Reversal of stoma !

This is a great forum with all the info available.
I had an emergency operation (3rd op related to crohns) in September and woke up with a stoma fitted in order to give the bowel a rest for 4 to 6 months.
I am off to see my surgeon next week with a view to reverse it and get back to normal (if such a thing) and probably then start on hirmia.
My dilemma is do I leave things as they are or do I go through with it as I read one can have problems with this type of op and with hirmia.
I presume crohns is still active, even though the bowel is being rested ?
I am still taking medication, azathioprine, predisalon etc
Views and advice most welcome thanks

I have not had this type of op myself so could not advise much but I think you have got a good point to raise with the docs - given the meds and op you have had do you still have active disease going on. I may be looking at this wrong but I would not see the benefit for you to do the reversal to then go straight into problems with a flare because the bowel hasn't actually settled. I would ask if they plan to check to check on this first before going ahead with the op. It is also worth checking out our stoma sub forum as the folks here would be able to give some advise as well: http://www.crohnsforum.com/forumdisplay.php?f=46.

Please keep us updated on things go next week.

AB
xx

Thanks for your reply, will keep you updated

Paul,

For what it's worth, here's my experience with a similar situation.

I've been diagnosed with Crohn's since 1971 and have had two resections along the way. The second was done on a semi-emergency basis in 2006 and resulted in an ostomy. The ostomy was dehydrating me to the point where I needed to go to the hospital weekly for IV fluids, just to keep up with the fluid loss. From day one, I was looking for a way to have the ostomy reversed. My surgeon convinced me to wait at least a year before he would consider it. He and my GI wanted to monitor how things were progressing and let my bowel rest and get in better shape. Between the earlier resection and the current one, they wanted to give me the best chance possible. I'm so glad I listened! I waited almost nineteen months before the reversal. The reversal was a success, but not without some complications. The surgery was every bit a major as the resection was, if not more so. My bowel had a difficult time restarting and that created some problems and a longer stay in the hospital. Additionally, because of all the belly surgery, I developed massive hernias, which resulted in two additional surgeries, where plastic mesh was put in to hold me all together. All in all, it was four surgeries in just over two years.

Was it difficult? Yes.
Was it worth it? Most definitely Yes!
Would I go through the surgery again to reverse the ostomy? In a heartbeat!

But keep in mind, as much as I wanted to rush it, I'm very glad that I listened to my surgeon and my GI and waited for the reversal. Had I had the reversal before I had gained back my strength, I'm not sure what the outcome would have been, although I doubt if my surgeon would have performed the reversal if he didn't think I was ready for it. Needless to say, I fully understand your urgency in exploring the reversal. By all means, talk to you doctors about a reversal. Listen to them. Make a plan with them and give yourself a reasonable time to get your body back in shape, and then give yourself a little bit more for insurance. I know how difficult it is to wait, but believe me, rushing into it will do no good at all. Give yourself the best possible chance of success!

Good Luck!

Scott

Hi Scott and :welcome:

How things are for you now - is the the tum settled? Are you on any meds?

AB
xx

AB,

Thanks for the welcome.

Yes, things have settled down pretty well. I'm on 6MP but nothing else on a regular basis. I take prednisone when I feel a flare coming on, which fortunately isn't too often these days. I hate prednisone because it make me depressed, but if it works....oh well! If I take the prednisone early enough, I usually don't have any significant symptoms to deal with. I've had Crohn's for so long now (more than 40 years) that it takes something pretty dramatic to get my attention. I always figure that my ambient, walking around pain level would put a normal person in bed for the day. LOL! I can't complain much. I've really been pretty lucky with the disease compared to lots of other folks that I know. Through it all, I've been determined to not let it rule my life and so, I pretty much do what ever I want to do in spite of it. I've certainly paid a price for it, but it's been worth it to have the freedom.

Happy Hew Year!

Scott

Happy New Year to you too

Out of interest do the docs now ever keep an eye on your vitamin levels?

Yes. I take B12 shots, as well as Vitamin C and Vitamin D supplements. My last blood work showed a huge improvement, so I guess now I'm on a vitamin regimen to stay. I feel better for it, so it's alright.

I just posted a Hello to the forum on the New Stories board with a little more of my background and some things pasted from this thread. It's nice to have a place to talk about this. When I was first diagnosed, nobody knew what it was and those who did know were not talking about it. It was very much a closet disease. I guess my mindset has been still a bit stuck in that mode. I'm happy that it's so much different now!

Scott

Hi Paul, You mentioned this is the 3rd operation you've had for Crohns but without knowing your condition and your surgical history, it's practically impossible for one to make an educated recommendation. The reason to have a permanent ileostomy is when your colon and rectum are sick and need to be removed. Other than that, one does not usually get a permanent ileostomy. I say "usually" because I'm not a doctor. 53FC mentioned being very dehydrated with an ostomy, and yes if you divert the intestine so that nothing goes into the colon then you will become dyhdrated easier than before. But normally, that's easy enough to fix through diet without going into the hospital so I'm guessing that something else was happening with 53FC. For exmaple, I know of someone with an ostomy who had the flu and got so dehydrated they needed an iv bag. I've had partial obstructions and when that happens, I get very dehydrated very quickly. So there are certainly concerns, but dyhdration with an ostomy is not usually so bad.

Hi Paul

Just read your original post. You must have been in a pretty bad way to have an emergency op and then the stoma. I had an elective ileostomy (Oct 2010) and was warned that a stoma was a possibility. I still remember waking up in St.Thomas' recovery ward, violently shivering with cold and the first thing the doctor said to me was "Sorry, you've now got a stoma. It was the only option given the state of your innards!". They realise just what an impact having a stoma will have on a patient.

I managed fine with the stoma but I think that the thought of having it removed probably helped keep a positive attitude. The reversal happened in (Jun 2011). Since then I've had 3 colonoscopies (the last one on 20th December) that showed no signs of the Crohn's having returned. I'm also on no Crohn's drugs except for Imodium which is the same as when I had the stoma. Realistically I know that it is likely the Crohn's will return sooner or later but so far so good.

Because we are all different in the way we suffer from (and cope with) Crohn's I can only relate my experience with the big caveat that your circumstances may be entirely different but I never considered not having the reversal (sorry for the double negative), not for one minute. Scott's got it right. Don't rush to have the reversal before your body is ready. I had complete faith that my surgeons wouldn't carry out the reversal unless they was completely happy. The last thing they want is you back under the knife a few months later.

Keep posting

Regards

Nigel

Thanks for all your replys very helpful.....will see what "the man" says next week. One chap on here has put a very detailed,with pics, information, which was brilliant.

Hi I have had what they thought was UC for 8 yrs, until after my surgery 1.5 yrs ag they decided that I had Crohns.. Had emerg surgery and they removed all but about 14 inches of my colon Then was with a stoma for 7 mths then I had the reversal and I had many problems in the hospital because my bowels wouldn't wake up . I am on Imuran 150 mg per day and no name Imodium. I can pretty much eat what ever I want ,but I am cautious of spinach , penuts etc . I don't even want to have to experience a blockage. I feel well , and have just gotten off Prednisone after 1 and half yrs. Got some chunk to deal with...lol. Otherwise I don't think I could have dealt with NOT having the reversal. I hope that all goes well with the choice u make down the rd. Good Luck.

Hiya How long is the recovery time following a reversal op?
Thankyou

This forum is brill.....so much help and advice....thanks
As for recovery time will let you know.

My recovery time for the reversal was longer than expected. Surgery was Feb 20th 2012 ,finally got out of hospital on March 8th . Seemed long time to heal then had a relapse in May (prob from moving and boyfriend had Heart attack) stressed again and was down and out most of last summer . Once they got me on Imuran it only took about 3 wks before I started feeling good. Everyone is different.

Quick update: saw the surgeon last week and he wants to check that the crohns has been dealt with so booked in for an endoscopy and MRI next month.
If that goes well he will reverse the stoma,probably by keyhole surgery.....should be interesting

Hi Cecilialynn, I thought I was the only one unfortunate enough to go into lockdown. I've now seen it mentioned a couple of times by others. I experienced it both after the ileostmy and the reversal. The surgeon said it affected around 25% of patients but I hadn't been warned pre operation. Did you also get hiccups? If I had known it was a common problem I would have coped better. The worst thing was knowing that I couldn't go home until I was eating properly but not being able to face eating anything

Regards, Nigel

Will be keeping fingers crossed for you Paul, how is the tum feeling at the moment?