Coming Off Ulcerative Colitis Drugs

Background:

I’ve had UC for about a year and a half, diagnosed just over a year ago. I’ve been on pretty much every drug available in Australia for ulcerative colitis, and one that is not recognised as a UC treatment in Australia and therefore isn’t government funded. Nothing has worked particularly well apart from Prednisone, but I’ve been having a fair bit of success with SCD

Current Medications:

I’m currently on 2 x 1.5g Salofalk granules a day and 125mg Imuran a day.

My Story:

I recently saw my gastro, just a regular check up to see how things were going. I had a flare about 2 months back which caused me to restart SCD and be a lot more rigorous with it. Other than this, everything had been fine and I was feel really good.

I was looking forward to seeing my gastro and telling him all of this with a view to starting coming off the drugs. When I explained about the diet, he literally sneered at me. And afterwards, suggested that the ‘flare’ may just have been a tummy bug! I don’t know about anyone else, but UC feels nothing like any tummy bug I’ve ever had. He suggested that next time I get a stool sample tested to make sure, so we aren’t jumping at shadows.

Other than this, he was very happy with how everything was going. I’ll be having another colonoscopy in about 6 months to see if the look of my colon reflects how I feel. We reduced my salofalk from 3 doses a day to 2, but kept the imuran at the same level. I complained about how it is making my hair fall out (I’ve gone from putting a hairband around my hair 3 times to it going around 5 times), how every time I get a scratch (which is fairly often, as I live with a crazy little kitten) it gets infected, and how the skin on my knuckles and around my fingernails keeps cracking and bleeding. He lumped all this together as ‘managable’ and made me feel silly for being concerned about it.

He’s also said I should stay on a 1.5g a day does of salofalk forever, because of the increased risk of bowel cancer from UC. In my mind, what I’m aiming for is being off the drugs altogether.

I was feeling a bit annoyed when I walked out of his office, and coincidentally my mum called just then, and she knows just how to push the right buttons. By the time I finished talking to her, I was ready to turn around and go back in and scream at the doctor. I didn’t, it’s just not very me, but it would have felt good. (I did come home a write a really angry post, but my internet connection died while I was trying to post it, and it was lost into the ether. It has taken almost a week for me to want to think about it again.)

I guess what I’m wondering is how to deal with this. Maybe I should be finding a new gastro, but how do I find one who is more sympathetic to my way of thinking – there aren’t many to choose from in Canberra. Or do I just go back with stronger determination to get off the drugs? Has anyone elses doctor said anything about staying on drugs even when you get into remission?

-submitted by Catherine

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Information about the Ulcerative Colitis Diet called SCD which stands for the Specific Carbohydrate Diet