Any experiences and/or advice please on illeostomy reversal for my ds.

[HullaBalloo]

My ds (18) has recently had to have an illeostomy and has had to defer starting University for a year. He is hoping to have the reversal surgeries and be recovered in that year but we don't know how realistic a propostion that is.
We have heard more negative views about the difficulties that there can be post reversal than positive but ds is determined to have it done, which I quite understand but obviously I am very keen that he has as much information as possible before he commits to anything so wondered if anyone here had any personal experiences, advice or information that they would be able to share.

Hi, I had an illeostomy reversal in November. I had the illeostomy when I was diagnosed with Crohns but was very ill, (perforation, obstruction, etc).

I also heard a lot of negativity but was not coping with the illeostomy so went ahead with the reversal.

I had the operation end of November, was out of hospital within three days and went for short walks immediately.

I started back in full time work January straight after the Christmas breaks.

I can't deny the first few weeks were fraught with constant dashes to the cloakroom. I coped by logging them, so first few days was going at least every hour but it slowly increased, (sorry tmi).

they say you should allow 6 - 12 months for complete recovery. I still have bad days after nearly 10 months but touch wood have had no time off work and carry out normal day to day tasks such as walking, train journeys, etc.

First few weeks are difficult, to be blunt have moist toilet tissues and sudocrem handy. Most important thing I found was to eat regularly.

Bit of an essay, if you have any questions I will try to answer best I can.

Thank you for your post saturdaygirl.

It is great to hear that you recovered from the op so quickly and that you are doing well now.

Ds was also originally diagnosed with Crohns and told that meant a reversal wasn't possible for him but the post op histology shows it is UC. As his surgery was only a few weeks ago we haven't yet had any consultant appointments to discuss things in much detail other than for him to be told that a reversal is now potentially possible so we are just starting out in our research .

Which op did you have ? Both an ileo-rectal anastomosis or pouch surgery have been mentioned to ds but we don't know what the differences are in outcomes between the two types of surgery if he has a choice, except that the pouch would need 2 ops so a longer recovery period.

I know 10 months is still relatively early days and that things take longer to fully settle down but at this point how is the frequency of going to the loo ? Have heard stories that some people are needing to go up to 30 times a day years after the op and that is a worry especially as ds has not been very typical in his illness so the more remote possibilities could apply to him.

Is there anywhere that you found really useful when you were looking for information about your operation or the best place to have it done ?

And probably most importantly, are you glad you had it done ?

Hi HullaBalloo

I am sorry but I silly as it sounds I do not know which surgery I had. I had my illeostomy as an emergency last May so had not had discussions, etc with the surgeon beforehand, I literally woke up from surgery with the bag. I think it was end stage bowel or something like that, not sure if that helps.

With regards to the toilet issue, at first I was going about 20 times per day but that settled after a few weeks. I remember going to a friends for Christmas dinner so only a month after surgery and lasting for round about 7 hours without having to use the toilet and getting out and about without too much difficulty.

After 10 months I find I probably have to go up to 6 times per day, sometimes more but not usually and sometimes only 3. Mornings are my worst time, probably 3 times. I find that mentally I can be affected, if I think there are no toilets I feel that I need it but fairly easy to adapt as usually public facilities somewhere around. Worst time for me was being stuck in a traffic jam on the motorway I think, that was fun but still managed.

I found the illeostomy association was best source of information. A poster's husband on this site sent me a good link if I can find it I will send it but it was a long running thread on the illeostomy association site about reversal. I tried not to research too much as I wanted to keep an open mind, not having the reversal was not an option for me as I had so many problems with leakage, etc with the illeostomy. (I tend to have the symptons if I read them).

I am very glad I had it done and even in the early days (probably about 4-6 weeks) when I was going every 30 mins to 1 hour sometimes more I had no regrets.

If you think of any more questions please just ask.

Thanks saturdaygirl - glad to hear you don't regret the op.

I think ds is of a similar mind in that he would prefer more frequent toilet visits to having a bag and, even though he hasn't had many problems with his, he is fairly single minded about having a reversal. He is particularly worried about the effects having a stoma might have on him trying to form relationships, especially as he is so young and wants to just get on with it as soon as possible. Dh and I just want him to be aware of the pros and cons as at the minute he is being a bit blinkered by his determination to get rid of his bag. He has been through so much and it really worries me that he wouldn't cope if the reversal made things worse for him but fully understand that he wants to give it a try

We have recently joined the Illeostomy Assoc and have been looking the info on their site and will have a look for that thread as well.

Thank you so much for sharing your experience.

No Problem, if you have any more questions more than happy to answer them if I can, it can be a difficult subject to talk about and I know I was so grateful to anybody who gave me help so it is good to be able to pass that over to somebody else. I fully understand how he feels about being blinkered, I was the same, I am 44 but single and did not feel "like a women" shallow as that sounds.

Good luck to your son.