Ileostomy reversal surgery - what to expect? I have Ehlers Danlos

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New Member

Date Joined Aug 2011
Total Posts : 17
   Posted 8/6/2011 4:50 AM (GMT -6)   
Hi! Im new to this site but I've been trying to get some answers to my questions by reading lots of the threads so thought it would be better to just register and ask!

I had an emergency ileostomy in June this year. It came as a huge shock and I'd been in hospital in unbearable pain for over 2 weeks before they finally did anything for me - my original consultant even said the pain was all in my head???!!! Thankfully he passed me onto a colorectal surgeon who diagnosed my problem or I wouldn't be here to tell the tale.

In surgery they removed a big section of my large bowel which was gangrenous as it was being strangled by a piece of mesh which had come loose following earlier surgery in May 2010. They also created a stoma.

I am coping reasonably well with my stoma, however I am desperate for the reversal. I don't feel well enough to be out and about like I used to be yet, but even if I was I am really nervous about my bag. On the few occasions I've been out it seems to baloon immediately and I feel really uncomfortable.

I can't get to see my consultant yet and I'm curious as to what he will do to reverse my ileostomy and if he'll go through the original cut down my belly.

I also have a condition which affects my connective tissue called Ehlers Danlos. Before they took me into surgery, they were unsure what was causing my problem but thought it was something to do with my surgery using mesh to repair damage caused by my Ehlers Danlos and even thought that as my underlying condition affects my tissues so badly that my ileostomy would have to be permanent. I'm delighted to say that it isn't and I'm now waiting to see my consultant to find out when it can be done. The sooner the better as far as I'm concerned.

Any help or advice would be much appreciated and I'd especially like to hear from anyone who has Ehlers Danlos and had a reversal. Thank you all so much x

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 8/6/2011 7:09 AM (GMT -6)   
They shouldn't have to use your incision...they usually reconnect the intestine and push it back into place. I don't know if they will stitch it or just leave it to heal from the inside out...each doc is different.

With the ballooning issue, are you using a pouch with a filter? They aren't perfect (can clog) but when they work they prevent ballooning when not sleeping/laying down.

Also, are you getting hungry before the pouch does that? Six small meals/snacks can help prevent that. It could also be caused by something you are eating, too:( Have you kept a food log? It seems like a lot of work to put into a temporary ileo but it can help to get out more often it might be worth it!

Good Luck and WELCOME to the forum!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

New Member

Date Joined Aug 2011
Total Posts : 17
   Posted 8/7/2011 11:48 AM (GMT -6)   
Thanks for your reply! i will definitely try some of your suggestions and see how it goes. I also tried the marshmallow trick prior to a family meal out today and that really helped!
Hysterectomy 2008 & bladder prolapse repair. Repair failed after few weeks so diagnosed with Ehlers Danlos (connective tissue disorder) had mesh surgery May 2010 and appeared successful. Admitted A&E May 2011 with severe abdominal pain. Misdiagnosed, had unnecessary appendectomy, then week later emergency op to remove gangrenous bowel strangulated by mesh. Had ileostomy & hoping for reversal soon
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