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Considering Reversal

Posted: Wed Jan 03, 2018 1:40 pm

I am new to this site and wanted to join to learn more about having a reversal done.  I go for a colonoscopy on 1/9 to make sure everything looks good and a reversal can be completed.  I had a sigmoid colostomy done in March 2016.  I have Crohn's disease but my Crohn's has been in remission and well controlled for the last 18 months or so.  I don't mind the colostomy and have been OK mentally dealing with the lifestyle change but if a reversal can be done, I want it reversed.  My biggest fear is having to live in the bathroom again.  Before my colostomy I would be in the bathroom for hours b/c of Crohn's and IBS.  If I have the reversal, I don't want to spend my life in the bathroom nor not have a life due to the fear of being too far away from the bathroom. 

I have a great career and great family.  I don't want to lose my job or my family due to the bathroom. 

Any advice, comments, or concerns is greatly appreciated.

Posted: Wed Jan 03, 2018 6:04 pm

Hi JD90,

I have a Ileo-J pouch and it works great ( for Me) not everyone can get used to them, you don't mention your age which I think is a factor, do you wish to stay young, i was told at 36 I was to young for a bag, the pouch makes you look more normal, on that all I can say is if anything went wrong with My pouch , now at 56 years of age I'd keep the bag, dont know if this helps and i'm sure others may disagree.

Good luck.

Posted: Thu Jan 04, 2018 2:13 am

Helo JD90.

Decisions about reversal are very personal.

My own take on it was that the condition I had before was not likely to have been resolved by having a temporary stoma. If it was reverse, then my incontinence and pain would most likely return at some stage, necessitating yet more surgery. I decided to keep the stoma I had and manage my new life accordingly. It's gone well for me so far.

Best wishes

Bill 

  Past Member
Posted: Fri Jan 05, 2018 4:12 pm

Hi there,  I'm a new member too, and have a permanent ileostomy.  The top surgeon for J pouches in Canada said that I was at risk for J pouch, but never really disclosed why in detail.  She has a reputation for being a non-communicator and very arrogant -- but an outstanding surgeon!  She said I was "too old and too fat". That's all as explanation.  I was about 200 lbs and 57 years old and extremely upset that she refused to do a j- pouch on me. I had spent the past 3 years communicating with people around the world with J-pouches and was convinced that I wanted one. 

After the bad news, my husband and I  found, online,  72 published articles written by my doctor, an expert on J pouches, about "Post Op  complications of the J-pouch," based on her 20 year follow-up study on all the patients she had created J pouches for in her career.  We could not access these articles, as they were written for other doctors.  Although we didn't know what the risks would be, my husband convinced me to listen to this expert's advice. "  "She has to know what she's talking about," he said.  Plus my husband said he couldn't stand going through  another operation with me.  (Each time I went into surgery for something, the docs thad trouble bringing me back to my normal levels -- thus I would spend a an excessive amount of time in the recovery room.  My husband was terrified during each past surgery that I wouldn't wake up.)  So I consented to a permanent ileostomy.

As part of the recovery at Mt. Sinai Hosp. in Toronto, you meet up for discussions groups with a social worker and current and former ostomates and and j-pouch people.  After having had several discussion sessions over the 11 day period of my recovery at the hospital, I realized....and this is only MY opinion........... that getting a J-pouch is like playing Russian Roulette.  There was a middle aged lady who had 100 % success with her J-pouch.  But there was also a 22 young man, who was so shy and introverted and said that he had to room alone at college because he had to wear a diaper at night and didn't want anyone on campus knowing about that. He believed that he'd had a diaper for life.  My roomate was someone who had had a J-pouch, tons of infections, and after 5 corrective operations was finally put back on a permanent ileostomy.  She kept saying, " You should be grateful to your doctor....she saved you 5 operations, and lots of complications!"

So my bottom line is:  1.) Ask your surgeon about the risks.  He/she should disclose, 100%, all  your risks, so that you can make an informed decision. 2.)  There is at least 1 or 2 forums for people with permament and temporary ileostomies on Facebook..  Reversals, their successes and complications are all discussed in detail there!  Many people in the group are like you, trying to decide what to do.  And those who are thrilled with their reversals and those not so thrilled,  all talk about their experiences on those Facebook forums. 

Between your doctor, these forums, and your family, you should be able to make the most educated decision.  Best of luck.  Julie  

  Past Member
Posted: Fri Jan 05, 2018 4:21 pm

PS. I've had my permanent ileostomy for the past 9 years and am thrilled.  I've had no complications, have adapted really well, even though I'm a water baby and spend hours in the ocean or in nearby lakes.  My husband and I had no issues having sex with my permanet ileostomy.  I am, for the past 2 years, a widow, and have to admit that I'm scared to date....and part of it is that I don't know how a non-ostomate would handly my situation.  It was different with my husband....as he had encouraged me to get a permanent ileostomy.  I'm on this site in hopes of finding a friend or Travel companion who would understand my being an ostomate.  Best of luck, Julie.  

Posted: Sat Jan 06, 2018 7:56 pm

Thanks for the responses. I’m still considering the reversal but will think about it and continue checking this site for more posts. 

Posted: Mon Jan 08, 2018 7:31 pm

I have had a permanent ileostomy(no other choice due to advanced FAP)  since 2013 and cannot imagine wanting a reversal.  The crazy part is that it is very much easier traveling, etc. and even thought I never had any symptoms that gave a hint to all the mess inside me from tumors etc.

I am very fortunate to be cancer free even though the organs that are all gone or mostly gone have created dietery monments.

I prefer the freedom of the pouch....that is not to say that there aren't issues from time to time but that is true of anything....

You soon learn to be creative in ways to eliminate having to be in a bathroom -- I keep packs handy and can change a bag most anywhere if given a minute to think where I can have 3 minutes or less of privacy.

I had a wonderful surgeon and medical team which seems to be the big issue from what I have seen on this site.  My surgeon told me that J pouches are not a problem and are better (if done right) whether you ever want a reversal or not. However there are many instances where the amount of involved intestines leaves too little healthy to make the pouch  I do not have experience with colitis, IBS, etc. but have many friends who do and I shake my head in wonderment that they just don't have it out and be done with it....

 

 

 

Posted: Tue Jan 09, 2018 12:03 pm
Hi Awesful I had my iliostomy since 1994 It will be a slow progress but just take your time and ask questions. this site is a very good one with alot of help and friends. Dont be afraid to ask any questions. If I can be of any help let me know.
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