mom of a jpoucher with pouchitis

There are other antibiotics besides cipro and flagyl that are used to treat puchitis, like augmentin, xifaxin and keflex to name just a few of many others. Any one antibiotic will lose its effectiveness over time, so you have to rotate or cycle them to prevent an immunity from being developed. I have been doing this for 18 years to treat pouchitis.

I would suggest xifaxin and augmentin as the next two in line but discuss with the boy's doctor. Good luck.

Ask his doctor about probiotics like vsl3 DS. He needs a prescription for it. Just note that you need to take it either 2 hours before or after antibiotic dosage. Some people on the board will tell you it may not work while taking antibiotics at the same time as the antibiotics kill bacteria (good and bad) but I have had chronic pouchitis for over 2 years and take this two times daily per instructed by my GI. If nothing else, it may help prevent c-diff from taking the antibiotics which will just make you son's situation worse. Also, CTBarrister's advice is very accurate. There are other antibiotics your son can try, with augmentin being the strongest.

You son may also try to stop eating by 5-6 pm bed and drinking more water to hopefully clean out his pouch as best as possible before sleeping and stool thickeners to help with the leakage.

If he is bleeding he may also have cuffitis which can cause many symptoms similar to pouchitis, but bleeding is usually the hallmark symptom.

We have him on VSL caps( regular strength) He used to take the regular strength powder packets but refuses to use the powder form anymore. Last we checked the DS only comes in powder. I guess we could have the powder put into caps. Anyone done that? We were thinking about a VSL enema...anyone try that?
I am hoping Metamucil will help thicken the stool along with the immodium. Do most people have success with that?
He doesn't have a cuff...he had a mucosal stripping procedure. He recently had a scope and no mention of problems with the tiny strip of mucosa in there. They feel the bleeding is from pouchitis.
I keep hearing people talk about C Diff with j pouches. I thought my sons doctor said that was very unlikely to occur without a colon but it sounds like that is not really the case? I askedthat he be tested anyway and it was negative. Are false negatives common?

I saw mention in other posts about these other antibiotics but haven't gotten to the point of asking his doctor about trying them. I guess that will be next.
Also trying to find people that might have had a fecal transpalnt wit hteir j pouches...wondering if it helps pouchitis not related to C diff.

Some fecal "transplant" procedures are done with manufactured transplant material. This is similar to your idea of a VSL enema. I'm not aware of anyone having actually used VSL that way, but I've often thought they should try testing it.

The VSL capsules are the same as the powder, except for 1) amount of material, and 2) prescription drug coverage. You can (and I have, occasionally) taken the equivalent dose in the capsules, but it's a *lot* of capsules. Is the powder objection based on the taste? It's pretty nasty in water, but disappears completely (IMO) in yogurt. That's how I take it twice daily.

Yes, the taste is the issue. We tried yogurt, applesauce, different drinks. He rather swallow a ton of capsules than taste that stuff. We may be one of the few to try a VSL enema!

I completely understand not taking it due to the taste. I've mixed it with about everything, and it's just horrible. I don't take it too much anymore for that reason, but when I do take it, I mix it with a small amount of orange juice and take it like a shot. Get it done quickly. I still gag, but then chase it with a fresh glass of orange juice. Seems to hide the flavor ok. Like you suggested, I don't see why you couldn't just encapsulate it yourself. You can buy food-grade capsules super cheap. It would just take a lot of capsules to fill that large packet. You can also purchase a hand held encapsulator that allows you to do a bunch at one time. I purchased one for work once and it was really cheap.

FYI...I just looked online and the encapsulators are about $20 that will do ~24 capsules at once. The "0" or "00" refers to the size of the capsule. You probably want to get the largest capsule that your son can tolerate swallowing. If you go that route, make sure to match up the size of the capsules with the tool you buy.

There was a member here quite a few years back who was doing VSL#3 enemas and it worked very well for him.

Like Jeanne mentioned, blood is often a sign of cuffitis. Even a bit of remaining cuff can cause problems for those prone to cuffitis. A very simple digital exam by your son's doctor can detect whether it's present or not.

And yes, I think I've read that one can have a false negative with C. diff.

I hope your son finds a solution very soon - poor guy. He needs to be out being a teenager!

kathy

I am wondering if his night time leakage is worsened due to the mucosectomy and stripping of the mucousa? One of the side effects of this procedure is mild incontinence and I have been told it may require a nighttime pad due to it. Also with pouchitis, there often is no symptom relief between daytime and nighttime.

The bleeding bothers me as it is not as common with pouchitis as it is with cuffitis, but with a stripped rectal cuff, I wonder why he is bleeding. I think at the very least, he needs a rectal exam by his GI and the sooner you get him on another antibiotic, if this is pouchitis, the better. I would not wait on this. Also, you can try anucort suppositories, especially if the bleeding is in the distal pouch. The anucort will reach this area and may help. I have at times, inserted two suppositories at night and one in the morning (25 mg) to help with this issue for a few weeks before the bleeding got under control. At that time, I usually move to canasa suppositories for maintenance. Hope this helps.

Thanks for all the advice and thoughts! He just had a pouchoscopy and they saw changes consisent with pouchitis but no mention of mucosal issues. According to his doctor, night time leakage and bleeding occurs with pouchitis. He had no incontinence issues for the first 2 1/2 months after takedown so I don't think it's related to surgery but could be. We are working with his doctor to get this under control but still wanted to reach out to those living with this. Lots to be learned from those who have already been through it!

What does mucoussl issues indicate? Does that mean ulcers? I hope he's feeling better. Please keep us posted.

Pouchitis definitely causes unwelcome nocturnal events for me. I hate them, so I'll use euphemisms!

I just wanted to put my 2 cents in real quick but I hope that your son is doing much better My daughter takes VSL extra strength in the capsules. They do make it but her dr had to write a letter to my insurance company explaining the importance of her taking it. She absolutely refused to take the powder stuff. Also I have heard of a mom making homemade VSL enemas for her 15yr old son and having great success. Not sure if you have ever heard of this group or not, but on FB there is a group called parents with kids with a jpouch. It is a great resource and sounding board for us moms that are trying to help our babies.