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ileostomy reversal question

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Posted 12/11/2008 10:53 PM (GMT 0)
This is my first post so I'm not sure if this is the right place. So here it goes.

My story of how I got my ileostomy is quite unique. I have chrohn's disease and I was supposed to get a small bowel resection but it didn't go to well. I was on prednisone for a long time before my operation and the surgeon said that that could be a problem. The prednisone made my bowels soft and unhealthy but I was in a bad condition so they had to do the operation. They did the resection and my surgeon was optimistic. after a week I wasn't getting any better and I was actually getting worse. they did an ultrasound and they found that the stiches inside came undone. Stool was getting in my stomach and I needed emergency surgery. I went into septic shock or something like that. But during the second surgery they had to do an ileostomy. The ileostmy is temporary, 3 to 6 months. I spent a whole month in the hospital but im out now.

So here is my question. I have read one these forums that people go to the bathroom very often after there reversal. I have all my large intestine left and just 30 cm missing in my small bowel. When the surgeon reverses my ileostomy will I be going to the bathroom a lot as well? Maybe someone else here has gone through what ive been through as well?
Posted 12/12/2008 1:51 AM (GMT 0)
I'LL TRY TO ANSWER YOUR QUESTION AS BEST I CAN.  I ALSO HAVE CROHN'S DISEASE AND I A HAD A SMALL BOWEL RESSECTION WHERE THE SURGEON TOOK A FOOT OF MY SMALL INTESTINE OUT.  I WAS GIVEN A TEMP. LOOP ILEOSTOMY BECAUSE I WAS ON STEROIDS PRIOR TO THE SURGERY.  I HAD THE ILEOSTOMY FOR about TEN WEEKS.  I HAD THE REVERSAL OCTOBER 23 OF THIS YEAR SO IT'S BEEN about TWO MONTHS SINCE THE REVERSAL.  EVERYBODY IS DIFFERENT SO YOU MAY HAVE A SIMILAR EXPERIENCE TO ME OR YOU MAY BE COMPLETELY DIFFERENT.  I HAD A BOWEL MOVEMENT THE SECOND DAY AFTER REVERSAL.  ONCE I STARTED GOING IT WAS NON STOP TILL THE MIDDLE OF THE NEXT DAY.  LOOSE AND WATERY.  I WAS RELEASED FROM THE HOSPITAL AFTER THREE DAYS.  THE NEXT WEEK WAS PRETTY MUCH THE SAME OF LOOSE WATERY BOWEL MOVENTS BUT I WAS ONLY GOING about 3 TO 5 TIMES DAILY.  NOW TWO MONTHS POST RESSECTION I STILL GO about 4 TIMES A DAY BUT IT'S GETTING NOT TO BE AS WATERY.  IT'S STILL LOOSE AND THE SURGEON SAYS IT WILL TAKE A GOOD SIX MONTHS BEFORE I'LL HAVE A MORE FORMED STOOL.  WHEN I WAS about TO HAVE THE RESSECTION I WENT ONTO THE FORUM TO SEE SOME OF OTHER PEOPLES EXPERIENCES AND I TRULY WAS TERRIFIED.  PEOPLE WERE SAYING THAT THEY WERE GOING TO THE BATHROOM 20 TIMES A DAY AND IT WAS LOOSE AND WATERY.  EVERYBODY IS DIFFERENT AND I GUESS IT ALSO DEPENDS ON WHAT PART OF THE INTESTINE WAS REMOVED AND RECONNECTED.  MY TERMINAL ILEUM AND THE VALVE WERE REMOVED SO MY STOOL MIXES WITH BILE SOMETIMES SO SOME DAYS IT'S MORE WATERY THAN OTHERS BUT HONESTLY IT'S BETTER THAN WHAT I WAS GOING THROUGH BEFORE ANY SURGERY AND I ESPECIALLY DO NOT MISS MESSIN' AROUND WITH THAT BAG.  I HOPED I HELPED IN SOME WAY AND IF YOU HAVE ANY QUESTIONS I'LL BE GLAD TO ANSWER AS BEST I CAN.  GOOD LUCK WITH EVERYTHING.
Posted 12/12/2008 5:39 AM (GMT 0)
We are all different.One of the bigs things is that everyone has different amounts of bowel removed.Just remember that it is worse after surgery and everyone inproves with time.
Posted 12/13/2008 12:42 AM (GMT 0)
SNAP: 

Your story sounds almost identical to mine.

I had tapered down to a low dose of prednisone, but couldn’t get completely off without the obstructive symptoms coming back. My gastro recommended surgery (laproscopic) which required going to the big city (Pittsburgh) and I reluctantly agreed. It appeared to be successful, initially. (I have virtually no memory of the first week.) I know that at some point it came apart and I developed infection. All I know is the surgeon seemed to place the blame on me for having the NG tube removed prematurely or not allowing it back. I also removed it myself when I was out of it. No one said anything about the pred being the culprit or contributor.

Anyhow, a week after the surgery, on Sunday, my surgeon’s backup had to open me up, remove some more intestine, and do an ileostomy. I had a hell of an incision and spent four weeks total in the hospital.

While home, I became dehydrated from the fast bowel transit and had to have 10 days of home saline therapy for it. After several months it slowed done. Six months after discharge I had the reversal.

This went much better. I was a little slow to regain bowel function. Almost six weeks post, I’m still going too often (ten or more times in 24 hr., up twice in the night). Taking Imodium, Benefiber, and Questron.   I did have some of my colon removed when I was a child due to a lack of nerve endings (megacolon). 

Posted 12/13/2008 2:16 AM (GMT 0)
that is almost the same. Im not sure what infection you had but mine was life threatening.

When you say that it took sometime to regain bowel, does that mean that you didn't feel the stool coming and not be able to control it?

thanks
Posted 12/14/2008 2:33 AM (GMT 0)
Snap:  No, what I meant was the time it took for parastalsis to resume.  Some people refer to it as the bowel "waking up".  It took me about five days before I could pass flatus or stool.  I never messed up but the windows of opportunity  when I could defecate were limited so that I had to use a bedside commode because it would take too long to unplug the IV pole to get to the toilet and the moment would pass.
Posted 12/14/2008 7:37 AM (GMT 0)
Prednisone and other steroids not only softens the bowels, but all of your internal organ walls, heart, lungs, arteries, etc. Pray that you never get in a car wreck where you suffer internal trauma while in this state, because they will not be able to stitch or staple your organs up. It takes about 6 months after discontinuing prednisone before your organ walls heal and toughen back up to normal. This is the reason so many j-pouch surgeries turn into 3 stages.

Anyway, if you have part of you colon and it isn't inflamed, you should be making stool of some constancy, just how quickly after surgery is different for everyone.
Posted 12/14/2008 4:51 PM (GMT 0)
I was actually on pred when they did my surgery, i was so bad that there was no way i would have been able to come off of it, the surgeon said it would be better to stay on it, although my GI did not like that. But i didn't want to put off the surgery any longer, it does make your recovery time longer and harder though, cause you have to go through withdrawal from the steroids and heal from that too.
Posted 12/14/2008 9:47 PM (GMT 0)
Hi Guys, 

So, it really seems like this "falling apart" is a more common occurance than the Drs. like to tell you.  I have posted before on the list about my sad story . . .it's about the same as you all . . . I had a "simple" bowel resection laproscopically that worked great for five days, then I was rushed back to the hospital for emergency surgery because I got perinonitis from a leakage (my tissues were not up to snuff because of my crohns disease). 

I was in ICU and had a temporary ileostomy & open wound healing (that was last January).  I had reversal surgery on November 3rd and I am doing GREAT!!!  I hope that more folks who have success stories will post here. . . I had the total diarreah thing going on for 3 days, then it got better and better (each day I would experiment with different foods and that sometimes set me back for a day or two).  I am now only 6 weeks post-surgery and I have 3-4 BMs per day and it's more formed than I've had for 20 years!!  I feel great, I have no medicines but asacol and humira now (started about two weeks post surgery).  Everyone is different, but I would say that you will do great.

Believe me, the reversal surgery is a piece of cake compared to emergency surgery for a leaking bowel!!!  :-)

Posted 12/15/2008 2:17 PM (GMT 0)

hi there

i havent posted on here in a while because i have been doing really well. well here is my experience.

i have crohns disease too.was diagnosed in march 2007 and was put on pred straight away. i tried to taper but my symptoms were so bad that i couldnt and got put straight back up again. my GI suggested surgery so i had the surgery in july 2007.. well i thought i was going in for a resection but i ended up having an ileostomy due to two very large abscesses eating their way through my bowel. it was a shock to wake up with an ostomy i can tell you. i got a wound infection and with being on the pred it took ages to heal and i now have a very nasty scar confused

well i had ileostomy for 9 months to give my bowel a good rest and i had my reversal in april this year. everything went well with the surgery i had it at 9 oclock in the morning and was up and taking myself to the toilet that night. unfortunaley it going well didnt last long and i was soon having really bad D all the time and vomiting constantly. it turns out i had caught C diff from being in the hospital. i ended up in ICU with tubes coming out of my neck and things it was awful so my recovery time from my reversal was longer than i wanted it to be. but 8 months on im now doing absolultley great! smilewinkgrin   i go to the toilet probably about 2-3 times a day and its not watery.

i can eat more or less anything i want and i just feel great! i mean there will be some frequent toilet trips to begin with but it all gets better with time. your bum will probably get sore so the one bit of advice i would give is to get some good cream to soothe it. nappy rash cream is good. and like somebody said everybody is different to how their body copes with reversal surgery. my experience was a worst case senario but you have to be prepared for anything. thats why i shared my story with you but like a said worst case senario! i dont miss having the bag but i wouldnt have changed it for the world.

i wish you all the best for your reversal surgery and i really hope everything goes smoothly for you :-)

Posted 12/15/2008 4:08 PM (GMT 0)
Thanks a lot everyone

I know how you feel. I had the worst case scenario for the bowel resection. Anyway I hope things just keep getting better for everyone.
Posted 12/22/2008 11:10 AM (GMT 0)
hi i'm new here and its great to here all the sides of ur stories but im in a bit of a delimma and i dont know what to do.. i've had CD since i was 9 yrs old, i'm currently 23.. i had the ileostomy on feb 2004.. recently i have discovered that i have diversion colitis due to the illeostomy and one of the options is to do a reversal..
taking out the bag might be the best thing i can do.. i've read abt all ur recovery processes and i'm willing to do it.. the only catch here is that i'm getting married in june 09, that will give me approx 5 months to recover.. do u think i'd be up and running by that time? do you think that reversal is going to ruin my honeymoon by many bathroom trips? or should i wait until after i'm married to do the reversal surgery?
PLZ HELP

Posted 12/22/2008 9:31 PM (GMT 0)
Googs,  You should talk about this with your doctor, but I would think that you would be fine in five months . . . I was fine after three weeks, but my story is a litte different.  Congratulations on your marriage!!!  Blossom

Posted 12/23/2008 11:30 AM (GMT 0)

Thanx Blossom!

what kind of medications u took to control ur bm's? and how does the stomach look like after stitching up the stoma?

Posted 12/23/2008 6:07 PM (GMT 0)
Hey Gongs, I don't take any medications for diarreah, I am doing FINE in that department. I just take maintenance drugs for Crohns Disease (Asacol and Humira). My stomach looks fine, there is a scar where the stoma used to be . . . looks like I had an incision (which I did!), but it is totally minor.
Posted 3/22/2013 3:04 PM (GMT 0)
Hi blossom28. You and I seem to be on the same schedule. I had my reversal November 5 of last year. Don't be surprised if you have bowel problems like loose bowels etc. it takes time for your bowel to return to normal. I still have 90 percent of my Howell and I still have problems. Night seem to be worse. And I'm very athletic. And when I'm doing classes like p90x I sometimes have flare ups where I need to use the bathroom it does depend on what you eat. Everyone is different but this site is really great in terms of help with what all of us are going through. I'm very happy not to have the bag anymore. Just hang in there it gets better with each passing month. Don't be surprised if things seem to be going great and then you have a set back. Experiment with different foods and keep a log. I find using myfitnesspal available for free on your phone helps a lot to log whst you are eating. I hope this helps
Posted 4/22/2013 12:20 AM (GMT 0)
Snapper,

It is funny that you mention your story is quite unique because it is basically the exact same as mine.

I was on high doses of prednisone on and off from June until February. My first surgery went well but after 3 days I had terrible pain in my right shoulder. They found out that was referred pain and a scan showed the leak. I had emergency surgery exactly a week after the first surgery where they gave me my ileostomy.

I am having my reversal tomorrow morning so hopefully people on this thread can be of help as I am on the road to recovery.
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