Alien is back in my abdomen!

TE MarieMember

Having a good holiday, away from home and no pressure, then my frequency ramped up. The Alien started gnawing inside of me feeling like it was going to pop out below my belly button through the incision scar. Now the blood is back and my back and the rest of the abdomen is a pain. Pain medication, Norco, doesn't help much.

This is the best way I have of describing cuffitis. I will start taking Canasa suppositories again until it goes away. No need to freak out as it is what it is with chronic cuffitis.

This is the difference than having pain and other symptoms and imagining something worse. So hopefully all our newer members will be able to notice the beginning of problems and not be too afraid.

I'm headed to the hot tub hopefully for some pain relief.

11/26/1210:33 PM

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kathy smithMember

Oh, I'm so sorry that you're 're-experiencing' cuffitis. It's sorta like a bladder infection - you KNOW what it feels like and a call to the doctor should score some antibiotics. But nooooo, one has to go in and give a urine sample all the while suffering in bladder infection pain. Okay, maybe not the same. Must have dredged up something from the past...

kathy

11/26/1211:05 PM

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Jan DollarModerator, RN, retired

Oh what a drag! I hope you get good relief with the Canasa. Azulfidine was pretty good at keeping me in remission with the occasional Canasa courses. But, it was not until I began biologics for my arthritis that the cuffitis really stayed in remission. Nearly 7 years now...

Just a thought, maybe it is something for you to explore, especially since you have so much going on.

Jan

11/27/1212:02 AM

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TE MarieMember

I know what you mean Kathy, I've had those bladder infections. At least with this I have medication and don't have to see a doctor or do a test.

I don't think I need to go to biologics yet Jan. Hopefully Canasa will continue to work. I have not figured out what my maintenance dosage is yet. My rheumy said my arthritis isn't the UC related one - can't remember the name of that kind of arthritis. Fibro fog.......

11/27/126:24 AM

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jeaneMember

TE Marie,

I am sorry to hear you are still struggling. Dr. Shen said those of us with chronic cuffitis may need Canasa for life. I cannot miss one of my two doses a day and even
at that,I still struggle, as you do, with discomfort many days.

I am at the stage of trying some oral meds as Jan mentioned. I was on azulfidine for 25 years prior to jpouch surgery and never experienced the inflammation at the level I am now having in my anal transitional zone. Hope you feel better and you may want to consider some oral meds for relief.

11/27/127:54 AM

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n/aMember

Yes - Dr. Shen, and now my new GI guy recommended taking Canasa - maybe forever. New guy also said some recommend it as a "preventative" for cancer in the area. I don't think that type of prevention has been proven anywhere, but I'm currently taking it 3/week to prevent cuffitis.

I do hope it works for you, TE.

11/27/1212:55 PM

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bootstrapMember

Oh boy. I'm sorry you're dealing with that on what sounds like such a regular basis. I sure hope I can avoid this cuffitis business since my surgeon said I have less than 1cm of cuff left. o.O

Good luck... sending healing vibes your way.

11/27/122:53 PM

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TE MarieMember

bootstrap, 1 cm is better than 2 they say I have left.

My Mayo GI, Dr. Edward Loftus, Jr. said basically the same as Dr. Shen. He said to go to every other night and then hopefully I will just need it a couple of times a week for maintenance. It's trial and error to find what works for myself. I went 4 nights as I didn't want to mess with it at my son and daughter-in-laws house...Now I know, my bad. I have a hard time with the cost of them but they are covered under my insurance, after I get past the huge deductible.

jeane - I'll discuss the oral medication, I was on Asacol for 14 years. It stopped working for my UC but the ingredient in it is in Canasa and it works when I stay on top of it.

11/27/124:34 PM

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