Hello,

I had exactly the same problem. Thought it was the things that I was eating etc.

Would be going about 25 -30 times a day. I was prescribed loperamide also.

But time is the only healer for this.

I read initially that it would take up to 2 years to get back to nearly normal---could not believe it.

But it is true and very slowly you improve, but the improvement is noticeable---- some weeks can be better than others .

My reversal was now 20 months ago and only go about 4/5 times a day.

The best thing I found initially was to only eat at home.

Dont worry things do get better.

I thought at one time I would ask for a permanent bag things were so bad.

How long did your husband have a bag --I had one for eleven months.

I had pain also but that also takes time to go --still get the odd twinge.

Loperamide will be permanent --i take 6 a day now.

Good luck,

John B.

Hi Sitesi,

Sorry to hear he's having problems....I had a little look around and found this website and they have a forum for ileostomy support - might be worth putting a post on there and seeing who can offer some advice if they've experienced similar settling down issues....

www.iasupport.org

Hope it helps in some way

Dizzie

I had my illeostomy reversed in July 2010 after 5 years.   I've had all of the usual problems of frequent BM's, diarrhea and burning.   Like most others I've been taking Loperamide (Immodium) with some limited success, but seem to lurch between constipation and loose BMs.   I can go to the loo 6 times a day, or not go for 2 days.   All of this is an improvement on when I first started when I was practically living on the loo.

My diet has been severely restricted.   When I had my illeostomy, I ate pretty much what I wanted, but of course this was not possible after the reversal, as most others have experienced.   Even relatively benign foods such as cornflakes could have the effect of frequent loo visits.   Some websites recommended trying marshmallows or peanut butter or drinking fybrogel to bulk up the stools, but I didn't notice any significant difference.   The worst part was having to eat a bland diet.   Our colorectal nurse advised me apart from the obvious foods such as curries and spicy dishes to stay away from anything containing stalks, seeds, pips or skins, which pretty much ruled out most fruit, veg and nuts.   Tomatoes, even tomato sauce, was a big no-no which would result in dramatic burning BMs.   Things have improved slightly in that after 6 months I can eat vegatables if they are well cooked and can tolerate tomato in Passata form, as this is sieved.

Because I've had an illeostomy for the past 5 years and therefore have not been using my pelvic floor muscles, I have also been using a Pelvitone muscle stimulation machine to strengthen the pelvic floor and sphincter muscles under the direction of the colorectal pelvic floor nurse with some small improvement.

Now to my point.   A friend of mine who had bowel cancer some 10 years ago, although she did not have an illiostomy, suggested that I try Zantac (Ranitidine), which she has been using for some time.   She takes this twice a day and especially if she thinks that she may be eating anything that could set her off.   If she goes out for a meal and forgets to take a Zantac, then even after 10 years she will suffer badly the next day.   I have experimented with this myself with some success and having decided to really put it to the test, have even eaten a Roghan Josh curry and a raw apple with no ill effects.   McDonalds would previously result in some painful hours sat on the loo, but once again no burning was experienced.

I'm a little bemused as to why there is no information on the internet regarding using Ranitidine for reversal patients and why this has never been suggested by either my consultant or the colorectal nurse.    Ranitidine (Zantac) is primarily used for reducing stomach acid and this may destroy the 'good bacteria', hence the warnings that you may only take a maximum of two per day.   Maybe that's the reason.   I'm seeing the colorectal nurse next week and my consultant after my next scan in March and will ask them then.

Has anyone else ever used this drug?

I had an ileostomy reversal 4 months ago. The only way I'm able to travel is to make sure my bowels are as empty as possible and stay close to where I know where there is a wc, a disabled wc if possible. I always carry a change of underwear and a spare 'tena lady for men'  pair of bowel incontinence pants. I hope this helps. Steve

Hi Sitesi. So sorry reading this and now gives me even more concern than I had prior to my reversal operation, which was only a week ago and discharged yesterday. I was informed before the day after the revrseal procedure that I would be seen by a dietician, given a booklet on diet and varios medication that would help on my return home. Since my operation and return home I have been loo countless times each day (25-30times)and had at least 12 or 15 accidents, everyday.  I was discharged with no diet information, medication or discharge note! The only information I was given was, if my diarrhoea continued was, an anti-diarrhoeal medication imoduim,fybogel or loperamide. Apparently will help to thicken the motion, making the stool more bulky particularly fybogel. Did you manage finding anything that helped cure or improve the problem. We are all booked as a family for a big celebration flying on holiday in 8 weeks and now thinking of dropping out which will be devistating as well as day too day living dealing with the severe problem.

Hi, I have had the reversal, last July, been a challenge to say the least, 

am now using an iry irrigation system, it’s changed my life, use in the morning and have no thoughts of the bathroom all day and night, it’s made by Braun, none invasive, I feel like my old self before all this cancer started 18 months ago, .

Hello Turner, Thanks for the response to post. Good you resolved the Ileostomy reversal problem. Almost at my wits end now with problems after reversal and wish I had never had the operation in the first place at times. Although being informed I would not see next Christmas last year, makes you focus. I do not want to appear ungrateful for what has been achieved and I`m sure many that are suffering wish they had had the chance of stopping the Cancer or the opportunity. I am living on Loperamide and taking anything up to 15 or 18 a day some days. Having to dah to the loo 20 or 30 times in a day. Also confined to the house, for several days at a time. Then have the reverse situation when I am in severe pain, due to constipation and unable to get the balance the right.

Having had severe Diarrhoea, for almost 4 months now. This in turn has caused incontinence at times and requiring disposable underwear, particularly at nights. As well as hemorrhoids and extremely painful also.

I have seen my consultant and was informed this may last for some time, sadly but unavoidable.

Maybe will enquire about the irrigation idea.

Once again, thank you for your response

Regards Virgil

Hi Steve. Apologise for not responding to your message and guidance. Looks like I missed this post for some reason. Appears to be a common problem after reversal. We were booked as a family, for a big celebration and flying to USA on holiday. Had to cancel, which was so disappointing but would have been impossible. Potty training totally out of control now and due to circumstances beyond my control and embarrassing. Not the end of the world, as health is far more important and there will be other occasions, I am sure. Day to day living dealing with the severe problem is difficult to say the least. Love the outdoors and active walking 6 or 7 miles daily. Now had to stop that for the time being.

Once again, thank you for your response

Regards Virgil

Hi Tumer 

Hope you are well  . 18 months ago  I was diagnosed it's been so tough . I had chemotherapy and radiotherapy  and then the  stoma bag  and  on 29th of  November 2018 my stoma bag  had been reversed. With little information  to me only  it's likes being in the  middle  of  sea  swimming  back against the tide.  Since reversal  I am going through hell I can't put on weight and one minute diarrhoea the  next  constipation.  How is your  irrigation  system working and how long after reversal can one use this system any advice I would be  very grateful.  Regards Cormac