I am someone who has had a really difficult time eating after being diagnosed with ulcerative colitis. I not only never knew what to eat but the things I was told were healthy for me would land me in the ER with a blockage. After having so many obstructions, I refused to eat anything that had the slightest possibility of causing one. My mission in life now is to do anything and everything to avoid the ER/hospital.
Having an ostomy also makes things more challenging. When the output is thick, it makes it a lot harder to empty. I also feel it more which I find distracting if I am supposed to be on my game. Eating something that doesn’t digest also greatly increases the possibility of a leakage. I have learned that carbs and dairy are what I should stick to. And not just that..but extremely plain forms of those food groups. Since I am limited in that way, I have been known to eat some of my “safe foods” in excess. Then I feel guilty about that because I would love nothing more than to eat like a healthy person; the way I was prior to IBD.
Basically, my relationship with food sucks.
It is because food is such a huge issue in my life that I do take notice of other people eating. Not in a creepy way but just do a general check, especially when I am with other people that suffer from Crohns or ulcerative colitis.
On the panel, we had three people with ulcerative colitis, three with Crohns and a caregiver of a child with Crohns disease.
Everyone ate completely differently. It was kind of funny to me in a way because it really DOES just go to show you that every IBD patient is different. With the Ulcerative Colitis patients – one had a Jpouch, one had an ostomy, and one still had her colon. The Crohns patients were mixed as well- one had a Jpouch, one had the entire colon removed (no Jpouch though), and the other has had resections.
One of my questions to the GI’s that were there was about diet and how they feel it influences their patients. I went on to say how I couldn’t understand those that follow the specific carbohydrate diet or paleo because it appeared to be all roughage based food. I genuinely would like to know those things. I also have so many questions because it impacts so much of my existence.
We had the discussion surrounding drinks, appetizers and dinner. Needless to say, that was challenging for me. I didn’t eat one thing until the meeting was over. First of all, I would have lived in the bathroom (and still went twice since I had some water.) But second of all, I don’t feel sharp or come up with good insights when I am feeling my stoma push out food, wondering if there is a bulge, checking for a possible leak, etc.
It was nice to be in the company of those that understood and didn’t seem to even notice or care that I wasn’t eating. I always used to say that I never minded being part of things that revolved around food because I have accepted that food is something very different for me. I just was happy to be there. I was happy to be part of the discussion and to meet such wonderful and influential people in the healthcare field. That is all it is about for me.
I just found it so interesting how we had six people with inflammatory bowel disease and not one of them ate the same way.