Ileostomy

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Hi

I have crohns disease in my ileum and rectum. I have an anal fistula and seton insitu. I've failed adalimumab and infliximab and my quality of life has severely deteriorated over the past 12 months. It's now been recommended that I have a temporary ileostomy.

I am likely to go ahead with this as I want an improvement in my quality of life, but I wanted to know if anyone here has an ileostomy or has made the decision to have one rather than it being an emergency and how have you found your quality of life after?

Also, even if the changes are mostly positive, are there any negatives to prepare for?

Hi, sorry to hear you are going through a difficult time. My fistula was caused by childbirth but I am in a private Facebook group called abscess / fistula support for women. There are a few women in the group who have opted for ostomy surgery and from what I hear it has improved life quality and in some case promoted healing. There is a lot of information if you type ileostomy /colostomy in to the search bar. There are also webinars on the group from Phil Tozer from St Marks fistula hospital, they seem to be leading the way with regard to treatment. I hope this helps x

My ileostomy was the best think that happened to me after 16 years of increasingly unmanageable Ulcerative Colitis.
Have had it 21 years and last year I had rectum removed

Hi OP. As my username suggests, I have an illeostomy, after, like you, not responding to drugs and 10 years of Crohn’s. It’s the best thing that has ever happened in my medical history. I can walk my kids to school, exercise, eat anything without pain. I literally rave about it to people!

Mine is permanent, as I had my entire colon removed, along with rectum and anus etc. , the hardest bit of recovery was the healing of wound that stitched up my bottom (which you won’t have if you’re having a temporary one)

Two things to be aware of…

• you need to wear your support garments to stop getting a hernia. And beware if you’re currently underweight as they might measure you up before you’ve finished putting some weight back on! But you get used to wearing them.
• You might feel amazing but don’t let doctors forget to put you back on meds. You can still have a flare up. I’ve just started back on ustekinimab even though it didn’t really work pre surgery, as now it’s only preventative so we’re not asking so much of it.

And I won’t lie - recovery was hard, but so worth it. You’re already dealing with being so ill and that is what it should help. When I woke up from surgery there was all the surgical pain and exhaustion, but my colon pain was GONE!