Thanks Alysia. I didn't notice your post until now. Its interesting to hear from someone with WG induced IBD because my Gastroenterologist (who I have only been seeing since being admitted to this hospital 4 weeks ago) was convinced it wasn't Crohn's right from the start and after the diagnosis told me she is certain it is all related to Wegener's. My main symptoms re the colon in the last re months have been the most aggressive diarrhea (I was hospitalised with dehydration after 1 day of diarrhea and spent the entire week averaging 20 visits a day to the toilet) sometime before it starts I get some mild gut pain some bloating and wind but nothing like the severe pain I used to get with bowel obstructions and partial obstructions. And the Gastroenterologist doesn't think I would be able to cope with bowel prep right now and she is right because I have had about enough diarrhea. I fixed the diarrhea eventually by sticking to a BRAT diet which meant for me I ate only bananas, apple sauce , burnt toast and mashed potatoes (no additives) they also allow white rice. Then later i added a bit of steamed chicken (skinless breast) and eventually ate a lot of chicken noodle soup. I learnt that the bananas and apple sauce and mashed potatoes work a bit like yoghurt and restore the good flora in your gut. Anyway it was the only thing that stopped the diarrhea in it's track. Still eating daily bananas and apple sauce as I am scared of a relapse
The treatment they have me on is prednisolone (just increased again from 20 to 25 mg) and since Wednesday 10 mg of Methotraxate once a week. They want to go up to 20 mg and then drop the Prednisolone if I can manage without. At the moment i don't have any bowel flare up.
Do you also have stomach ulcers? for the time being I will assume they too are Wegener's and maybe down the track have another gastroscopy to see if the Wegener's treatment fixed those.
Thanks for sharing your info. Keep me posted how you progress. As I have had bowel issues for so many years and as the ulcers are a real worry I would be interested to hear how your treatment is improving the situation. Thanks again. Inge.
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