By: Carina Diaz
I’ve tried a mix of conventional and holistic medicines over the years to try to find what works for my Crohn’s disease. Chronic and autoimmune illnesses can often feel like a never-ending journey of trial and error. Sometimes, a diet or medication can work for a short period of time, and then you have to pivot to something new. Below is a list of some of the medications and methods I’ve tried to treat my IBD.
A quick disclaimer: The purpose of my writing about what I’ve tried is simply to share my experience. I am in no way suggesting that there are right and wrong ways of treating IBD. Different things work for different people.
Biologics:
Humira: This is probably the most common medication for IBD. I had talked to my gastroenterologist about going on Entyvio, but my health insurance forced me to go on Humira first. If I “failed” it, then I could try the biologic that I wanted. Humira is a shot that you or a nurse can do in either the thighs or belly. The first round is four shots, and the device looks like a pen, so you don’t see the needle. A nurse helped me with this, and it stung like hell. The pain didn’t last long, but it was very intense. I felt very itchy all over my body for the next few days and in very random places like between my toes and ears. I was able to then move on to Entyvio since I had a reaction. I have heard from nurses that there is now a version of Humira that is “sting-free.”
Entyvio: This biologic is an infusion that was about one hour long. I didn’t get any side effects from it, but after trying it for a year and not seeing any change, I had to have another conversation with my gastro about what to try next. Fatigue was one of my biggest symptoms while I was on this, and it made me feel a little more tired after the infusion.
Stelara: It’s a shot that’s in a typical syringe, but unlike Humira, it didn’t sting. I was never brave enough to do it myself, so I would go to the doctor’s office for a nurse to do it. It was quick and painless (for the most part). I didn’t feel tired after. In my opinion, seeing the needle makes it harder to be able to administer it yourself.
Remicade/Inflectra: This is my current medication. I was put on Remicade in 2019. It’s a pretty popular biologic and has been around longer than Entyvio and Stelara. This is an infusion that takes about two and a half hours, but it depends on your weight. I had to switch to Inflectra in 2021, which is a biosimilar to Remicade, because of insurance. I also had to go through a lot of blood tests to figure out if the dosage was enough to make a difference. I used to have an infusion once every three months and now it’s once a month.
Pills:
Prednisone: I have been put on this WAY too many times to count. It’s a hospital’s go-to medication every time I’ve been admitted. For me, it was like going through puberty again. I was moody and it altered my body, especially my face. When I was on a high dose, all I could think about was burgers, specifically the ones from Freddie’s. I’ve heard that it’s common to have side effects once you’re weaning off of it, but I didn’t experience that. The only positive part of being on prednisone for me was that it gave me an appetite, and I was able to gain some much-needed weight back. It’s a short-term solution ,and I honestly hope to never be on it again.
Budesonide: I was put on this steroid for a few months after Entyvio. This had no effect on me, so I wasn’t on it for very long.
Diets:
Specific carbohydrate diet: This is a grain-free diet that has low sugar and lactose and was created specifically for IBD. From what I remember, there are two phases, and after you complete the first one, you’re already supposed to see a difference in the number of bowel movements in a day. I’ve tried this twice and it wasn’t helpful at all.
Rainbow diet: It was all about eating more fruits and vegetables. I was at my sickest around this time and my body couldn’t withstand much fiber without causing pain, so I only tried it for a few weeks.
Gluten, dairy, and soy-free: This one probably affected me the most negatively. I love pasta and cheese with my whole heart, and it was very difficult to cut those out. Vegan cheese has a particular smell that made it very difficult for me to want to eat it. Having to be this restrictive with food was not only time-consuming and expensive, but also boring and frustrating. All I could think about while I was on this diet was all the food I wasn’t allowed to eat.
Holistic practices:
Colon hydrotherapy: I had this treatment done in college, and my only symptom at the time was bloating, but it was very severe. I would look several months pregnant. Colon hydrotherapy involves using water to flush out the large intestine. A tube was inserted into my butt so that water could flow through, and a medical professional would massage my stomach at the same time. I would have to go to the bathroom immediately after. I remember feeling much better, but I don’t think it helped with inflammation.
Vitamin C IV drip: This had no effect on me whatsoever.
Supplements: I’ve tried so many kinds from probiotics to powders, and I haven’t experienced any changes from them. I was taking these while I was really sick and going to the bathroom up to 20 times a day, so I wasn’t really absorbing anything I was ingesting. The only ones that I currently take that are suggested by my medical team are vitamin D and liquid iron. I’ve gotten very bad reactions from iron infusions.
This is not an exhaustive list, but it’s the majority of what I’ve tried. I will say that I’ve gotten to a point where I’m very cautious about holistic medicine. It has further complicated my relationship with food and my body. The practices also have less research than conventional medicine and aren’t regulated by the FDA.
I really try to focus on listening to my body, which has taken years to learn. To be honest, food doesn’t really seem to help or hurt me. I’ve learned that my symptoms work in cycles and that stress management is important. Stress seems to be the biggest factor when it comes to going in and out of flares.
When I was really sick, I was willing to try anything and everything under the sun to treat my IBD. I thought that remission not only meant that I would be symptom-free, but also free of medication, which is actually very rare. I’ve even gotten treatment in Colombia and Puerto Rico. While I’ve definitely been through trying to find what works for me, I am very fortunate to even have the option to try all of these things. Whether your IBD is mild or severe, I hope that you are gentle with yourself along the way.