Reversal of Ileostomy for UC: Is it Possible?

In this discussion
Replies
7
Views
10144
About
This topic discusses the possibility of reversing an ileostomy for ulcerative colitis and shares experiences and advice from those who have undergone the procedure.
vikinga

Does anyone here have experience with an ileostomy due to UC and yet be able to have a reversal?

I still have all my small intestine and 6 inches of my rectal stump. My original surgery was an emergency due to perforated bowel and mega colon. I had had issues for a year with no real help. Then came the emergency. No one really seems to know what caused this, but UC is inferred.

I KNOW it all came about because of the severe stress I was going through in my life and I KNOW it all started on the day I ate at a restaurant that seemed very dubious to me. One other person there in our group was sick for a couple of days, but because of the stress in my life, it just escalated in my system.

So now 2 1/2 years later, I am doing very well. Other than bag issues, I am feeling GREAT! I eat almost anything. I only avoid stringy things out of caution.

So my question really is....Is it possible to get a successful reversal in a case of "UC"?

Thanks

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,094 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Immarsh

Hi, my name is Marsha, and I have had my ileostomy for more than 50 years, since I was 15.

Surgery was a last resort after a 2 1/2 year battle with UC, frequent bloody losses - 20 times a day, treatments with medications that caused other lasting conditions (osteoporosis), 50 pounds of water weight gain (steroids), and almost a year in the hospital over that 2 1/2 year time period. Like you, after the first two surgeries my large intestine was removed, but I was left with the rectal stump, which never healed. When I was 18, I fought with my doctors and my parents to have the final surgery and remove the stump. The doctor argued that "someday" they would be able to reconnect people who have had that surgery. At the time, I was adamant that I never wanted to take the chance of having a recurrence of the disease. And so a year later, I had my final surgery (I was 19) and I have had no regrets. Through the years, there have been advances in procedures that allow for reconnection. A "hook up", ileum to rectal stump, results in frequent trips to the bathroom, especially after eating. I had friends who had that surgery, and they weren't happy with the results. The most successful are those that involve creating a "pouch", but that doesn't always work well, and there are often leaks... or needed revisions...

So, back to your original question, can a reversal be done? Or more to the point....do you want to take the risk that all will be well? If you really have/had Ulcerative Colitis, then I would think it would be risky, since the rectal area is still vulnerable. If you didn't really have UC, then there would probably be a better chance of success.

Both my grown sons have inflammatory bowel disease...one has Crohn's, and the other has UC. Both have been on medications for years, but my younger son is now on an anti-inflammatory, organic, vegan diet (along with his wife and 2 young sons). He is now off all medication for the first time in 20 years.

You have a difficult decision to make, so do your research well, and do what is best for you.

I wish you the best of luck.

Gray Logo for MeetAnOstoMate
vikinga

Thanks, Marsha,

I am in no hurry. Just keeping my options open while medicine advances. And I figure that taking advantage of this enormous pool of experience of fellow ostomates is a huge plus. :)

beyondpar

Well, Marsha is so right on with all her insight... As we know, UC is generally a lower intestinal issue, including the rectum, so if any of that is left to function as intended, yes, you run the risk of getting more UC. On the other hand, if the original UC is a misdiagnosis and the perforation was the cause, a reversal has a high success rate.

I was wondering, Vikinga, what are the bag issues you speak of? And do you have any large left? It all makes a difference if you get reversed. Until then, wishing you all the best. And hi, Marsha. LOL, Michael

vikinga

Hi Michael,

The bag issues are mainly because of my stoma's location. Between pubes and where the belly button was. Right in the middle. Plus, I now have a small hernia to my right lower side of the stoma causing pressure under the flange - sores. I have tried changing pouches but still not out of the woods. And when I get a leak or when changing, I often get "crap" in the pubes:(((

BUT, I am alive and the stoma is working very well! We will see.

L

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Daz1985

Hi.

I had UC since my early twenties and had surgery 3 years ago. After my op to give me my stoma, I was desperate to have a reversal. It was the only thing that kept me going. I had a second surgery around a year later. Unfortunately, it failed. I was told that the remaining intestine would simply not reach. I had a 3rd surgery a while later to remove the last of my rectum, so now no chance. The time that I had hope was insufferable, and I am ashamed to say I contemplated suicide. The 'failed' operation gave me some closure, and I am now working on moving on with my life. It was a massive decision, and I feel like I rushed it. Looking back, it seems the additional ops caused me so much extra pain, but I'm still glad I tried despite the pain - physically and emotionally.

My understanding is that a reversal is possible, but no guarantee that issues wouldn't occur.

I hope this helps, and if you have any further questions, please feel free to ask.

Past Member

Hello everybody, I had UC for all my life. Surgery was the bottom line; I knew I'm going to have it one day but had every single medication instead for good 23 years. I should have had the surgery while I was 9!!.

DAZ......you aren't alone. I also had thoughts of suicide recently. I had a bad lot of pouches which were leaking smell for no reason. This had made me lose the sponsorship I was having from the uni; the bag leaked a few times in the office. Got kicked out of the scheme in an indirect way.... Now, after spending all money and effort on the project and education before that,

Had an oscopy 5 months after the surgery and there was still UC in the remaining part. I still bleed sometimes as when I used to be before the surgery. I DON'T THINK I am qualified for a successful reversal. The rectal stump is well inflamed sometimes


I have become ruthless in caring for my life. I am in the worst situation and I cannot see any future. Thinking of suicide has changed me; I think I should see someone about it before it is too late.

Had put too many hopes on having the surgery and then reversal, and how it could treat UC as well as underlying conditions. Instead, I lost my colon and myself.

I should see the surgeon mid-November and he would require another oscopy before he tells me the final decision.

Really confused..........

vikinga

Darious,

Whatever happens, there is still so much to be grateful for, so much life and joy to be had. Both for me and for you. It's a question of attitude. If I focus on what I have to be grateful for, I will attract more of the same. If I only focus on my woes, I attract more pain...wasted energy. And, developing a sense of humor is essential! Both in our situation and in life in general! :))

Big hug!

L

All times are GMT - 5 Hours