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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:)
 
Injuries can really be quite hostile to the body, the brain, and all of life. When I had something similar to your situation, it set me back a couple of years when I felt alone and unwanted. Those were horrible times that I remember now with genuine shivers in my hands and flashes of light somewhere in the distant corners of my memory. I wouldn't have gotten through it if it wasn't for a virtual care team from homecareassistance.com. They really helped me through these problems and supported me. Now I'm in a good place and have made new friends. I'm sure you'll get through it with success. Fight it!
 
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I have UC since I was 21 , im 61 now , five years ago I had a sub total colectomy ie they removed all of my colon apart from my anus and about a foot of colon and gave me an ostomy,

time in hospital was quick apart from catching an infection in hospital which gave me an extra 2 weeks in hospital , so spent about 3 weeks total in hospital , had keyhole surgery which helped ,

recovery from surgery completely took about four to six months , that was mostly getting back my energy levels which were bad pre surgery anyway and my weight pre surgery had dropped to about 112 pounds from about 170 , so I had a lot of trials and errors with foods but 6 months late my weight was great and my energy levels even better,

To be honest I wish I had the operation a lot sooner , my quality of life is so much better , I can drive for 4 or five hours and I dont have to constantly look for toilets , I can now eat almost everything , its not an easy journey but with help from sites like this one and Erics veganostomy , not only for vegans https://www.veganostomy.ca/community/ , I now live a good life ,

If you have any question about anything ask away
 
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