By Nikhil Jayswal
Hello everyone!
Last month, I wrote about the issues I face travelling as someone with an ostomy. I pointed out that the lack of easy access to clean and accessible public sanitation facilities has been a major source of problems for me. It was still so when I did not have an ostomy because before having an ostomy, I was incontinent and relied heavily on adult diapers. The experience of being incontinent for a year and a half, greatly affected my outlook on life and my inner self. Incontinence is a very emotional topic for me, and this month I want to share those emotions with you.
To clarify things, when I say incontinence, I mean faecal continence – the inability to hold stools. It is a common symptom experienced by many people suffering from IBD, and it is more pronounced if the rectal and anal regions of the GI tract are affected by IBD. There is a sense of “urgency” when it comes to going to the toilet and once in a while, our bodies betray us and “accidents” happen.
I suffered from total incontinence, which means that I had no control over my bowels and I had A LOT of these accidents/mishaps. As a consequence, diapers became an integral part of my wardrobe. However, adult diapers are very, very uncomfortable - they never fit nicely, they leak from the sides, and once you’ve pooped in them, you can’t sit until you clean up and replace the diaper. Eventually, I was able to travel and work wearing diapers, but being in a public place with a diaper was still scary. There would be no place to change them in a safe, private and hygienic manner.
The first time I soiled my clothes and the sheets, I cried straight for an hour. My mother helped me to clean everything and tried to console me, but I kept on sobbing. I went to meet my GI a few days later and told him that I was having these incidents. In response, he casually told me to use diapers. I felt like I was making a big deal out of a tiny thing. I went back home crying silently. I began wearing diapers since that day and I kept trying to acclimatize myself to the experience of wearing a diaper 24/7. Adult diapers in my experience, really aren’t designed for movement. I had to learn how to adjust them so I could sit properly. I had to use some hacks to ensure that if my poop was watery, it wouldn’t leak off the sides of the diaper. With every passing month, I was becoming more and more proficient at living, travelling and working with the “comfort” of a diaper.
On the other hand, my disease was not responding to any treatment and kept escalating in severity. That kept escalating the frequency of my visits to the toilet and also worsened my incontinence. Things quickly started going downhill after I failed the biologic Adalimumab, a.k.a Humira. Soon, I was admitted to the hospital because of my worsening condition. My CDAI (Crohn’s Disease Activity Index) was over 700 (a score above 350 is considered an indication of severe disease activity). My toilet visits were very frequent, almost every hour and I had become completely incontinent. I can still remember the helplessness I felt when poop began to run involuntarily down my thighs, while I was cleaning myself up after a visit to the toilet. I was horrified because I had zero control over it. I could not hold it for a fraction of a second. I remember myself crying and letting poop flow down my legs until it had stopped, and then going back to my hospital bed and then crying again. After a few more such incidents, I was ordered to not have any food and also restrict myself to the bed. I was bed-ridden. This was the absolute lowest point of my IBD journey.
The first time I saw someone bed-ridden in the hospital, I made a promise to myself. I promised to always find the strength to go to the toilet, no matter how sick I would be. I promised never to let myself get bed-ridden. Little did I know that someday, I wouldn’t be able to keep that promise. When I had figured out how to travel and work efficiently wearing diapers, I had acquired a certain sense of pride. I thought I would always be able to adapt to anything. I used to feel independent and strong. All that pride, that strength, came crashing down when I was bed-ridden.
The day I was ordered to stay on the bed, my doctor gave me an Infliximab a.k.a Remicade infusion, which luckily worked! After 4 days of the infusion, I had firm stools. I was bed-ridden for those 4 days. Remicade helped me get my dignity, my strength back. It did not resolve my incontinence completely, but I regained a tiny bit of control and was able to work and live with the assistance of diapers again. There was one particular very nasty accident at work, where I soiled my pants, and somehow managed to escape back home without anyone noticing what had happened to me. Apart from that though, I was a pro with diapers. In my next hospital admission, I even managed to sneak out of the hospital and go outside on the road to get food and get a look at the world I couldn’t see from my hospital bed. Couldn’t have done that without diapers.
Incontinence, or having no control over your excretory processes, is something that goes against the very idea of being young. We generally associate it with babies and the elderly. Poo becomes taboo as soon as we are potty-trained. What happens in the toilet stays in the toilet. Bed-wetting becomes a matter of shame. Incontinence somehow made me feel inferior to my healthy friends. Being bed-ridden was an even more indignifying experience for me than being incontinent. Being bed-ridden meant I was no longer able to “stand on my feet”. Remicade and diapers helped me get back my sense of freedom. That freedom, even if it was partial, was a big boost to my morale. I felt less sick. I felt I was still a young man.
My incontinence parted with me only after my ileostomy surgery. We lived together for a year and a half and it took away some things from me, but also taught me many things. The process of getting comfortable with incontinence was a tough one, but I think once I learnt how to handle incontinence, I learnt how to handle my condition without letting it affect me emotionally.
So let us get comfortable with our poop, our urine, and our bodies. Let us talk about incontinence and being bed-ridden so that these experiences do not have the power to affect our mental and emotional health. And if anyone out there reading this is struggling to get out of their homes, because of unpredictable diarrhoea or lack of a toilet, please give diapers a chance. They are not a perfect solution and can be irritating sometimes, but with a little bit of tweaking and a little bit of planning, they can help you experience the beautiful world outside of your home.
I’ll leave you with some words from another one of my favourite songs to listen to when I’m feeling down – “Not Afraid” by Eminem.
I'm not afraid, to take a stand
Everybody, come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just letting you know that you're not alone
Holla if you feel like you've been down the same road
Thank you for listening to me! Have a good day. :)