I know there have been a number of posts on this, and I've had a look at them, but I'm still not sure if I have cuffitis....
I am almost one year since my combined pouch creation/takedown surgery. The first few months were hell, but things have gradually improved except that I still get occasional urgency. Not the type where you only have seconds to get to the bathroom, but where I'm not sure if I'm going to be able to hold it in until I get to a washroom. Sometimes it can be associated with abdominal cramps, which I think is gas-related, but not sure... The urgency seems to be more pronounced when I am standing for a long time or extended walking. My surgeon noted that at the time of second surgery (which was 5 months after the colectomy) that my rectum was still quite inflamed, which makes me think my symptoms are due to cuffitis. Bleeding doesn't seem to be a problem, unless it is microscopic, because I don't see anything on the toilet tissue. I have some 5-ASA suppositories and have used them occasionally, but am wondering if I should put myself on a treatment regimen and what that should be. As far as frequency, some days are really good (i.e., 4-6 times) and then other days I find it can be up to 10 times. Another thing I've noticed of late is that my finger joints are a bit swollen and stiff - is this all related?? Any help would be appreciated.
Louise

Hi Louise,

I think Jan will be able to give you a better answer than myself, but, do you notice any mucous?? whereabouts in the abdomen are the cramps?
A suggestion that has been made to myself from thread thread is that it may perhaps be a fissure with the urgency/spasms.
I've also been told that a slight narrowing can cause you to push more than needed, but this can be easily fixed by stretching, for example during a scope.

I know for me that the thing that spells out cuffitis is cramping/mucous while maintaining a low count on toilet trips.

Do you feel that on the days with fewer trips (4-6) that the cramping is worse? Is it possible you're maybe constipated and pushing too hard on the muscles?

Hopefully more people will add their input to this.

Take care,


Lynsey

Thanks Lynsey.
The cramping, urgency and frequency seem to go hand in hand. When I'm having a good day, I don't have any of them, but when it's a bad day, I have it all. Also, when my pouch is what I call "overfull" (i.e., I've held it too long), my rectal area seems to become spastic trying to hold it in. Until now, I've just chalked it all up to adjusting to the new plumbing, but since it's been 11 months since my surgery, I'm not sure...

I'm still thinking cuffitis, but really not sure? And with the swollen joints, I'm wondering if that could be a result of ongoing inflammation in the rectum??

Louise

Since you know you had cuffitis about 6 months ago, it definitely is a possibility. The main thing that separates pouchitis from cuffitis is bleeding. When you don't have bleeding, a simple digital exam would tell your doc if your cuff is indeed, inflamed. Yes, arthritis definitely can be a related problem.

If you are not having pain with bowel movements, a fissure is not likely.

Before you get involved with self treatment though, it is important to communicate with your doctor, even if it is just to tell him what your suspicion is and what you plan to do about it. He may tell you to go ahead and try the suppositories, or he may want to examine you first, to be sure what is going on. In any event, it should be documented in your record.

Jan

Jan, I've never actually been diagnosed with cuffitis - until now I thought my symptoms were due to adjustment, but since it's been nearly a year since my surgery, I've been trying to put the pieces of the puzzle together and figure out if what I'm experiencing is normal or not. And I guess that is really my question.... What should it normally feel like when the pouch is full or when gas needs to escape? If what I'm experiencing isn't normal, could I still be suffering the effects of inflammed rectal tissue??

Thanks for your help. Louise

Yes, excuse me. You had proctitis at the time of your second surgery. My guess is that it never went away from your retained cuff. Now, if your surgeon performed a mucosectomy, this is less likely, but unfortunately, the mucosa can grow back.

Definitely what you are experiencing could just be adaptation. This is why it is important to call your doc. He can put it to rest with a quick digital exam. If your cuff is inflamed, it will feel bumpy.

Jan