I went to see a dietitian at the hospital because I've been having a few issues with "Stacey Stoma" again. It's been years since my ileostomy surgery, yet there's still lots of trapped wind, pressure, and spurts of watery output. I feel dehydrated too. What set this off? I'm not sure. It could be a bug, something I ate, a partial obstruction (again). Who knows? One issue at the moment is I can’t seem to put on any weight no matter how hard I try. My appetite keeps changing. One day I can feel like eating loads then the next day I’m just not interested. I suppose my anatomy is still adjusting to its new plumbing.
The dietitian was very helpful. At my appointment, she basically said that I have to get my eating habits more consistent because my body needs a routine so that my stoma can get accustomed to regular output and learn when to expect food. She recommended not skipping meals and adding new habits, like healthy food, hydration, snacks, and physical activity. Hopefully her suggestions will lessen some of my problems in the long run, but this is easier said than done as I never feel like eating in the morning. Having an early meal makes me feel quite sick but I guess I could try it before giving up completely because I know things need to change. My dietitian said scheduling three small meals per day is ideal, with snacks in between, so that Stacey can adapt easier. I guess that makes sense, that way my bowel doesn’t isn't at rest for a lot of the day. By having breakfast, it means my digestion process will be kicked off earlier in the day, as opposed to leaving out breakfast which makes my digestive system and stoma not really having to bother with anything until the afternoon.
Right now there are a few things that don’t agree with Stacey, such as onions, lettuce, apples, and green vegetables; all going through quite uncomfortably. I’ve been advised to keep away from raw vegetables and fruit with seeds, skins or pith, such as grapes and apples because the skin and pith contain fiber. I’ve also been advised not to eat a high fiber diet, but that fruit in tins (where the pith and skins have been removed) should be fine. Making sure I have plenty of fluids is another important matter. Ideally, since I have an ileostomy, I should be aiming to drink round about 2.5 liters a day… mad this seems! This, however, is because of my body’s inability to reabsorb what I drink and get what it needs from it as opposed to a person who has a colon. That's like drinking one and a quarter big bottles of water… I just don’t see that it’s possible for me. I suspect I'd need to empty my bladder all the time, and I’ve just escaped years on the toilet from Crohn's disease! My dietitian said this will be the case at first, but once my kidneys adjust to having more fluids then it should calm down and I won’t need to go as often. She said electrolyte drinks have salt, and that it's vital for me as I need some extra salt because of the fact that my colon is gone. A lot of information to take in and a lot of trial and error and perseverance will be required.
It's been a huge learning curve and still is, I'm always learning new things about living with a stoma and what affects mine. Besides a few tiny issues, I am doing well and am proud of how far I've come. Like everybody is entitled to, I still get my down days, but then I just remind myself that my quality of life now is so much better than I ever had with Crohn's disease. The operation was 100% worth it and I'm glad I made the decision to have it.
Article credit: Living With Stacey Stoma