Hi everybody!

I've had my colon removed on 29-Jan-2016 and ileostomy reversal on 22-4-2016, I am scared all the time that something might go wrong with my j pouch, and most times I'm even scared to eat anything. I am able to control my BM's and don't wanna rely on immodium, but at night all hell breaks loose and sleeping is hard, how would I know if something went wrong and there is a leak inside my body for example? When I be able to gain some weight back with all the BM's? I am also afraid that something happens that causes me to have a permanent stoma bag...I apologize if my rant seems trivial but it's just hard to stop thinking. Thanks!

 

Mohammad

Original Post

I've had my reversal since this past October 2015. I practically live in Lomotil (a prescription anti diarrhea medication). Immodium does nothing for me! Nighttime is the worst time for me also!!! I miss my sleep! I do take 2Lomotil before bedtime along with 3 marshmallows which solidifies the bowel movements. I also drink a couple of Boost nutrition drinks throughout the day. When you have a Jpouch  I don't think that you can live without some form of meds to slow the frequency. That's what I was told before and after surgery. Good Luck!!!

Give it time.  I had my reversal Oct. 2013.  It took a full year for things to become stable and normal.  In the first 6 months, things are rough and the number of bowel movements are higher and sleep is at a premium.  It will get better.  I used immodium as well, it helped a little.  I also feared something going wrong and every pain and tweak made me worry the pouch would fail. It hasn't failed me yet.   

I thought it was standard to have a leak proof test before takedown. If you had a successful barium enema before final takedown to test the pouch for leaks then you have no worries, it is leakproof. That stuff will find a way out if there is one.

I took it slow with foods but gradually got back to my normal diet. I actually put on too much weight. You will know if some food plays up, so best to avoid it. Onions do it for me, love them but they do not love me. I am also now just over the borderline on lactose intolerance, so I have lactose free dairy.

Night time is the worst, but you can do some things to minimise this. Depending on your metabolism, you will know how long things take to go through you. Avoid big heavy meals later in the day, and try to purge some time in the evening. Also, sometimes it is just gas, so try laying on your stomach to pass this. That will definitely cut down on bathroom time.

You will never be free of some drugs, and Imodium or lomotil or a combination will help control output, but again you need to experiment timing and doses that work for you.

Finally, don't always get up at the first sign of pressure. Sometimes if you wait, you go back to sleep and sneak in an extra hour or two. This is definitely one that you need to work out for yourself and is the riskiest. Be prepared for a few errors in judgement, it is not life threatening

Good luck and hang in there, if you can get your pouch behaving then it is a good start and you can live, almost, normally.

 

Last edited by RDSmith

I know it is easy to say "Don't worry," but it is much more difficult to accomplish.

It is fine to rely on Imodium, and just be glad it is useful for you. I took maximum doses for years post-op, and eventually tapered down to 1-2 per day. It is quite safe to take.

You will gain weight once your body is done with healing and adapting. Be careful what you wish for, though. I wound up gaining so much weight that I had to go on a strict program. You sort of get used to your body not absorbing all the calories, and it is a shock once it becomes efficient again.

As for a pouch leak, it usually takes time to be able to tell. You eventually get symptoms of abscess, with a fever, pouch dysfunction, pain, etc..

One thing for sure, it is not about what are doing or not doing. It just happens, like being hit by lightening. Worrying about it just creates stress. The best thing you can do is to find distractions to keep your mind busy. Find things to do that bring you joy.

Jan

I was 38 when I got my J pouch as a result of ulcerative colitis. I am now 64 and have survived without any prescribed or over the counter drugs. My surgeon told me to keep fit and keep abdominal muscles strong to help with toilet visits. I have done this by swimming and paddling. In the first few months I trialed imodium and metamucil but my real assistance came from smoking cannabis. Just in the last couple of years my anus has become irritated and painful after pushing out my waste. It is just wear and tear and not much I can do other than relieve with KY gel and baby oil. It is over after 10 minutes or so and then I have a great time until the next toilet visit which is normally 2 to 3 hours away.  I decided to give up cannabis about 6 years ago now to but within 5 days I had high blood pressure, increased toilet visits, headaches and lack of sleep. Thankfully a return to the miracle weed sorted things quickly and I smoke 2 or 3 times every day and exercise 4 to 5 times a week. My specialist and doctor have both advised me to keep things as they are very happy with my history and progress.

It's been since 2003 that I had my ileostomy takedown and for years I took nothing to change the frequency or consistency of my B.M.s.  If I sense a problem I use food to deal with it.  Oatmeal, for instance, is a real comfort food for my pouch if it seems to be acting up.  Metamucil is a God send to regulate (frequency and consistency) my B.M.s.  I don't take or eat anything special unless I sense a problem.  My J-pouch and I are doing well!  Best wishes! 

CeeeeCeeee posted:

It's been since 2003 that I had my ileostomy takedown and for years I took nothing to change the frequency or consistency of my B.M.s.  If I sense a problem I use food to deal with it.  Oatmeal, for instance, is a real comfort food for my pouch if it seems to be acting up.  Metamucil is a God send to regulate (frequency and consistency) my B.M.s.  I don't take or eat anything special unless I sense a problem.  My J-pouch and I are doing well!  Best wishes! 

Hi CeeeeCeeee

Interesting because when I have oats it gives me terrible gas. I agree totally that food has a huge impact on how to manage your pouch, however I am now down to a list of least reactive food that is shorter than this post. Horses for courses!

Richard

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