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H
Hi everyone, I have been reading the discussion boards here for about a year, and they have been very helpful through my journey. This is my first post.
I am wondering if this pain I am having is familiar to anyone, as its very strange.
I had two step J-pouch surgery. Step one July 31 and take down Oct 15. I have been getting a pain which feels like it is originating from my jpouch. It is hard to describe, there is a definite throbbing involved and the underlying feeling I can only describe as an inflammed feeling. It ends up even making my genital area feel inflamed and makes my butt cheeks hurt. I also have been having nausea for several weeks now.
I had a flexible sigmoidoscopy a few weeks ago and pouchitis has been ruled out, my surgeon, who is brilliant, says the inside looks very healthy and it could be something occuring outside the pouch. I have had pains on and off in my pelvis. I have a CT scan scheduled for March 24. I am worried that the surgeon won't be able to figure out what is causing this pain, which is quite debilitating and requires T3 to control.
I am wondering if any Jpouchers have had similar pain? I am really hoping it is fixable and not a long term pain I should expect from the pouch.
(the nausea is really a drag too)Smiler

thank you
Lesley

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
Yes, an abscess due to a now healed or undetectable pouch leak sounds like a definite possibility. It may be what your surgeon is alluding to in regard to "something outside the pouch." It could also be an non infectious fluid collection, adhesions, or sinus tract/fistula.

All the T3 you are taking could be masking fever. My primary question would be if there is any way to get an earlier CT, since you are already in a debilitated state. Waiting 4-6 weeks could allow this to escalate into a very serious thing. My pelvic abscess went from malaise and pain with low grade fever to severe pain and fever of 105F in a month's time.

See if you can avoid the T3 for a dayand check your temperature in the evening. If it is 101F (38.3C) or more, you need the CT on a more urgent basis.

Jan Smiler
Jan Dollar
Last edited by Jan Dollar
H heyitslesMember
Thank you so much Jan, I actually was having fevers before I started taking the T3. I have tried to get an earlier date for the CT scan but that is the best they can do, for some reason they don't even keep a cancellation list. I will try to avoid T3 for a day, but this past week the pain has definitely escalated and it's hard to suffer through. I will give it a go anyway and perhaps I will email my surgeon and give him an update so he knows things have not improved.

Thank you again!
Lesley
H
mgmt10mgmt10Member
heyitsles,

I had a pelvic abscess and had the trans gluteal drain put in. (Thru the butt cheek you speak of). No, not fun at all but boy did I feel instantly better once the abscess started draining. I had the tube in for six weeks while it all healed up. It was a rather large abscess that's why it took so long.
mgmt10
Jan DollarJan DollarModerator, RN, retired
Yes, the point of seeing how you are off the T3 is to highlight what your unmasked symptoms are. If your pain is severe and you have a high fever, your doctor can get you in for a CT on an urgent basis. It is the same in the U.S., folks with urgent business have priority over more routine or chronic issues. I often get bumped by cases that come into the ER. My providers do not do cancellation call backs either, but we are encouraged to call back daily for cancellations.

The point again is that a month or more may be too long to wait. If you are not a squeaky wheel, they figure you are managing.

Jan Smiler
Jan Dollar
SB S BrickMember
I have to agree with everyone else here. Sounds like an abscess. Trust me when I say to demand a CT or to have your surgeon see you right away. I waited because I was clueless and ended up at my local hospital which was not a good experience just due to lack of complete knowledge of j pouch patients & such. I ended up getting a complex fistula due as a result. I find you have to be pushy at times otherwise you can get brushed aside. Good luck & don't give up!
SB
H heyitslesMember
Hi everyone, I had my CT Scan on Feb 27. My surgeon was away the following week so he just contacted me today and said the CT scan was normal. So I am rather upset as I was hoping to know what is causing my pain and nausea, which still continues unfortunately. The srugeon is referring me back to my gastroenterologist for an appointment and I will be going to see my GP to see what other investigation can be done to figure out what is going on.
H
H heyitslesMember
How can you tell if you have a partial obstruction? In addition to all the weird pain I have noted in my first message, a couple days ago I noticed my bowel really slowed down and it is very difficult to go to the washroom I have to work at it, and the normal volumns I am used to are just not there. This started Wednesday evening, Thursday I was extremely nauseous all day and evening and had not appetite.I vomited in the morning but it was only saliva because I hadn't eaten. I had some brief crampy pain on Tuesday but none since. I can tell I am getting backed up, but since I don't have any of the major crampy pain I have had in the past when I had full obstructions that required surgery I am wondering, if this could be a partial obstruction? Any thoughts?

Thanks everyone!
H

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