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Considering an elective Ileostomy Please help

Location
Canada
I've had Crohn's since I was 13, so 50 years now. I've been in remission for 20+ years but had a stricture surgery in 2007. The initial ileocecal resection took a bit more than three feet of my ileum, the stricture repair another 6 inches or so. I have my entire colon but it doesn't do what it is supposed to do. It seems no water is absorbed and any fat causes even worse issues since the stricture repair. I have had my gallbladder out so I have bile salt diarrhea issues. I also have GERD and have had a Nissen Fundoplication. My quality of life is fine as long as I don't leave the house. Some days I don't make it to the bathroom, some days are fine. Travel, going downtown, or out for a meal is stressful. I took the Rockwood Quality of life scale for Fecal Incontinence. On a scale of 1-5 with 5 being good my average was 1.34 I've lived with this for so long that I don't' know what a normal life is like. I quit working the year I had my Stricture repair so I've mostly been at home for the past thirteen years. My immune system is getting worse. In June I was on antibiotics for H Pylori, then I got Thrush, now a UTI and Thrush again. Probiotics help, Immodium helps, Lodalis(for bile salt diarrhea) is wonderful but it doesn't fit into my life because of the time needed between it and other meds. I'm scared to get old and not be able to get to the bathroom on time, not be able to clean up after myself, smell like a toilet, etc. as my arthritis slows me down. I'm terrified to end up in a nursing home in a dirty diaper. I know it is likely years away but I do worry about it. I have very sensitive skin, I'm afraid an ostomy bag will cause irritation. I've researched J bag, I'm concerned about the possible complications. Sorry, this is so long. Please give me your honest input about an elective ileostomy. Pros and Cons, Ostomy supplies, diet, etc. I appreciate any info you can give me. I have read part of the forum answers but everyone seems to have active Crohn's or Colitis and/or have not got a colon.
 

Lady Organic

Moderator
Staff member
Hi there,
I am so sorry about your issues and i understand all your concerns. I wish i could give inputs on ileostomy but I dont have much info aside that a J-Pouch is not an option if the rectum is diseased. I have already asked my GI about it just out of curiosity and he told me that this would not my an option in my case in case of worsening of disease in my future, as I have activity in the rectum. Hopefully people will give you more input on this subject. About diet, I can refer to you to the IBD diet posted in my signature. Maybe be worth a try:) I also recommend this book to you, The end of pain, By Jacqueline Lagace, from Quebec.
: https://jacquelinelagace.net/livres/the-end-of-pain-how-diet-can-fight-chronic-inflammatory-disease/
The diet she proposes is very similar to the IBD-aid. This book was extremly inspiring, I highly recommend it. Its from a phD scientist who had to retire from work because of rheumatoid arthritis, after she has been able to put her disease in complete remission fallowing Dr. Seignalet's diet. The diet is very well explained.
wishing you well:)
 
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