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Lynne
Lynne
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Joined: October 5, 2019
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Hi all. I was diagnosed with proctitis my senior year in college at 22 .. by 23 and after 2 mos in the hospital on TPN and drugs, the diagnosis was changed to UC with need to remove colon. Had 2 step j-pouch which served me pretty well for 30 years (a few issues with super tight anastomosis between pouch and anal canal and had to take Cipro pretty much constantly but no other meds) but then few years ago developed perianal fistulas/abcesses that caused lots of pain. (Docs said I now had perianal Crohns although fortunately have not had it in any other areas.) Had elective surgery in fall 2019 to get an end ileostomy, keeping non-functioning j-pouch (sewed shut at the top) in until further notice. Good news is fistuals/abcesses/pain pretty much gone down there so other than mucus that comes out every couple days, probably going to try to just monitor every year and avoid the full Barbie Butt surgery (mostly just due to the significant recovery time that seems to come with that. Eric’s powerpoint on this topic is super helpful should I need to go that route) My challenge now, 7 weeks out (mid Dec 2019), is my stoma is quite small (bit less than inch diameter and only about 1/2 inch tall) and the output is right at the bottom almost flush to the skin. Creates challenges with red skin around stoma bottom and at most 3 day wear time. Working on that! Super soft convex Marlen seems to be a good solution so far. I also have a small hole/ulcer that just this week the GI said was peristomal pyoderma gangrenosum. The surgeon had seen it prior and didn’t mention this so I’ll see him again next week to confer. The GI wants me to start Humira but having avoided the biologics for 30 years, I’m going to try to heal without that, at least for now. We’ll see. Fingers crossed. After my surgery I started eating gluten again and lots of starchy things that I’d been avoiding before (ie from no bread to 4 slices a day. So now I’m limiting myself to totally GF, using Absorb Plus, Bone Broth and some eggs, and nut nutter with lots of healing supplements (Emu oil, Ancestral Supplements organ meats, turmeric, etc.) Hopefully if I get back on that diet at least while still healing, things will improve in terms of this little ulcer and I can avoid Humira. Eric you have been a fantastic resource for me so thank you so much for what you do! This has been a great community the months leading up to my ileo and now, very appreciative of everyone sharing and caring so willingly!

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