Has anyone decided to go back to an Ileostomy post ileo reversal?

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2much2bear
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Date Joined Mar 2008
Total Posts : 624
   Posted 2/15/2011 9:56 AM (GMT -6)   
Hello everyone
 
Has anyone had a take down/reversal and found it didnt work out, so went back to an ileostomy?   If so, was your experience of it the same and the right decision?
 
I dont think i have come across anyone on the forum who has???
 
I had a total colectomy/sm bowel connected to rectum and a loop ileo nearly two years ago for colonic inertia. This was reversed around five months ago.

Thing is I am not getting on with going to the loo with issues of tummy ache/feelings of constipation ever since (although this has improved somewhat).  Taking prune juice x 2 a day but it doesnt really do the trick per se.
 
I had a good pain free life with the bag  and thinking i might have to go back to it.... confused   ...cant believe this is hapening to me
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal

Post Edited (2much2bear) : 2/15/2011 8:00:38 AM (GMT-7)


gmark
Regular Member


Date Joined Jan 2011
Total Posts : 55
   Posted 2/15/2011 10:27 AM (GMT -6)   
Karen, while not exactly what you have, (if I am understanding you correctly) but there are quite a few people with j-pouches that end up going back to a permanent ileostomy. Long term, something in the range of 10 to 20 % of them end up going back to an ileostomy, and are usually very happy with that decision. Most of their comments I have read said that they were finally free of being sick, in pain, and miserable, and going back to an ileostomy gave them their life back. If you look at the j-pouch.org site, you will see a post on there every little bit about what you are describing. Best of luck, G

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/15/2011 10:38 AM (GMT -6)   
Your situation is different in that you had your surgery due to CI not UC or Crohn's. Have you ever been tested for CI of the small intestine? Your motility disorder could extend further up. And how about the rectum, could it be involved?

But nevertheless, if an ostomy gave you a better quality of life by all means pursue it.

Sue

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 2/15/2011 10:44 AM (GMT -6)   
thanks for replies.

No no tests yet - due to have my second outpatient appt this friday. he wanted to give it time. yes i hope he gives me tests cause i dont know why this is happening... though dread more tests ....at least i will know the problem if any... the NHS are really slow here unfortunately. The decision will be easier to make if there are unsolvable problems.
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 2/15/2011 12:11 PM (GMT -6)   
I had a temp ileo  for 6 months due to cancer. They removed most of my colon at that time. When the symptoms of UC increased I was very forceful with my dr. that I wanted the permenent ileo. He wanted me to try the medicine routine but 3 months of prednesone and I was sure I did not want any more of that! I had surgery for the perm last feb and still think it was the best decision I have made for ME to get my life back. Everyone  must make their own choice but I knew what I was getting into so it was a no brainer!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/16/2011 8:38 PM (GMT -6)   
Karen,

Your bio/history under your name suggests that you have had and likely still do have pelvic floor or rectal issues. These are likely the cause of the take-down not working. The reason your ileo was working so well was that the rectum/pelvic floor issues were all bypassed.

Good luck with your decision. Rosemary

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 2/17/2011 3:05 AM (GMT -6)   
Hi Karen

Sorry to hear of your ongoing troubles...

I too had a ileostomy take down 5 months ago.. (after perforated diverticulitis and partial colectomy - temp ileostomy for 3 months) and like you am struggling. Bloating, constipation and feeling very miserable, unable to eat much in the way of solid food. With the bag I was living my life and making progress.. I could swim, cycle, run and could eat pretty much what I wanted.

I am also seriously considering going back to it. Having more tests to look for CI. Saw my Dr yesterday who was talking stimulant laxatives and regular irrigation.. jeezzz! surely thats not a long term solution?

I really feel for you - it looks like you've been through far more than I have, and know how tough it is just keeping your eye on the end of the tunnel and trying to stay positive. Hang in there.. at least we know what the deal is with the bag and it gives us a far more informed option.

Take care
Sarah

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/17/2011 3:49 AM (GMT -6)   
hi Karen,

i'm sorry you're going through this trial now. as you know, i was ileorectal anastomosised for 11 mons and i had lots of troubles with it. i was miserable. i really like it now with the ileostomy and have no regrets whatsoever. will never go back even if offered a million bucks.

the most important thing is that we know there's still a "way out" of this miserable situation. it would have been really unfortunate if there wasn't. so i guess we should be thankful for that.

love and hugs!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 2/17/2011 5:31 AM (GMT -6)   
Hey thanks everyone,
 
yeah it really sucks that this is happening.  I feel really let down by my body.  I will ask my dr tomorrow about the pelvic floor as no one said it was an issue when tested - if there is then i will be rather annoyed no one picked up on it before i had the reversal. mad
 
No it is not a good idea you take stimulant lax and irrigation... that is not good quality of life in my view.  shocked My main issue is tummy ache and straining when small amounts are there... i can pass larger amounts and watery no probs.  i dont know, it is boring having to talk about bm again... thought i was done with it.  shakehead
 
Yeah at least we know that there is an option of going back to the ileo but i am scared my experience wont be the same as before e.g. i wont be any diff to now - thats what my husband said.  i know i am just being plain negative  but i am scared life wont be like it was with the bag... sorry but i am on a real downer these days. thanks for your support. x
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal
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