how many of you have crohn's and had reversal of stoma?

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Date Joined Mar 2009
Total Posts : 1118
   Posted 9/15/2009 12:13 PM (GMT -6)   
Hi, i'm due to have my ileo reversed in Nov but while researching some sites about reversals a few said that doc's don't like to reverse stoma's if you have crohns as the crohns could come back in that area. getting panicky as this reversal is the only thing keeping me going. just wondered how many of you got reversals even though you have crohns. thanks so much Bev x
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)

Miss UK
Regular Member

Date Joined Oct 2007
Total Posts : 128
   Posted 9/17/2009 4:30 PM (GMT -6)   
Hi there I have Crohns and had my ileostomy reversal 7 weeks ago.  I feel fantastic though I'm still on the Azaphioprine I'm waiting the check I'm sure I'm meant to have to see about going onto a 'lesser' drug.  Anyway I had a foot of bowel removed and had the ileostomy for 9 months it was an end ileostomy and reversed luckily through the stoma site.  I get the runs but only really because I can't stop eating haha and it's fairly controlled and certainly nothing too much to worry about as I certainly get out and about.  I've been camping and out to shows and lots of walks and feel great.  I still get phantom leaks though it's very weird haha.
Just want to wish you the best of luck if there's any questions I could help with just ask :)
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 9/21/2009 3:44 AM (GMT -6)   
Hello there...I am one of the not so lucky ones...My colon perforated in Feb 07 20 years after my CD Dx. I had emergency surgery, 1 week later had an emergency iliostomy due to megacolon. I had multiple complications even with that surgery with wound infections (no prep prior to Sx will do that) and the stoma area never healed properly so I had a continuing internal abscess so I had an onstomy, a wound vac and a drain....

I had my ostomey revered in July 07. Again another wound infection but this did not require near as much equipment as the prior. A month later or so my joints began flaring terribly again (they do that prior to a CD flare for me) to the point I was unable to walk unless I was on Prednisone. I was on Pentasa as a preventative at the time to prevent recurrance. I saw my GI I cannot recall if the humira was started pre-fistula or post sorry... In about a week I had an enterocutaneous (sp?) fistula appear next to my belly button. I was started on Humira injections every other week. I noticed that on the "off week" the fistula drainage hole became larger and more active than weeks that I used the injection. After fighting with my insurance I began the meds every week instead however it wasnt enough to reverse the problem. I went back on TPN to see if resting my gut would help...but sadlt it wasnt enough. I ended up with a PICC line infection on top of that so they had to pull that and I had to get meds for that which made my have to stop the humira...visious circle. I had to have another resection (this I was given a prep for the ostomy reversal I was just limited to clears the day before if I recall since things moved so rapidly thought me).

I had the Sx done in Jan 08 to fix the fistula. For a few weeks it was no meds (Humira) I had megacolon AGAIN...NG tube blah blah...and due to me not being able to get back on the humira I was in fact flaring again (it moved to my rectum and a different location in my per the scope as of Oct 31 2008. My Dr did a CRP to check inflamation levels when I was on the Humira 2 times a month as opposed to 1 time a week and they were elevated but when I got back on the 1 time per week things settled a bit.

I am an odd ball out though I mean look at all of the complications I had along the way. Most people have a long time before if ever it returns as long as their GI keeps a close eye on test results and keeps on top of things.

I wish you the best of luck and will keep you in my thoughts and prayers that you wont get the bad luck I did...I still blame it on being born on Fri the
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 9/21/2009 12:48 PM (GMT -6)   

Hi thanks to both for replying and for the info

Miss uk; glad to hear your doing well long may it continue.

Dragonfly Blimey you really had a rough ride!!! hope you too are doing ok now

                                    Thanks again guy's

                                         Bev x

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)

Regular Member

Date Joined Oct 2004
Total Posts : 388
   Posted 9/23/2009 4:22 PM (GMT -6)   
diagnoised with chrons 1983,surgery 2003 illeostomy had 50 plus inches of my intestines removed,my illeum,and a quarter of my colon...reconnected 2005.I had numerous Drs. in N.C. choosing to have my surgery at Wake Forest University.I was fortunate to have been diagnoised early,My gasteronolgist believed in non aggressive approach to chrons.I was treated with drugs and prednisone and given iv fluids to hydrate and rest my stomach.I lived a somewhat normal life had good days and months and bad days and months.2001,I had the mother of all flares my stomach was blocked I spent almost 2 yrs in the hospital i was given every drug imaginable as well as remicade emergency .I had a very rough time with the illestomy.I was so dehydrated and blood pressure so low that they could not do surgery to reconnect.My illestomy was concave hard to fit with a bag. Only an ostomy nurse was capable of getting a bag to adhere ,untill I learned all the tricks,even then I had to set an alarm to wake up hourly to release the gas or my bag would blow off, I strongly urge anyone getting an ostomy that they donot leave the hospital unless their surgeon has a game plan to ensure that they are physically capable of changing thier own bag Ostomy nurses only work mon-fri 9-5.Home health nurses even drs are incapable of securing a bag a concave bag as I found in numerous trips to the er, sometimes the bag didnt last getting to the parking lot to go home.I spent a long weekend exhausting the supply of bags until monday morning.MY reconnection has been successful however I have about 80 percent control over my bowls.When I flare i could live on the commode.However it is better than a blocked stomach and the illestomy.I currently take no medication.
sweet dreams till the sunbeams meet you!

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted Yesterday 6:10 AM (GMT -6)   
I had a temp ileo for complications from surgery many years ago...had it reversed and NEVER had Crohn's issues where I was put back together...issues were elsewhere:(

You should be on maintenance drugs, even if not flaring, to keep things under control. Crohn's can continue even if you don't feel it until it is too late.

I think it is more that docs know that once surgery is performed, Crohn's could come back somewhere, not necessarily reversing an ostomy.
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