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ILEOSTOMY REVERSAL AFTER 18 YEARS - I'm excited but freaking

Welcome to MeetAnOstoMate
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Posted: Sun Oct 11, 2015 9:14 pm

I have had an ileostomy for 18 years.  I was diagnosed with UC and was incredibly ill for years hence the bag...  I was told I could consider the j pouch op but after years of ill health and then feeling great finally I decided to forgo more surgery and just live with the bag.  

Then last week, I spoke to a specislist about a reversal.  He told me he could join me up without the jpouch and reckons it should all be ok.  I have booked it in for 10 December.  Now I am soooo nervous and really hope I am doing the right thing.  To think I could be 'normal' again after years of living with a bag is so exciting but the thought that I could be really unwell again is on my mind and I am scared.  My marriage fell apart 5 years ago, and I am single.  I do not date because I don't know how to tell someone about the bag as I did tell one guy I really liked and he dumped me the very next day!  I guess the thought that I could be normal is the thing that I am excited about.

Does anyone out there have any experience with this?  As that part of my body hasnt worked for 18 years I am needed to know if it will work again etc.  The doc said it will take a bit to get used to but should be a good outcome.

Any feedback is welcome.

Thanks x

Posted: Mon Oct 12, 2015 1:25 pm

Feealicious

 

Sorry. I do not have experience with this situation but it sounds like a great opportunity though. I was wondering if you discussed the risks with your surgeon? 

 

-Mark

Posted: Tue Oct 13, 2015 2:34 pm

You can still get UC back in the remaining rectal stump that's why they don't rebook that way and do a jpouch instead I would discuss this with your surgeon

Posted: Tue Oct 13, 2015 8:45 pm

Hi Feealicious, just my two cents...I am very excited for your takedown surgery scheduled for Dec 10.  You must have been so happy to hear the doctor's positive response - you are good candidate.  Between now and then, I would research on the internet and meet with other surgeons to discuss both the pros and the cons of a reconnection.  Your current doctor is very confident about your surgical outcome, but I would question him/her about potential complications or future difficulties.  Get all the facts now as you have time to do the research. 

For example, I would be very interested to know how long it will take before my body begins to evacuate regularly.  I would want to know diet restrictions such needing extra fiber or less fiber each day.  How is the doctor reconnecting...a straight shot or will a j-pouch be made.  How many times will I be going to bathroom (approximately) each day, 2, 4, 6, 8 or more.  If a j-pouch is created, how many feet of small bowel will be used?  Will I have short bowel syndrome because of this surgery?  Is my rectum healthy enough to handle multiple bms each day? 

Those are some of the questions that I would ask.  I had UC throughout my colon and rectum.  I still remember the pain of going to the bathroom sometimes 10 times per day and do not miss "the old fashion" way.  It hurt.  Take care and good luck to you.  Best wishes for a great surgery and quick recovery time.  LH

Posted: Thu Oct 15, 2015 7:59 pm

Thank you for taking the time to comment.  Your advice is appreciated.  I am very nervous as I do remember going to the toilet up to 30 times a day when I was ill, and the thought of that again is scary.  I didn't know I could be joined straight back up as always thought they would have to do a j pouch op.  But he is very confident that it should be ok... in saying that he is a surgeon and his job is to cut people open, so I am very skeptical.  Since last week when I posted this, I have decided to postpone the op.  I am going to ask for an examination of the rectum under anaesthetic first to see how that all looks.  Then take it from there.  Decided Im not going to rush into it.

Thanks for your comments smile

Posted: Fri Oct 16, 2015 8:53 am

Wise choice, im an ex j poucher, failed miserably , but i urge you to look for happy  jpouchers, listen to them and then make your own decision going forward...I basically let the doctors talk me into as i was so hungry for anything other than the bag, and voila, the bag was the best decision I have ever made reluctantly and I ve now had both ...Pooping out your ass isnt what its cracked up to be, unless its a great BM................and I can assure you , your BMs will most likely be thin and loose for quite some time, which in my opinion, doesnt make for a happy individual...Good luck 

Posted: Thu Oct 22, 2015 12:41 am

Thanks for your advice and sharing.  I am sorry you had such a bad experience.  I have heard this a lot and thats what worries me.  So happy to have postponed it until I get everything checked out.

 

Posted: Thu Oct 22, 2015 12:26 pm

Want you to know I have had a continent ileostmy (illeal pouch) for over 40 years.  I had to have one revision....(tighten the valve).  I understand the Barnett? procedure is supposed to be  an improvement of the continent ileostomy.  I have been happy with it.  I had a total colectomy so was not a candidate for the J pouch when it came out.  I have heard you need to go the bathroom many times with it.  I empty the ouch about  3 times a day, dependjing on how much I eat.  You do need to watch certain foods....corn or anything that can block the ileum going into the  pouch.   And, by the way, if your male friend left, when he found out about your bag, he's not worth it. 

Posted: Thu Oct 22, 2015 2:14 pm

If It a'int broke don't fix It.

Posted: Thu Oct 22, 2015 8:58 pm

Hey Feealicious, you've got lots to think about.  I suggest you follow LadyHope's advice and seek all the info you can get.  Beyondpar's comment is worth considering also.  Hey, you know what?  Everything everyone suggested was to help you and that's a pretty neat thing.  Take all the time you need to make the right decision.

Respectfully,

Mike

Posted: Mon Oct 26, 2015 3:50 pm

Hi Feealicious! I wish you the best on whatever decision you make on the future of your ileostomy. I'd like to offer one piece of advice from my proctologist on reversals. I was going to get a reversal of my ileostomy two years ago. Turns out the tissue in the j-pouch hardened and it was no longer possible. My doctor said that in his opinion, we have a better quality of life with the bag than with the reconnection. His reasoning is that with the bag we have control on when to empty it (well, most of the time). Once you're reconnected, there is no sphinchter control of your rectum, therefore you have to wear pampers permanently. He also thinks the bag is a better option for intimacy, as you can keep odors under control. 

 

Posted: Mon Oct 26, 2015 6:32 pm

Hi Elberix 

 

Thank you so much for sharing.. this is exactly the things I need to know and the things I am afraid of.   You mentioned sphinchter control of your rectum.  I wondered this.  I did ask the doc about control, and he said in time things will improve but it could start off a little slowly.  Is what you're saying true???  That I would have no control??  Also you mentioned the odour.. as awful as it is to talk about, it is a real concern and I am going to be very honest here.  The smells from emptying the bag sometimes are foul!  This is obviously from having no large intestine and not being able to pass gas which all goes into the bag as you know.  This is something I wondered about to.   I really appreciate your advice.  I have absolutely no faith in surgeons or doctors.  Their job is to cut people open and try and fix problems, however if things don't go to plan, I would be the one left with bad health and a lot of down time.

Posted: Mon Oct 26, 2015 10:16 pm

Hi Feealicious,  I just wanted to quickly post about odor control with the pouch.  I found that using a ostomy deodorant really helps with the odor.  Early on, people would say to me, ileostomies do not smell.... well they were incorrect.  Stool does smell, sometimes stronger than other times.  I use a few brands that do help with odor control such as M9, Safe and Simple and Nascent.  I have a bottle of Ostofresh and need to give it a try.  I have a pretty sensitive nose so I still detect a slight odor but it is reduced with these products.  I also know a few fellow mates that make up their own natural deodorizers.  Final note, I change my pouch everyday.... mostly because the filter clogs and won't work so a fresh one replaces the used one. Add some pouch deodorant and off I go.  Good luck!  LH

Posted: Tue Oct 27, 2015 11:40 pm

Dear Feealicious, that's what my doctor said: no control. Maybe there are outcomes with some or total control of stool release. I just don't like the idea of wearing pampers all the time. While the odor in the pouch can be overwhelming it usually happens in the privacy of a restroom. I do have faith in surgeons to fix things, as you said. A surgery is what made it possible for me to continue living. But if you think about it, or bodies have been artificially modified to get rid of the illness that afflicted us. A reconnection would be a further modification so the result is hard to predict. 

Posted: Wed Oct 28, 2015 9:51 am

Hi there Feealicious,

                                I have had lots of experience with this exact situation.

  UC gave me a surprise present when I was about 24/25 ( that was a very long year !!) , my plastic friend, now permanenr, Ileostomy. After about 3 years I  was given the option of a J-Pouch. I jumped at the chance and said go for it !!

  I had a great experience with the J-Pouch for about six years and then the Pouchitis began. First thing you need to know is that when Pouchitis begins then the Pouch cannot be saved !!  In my case the UColitis emerged in my Rectal stump, almost none of that is left except for the Sphincter. The Sphincter was enough to reignite the Colitis.  The docs use different names. You will hear it called Pouchitis, simply an  inflammed pouch etc but the result is the same, the Pouch fails and it needs to be removed or at least deactivated. It was , as I say, really great for several years.

   The toilet visits are 10 or 12 a day for several months after the Pouch is constructed. After about a year I was down to about four or five visits a day. This is when my life felt half way normal again. I could ride my bike for five or six hours at a time !!!! all over San Francisco and the GG Bridge. I had a gorgeous girlfriend for about a year, actually had three GFs during my Pouch Period. The third and final GF began calling me " the Tidy Bowl Man" when my visits began to rise in number. This was after about 7 years with the Pouch. In the end I could not depend on my Sphincter to function while we were being intimate. I never had an " accident " but sometimes I would have to jump up and run to the bathroom.....obviously causing much stress and ruining a delicate moment. This situation was a deal breaker as far as my GF was concerned.

  Actually I did Not blame her, I couldn't ask her to put up with that so I believe now that I engineered a breakup to avoid any feelings of guilt she might have had. We finally split. I knew that my dance with "Normality" was over and it was back to pain and 10-20 visits a day...eventually . It frelt like shitting razor blades for years . I would not give up on the Pouch and get the Ileo back . The docs kept telling me that we could fix it. I used Vicoden to control the pain and the frequency. This worked for a long time but addiction will become a problem for many people using Vicoden or other Narcotics for an extended period of time.

    My final word on the Pouch.....You might get between five and seven years of good times with it but it will eventually fail ,  in less than ten years typically. I am torn between regretting it and looking back at the beautiful memories that I created while I had the J-Pouch. Those years are like a different world in which I lived for a while, knowing that I would have to revert to the Bag eventually. I really don't think that I regret it because of those memories and the wonderful people I met during that time.

   Having the reconnection without having the J-Pouch would be a bit of a disaster I think....just my personal opinion !! The Pouch mimics the Sigmoid Colon as a holding area for the "Stinky" stuff. Without the Pouch there is no " Holding area" at all so the Stinky just comes right out with No Control at all !!! from what I know about it . What caused the most pain for me was almost pure stomach acid that came out my butt. It burned the skin off my butt leaving the exterior raw and bloody at times, burned the skin right off !!

   The inflammation and raw flesh eventually brought a risk of Fistula and Cancer and many other nasty things so I eventually asked for the Ileo back in about 2004.  It was a very, very tough adjustment but eventuall I came to terms with it.

   I am single and quite happy at this point . I may need my Sphincter removed  at some point ( no real Rectum left ) and have my butt sewn up because I have some leakage and inflammation periodically and it may be getting worse.

 

    Therefore I would Not recommend the reconnection without the Pouch. If you get the Pouch then prepare for failure after less than about ten years. The reconnection/ Pouch surgery  involves several different surgical procedures and about a year of surgery and recovery before you start using the "Normal" exit properly. 

   Definitely ask about "Short Bowel Syndrome " if a J-Pouch is created since quite a bit of the small intestine is used in the creation of the Pouch.

 

I hope this was useful to you in your decision. As I say I look back fondly on the first few years with the Pouch but the final few years were a real challenge. The main thing to remember is that when the Pouch begins to fail, with Pouchitis, then the game is over and the Pouch must be reversed because it will never get better.

 

You have a tough decision so I hope I gave you some useful info.....just my story, I'm sure there are many other people who will advise you further.

 

Hugs ,  Eamon/ Magoo

                   

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