in all of the things you want to do, despite your health condition(s).

Smartphone apps

There are tons of smartphone apps available to help you keep lists, plan activities and so on! I keep it fairly simple, making use of macOS/iOS Calendar, Reminders and Notes (or the same apps on other operating devices). The calendar function is ideal for noting down all of your appointments. This helps for looking to the future, but also looking back at when and where different events occurred. The reminders app is an absolute lifeline for me. I have separate folders for different activities (e.g. university, health, work, voluntary commitments and so on). I add in activities, and a date/time (or location) reminder. This definitely helps me to keep track of everything that I need to do. If I didn’t, I would definitely forget! From a health tracking perspective, this is ideal as a reminder for booking in my next vitamin B12 injection which takes place every three months, as well as for when I need to ring up my doctor to arrange routine blood tests, when I need to self-inject my treatment, and when I need to order my repeat prescription. You may think that you’ll remember everything, but when you are busy with ‘life’, on top of ‘brain fog’ which many of us can relate to, it’s easy to forget. I know I have done that in the past, particularly when it came to self-injecting my treatment. I would remember that I need it on Tuesday for example, which would be the two-week dose period. However, I would have a busy day at college, would forget when I came home, and then in bed at night, I would suddenly remember, and think ‘I’ll have it tomorrow’. But then tomorrow became the weekend, and before I knew it, it may be a whole week later and I still hadn’t given myself my injection. I knew that was no good, but I just needed to do something about it – which I did!

Finally, Notes are brilliant! Again, I have different folders for a whole variety of different items. ‘Health’ is one of those. I use notes for keeping track of how I have been feeling, as well as for noting down points to discuss with my healthcare teams. I also use notes to keep track of discussions held with healthcare professionals, either face-to-face or over the phone. It’s just another good way to have information at your fingertips to help with your care, while the discussions are still ‘fresh’ in your head. 

Scheduling in rest days

We all know what it’s like to live with a condition like Crohn’s – we have so much robbed away from us. As a result, when you are feeling on the better side, you will naturally try to fit in everything that you can. I know that I have been there! Though sometimes, it really doesn’t pay off. That’s why I try to give myself time and space to just ‘do nothing’ – because I know that’s what my body needs. In pre-pandemic times, I would avoid booking in too many back-to-back travels, so that I always had some time to recover. In the current climate, I do my best to block off certain days where I’ll have meetings, keeping overs ‘free’ to do work at my own pace, and also take it easy. It’s all about being in control, as much as possible, so that you give your body (and importantly, your mind) the time and space to breathe.

Leaving the house with everything that you need

Phone. Wallet/purse. Keys. Mask! The list goes on – but it’s really important to have everything that you need to hand. As well as the usual items that most of us require these days, I also have supplies in my backpack and car for every eventuality. This includes painkilling tablets and gel, anti-spasmodic tablets to help with cramps, laxative tablets if I notice a blockage, anti-diarrhoeal tablets if the opposite happens, lactase enzyme to help me digest products containing lactose and the RADAR key to access locked accessible toilets. This list can go on and will depend on personal circumstances. I always find it best to have everything stored in one bag, so you can ‘grab and go’. It may feel excessive, but you will thank yourself later on when you’re not caught short.

Knowing your triggers and avoiding them

Although everyone is different, we all have some kind of trigger which can worsen how we feel. For me, I know that stress is a key trigger for worsening symptoms. That’s why I try to minimise stress as much as is practically possible – although that is much easier said than done! That’s why you’ll generally see me planning to do work well in advance of deadlines, for example, and seemingly ‘being on top’ of everything. In reality, it’s much harder to do, and I do find myself rushing for deadlines still – but at least I have minimised that as much as is practically possible. I am also my own worst enemy. As a perfectionist, I place huge amounts of pressure on myself to succeed and to do everything to the very best of my abilities. While it’s a good quality to have, it isn’t when it impacts on your health. So, it’s really important to be kind to yourself, and to re-evaluate your workload if you find yourself totally swamped and feeling ill. Nothing is worth more than your health.

Do you have any other planning tips which help you to live with your condition whilst getting through life? Let us know in the comments and on social media! 

There is No Right Way to Live with a Chronic Illness

I saw a quote the other day that said “There is no right way to live with a chronic illness,” and I immediately knew I needed to talk about it. Honestly, I want to get it tattooed on my forehead and shout it from the rooftops because everyone needs to hear it. 

“Oh, you have a chronic illness and you eat that?” 

“Oh, you have a chronic illness and you drink that?”

“Oh, you have a chronic illness and that’s how you workout?” 

The answer to these questions?

There. Is. No. Right. Way. To. Live. With. A. Chronic. Illness. 

There is no one right way to live. Period. 

Unfortunately, yet realistically, there can be  judgement within the chronic illness community at times. The same can be said for life in general. 

And here’s what I have to say: IBD, and everything in life, is so incredibly individualized. What works for one person might not work for another. What works for me may not work for you. What works for you may not work for your neighbor Susan or your cousin Jack and vice versa. 

Nobody should ever be shamed or put down or made to feel inferior or less than because of the decisions that they make in doing what’s best for THEM.

To think that there is one set way to live, one set way to eat, one set way to move your body, one set medication to take or not to take is to ignore an entire world that exists outside of your own.

When you really think about it, how cool is that life exists in so many different forms? How fascinating is it that I experienced this day differently than you? How awesome is it that we can find common threads that weave us together while still being uniquely ourselves? 

So, the next time someone hits you with, “Oh, you have *insert condition here* and you do *x,y, and z*? I could never.” 

Tell them how happy you are that they have found what works for them, how happy you are to have found what works for you, and how beautiful it is to simply be human.

Explaining Chronic Pain

This article is sponsored by Gali Health.

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One of the most troubling and tricky feelings of the human condition is pain. It’s the body’s warning signal that something is wrong. It always seems to show up unexpectedly. It’s the world’s worst party guest. Seriously, it could at least bring a party gift, or an extra bag of chips and salsa to share. Instead, it interrupts the flow of midnight ragers and days of routine alike. Pain is the ultimate consumer. It takes, absorbs, and swells, without giving any of itself up. To make it even more complicated, pain comes in more hues, flavors, and shapes than can be counted. Pain is a universal experience, but the experience of pain is unique to each individual. 

There is round, smooth, aching pain that rolls around the body all day. There’s sharp, jagged pain that cuts, stabs, and leaves a metallic taste on the tongue. There’s pain that shapeshifts. It howls like a werewolf, then sizzles like the sting from an insect. I could go on, but the list of the types of pain is again endless. That said, living with a chronic illness like IBD means tasting an entire buffet’s worth of pain types. Despite the fact that pain is so specific, and individual, people often try to measure and compare pain. As a chronically ill individual, it can be frustrating to have your pain compared, and rationalized by others. For instance, people will often compare the abdominal pain from ulcerative colitis, or Crohn’s disease to a stomach ache. In reality, chronic pain is much different from everyday pain. 

When the pain from chronic illnesses is compared to pain from other illnesses, a large part of the context is ignored. Patients with chronic illnesses and pain have to confront pain oftentimes on a daily basis, and manage pain oftentimes without a totally effective treatment. The pain from a stomach ache, or a stubbed toe will eventually fade, and if it doesn’t, there is generally an effective treatment available. With a chronic illness, no such treatment necessarily exists. There is no timeline for recovery from the pain. Instead, it can be endless and unclear with multiple trials of various treatments required in order to find relief. In essence, chronic pain has no end deadline.

Despite this, the chronically ill often live normal lives everyday. Patients and pain sufferers go to college, go to work, and even to social events despite their pain. It’s especially important to remember this, because for all of its flavors, pain can be quite invisible. Dealing with pain is a challenge, and a burden, but millions of people around the world surmount the obstacle of pain everyday. Accommodations for patients make living with this weight easier, and enable us to be more active members in our communities. Still more work needs to be done to improve the quality of life for those dealing with pain. The compassionate way to treat the chronically ill, is the most inclusive way and the way that eliminates the disadvantages of the disabled. In the future, I hope all pain is treated with the utmost consideration and care for the individual. After all, if that was the case, there would be a lot less physical, and mental pain in this world.

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This article is sponsored by Gali Health

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.

What to Expect When a Loved One Gets Diagnosed with IBD

Navigating an IBD diagnosis is not easy. It can be messy and emotional and very tiring. The person diagnosed with IBD will be feeling many emotions, probably all at once. But it’s not just hard on the diagnosed individual; it can be very hard on their loved ones as well. It can be difficult to figure out what to expect and what to say and how to act when you find out someone was diagnosed with Crohn’s disease or ulcerative colitis. Hopefully this article will provide some insight into what to expect when that diagnosis happens. 

The first few hours and days after your loved one gets diagnosed with IBD can be very confusing. You are processing their diagnosis, while trying to be there for them as well. While everyone processes it differently, there are likely some common reactions you can expect. Here are a few things to keep in mind:

• Be prepared to simply be there for them. Whether they want to talk about it or not; whether they want you to accompany them to appointments or infusions; whether they want someone to sit with them while they are sick. And even if they don’t want any of that, make sure that they just know that you will be there if/when they do. Be there for them when they are ready to talk to you. Tell them you are there if they need anything and be ready to back it up with your actions. There is nothing worse than empty words. 

• Be prepared for them to become experts on their own bodies. They will become very familiar with their symptoms and will likely know when something is not right. Learn to trust that. If they tell you they think something is wrong, don’t try to argue with it. 

• Be willing to learn with them. For me, I read up a lot on my diagnosis. I read others’ stories, I read articles, I read medical journals. And I wanted my friends and family to understand some of what I was learning. So, be willing to read the articles they send you. Educate yourself on their disease. Don’t be afraid to be educated. 

• Be ready for the hard days. The days when their medication isn’t working. The days when their Prednisone is making them miserable. The days when they are in the hospital. Not every day will be hard, but some will be. So be prepared when they come. Remind your loved one that it won’t last forever. 

• Also be ready for the good days! The days when they find out they’re in remission. The day when they try a food they haven’t been able to eat in a while and it goes well. The days when they feel like themselves. Just as the bad days come and go, the good days will come, too. 

• Be ready for the doctors’ appointment. Especially when your loved one is first diagnosed and they are working to get control of the disease, there will be a lot of doctors’ visits. There will be ER visits and hospital stays. There might be infusions they have to go to on a regular basis. They may or may not want you to come. Be ready to support them either way. With COVID, they may have wanted you to come and you may not be able to. If that’s the case, try to get creative with ways to make them feel like you’re there. FaceTime them, call them, text them. Do something to make them not feel so alone. 

• Ultimately, be ready for a journey. It isn’t always easy and there will be really hard days. But your loved one is now part of a community that is welcoming and ready to help when they want. There will be people that they can relate to and that can understand them in ways that someone without IBD can’t understand. Encourage them to reach out to people they see on social media. Encourage them to ask questions and not be afraid to speak up. The IBD community is a great one and people are always willing to help! 

Navigating a loved one’s IBD diagnosis can be a daunting thing. It is a lot to process and there is a lot of unknown. But by just being supportive and being attentive to your loved one, things will probably go a lot better than you expect them to. 

My IBD Life - Ode to Despair

I sat down to write this article with the intent of describing some personal experiences with my family and friends during a period of progressing sickness that eventually led to surgery. It’s very hard for me to segregate various aspects of that time. I was struggling on many fronts. Everything seems so intertwined. I probably would have managed better, if the only thing I had to worry about had been my health. Sometimes, I wonder if I could live through that again. The worst parts of that period were the nights. Serially failing medications had brought me to a point where I was living with severe chronic pain and total incontinence. Every night I would go through a sequence of muffled crying, screaming, and dancing, to wither and end up on the floor like a lifeless body. I did that deliberately to tire myself out and fall asleep. Every night it was the same routine. Some nights, the urge to end it all was too strong to resist. I dreaded the nights and took up a night job to cope. I thought if I forced my mind to concentrate on a job, it would help with the pain. I’d suffocate at work, and even had “accidents” at work, despite wearing diapers. Everyone around me in my home or outside was oblivious to what I did to myself in my room in the dark. My coping mechanisms bordered on the psychotic.  I would strangulate my body parts to make them numb. I would try to substitute the pain with another kind of pain by using an excessively hot pad. The pain was too much. The blood was too much. The nights were too long. The thing that hurt more than the pain was that every medication would make a mockery of my attempts to live. Early promising results followed by a rapid decline leading to increased symptoms were a pattern. At my core, I’m not a very hopeful person. My life circumstances have molded me into a deeply introverted and pessimist personality. My mind constantly tries to simulate everything that can go wrong and I try my best to put control measures in place. With this disease though, I was helpless. I read vehemently, but I was not a doctor. I forced myself to cultivate hope with every new medication. However, I always ended up dejected. Sometimes, I felt like a bloody soldier struggling to stand straight, kneeling on the ground against his sword, and waiting for all of it to get over.

As I started reminiscing those nights, my intents changed. I wanted to describe that cycle of hope and consequent despair to someone. It resulted in me writing a poem which I’m sharing here. 

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

They tell me the same things again and again.

And each time they say it, I believe them. 

I hide from my fears, behind a translucent curtain.

Weak ropes of hope bear the weight of my pain.

Soon it all comes crashing down to the ground.

And I see them again. The blood-hungry hounds.

Dread sets into me as they approach and surround.

Every inch of me bleeds. My screams resound.

And when it’s all over, I look down from the edge.

Frail, pale, broken, and defeated, after the rampage.

No antidote to my ailment, my soul feels caged.

Desperate, I am prepared to embrace the only escape.

“Stop! Don’t!” I hear a voice break the silence.

I recognize the voice. It’s them. Once again.

They praise my resilience. Talk about Providence.

Promise me there’s a reason for my existence.

They look to infuse me with hope and faith.

They tell me tales of the fierce and brave.

Why then I don’t believe what they say?

Oh! It’s because, soon after ...

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

There was a time when I tried to capture my pain in words. I was better at writing then. With time, the writing started to feel like a futile exercise. The nights never went away.  Instead, I now try to repress those experiences in some corner of my brain as I have done with other traumatic incidents that I have lived through.

My doctor once told me that there were only 2 patients other than me under his care, with a severity of disease that was similar to mine. I felt sad, but then I realized it’s a good thing that more people do not go through such experiences. However, I’m sure there are enough like me in my country which has a population of 1.3 billion, but I’m not sure if everyone is as lucky as me. The mental health of patients with Inflammatory Bowel Disease has never been a priority in the Indian Healthcare system. It’s time that we begin to provide holistic support to young adults with inflammatory bowel diseases to enable them to manage this disease better and come out of the experience with as little residual trauma as possible. 

Please stay safe and take care. See you next month. :)

IBD and Anxiety

When you are first diagnosed with Inflammatory Bowel Disease you learn quickly that the brain and gut function as one. They are deeply connected. Even if you don’t have IBD, you can look to feelings like butterflies in your stomach when you are nervous, excited, or in love. IBD has given me the superpower of identifying an instinctual trust of my gut. One thing you commonly hear when talking about how to manage your IBD is that you have to manage your stress levels. Since the brain and gut are so connected, the chances that a flare up will occur when you’re stressed are high. Truthfully, being able to manage your stress is a very privileged thing to be able to do and that’s a conversation that needs to be had. Outside forces and systems of oppression exist heavily in our world today. We are not functioning in a world that allows you to thrive and prioritize both your mental and physical health. For most people, there is always a tremendous amount of stressors that you cannot escape. Things like finances, unstable households, going to school, and working all cause a great deal of stress. 

Today, I want to specifically talk about how managing stress levels and IBD feels increasingly impossible when you have clinical anxiety and/or PTSD, as these are so often linked with IBD. 

I was diagnosed with IBD at a young age. My physical health was always prioritized over my mental health. This was more pronounced, I think, because mental health is not a thing that is necessarily often invested in for young children. As a child, it was very difficult for me to identify what I was feeling and what triggered these feelings. Specifically, with my anxiety, I did not know what a neutral state of mind meant. I didn’t know what my anxiety looked or felt like till around my sophomore year of college. After going on anxiety medication for a bit, I was able to understand what intrusive thoughts were and how they occupied my life. 

The baseline for my anxiety is intrusive thoughts, but it can also manifest itself in different ways just based on the things I am doing in my life at the time. For example, my anxiety can manifest itself in ways such as crying in social settings, having an obsession with time (i.e. constantly looking at the clock or leaving hours early for events), and, when things are more extreme, staying in my room for days on end. For me, it is so important to specifically state how my anxiety manifests because for so long I did not know what it meant. I think it is important that we normalize talking about everything that anxiety can bring with it, not just generalizing or downplaying it. So often, I think anxiety is talked about in very loose terms and given very simple fixes for how to “handle it.” This, in return, can oftentimes belittle the situation. 

When these more intense and intrusive moments occur, my IBD flares up. So, I often question how I am to manage my stress when I often cannot control my anxieties. In the past, I would become stressed when I experienced my anxieties because I did not know what was wrong. Now, they still stress me out, even though I know that it is anxiety. 

For me, and I think many others, anxiety is something that I have to constantly cope with on the daily. If I am not ten steps ahead of it, it will simply swallow me whole. 

IBD and anxiety can feel overwhelming and scary, but what has helped me is knowing that I am not alone. Having these two conditions together is not uncommon, and what feels very isolating and full of despair is not the case. Medication has helped me in the past and therapy is a forever process for me. I also keep a bullet journal of coping skills I have used in the past - identifying coping mechanisms that worked and ones that did not. This list gives me a place to turn to when I feel as though nothing could help and it's easily accessible. I have also found solace in being in a community of people who understand. Explaining anxiety or IBD to someone who has not gone through it can be very exhausting and this goes for many other varying identities as well! When I do find the energy, making art is another space for me to process my anxiety, whether that be through a conceptual piece or just painting a canvas with one color over and over again.

What are ways you cope with your anxiety?

Judging Symptoms with Crohn’s

Sometimes, it feels like all gastro symptoms are inflammaotry bowel disease (IBD)-related… especially being symptomatic with IBD for so long. However, it’s not always case – which can cause a great of confusion, as well as making life just that bit more complicated!

As well as Crohn’s disease, I also have gastroesophageal reflux disease (GERD), irritable bowel syndrome with constipation (IBS-C), an internal rectal prolapse and lactose intolerance. I was diagnosed with Crohn’s disease in 2008, after several years of experience gastro-related symptoms. So, at that point, I assumed that everything I had experienced was the result of Crohn’s. What I failed to realise, and what wasn’t explained very well at the time, was that I also had GERD. I was suddenly prescribed all of this medication, without being properly informed of the purpose of each different medication.

Over time, and with the right treatment, I became more informed, and I was able to get my Crohn’s disease under control, to the point where I was deemed to be in clinical remission. This was concluded by considering blood tests for inflammation (CRP and ESR), colonoscopy and gastroscopy results, small bowel MRI scan results and faecal calprotectin results, each of them done at different frequencies over different periods of time. This happened gradually over a few years, and in the process, I learned more and more about my body. However, I began to struggle with more gastro-related symptoms, which I initially thought were a Crohn’s flare, but soon realised were not exactly the same as before my Crohn’s diagnosis. I felt bloated and constipated, I had abdominal pain, and I was passing mucus. It became clear that I most likely had IBS-C. The problem I found with IBS was that there was no quick and easy fix for it – not that there has been a quick and easy fix for Crohn’s disease, but at least I was able to take some treatment which helped control the inflammation. With IBS, I felt very much in the dark. Recommendations were an anti-spasmodic to relieve cramping, laxatives to ease constipation, and avoiding foods which seemed to make me ‘worse’. I watched what I ate very closely, and soon identified certain green vegetables as a trigger, as well as milk products, which I tried to reduce. 

Little did I know, but the milk products weren’t just a trigger for worsening my IBS symptoms, but I was also lactose intolerant. I was diagnosed in 2015 – some seven years after my Crohn’s diagnosis. This only happened after one doctor felt there was something else going on and decided to test for lactose intolerance and Helicobacter Pylori infection – and thank goodness they did! I’ve managed to cut most forms of lactose completely out of my diet since, and when I can’t, I have found a lactase enzyme supplement I can take immediately before eating or drinking something containing lactose, to help me avoid those unpleasant symptoms.

I thought that was going to be it when it came to gastro problems. Then, something else came along! Originally blamed on my IBS-C, I noticed I was struggling more with constipation, despite eating a balanced and healthy diet, and doing everything else ‘right’. A couple of healthcare professionals didn’t really acknowledge my perspective, and just said I need to take laxatives permanently – something which I do take, but often feels like a ‘quick fix’ or ‘cover the wound with a plaster’, without understanding the underlying reason for these changes. Many blame IBD, plus IBS for constipation, without necessarily looking further. It sometimes feels as though assumptions are an easier option in the medical world, but not for those of us living with these symptoms. Moreover, I had observed changes beyond those I had learned to notice by living with IBD and IBS-C. 

Cutting a very long story short, I ended up going for a proctogram which revealed I had an internal rectal prolapse – which is basically when your rectum folds in on itself. It wasn’t the most dignifying procedure – much like most gastro-linked investigations. Dignity often goes straight out of the window! However, this finding did explain the sharp shooting pains I had been having in my rectum, as well as the mucus I had been passing, the ‘fresh’ blood I had noticed, and why it sometimes felt as though there was a physical obstruction – because there was. The verdict was ‘there’s not much we can do’ – something I think we’re all too used to hearing. There are surgical options, but they come with risks and they more or less said they would not be considering that option for somebody of my age. So, I was sent away with pelvic floor exercises, and the notion that ‘I just have to live with it’ – which I do. At least I received an answer for the symptoms I had been experiencing, even if I don’t have an answer as to ‘why’ I have a rectal prolapse. My current hypothesis is that it is something to do with hypermobility, which has consistently been overlooked – but that’s a whole different story!

All of these different symptoms, and the conditions subsequently diagnosed, have taught me so much. I have learned to really listen to what my body is telling me – which is not easy but does improve with time. I’m not always right, but my judgement certainly seems to be stronger now, after all of these years with IBD, IBS-C, GERD, a prolapse and lactose intolerance. I am much better at distinguishing as to ‘what’ is causing ‘what’ – although it’s impossible to always be ‘right’! You just tune into what you are feeling, almost like detective work. You place pieces of the puzzle together to help you build the picture of what you think is happening. Your previous experiences and your observations guide you, alongside being proactive in terms of knowing clinical indicators, recognising new triggers, stressors or symptoms, and then being proactive in seeking the right input from the right healthcare professionals. It comes more naturally after years of having to take things into your own hands to get answers. For example, I now know that the abdominal pain and cramping that I frequently experience is when I am perhaps a little constipated as a result of IBS-C and my internal rectal prolapse; so I adjust certain parts of my diet and take additional laxatives when I begin to notice patterns changing, early on. Likewise, the ‘whale’ noises and ‘washing machine sensation’ immediately indicate that I’ve consumed something containing lactose without realising – like the time I ate a gorgeous cheesy pizza, and then realised I hadn’t taken my lactase enzyme… I suffered for the next few hours! 

These conditions, in one sense, sensitise us to be more receptive to how our bodies work. I don’t think I would have been as knowledgeable or as ‘switched on’ as I am if I hadn’t been diagnosed with them – and I wish more people recognised this, particularly certain healthcare professionals. I often have grievances with professionals who rely solely on certain clinical indicators for disease remission. For example, those who just use CRP as an indicator as to whether you are in remission or not. This has happened to me in the past when I was evidently in the middle of an IBD flare, but at that point in time, I was not confident at self-managing my health. As it turned out, my faecal calprotectin was off the scale, and so some additional treatment helped me out immensely. What did I learn? Nobody knows my body better than myself. Healthcare professionals can help me the most when they listen to what I am saying, acknowledge my expertise, and then work with me to identify what is really happening, and then plan with me as to what to do to help manage symptoms so that I can get on with my life, and most importantly, have a good quality of life. So, when anybody questions what you are thinking or feeling, remind them of this point, and hopefully, they will change their approach so that it is supportive, rather than a hindrance.