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My GI had prescribed Canasa, thinking my fistula etc. may be related to inflammation.

I took it, the full month (suppositories), then went to every third night.

After one, end of July, I developed this very sore place inside the anus opposite of my fistula, and slightly above it. Really hurt. On digital inspection, where the pain is is this raised area that feels bumpy.

Then I developed tenesmus that responded to a very quick steroid taper. Still have mild tenesmus off and on, though. Like tonight. Could keep sitting there on the toilet, but made myself get off. It's not as awful as it was, though.

The internal "bumpy" area has painful days, and not as painful days... But it's always at least vaguely present, and always bumpy. But it's only on the left, far as I can tell. I wondered if my seton was rubbing an area sore, but it seems above it, unless there's something about how it's moving in there, that I just can't tell about. Moving my bowels doesn't make it hurt worse... Nothing in general makes it hurt more or less; it just is hurting or isn't hurting. Occasionally a warm Sitz bath just calms things down.

I feel *swollen* down there for lack of a better description. Just right at the gate, right around the anus.

My surgeon stripped the anal mucosa 23 years ago, during my first surgery.

So... To those who know...

Does this sound like cuffitis?

I've never had bleeding. Just some pressure, a swollen feeling, a bumpy internal area, tenesmus, and this throbby sort of left sided pain.

I know Canasa is treatment FOR cuffitis, but if you read about it, the med can actually CAUSE things like UC symptoms, or the symptoms it's trying to treat.

Any thoughts? GI has some worry the pain could be a new abscess/fistula forming. I worry it's some anal cancer thing, since fistulas increase the risk (not incapacitating worry, just side note worry).
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I have had this issue forever. It is right inside the anal area on my right side. If you palpitate it w a gloved finger it feels like lump and hurts to the tough and often causes me some anal throbbing and discomfort also. I have complained about it to my GI on several occasions. The area has been biopsied etc with no ill findings to date. I always have mild cuffitis on my scopes so I am assuming the raised lump is exactly that, however even Canasa does not get rid of this. I have never had a fistula so I cannot speak to that, but I too have worried about this lump becoming cancerous over time.
It does sound like cuffitis to me. My GI always would take note of how bumpy my cuff was on digital exam. Of course, mucosectomy is supposed to prevent future occurrences of cuffitis, but it definitely has been documented to occur. Some surgeons refuse to believe it though.

As to whether or not Canasa is the definitive treatment goes, it absolutely does not have a 100% efficacy. Plus, some people have adverse reactions to mesalamine, although it is rare. If you think that the Canasa exacerbates the symptoms, the next best option is topical hydrocortsone or budesonide. I definitely would not continue Canasa if my symptoms were worse on it. I do tolerate mesalamine because I've been taking sulfazine for about 10 years (and decades before my colectomy).

There also is the issue of local trauma from chronic use of suppositories. For myself, I find I get the best response by using Canasa for a week or so when I have a symptom flare (all the symptoms you describe + bleeding). Since starting biologics about 9 years ago, my flares are infrequent and respond quickly to Canasa.

Good luck with your exam and I hope you find out what is going on. I really hope it is not another fistula. That would be my primary concern.

Jan Smiler
Thanks, guys.

I took Azulfidine as my primary treatment for 9+ years, from age 11-19, with no issue, but I'm not sure that Canasa is for me. I quit it when I told him about the pain... GI said, yeah, don't use it til we investigate further.

He had me send my PPD results to them, in case we go the route of Humira. I really think that's where he's headed here, unless the CRS sees something way different; that if there's inflammation there, and of course, the fistula, maybe I'd benefit from a biologic. God, I hope he does and it heals that fistula. I'd cry from joy.

As for it being "another" abscess/fistula, it just doesn't feel at all like the first one, but I suppose it could be a different kind starting, IF it is. It feels pretty superficial to the anal lining, just bumpy along maybe the anastamosis area? Or below it a bit?
Rachel, I hear ya. I was relieved to be offered biologics when my sacroiliitis pain was so bad I could not sleep and could barely function. The potential side effects did not scare me at all, since the side effects of what I was living with were actually happening. I am on my third biologic, Simponi (after Enbrel and Humira). By far, I enjoy Simponi the most. Once a month and it does not sting like the Humira.

I get my monitoring blood work every three months and my numbers have only improved (except for my vitamin D, but that is another story...).

I agree, you are the expert on what your butt feels like, so you are probably right and this is not the beginning of a new fistula. Since I never had one, I cannot compare, but I have much experience with cuffitis!

Jan Smiler
Hey Rachel,
I struggled with many of the same symptoms as you this past year. My surgeon prescribed Salofalk suppositories (I think that's the Canadian version of canasa) and it helped,but I also seemed to reach a plateau and symptoms returned. I kept going back to my surgeon for a scope and kept telling her I still didn't feel right. She said let's give proctofoam a try. Well, it really did the trick. I wonder if it was the cortisone in that medication, as I always responded well to prednisone when I had UC.

I had urgent urges, the need for many hot baths, and a general feeling of anal soreness. And it wasn't pouchitis.

Think about giving it a try. I tapered off the foam about 2 months ago and am still feeling 100%.

Good luck!
C-jay

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