Ilestomy: After months and I mean 8 months to be... - IBS Network

IBS Network

33,264 members11,349 posts



After months and I mean 8 months to be exact of complete suffering and zero progress I’ve been told the next steps are a ilestomy. I’ve had my condition for 19years now and this year alone I’ve had 4 operations and spent 3 weeks in hospital last month. I just wanted see hear peoples views on this as I’ve been told to avoid it and also where it’s changed quality of life’s. I know everyone is different but to hear people’s experiences would be helpful...

3 Replies

Hello dani: i just read back over your previous posts to learn a bit about your background. First I want to say that i greatly respect & admire the philosophical, resourceful, determined way you’re getting through this long and really dreadful ordeal....ii’m finding it hard words that could possibly convey how highly i regard both the way you’ve coped and the way you’re facing this big decision

So, for what they’re worth, some thoughts re ileostomy:

first, some background. I’m 64 and have lived with severe chidhood onset mouth to a** slow transit dysmotility due to my underlying immune dysfunction diseases & connective tissue disorders (lupus * ehlers danlos + bone marrow disease) affecting me every whichway (including neurologically). currently the NHS has had me off food by mouth and on Exclusive Enteral Nutrition for 5 months ongoing due Crohns-like manifestations during a series of complex investigations (a MRE is next week). Every day is about coaxing what goes in at the top, back out the other end, somehow. It’s relentless, as you know. Ileostomy isn’t any option for me because my small intestine is so disabled

On the other hand, my husband & his sister have early onset crohns. They’ve both had a lot removed due to bowel resections and my SIL has a recto-vaginal fistula. They’ve both been on mega daily prescription meds (as am i) that only helped “so much” for years. Meanwhile they coped with dreadful manifestations 24/7. My husband is “lucky”: his crohns finally went into remission about 10 years ago, but he still has to manage a Crohns stricture which causes intestinal blockages, interfering with motility in a big way if not carefully managed. Even so, he is fit & active in retirement

My SIL struggled for years, and, in her 30s, finally had to decide about ileostomy. I spent the night with her when she was thinking this decision through - the risks & benefits etc. After MEGA deliberations, she did have the ileostomy. And she very soon became extremely glad she did. Yes, managing ileostomy is, in various ways quite a hassle (to say the least), but compared to her life beforehand, it’s a lot less ghastly. And the NHS now has a lot of experience helping ileostomy patients get theirs as “right” as poss.

I hope something in all that helps...

Am wishing you every best wish...and i hope you’ll keep us posted

🍀🍀🍀🍀 Coco

Dani09 in reply to Barnclown

Hi Coco,

Thank you very much for your reply and for the taking the time in reading my posts to understand my situation better.

I am sorry to hear the ordeal you’ve all been going through but pleased you are at a stage where you are ‘managing’. I am not sure where you live but it is very frustrating when the medical system does not fully understand and you get so far and then get pass to another hospital only back to the bottom of a waiting list again. It’s been going on too long now and I know the next decisions aren’t to be taken lightly but believe they are the only option left and will hopefully give me some success to get me back to where I used to be. I’m going to see a private consultant for advise to speak through the options.

I wish you the very best and hope your upcoming Investigation goes well.


Barnclown in reply to Dani09

You’re v welcome. I’m glad to meet you and learn about your “journey”. And i think this is a good plan. I’m doing the same myself: although the multidiscipline team at my world-class univ hospital in the east of england is doing a great job on my behalf, the gastro consultants i’ve been dealing with seem to treat me like a mushroom (keep me in the dark & feed me on...).

You may also like...