Yes, this is common. This is rather drastic surgery (I know you know that!). You might try switching from lomotil to immodium to see if that makes a difference. Sometimes one works better than the other for certain people. You could have him start on a fiber supplement like Metamucil Wafers, Citracel, Benefiber or other fiber. (They don't all work the same for all people so he might have to try a number of them.)

He should start keeping a food diary to see if there are any problematic foods. Even a low residue diet might include things that his system just doesn't like right now. Some of the problem foods: caffeine, sugar, eggs, fruit, vegetables, applesauce, gluten, dairy. And the list goes on. If he's able to, he could also start an elimination diet and take out one food at a time to see if that helps.

Foods that seem to work well to thicken things up: bagels and white rice. (Of course, those bagels may be a gluten problem.)

Ten times per day is absolutely normal. But butt burn can bring anyone to their knees. The very best skin protectant that I've found is iLex. Nothing gets through. It's recommended that Vaseline is applied over the top of it so the gluts don't stick together. But I often use it all by itself. If you can afford a bidet, that is very helpful. There's a link at the top of this page - COCO - that offers discounts to j-pouch.org members. A sitz bath or even a regular ol' bath will also help.

Hopefully the Cipro helps. And it almost always gets very much better even though it seems like he can't stand another day in agony. Hopefully his pouch will kick in and start behaving very soon.

Welcome to the site but I'm sorry you even have to be here.

kathy

tell your son he is not alone. im heading into my 8th week and have all the same symptoms. i know it will get better cause ive watched 2 friends go through this exact thing. we did not make the wrong decision. he will thank you i promise. my surgeon just changed things up for me because i had no plan. here is the protocol as of this morning and im already feeling its affect: water, brat diet, one dose of original konsyl fiber powder in the morning and one gas-x with every "small" meal and to continue the imodium/lomotil as long as its needed otherwise shed rather me control it with diet eventually.

My "cure" at that point was 1/2 dose of prescription Questran twice a day. Questran binds up extra acids to decrease acidic burns. I use Balneol on toilet paper for cleansing and Calmoseptine to help heal and protect damaged skin. I found any moist flushable wipes made the butt burn worse. Also, Epsom salt baths provided wonderful relief from the pain.
My surgeon warned me that I would curse him and question my decision at your son's stage. It was bad but because I was forewarned, I knew it was just temporary. Only 10 times a day is great at his stage of recovery. I am four months out and have 4 during the day, one at night. It does get better!!

I am 4 weeks out and was going about 20 times. I went to my surgeon two days ago and he put me on lomidal and flagyl to decrease bowel activity. Its already working. He also told me to take Metamucil in the morning without water. He told me I drink too much water ( 6 glasses a day) Doc said I should drink Gatorade, cranberry juice and not as much water because your body absorbs these where as water goes right through you. I also started florajen 3(probiotic). The way he explained it to me is that our pouch is made of our small intestine and the small intestine is not used to holding bacteria. So, the antibiotics, and probiotis help with that. I am now going half as much. I only take one lomidal at night, because I was going the most at night. Try calmoseptine for butt burn it helps me the most and hot baths also help. I know it's difficult and there are times I wonder did I do the right thing, but in the end I know we did. It's still so early for us. It could take up to 1 year for normalcy. I learned Patience is key to having this surgery.

I would highly recommend a bidet, it has been my lifesaver. I also use a handheld one when out and lots of showers to keep the area clean when home. Prayers for a great recovery for your son.

I would certainly research the effect of bile acid and enzymes on the digestive system and the benefit of lowering and controlling said Sercetions. Cipro and several other antibiotics when taken will lower enzyme output due to the fact enzymes are not so different to bacteria,There has been some good results in limiting the body ability to absorb the necessary ingredients.1 Statins (works very well high risk of side effects). 2 Questran as someone mention before ( predecessor of statins, works well with less side effects)3 The natural route of plant stanols (My personal choice due to the fact there are almost no side effects the dosage can be be varied as needed can be taken with cipro or the like (4 hours before or 2 hours after) to save drug dilution.Easily available form most health food,pharmacy or similar stores.Regards Richard.

My son's frequency immediately after TD (at age 10) was around ten times per day and has not changed much in the 11 years since. For him, it is still way better than an ostomy, the products for which caused enormous skin problems. We bought a bidet attachment before the TD, which has been a great asset for preventing butt burn. The tendency to get BB seems to decrease after several months. He has always preferred Imodium (loperamide) to Lomotil, so your son might want to try that. Also some Metamucil wafers. Not sure how "firm" the goal is, but formed stools are probably a thing of the past. Thick oatmeal consistency is more typical. Once he is through the first few months and remedies the burn, I doubt he will consider the frequency and less firm stools to be such a drastic QOL change--but it is a new normal.

Hi Liz,

I had my pouch done 20 years ago and a few months out I seem to remember I was going more than that. I remember asking my doctor about this same thing and being worried about it. It takes a while for the pouch to learn how to take over the job of the large intestine. I seem to remember the doctor saying that it could take many months and maybe even up to a year. What your son is going through seems consistant with what I went through and what the doctor told me. As the months go by your son should slowly get better. I bet a year from now you and he will forget about how many times he was going at this point.

I came into this website a few years back and I learned some new tips from the people on here that helped slow down things also. It is a big learning process. There is a section on this site about diet which is very good on how to slow things down. I would keep reading reading threads on this site that pertain to this subject and I bet you will keep learning new things all the time. I still do after all these years.

Good Luck to you and your son.

KangaRoe