What to expect post stoma reversal.

Thanks everyone, I had read about LARS and wondered if I might have that. Evenings are bad for me as I find myself going frequently and I feel I have lesss control then. Have seen an improvement though and am trying to focus on the positives. 

Hi KazzaB

I have just joined this forum, i was just wondering how you are getting on now? I am now 2 weeks post my ileostomy reversal after 9mths of having my stoma. My bowels have no pattern to them some days I am going to loo up to 30 times, just passing small amounts. I have realised certain foods can make this worse ie. spicy,which I new was a risk at the time but only had a small amount of chicken tikka. Then I had a small amount of asparagus which had the same effect. I have been doing pelvic floor exercises, I am struggling with control. The pain I am just managing, I use Suducrem and have just started using Anusol which helps with the pain. I am staying positive that all will be well at some point.

BW

Irenie

I sympathise wholeheartedly with your multiple visits to the loo, anyone who's been through this knows just how debilitating, depressing and downright painful it can be. Not to mention costly - our (metered) water bill quadrupled when I was at my worst and flushing the loo 20 times a day.

I'm now about 18 months post ileostomy reversal and still having problems but they are getting better, just very ,very slowly.

Personally I found that the pelvic floor exercises have helped but it took me quite a while to get referred to a physiotherapist at the local continence clinic and only then after a diagnostic physiologist had checked out my rectal squeeze (or whatever it's called). It's been slow work but the physio has just signed me off with a 5 out of 5 score on pelvic pressure and I'm feeling a lot more confident.

The other thing I feel has helped me a lot has been going on a low FODMAP diet. I suffered greatly from what I've termed "wind and leak" sessions where passing a tiny amount of wind would also produce a bowel leak and that recurring over and over again, especially at night and all night at that. The low FODMAP diet seems to have greatly reduced (though not removed) the wind, giving me back quite a bit of control.

There's no way of knowing exactly just what has led to my slow improvement, it could be the pelvic floor exercises, the low FODMAP diet or just the passage of time but things are definitely improving for me.

Thank you for your reply, it helps not to feel the only one going through this. I started pelvic floor exercises recently, and I'm keeping a food diary. It's good to know there is light at the end of the tunnel however long it takes.  It's so good not having to sort the bag every day/night, I'm trying to keep positive. 

Hi Kazza.  I had my reversal 1 month ago after having my stoma for 1 year.  The first couple of weeks I would experience 3 or 4 hours of diareha in the evening.  This has settled a bit.  I find when I have diareha I still do not have any control....I am told this will take time and to be patient.  My doctor told me to go ahead and eat whatever I like, but someone else in this group suggesting sticking to my ileostomy diet for a while and that does help.  It can be difficult to tell whether you need to pass gas or have a bowel movement.  Always best to assume the bowel movement and head for the loo!  What are the bowel control exercises you are referring to?? I wasn't given any exercises.

Hi Karena

My dr advised me to start doing pelvic floor exercises. They are the same as what is advised after child birth to help strengthen the pelvic floor, it will help your muscles in your anus and hopefully give more control. Hope this helps.

BW

Irenie

Thanks.  I will give it a try.

I had rectal cancer a few years ago and an ileostomy, ostomy bag then the reversal with no bag, bathroom bowel problems and about everything you mentioned. I made a website to help people after my 2 surgery's because I had the same questions as you, and was hard to find info about it all on the internet. Its helped lots of people in our situation, plus it has a forum of lots of people like us, and I think you will find it extremely helpful. It is at ileostomyreversalsurgery (dot) webs (dot) com

Hi KazzaB

I had exactly the same issues; I opened my bowels the day after the reversal and the first 2 days was horrible. I was supposed to go home but I had to stay 1 week as an inpatient because my  bowels just wouldn´t stop, and I had to find a good balance of food and loperamide. For the first 2 months or so I used tenna pants as I wasn´t sure if wind was coming out on its own or with a friend. You slowly get back to "normal". I was told that it´s always best to be on the soft side, however I do go from constipation to diarrhoea really easily and winter cold doesn´t help (I am really sensitive to low temperatures). I also had a couple of accidents, but slowly you gain control. I discovered that breathing exercises sometimes help. I am 4 years down the line and don´t quite have 100% control, but I do have 80-90% control. I always take some extra loo roll with me in my bag and also a packet of andrex washlets (they can be flushed down the loo, not like the baby wipes). 

You will get there, just patience and listen a bit to your abdomen. 

Take care

Big kiss and hug

Rocio

Hi,

I had about 6cm of rectum removed (due to malignant growth) two months ago and was using stoma bag for about six weeks. Two weeks ago, I had my reversal done. After the ops, the first three days after going on soft/solid food was a nightmare. I was practically going in and out of the toilet every 30 minutes (I was fortunate to have a single room in hospital). When I was washing my bottom at the bath, the watery stool simply just flow out uncontrollably. 

After 5 days in hospital, the stool became less watery and I was discharged. Now the bowel calling is more controlled. However, once it calls, I have to go in and out the toilet for minimum six or seven times within a span of two hours or more. The stool simply refuses to come out all at one sitting. I just have to get use to the fact that it is part and parcel of recovery. 

It has been two months since the start of this episode of finding I have a malignant growth in my rectum and the process of removing it, stoma, reversal, etc...

I joined this community only two days ago and I find all the posting very informative and supportive. Therefore I am sharing my experience here. 

And thank God too that I don’t need further treatment such as Chemo, etc...

Take care everyone. Be strong. Eat well, exercise well. 

Luv.