Seeking Experiences with Ileostomy Reversal Surgery

So in March of last year, I had surgery to have a total colectomy with end ileostomy. I was told that since it was a final determination of ulcerative colitis, that I could later on have a reversal if I wished. I'm looking to get information from anyone who has had this done, or knows someone who has, to get information regarding this process. I know that if I do have the reversal done, it will be a two surgery process, first to create a small pouch with part of my small intestine, and the second to reconnect the small intestine to the rectum. I'm looking for information regarding if people have had this done and had it go well, and are still living with the reversal, or if people have had to go back to an ostomy after a failure of the reversal at some point in time. I understand the overwhelming chances that a reversal will not be a permanent deal, so one of the big things I am trying to discern is what a good time range of possibilities is that a reversal would last. One of the big things weighing on my mind with my decision is due to the lifting restriction, if I were to have a child in my current state, at a certain point, I would not be able to lift them up to play and do certain things without the risk of herniating my stoma. This is why the time frame is an important issue in my mind, because I feel few things could be as crushing to a parent as not being able to pick up their own child. Any thoughts, and experiences would be appreciated, thank you.

Moses,  

I am not sure if my reversal is similar to what you describe or not.  I had my colostomy in '08.  My surgeon refused to do a reversal one year later,(as she said she would), so I went shopping and found a surgeon that would do it for me.  It was exactly one year later that he performed the reversal.  The only bad experience I had was a reaction to the pain medication administered and that was extreme nasuea.  Changed meds and all was well.  It has been three years since my reersal and I am as healthy as a horse,  also I am 75 years old,  I do all my own yard work as well as some pretty heavy lifting in the process.  I eat what I want and live pretty much the life style I want.  I have heard of some experiences from others that did not have the same luck as I, so I am ot advocating the procedure one way or the other,  It can be a very rewarding experience.  Give it a lot of thought and talk with others like yourself.  I wish you luck--I too like to lift my grandchildren,  Stay well my friend and God speed.



Been there............

Moses,

The loss of the colon results in a very loose stool, as you must be experiencing with the ileostomy.  I had a reversal and the j-pouch leaked and eventually, one year later, I had a perm. ileostomy done.  During the time I used the j-pouch the output irritated my bottom and had to use all kinds of things to get relief.  I welcomed the ileostomy back and have had no problems with the skin around it.  The perm ileostomy was easier to manage than the loop that was the temp ileostomy.  Not sure how you have an end ileostomy and still have something to sew back together, but I am sure it is possible.  When I had the j-pouch I made sure I knew where the bathrooms were located in any establishment that I went into.  As far as the kids are concerned I have taken care of my now 5 year grand child for the last 3 years with the ileostomy and I know there is a weight limit but if I now need to lift her I do it very carefully and for very short periods of seconds.  With smaller kids I found it not a problem, no complications.



Good luck

Moses,



I had a subtotal collectomy, illeostomy in 2008. My doctor said that she didn't recommend a reversal for me. The reason is because of why I had to have the illeostomy in the first place. I have scleroderma and am on pain meds. The pain meds cause extreme constipation for me. And with scleroderma, it caused my sphincter muscles not to operate properly. So if I had a reversal, the muscles would still not work properly. My doc said that if I absolutely hated the ileostomy that I could have the surgery..but she wasn't crazy about the idea. For the past 4 years I have lived with the bag. I have to say that I have done fine with it..but lately for some reason, I just wish I could have it reversed. My main reason is that I have trouble digesting so many  foods that I like. I do not get enough veggies or fruits anymore because I end up with blockages all the time. And those are painful! So that is my story! I know this wont help you, I just felt like sharing my story. Good luck to you. Catherine

I don't think gettting a reversal will allow you to eat all the fruits and veggies, Catherine.  I was eating them fine with my ostomy until I was reversed.  Now I don't dare or I will have a blockage.  

I wish there was a way for them to remove all the stuff that doesn't work and we can still enjoy life.

I am considering having my ostomy back permanently as I still have incontinence issues two years out.  That won't solve my blockage issues but at the same time they are going to check out my small intestine visually and see what is going on.  And I am so hoping they can find the problem and fix me all back up and I can go back to eating salads and apples.  I miss them so much.

I feel like it is hard to try and be healthy when your body doesn't let you eat what it needs to be that way.

Take care everyone.

Words of Encouragement from Ostomy Advocates I Hollister