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pouch pain (update)
I have been bugging my Dr for some answers and now we are starting some tests. Im off today to have CT with oral contrast to see if fistula has formed. I asked to have IV contrast too but Dr said no just oral. I will have my 6 month Ct in 2 months. I continue on Bactrim DS twice daily if I go off bad pouch pain spasms,extra mucus and stoma eruptions. I have an appt with infectious disease dr Feb 1st. I still feel this is an infection that is stubborn.
I had that old Sp drain infection and came home with a stoma infection both (e coli( My urine clture did show ESBL so now I have look into this.
Julie
T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch3 Replies-
Julie I do not know if that is all that is going on with you but the need for the pouch to heal completely and settle in could be part of it. My spasms really gave me a bear when the pouch was new and still healing. Now they are more of the glad that didn’t last long variety.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
thanks for the info on “pouchitis” it does sound alot like this!!!
Were your spasms very painful? That is the part that worries me the pain and pressure in the pouch area. Sometimes it is so great all I can do for days is sit with heating pad.
T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch
Julie,
I sometimes have what I call Pouchitis. That is a real thing but my definition may not be the true one,for me whenever my pouch if not behaving I call it that. When this happens I can have a bit of or a lot of the following or a few but not the other. Excess mucus, spasms, leaking for no obvious reason, gushing for no obvious reason and generally being a nuance. This has happened to me right after it was made, if I have an infection, surgery on it or anything that causes the bowel to be affected that is systemic such as an antibiotic. I have also been told that certain foods can do it to some and they found help through keeping a food diary. Once inflamed it can take months for it to recover fully and if it keeps getting upset without fully healing it takes every longer with every set back. Now when it is well it does fine again and is a good little pouch. Once you find the reason for the problem be sure to have patience as it gets back to normal as slow as that can be time can be part of our healing.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietySign In to reply.
