Hi Guys,
Looking for some well needed advice...
Things have started to take a turn for the worse with myself over the last 9 months. I find it hard to explain but I'll give it my best. I've being getting a burning sensation inside the pouch/rectum were I've be unable to hold any output inside. When the burning sensation hits, I feel I have to try hold the output in the pouch if not things will continue to get worse. It's like the skin just inside the rectum is severely inflamed.
When things get bad I take excessive amounts of both Metamucil wafers and Imodium. Maybe over six packets of wafers and 10 Imodium (I know it's crazy but just do anything to get the pain away) a day and would stop eating anything else besides bananas, and maybe some toast.
I initially thought it was some food I was eating and after over a month of tracking my diet I was confident this was not the case. I went to see my surgeon and yesterday he admitted me to hospital and scoped the pouch and confirmed all is fine inside. To be honest I was hoping he'd tell me there was a minor problem going on in there and I'd have too take meds to clear it. Now I'm totally confused!!!

On average I was taking 4-5 packets of Metamucil wafers a day and about 8 Imodium. Could this be the cause of my discomfort?
It's at the stage were I need to sort this as I'm losing a lot of weight, missing too much work and socially it's completed taking over.

Any advise guys??

Slan
Keane

Keane,
First thing I'd try is STOP the Metamucil!

While it works great for binding/slowing things down, it TORE my pouch/ass up!

If nothing else, go get the Metamucil Smooth Texture mix- same exact effect, but WAY less irritating, or better yet, Citrucel.

If it still burns like that, I'd cut any/all fiber out for a couple days and see if you see any improvement. It may be that the burning is something totally unrelated, and the fiber is only making things worse.

I found that when I'd stop the fiber, the majority of the spasming would cease before it would kick in again on it's own...

//Todd

Did your surgeon do biopsies? A few years ago I had my first sigmoid after having the J pouch because I was having symptoms, the surgeon told me the pouch looked "just fine". I, like you, thought for sure there would be something. But then the biopsies came back and showed acute inflammation or pouchitis, so apparently it's not always visible I guess. The surgeon then took my complaints more seriously.

Barbara

This sounds very much like an anal fissure or at the very least anal irritation (both of which would be inside the anal canal). This can hide in the skin folds and be easily missed by scope (you need to use the naked eye and evert the anus in many cases). It sounds like it is in the early stages, otherwise your pain would be much more severe. The treatment is hot sitz baths and topical ointments that improve circulation, such as nitroglycerine or nifedipine. Topical anethetics, such as lidocaine or Anusol suppositories can help too. You do not want to strain at stool, so this means trying to maintain a soft, semi-formed consistency (too firm or liquidy promotes straining and makes fissures worse). Fiber is usually a good thing, but don't overdo it.

Jan

Hi Guys,
Many thanks for the feedback.
I’m meeting up with my surgeon again in 4 weeks time and will suggest a biopsy if things have not improved. Was really disheartened when he said he couldn’t see anything but from your feedback it’s not always visible from a scope. In the mean time I am going to slow down on both the Metamucil wafers and Imodium and see how it works out for me. How much a day would you recommend to take?
Toddl, what you said about the Metamucil wafers is exactly how it feels inside, slowing things down but seems like its ripping or tearing things inside the pouch/ass.
Jan I will try and get hold of some of the topical ointments here in Ireland, and give them a go when things get bad.

Thanks again guys.

Slan

Slan,
No problem- if you're anything like me, you should start feeling relief if you stop taking those wafers in about a day or so.

I lived and died using Calmoseptine- it was a life saver for me! I'd pick up surgical/rubber gloves from a local volume warehouse store (Costco- not sure if you have those out there), and would use it wherever I had that pain. It soothes BIG TIME, and also creates a liquid barrier, protecting your skin... (you need to apply it over and over, though- not like some of the long lasting barriers out there, but it feels GOOOOOOOD!)

Hang in there!
//Todd