My 7 y/o had a total colectomy in May, 2007. He still does not have contol of his bowels. He is taking Lomotil and Loperamide daily and is maxed out on the dosage. He is on a high fiber diet also. He is also taking Questran. He has accidents at school and has to wear a pull-up at night. Does anyone have any suggestions?????

I am so sorry your little guy is having these problems. My son had surgery at age 9, take-down at 10. He has always had good control during the day, but still has periodic leakage or incontinence at night, seven years later.

My son was never interested, but another member here had good results from rectal physical therapy. It is not widely available, so you might have to get a referral and/or do some looking to find a qualified rectal physical therapist. You also could request tests for sphincter strength to see exactly how much control he does have and determine whether the muscles are permanently damaged or only weak.

Does your boy have an ileal pouch, or a straight pull through? The latter is much more problematic regarding control.

Jan

He has a J-pouch.

Could his problems be bacterially induced? The only other things I can think to try are:

1. Antibiotic therapy (Flagyl or Cipro) if he has signs of pouchitis
2. Probiotic therapy (VSL#3 DS, Culturelle, a good yogurt like Stonyfield)

I do not have symptoms of pouchitis, yet I know my gut is easily influenced by bacterial imbalances. Starting on VSL#3 DS helped me early on much more than fiber or immodium/lomotil.

If you want a good probiotic yogurt, the Stonyfield stuff is really good. It's not cheap (~97 cents/container for organic), but is very tasty and I'll bet he would eat it. The 'Caramel Underground' is my favorite flavor). You might also check with your insurance to see if VSL#3 DS is covered. With a $30 copay it's just as cheap for me/month as Culturelle would be.

I hope that is some help for him. I used to teach 7-8 year olds, and feel for your son.

Steve

He has had pouchitis before and he is not having the same symptoms.

What is Probiotic therapy?

Probiotic "therapy" is the introduction of good bacteria into the digestive tract. After a period of time (a few days to a couple of weeks), these bacteria colonize in good numbers and can help digestion in a couple ways:

- they can aid in digestion of food
- they can help keep the things in balance; keeping "bad" bacteria from overpopulating the gut and causing problems such as gas, diarrhea, bloating, etc.

Most doctors don't advocate probiotics as much as they should - due to the lack of information and research available as compared to antibiotics. And even though there are studies showing the benefit of probiotics, I don't think the mechanisms of exactly how they help are proven enough for a lot of doctors.

Check out VSL's website if you want to read what they have to say: http://www.vsl3.com

They have done their own studies showing their blend and concentration of good bacteria effective in keeping both UC and pouchitis in remission. Most people here who take VSL#3 notice that their stool firms up quite a bit after taking it.

You should know that anytime you introduce new bacteria into your system like this:
1. Do it slowly and gradually
2. Don't be surprised if there is an increase in gas initially (over the first week or two). Your body will adjust

I think rice can be helpful, as can other "absorbent foods" that absorb acids and firm up the stool. Also, when he's at home, try to get him to "hold it" for longer and longer periods of time to stretch out the pouch. This is really important. Walking around the block and controlling it can be helpful too. The high fiber diet may be too much fiber for now...may need to be more gradual, to be quite honest, after 20 years, I still do not do well with a lot of fiber. One large salad and I'm on the run, though sometimes that's a good thing because I need to be cleaned out. Rice, oatmeal, bread (but not dense bread and not too much at one time), and yogurt can be helpful. Someone said grapefruit juice (or was it lemon juice?) Poor little guy. It was a five year recovery for me at age 28 and not easy. I can't imagine how a 7 year old would handle it. Make sure you are talking this out with him regularly...I don't want him to build up unresolved anger, which I'm sure all of us who had UC as a child have experienced. Keep reading and asking and experimenting. It will get better over time. God bless.

Hello

Things are obviously not as they should be after nearly a year. How much input are you getting from your Physician or surgeon?

I also took Lomotil and Loperamide - and in large quantities. Finally, exasperated at the lack of improvement, I quit taking them - and guess what... no noticeable difference, except I felt less bloated and more in control. I'm not necessarily advocating your son does the same, but at least you could talk it over with your Doctor.

Also, does your little boy really need to be on a high fibre diet; wouldn't a regular amount of fibre be sufficient? From personal experience, I've found that too much roughage gives me diarrhoea - particularly insoluble.

I sincerely hope things get better for his sake. My heart goes out to him, he shouldn't be suffering like this at his tender age.

All the best
David.

Thanks to everyone for the imput. The doctor has taken him off the high fiber diet (it was just too much fiber) and the Questran (not helping). He have now started on Codeine as it causes constipation. I think it is helping but he still has so many accidents. I'm beginning to wonder if he is just tired of trying and having to deal with this.

If he's incontinent during the day, I think it means his anal sphincter (the one under voluntary control) is not strong enough to hold it in. I'm surprised if they have not suggested something like Kegel exercises.

http://www.mayoclinic.com/health/kegel-exercises/WO00119

His sphincter has been checked and his GI said it was fine.

Sounds like you have explored all the usual issues. I think that just leaves immaturity. He is at an age when bowel/bladder control is iffy in the best of circumstances and he has this challenge of loose stools and no colon for storage. This should improve with time. I would suggest Pullups during the day for the time being until he is more confident. Accidents at school can be the worst, even with great teachers and understanding friends.

I hope the codeine kicks in soon.

Jan

The codeine seems to be helping. He is having fewer accidents. YEAH!!!!

That's great news!

David