Colostomy to help reduce boughts with incontenence
50 years ago I was dx with Celiacs, severe malnutrition, with absolute flattening of villa. Severe Diarrhea was biggest issue, unfortunately It was coupled with nerve damage. I am totally gluten free but diarrhea is poorly controlled even with anti diarrhea medication. As you know it impacted all areas of life, including being focused for my family. Work and social life were challenged. Have done additional diet management (fodmap), but relied on meds to get out of house. Self induced constipation to be able to function, as well as diet and fluid restrictions in order to go out. Now I have liver involvement(early) in addition to wanting my life back. 1 option seems to be a colostomy, but seeing Gastroenterologist and surgeon, are not real supportive. Would like input. So frustrated. Thanks
I'm so sorry you're dealing with all this. Having constant diarrhea is terrible, I completely understand why a colostomy sounds like a potential solution to you. I haven't heard of it being used for IBS, but I'm going to link a forum from our IBD website here: https://inflammatoryboweldisease.net/forums/living-with-a-colostomy-bag so you can read about people's experiences.
Wishing you all the best,
Karina (team member)
I have had same symptom it’s alway different , IBS is horrible you just never know when it’s going to hide you . I have lactose intense , gluten free and when I go out you don’t know what restaurants put in their food ! It is a never ending battle of battles in my stomach issues ! I never enjoy food ! Roz Best of luck
I am better by at home cuz I can control what I eat and the bathroom is close ! My diet is the same meat and vegs . I can’t eat fries ! Sauces have gluten can’t eat I agree it sad to live like this! Fried foods are actually a trigger for many people, so you're not alone. I guess I'm lucky that I'm able to eat them. Having a bathroom close helps so much, but how nice would it be to be able to go out and not worry about out IBS!
Do you have anything that helps you with flares?
Karina (team member)
Despite gluten free diet, Fodmap diet, and just being careful, I remain with an unpredictable gut. Sometimes I do not make it to bathroom at home. I recently had a meal out that our server said was gluten free,I tested and it was not. They had also served some veggies/with dip and other items that I was instructed were also gluten free-so I didn't test, I nibbled as I was hungry. A few weeks prior was with family and someone accidentally used a spoon that was for a gluten based food, in a sauce that I had helped make. Both events ended up with me sick for several days/weeks. Quality of life is not good. I use medication to constipate, and it works 80% time, when I have to go out. I am never comfortable due to pain and bloating.Yes I also do not tolerate even gluten free Oats, my body sees it the same a wheat gluten. I have also been on the FODMAP diet, found many of the sugars/carbohydrates are hard for me to manage. I use the NIMA device to check for gluten, and due to cost of 1 time use capsule, usually put a cross sample of all items on my plate into 1 capsule at test. Since a positive finding would result in the whole plate of food being considered glutened. I am looking for a probiotic that is both gluten free, and does not contain inulin (which is the sugar associated with onions/garlic) as I do not tolerate it. I want to start out simple with out prebiotic, to allow body to adapt. Any feed back would be great. Karina thank you for all you do for this site, Sue I'm the same with oats. Obviously, my symptoms are a lot milder than yours because I don't have Celiac disease, but my body also reacts to oats thinking it's wheat and I've read that this can happen to a lot of people who are sensitive to gluten.
Regarding the probiotic, could you ask at your local pharmacy is they can recommend something to you? Where I live, pharmacists are pretty helpful (more so than doctors) when asked for advice. You could also try fermented foods as a natural alternative: https://irritablebowelsyndrome.net/food/probiotic-prebiotic-foods. I did that for a while and added small amounts of sauerkraut to my daily meals.
I've also done water kefir (my experience here: https://irritablebowelsyndrome.net/living/water-kefir). I'm not sure if those options would be more difficult to check for gluten and inulin though.
Karina (team member)
