My husband has had rectal pain, spasms, urgency, frequency for the past 5 weeks. Pain to the piont of tears. He has a high tolerance to pain. After eating he is in the bathroom every 7 to 10 minutes for about 3 hours, Thereafter he is in the bathroom every 30 to 40 minutes. Sleeps in the bathroom on commodde alot. Butt burn and everything else! He takes 8 lomotil and 30 grams of fiber a day. GI doc did scope and found stricture with infammation and ulcerations. We see the surgeon on Jan 4th- thats another post! Any help-please!!!

MJL,

I have had all the symptoms your husband is having and also have a stricture, cuffitis and mild pouchitis. I had butt burn that brought me to my knees and tears many nights. I am so sorry he is going through this.

I have had three in office dilations and now I am going under anesthesia for one in Jan for my stricture. I am not sure all his symptoms are due to the stricture, but it does make emptying your pouch very difficult and required many trips to the bathroom with a lot of discomfort in between. I do believe this causes a lot of the irritation and discomfort. He may also have pouchitis or cuffitis (esp if bleeding also), esp since they have found ulcerations/inflammation.

I can recommend the following that will help your husband, but until he gets scoped and/or dilated, you will really not know what is the central cause of his issues.

He can try:

-Warm baths-lots of them
-Desitin, calmoseptine or some other heavy ointments with zinc oxide after each bowel movement
-Lots of water-internally and on bottom with as little wiping with tissue as possible (squirt water bottles work well for this or baby wipes)
-calmol 4 -if surgeon of GI recommend these suppositories that contain cocoa butter and zinc oxide for the anal irritation (can be ordered at the pharmacy). I found these to be of great help to me.
-A probiotic (vsl3) if not already suggested by surgeon or GI doc
-No sugar-- very irritating
-Pepto bismal helps me with the irritation but I would talk to GI doc/surgeon before starting this
-Small meals, more often

Best of luck and hope some of this helps.

When I had symptoms like your husband, I had pouchitis. I was prescribed cipro, aand flagyl anti-biotics.

In addition, there is a special nefedepine based cream which is applied to the anus / rectum area which stops spasms of the sphincter. I recommend getting this cream (you need a prescription) as it has helped me immensely.

Good luck!

Solomin

I'm sorry your husband is feeling so miserable.

I felt saddened when I read he falls asleep on the commode, because it struck me that I do that too.
Sometimes I fall asleep sitting on the loo. I never told anyone this before, not that I was hiding it, but not really any need to tell people around me.
Except the people here.
I have a painful narrowing in the join bit (name escapes me) and I have pouchitis (still haven't paid that biopsy bill) and I also have aphthous ulcers in the terminal ileum.
So more inflammation.
They are telling me now that my 1994 diagnosis of UC and 1995 toxic mega-colon perforation may have been crohns all along.
I'm not convinced.
I am taking Entocort at the moment, but so far not really noticing any difference.
Antibiotics make me feel sick.
I'm alergic to flagyl. I take augmentin duo forte and cipro when I am really bad, but if I take them for more than 2 days my bowel becomes so gassy and just aches like I have been kicked by a horse.
I am going back to the GI & to the surgeon in early Jan.
My pouch was created in 1998 and my surgeon thinks I am one of his success stories.
I'd hate to think what one of his failures has had to put up with.

ANYWAY, i'm just venting some of my own stuff. I DO NOT think your husband with his new pouch will be on the same path as me.
In the early days as your husband is, there are a lot of adjustments and a lot to learn about our new elimination system, and I hope the specialist helps him figure out what is the best way to resolve his problems.
All the best and keep us posted.

Very-Unique so sorry for you. I hope in time you feel like a success story. Good luck with your appt's.

Kjeane-My hubby found out a warm bath is soothing more than anything! He takes Vsl#3- 2 a day- should he increase that?

Talk to your surgeon about increasing the vsl3 before doing so.

Be careful about his fiber intake, that can cause bloating and gas. Oh, boy, I remember putting a small snack tray in the bathroom so I could lay my head on it and get some sleep in the middle of the night. I agree with Solomin, when I finally got put on antibiotics for pouchitis, my symptoms went away - the same symptoms your husband has. But it sounds like that stricture is causing a lot of his grief. I hope the trip to the surgeon proves fruitful. It is still so soon after takedown, it will take time for things to settle and feel much more normal.

Lampiepie, I know everyone is different, but wish we had a mile marker to use. Poor guy is at the end of his rope. Now, he says his legs are tired and weak...I am thinking dehydration? What are any ones thoughts?

Dehydration is a possibility; When I was dehyrdrated I had continual muscle spasms.

I recommend he either make an appointment with his doc or go to emergency.

Best of luck!

Solomin

could be dehdration. Make sure they are testing for that. Also there are meds available to reduce the spasms. Be sure to ask about that.

If he has strictures.. he probably has pouchitis cause he can't empty fully. Oh, how I know the pain and total misery he is in.

Are you careful with the food intake? Certain foods might not stir up so much trouble. If he has inflmaation are they giving him antibiotics. They might alleviate somethings a bit.
good luck with the surgeon appt.