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Rectal stricture and impending ileostomy


Tue, February 17, 2009 10:41 PM

I have had Crohns since I was 10 years old.  I have had resections twice so  I only have about 1/3 of my colon left.  I have regular colonoscopies every 3 months (yuck).  I have developed a rectal stricture adn the doctors go in and stretch it open at the colonoscopies.  This has been my course of treatment for about 15 years.

My last test did not go well.  The drs are saying that the stricture is getting worse and now the "splice" area where my reconnection happened in the past has developed more disease and started to close up.  My prognosis is surgery again but now they want to do a permanent ileostomy.

Needless to say, I'm freaked out.  No offense to anyone out there with "the bag" but this is totally scarying the heck out of me.  I want to get other opinions and perhaps try other meds.  But I have no idea how to even approach this.  If I have to have this life altering surgery, then I want the best there is.

Has anyone else had a simular situation?  Any assistance would be much appreciated.

FPO ksonnans
Joined Feb 17, 2009

Fri, March 20, 2009 12:00 AM

 Reply posted for ksonnans.

Hi There Kido

I am a Grandpa and I am going to tell you like it is.
I have had an ileostomy for more than 20 years, it always
hasn't been fun, but let me tell you I have had a great life 
with my stoma. I have great and funny stories to tell some
I can tell in mixed company and others I can't. I do believe
you have to approach Crohn's and stomas with the right frame
of mind. I am not going to let get me down and if I have I'll
have fun with it. I WILL not be embarrassed by it. If others
can't handle it, pu on them.
The only thing that I am upset about is  "Popcorn."
If you eat popcorn drink plenty of liquids and only a little bit, or 
better yet, no popcorn!

Grandpa Charlie

FPO charlieinri
Joined Mar 20, 2009

Tue, March 03, 2009 8:44 PM

 Reply posted for ksonnans.

ksonnans,

I had surgery in May 08 and I now have an ileostomy that is most likely permanent.  I was diagnosed with UC in 97 & had my first surgery in 2003- an ileorectal anastomosis.  Late in 06 I had a flare in my rectum- first one since the surgery in 03.  Doctor tried me on prednisone & asacol, but unfortunately they did not really help.  I was using Canasa suppositories for awhile & Cortifoam, but it became too painful to do either one anymore.  As it turned out, I had 2 fistulas & an abcess.  It was also discovered that I actually have colonic Crohns, not UC.  Since I was getting weaker & sicker every day (I had lost about 25-30 pounds), the doctor referred me back to the surgeon.  I knew it was the only option and I was so sick I didn't care.  I just wanted to feel better.  Let's just say it has made a world of difference.  I feel like a new person.  I have my life back.  No more getting up 5-6 times a night to use the bathroom. No more worrying if I will make it to work or any where else before I have to go to the bathroom.  I used to hate going anywhere unless I knew where the bathroom was.  Now it doesn't even matter.  I have had a few problems since my surgery. In fact I was back in the hospital in September due to an obstruction.  But that turned out okay.  It did not require further surgery and now I know how to handle it when my output slows down before it gets to the point of being blocked.  I really do not mind my ileostomy and I am so thankful to feel somewhat normal again.  It's really no big deal once you get used to it.  I had a wonderful ostomy nurse in the hospital and she was and still is very helpful.  It sounds like you will really benefit from having the surgery.  You'll be amazed how much better you feel in no time.  Good luck and keep me posted.

FPO stomagirl
Joined Jul 30, 2008

Wed, February 18, 2009 12:28 PM

 Reply posted for ksonnans.

I had a temporary iliostomy for about 4 months.  I hated the inconvenience and the pain around the stoma (the opening).  I, unfortunately did not have an ostomy nurse to assist me...long story!

The benefits....I did not have any stomach pain while I had the ostomy!  No cramping! No diarreah! No gas (out of the rear end anyway)! No embarrasing stomach grumbling!

If I have to have another surgery...I will opt for the permanent ostomy! (with a good nurse that is!)

FPO whatthescrap
Joined Feb 18, 2009

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