Ileostomy reversal - Has anyone regretted it?

That is the question that everyone will have a different answer to.

When/if you have a reversal it doesn't necessarily mean you will be trying to find a toilet more frequently. Yes some do. And some have problems. There are others that have no such problem. 

It's more about managing it if it does happen. But you should not base any decision on bad stories of others. 

No one can say for certain. Not even your surgeon.

After the operation you could be normal going to the toilet, more frequent, very frequent, or become Andrex's  biggest customer

It really is down to whatever will be wil be. And I am pretty sure aside from the bad things you read, there is a better chance it will turn out ok. 

Hi PaulP

I really feel for you as it seems as though you had an awful time of it.  All of the replies to my original question were positive with folks being glad that they've had the reversal and your story reinforces that which is great news.

For me though, I have very little rectum left which I know has a definite bearing on the outcome and that's why I feel I need more detailed information in respect of my particular situation.  A delay of 2 years could also have a detrimental effect.  At the moment, living with a stoma is doable for me (and long may that continue) and I'm quite settled with it. I've seen first hand from family the stress caused by continence problems and I'd rather avoid that if possible.

I haven't posted on other forums but will certainly take a look.  We certainly all need good news stories, that's for sure.  In the meantime, I'll continue with the pelvic floor exercises and probiotics so that I'm in the best possible place should I still get the chance to go ahead.

I hope that things continue to improve for you.

Hi Nipwoo

Yep, much the same thoughts as me.  I'm 64 and feel as though my life is more or less back to normal, even with a stoma.  I walk around 4 or 5 miles several times a week, eat what I want, am a part time carer for my 2 disabled siblings, went abroad a couple of months ago (although I'll admit that I was quite anxious about the plane and the heat abroad).  It feels like a big decision to make.

Even if I keep the stoma I'll think myself lucky.  My Dad had a colostomy for bowel cancer 25 years ago - the op itself nearly killed him and no reversal offered.  His dad (my Grandfather) died from bowel cancer.  Both were around the age I am now.  What great advances we've made.

Lets hope that we both make the right decisions for us.  (And good luck with the wedding.  What a lovely thing to look forward too)

Should probably mention mine was a lower arterial recection as well

I understand. Mine was a similar situation with not much left. My op left me with not a lot of small intestine remaining,so nearly everything I ate came out into my stoma bag and I was getting little nutrition from food and also extremely dehydrated too. I had to be fed by TPN overnight. Along with 48 loperamide a day and other medication too. 

So for me a reversal was a good risk to get some kind of normality back.

I can fully appreciate your situation and your need to be able to make an informed decision, and a need to get as much information to enable you to make that decision. 

Trying other forums will hopefully help you do that. Also there are people on YouTube too who vlog their journeys with similar medical issues. Maybe that might be a thing to consider to get more input to help you decide 

Hi BlueBlue I think that your Constantly would not offer you the Reversal of it was not the best thing for you As for the short time with your Stoma .I only just had mine for 3months and my surgeon told me that he had cut out every bit of Cancer.and we all have more Bowel than we need to work properly and he left me enough to do the job.

Remember that the longer you leave it takes longer to get back into work..Think of what it was long before you had Cancer and after the reversal operation you will be 90% better .As for going to theoilet I only have to go appropriately. 7 hours later now and I eat more than ever before.

.Alaine 

Good morning. I was rushed to Salford Royal with the worst stomach pain of my life. I had a scan and the doctor said they would operate at once. Apparently my small intestine had become diseased after sticking to an old operation scar from a hernia op. He said to me to sign the box on the consent form or go home in one! They removed about 150cm of intestine and I woke up 24 hours later with "Gollum" it was a hell of a shock to see the bag. Support from the stoma nurses was wonderful and when the surgeon said he could reverse the stoma I said yes. I had Gollum for about 9  months leakage was a problem and he was very active. The operation went well and all was good. Only downside is that I still need loperamide (about 15 a day sometimes). Big downside is that I have tremendous wind and now does it stink! All in all I do not regretting the reversal and am more of less back to normal. Best of luck to anyone thinking of having it done, it was worth it and do not regret having it done for one minute.

Peter, now ex Bagman.

Same here. High output stoma. After the reversal I was sort of ok but got painful cramps after eating. Sometimes kept me awake all night. Then one night 8 months after the reversal i was in an ambulance, stomach swollen terrible pain. In hospital for two weeks. Leak where the intestine had been reconnected. Surgeon did not want to operate as too much scar tissue and he said it was too risky.

I was pumped full of antibiotics, kept on different drips and put in a side room too because I had picked up MRSA from my previous hospital stint.

Also high dosage vitamins to try and help the join heal.

Now I am really careful what I eat. Small meals. Chew my food until it's a pulp. And do my best.

I hope I am doing enough

Thanks again to all for your replies.  It's been helpful to read your experiences, both good and bad, but it reinforces my thoughts that I really need more information before reaching a final decision. 

When I saw the surgeon recently it almost felt like a "tick box" exercise - he didn't make the decision to do the reversal. That was done by one of his superiors ticking a box on a form based on the pathology and original operation report (someone I've never seen).  My surgeon just needed to tick another box to say that he would do it.  No-one has asked me what my expectations are or what I'd be prepared to put up with in the long term.  Him saying that "if I was lucky, running to the loo should reduce to around 5 times a day" worries me a bit as that sounds like best case scenario.  Don't get me wrong though, he did a great job with the ileostomy - he's just a wee bit difficult to talk to.

On a positive note though, I'm impressed that so many of you have no regrets and are managing really well.  That's definitely something to consider and hope for.  And, I now know what some of the post-reversal issues are that I need to ask questions about.

Surgeons humour  Running to the kharzie 5 times a day. Sounds like Dr in the House ! Or only when I laugh

Yes it's all tick boxes, spreadsheets etc. And if you meet a certain criteria, go to the next step. It's a good thing I suppose because the tick box exercises are there to make sure the patient is not put at risk, but it does take some of the human element away.

It is not always the surgeon's final decision, if the computer says no. Unless you can pay to go private

Whatever decision you make I am sure you will be ok. Live long and prosper