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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

submit your ulcerative colitis story and questions here just like Catherine did

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




7 Responses to Coming Off Ulcerative Colitis Drugs

  1. Kristin December 23, 2010 at 5:42 am #

    I’m so sorry about this situation! I told my doctor once that I was trying acupuncture and chinese herbal remedies and she gave me that “oh, come on, that’s crazy” look. I’ve decided personally to get a second opinion from another gastro as I prepare to go on the SCD in the new year with my husband (he’s just doing it for support– he’s healthy). My advice to you? Look for a new doctor and perhaps explore your options with “alternative” doctors. My acupuncturist, whom I see FAR more often than my gastro, has a better grasp on my illness and is supportive of me trying to heal myself naturally. I took myself off my meds a few months back and my UC sucks of course, but I’m ready to try SCD and see if my body can make itself better. Don’t EVER feel guilty about the choices you make for your health. Your doctor is ONE person, not the be all and end all of UC. I honestly don’t put a heck of a lot of stock in traditional gastros because it seems like they believe UC is a one-size-fits-all illness which they can prescribe drugs for WHEN THEY DON’T EVEN KNOW WHAT CAUSES IT OR REALLY WHAT MAKES IT BETTER OR WORSE. Sorry– but it’s frustrating when a group of people who really don’t even have a grasp on the illness make patients feels stupid for wanting to try to get well without meds.

    You don’t have to be on meds forever. Check around for a second opinion and don’t apologize for anything! Good luck!

  2. Rich January 6, 2011 at 8:29 am #

    Hi Catherine,
    I just found this site and read your post. I was diagnosed with UC in 2001 and, after some mad combinations of pills, found that Immuran works.
    I’m sad to say I’ve been on it since about 2003-4, but have never gotten myself back to being and feeling 100%.

    Recently I’ve had some unrelated health issues which made me wonder if they were a result of the Immuran. My GI reacted jsut like all GIs seem to, by immidiately dismissing my concern. He did support me lowering my dose but did not support me planning to get off the meds entirely.

    I’m really confused. When I was a kid, I was given accutane for a couple pimples I had (thanks Doc!) Now there’s all sorts of talk that those pills CAUSE UC. What’s funny (kinda) is that Immuran has made me susptible to all sorts of other things, so when I ended up with a skin virus after visiting a health spa to relax, my GI arranged for me to meet his friend, the dermatologist… who jsut happened to be the SAME GUY who gave me the accutane… A full circle!

    Sorry for the rambling. I guess I jsut wanted to let you know that I support you and you are not alone. I wonder about these things all the time. If they say UC is an auto immune desise, but it was casued (in my case) by accutane, then it can’t be an auto immune desise… so why ar e they treating it with an immuno suppresent?

    I think there’s NOTHING wrong with getting other opinions from other GIs. In fact, it should be encouraged. I wish you the very best of luck and hope everything works out.

  3. Xee June 12, 2012 at 9:23 am #

    At the moment I don’t have “medical” advice…just my own intuition. My daughter (15 yrs) is the one with SEVERE UC…she went from mild proctitis to 6 months later almost having to have her entire colon removed…guess the Canasa and Asacol supposotories didn’t work (said sarcastically)Her official diagnosis is “severe pancolitis”…long story short…and after a stint in the hospital…she is home and currently weaning off of prednisone (went from 40mg to now 20mg…drops to 10mg next week) She is taking Apriso capsules, just 4 pills in the morning.

    Her doctor..just like all of yours insists they have no idea what causes it and actually told me food has nothing to do with it. I have asked her NUMEROUS times to test my daughter for dairy/gluten/soy intolerances..especially since they run in my family…and she laughs at me. (still hasn’t performed the first test I have requested….everything else she can milk my insurance for…just not the simple ones I ask about)

    By mistake..I used my daughter as a lab rat….fed her a bunch of bread and pasta thinking it would be easier to digest…full relapse in one day of coming out of the hospital. Hmmm, perhaps it DOES have something to do with food..it is a digestive track after all….now she is 100% gluten-free and everything stopped. It was like a light switch. She went from 20 bloody diarrhea (and almost losing her entire colon at 15) to 1 totally normal BM a day. Pretty crazy, right?!
    Now that gluten is out, and she is doing well…this opens the door for other food experiements. We are also finding dairy has an effect on her though not as bad as gluten. (immediate bloating and gas, sometimes a quick trip to the bathroom..but still formed and no blood). Got her Lactaid…a digestive enzyme and will be limiting her dairy…see how she does.

    I believe in the human body…I believe that it can heal itself if given the right tools to work with. Unlike the brilliant medical community who can’t seem to figure it out…I believe that it is our corrupted food systems…genetically modifed foods and processed foods. I believe that it is all the chlorine and chemicals in our drinking water….and the fungicides, herbacides, pesticides etc sprayed on anything that will hold still. In its whole form..fine..but your body breaks it all down to a cellular level for absorption..all those checmicals have to go somewhere.

    I beleive we can create the right environment with food and supplements to allow our bodies to heal and function normally without medications. And yes…I believe there are Doctors out there who feel the same way…just not my daughters doctor. For now, I will use her to keep my daughter with her medications and to keep watch. On my own I will use common sense and do what I believe is best for her health.

    It’s your body and your life…ultimately you are the only one who is going to care about your health as much as you do. If something is telling you to try something different or find a different doctor, then listen to it.

    Best of luck!

    • Jon Blumberg May 24, 2013 at 9:24 am #

      so glad to hear your daughter is doing well! I agree 100% that diet has to be one of the largest factors… if you put good things in your body its going to run better…bottom line.

  4. Johnny Drama
    Johnnydrama June 12, 2012 at 8:36 pm #

    Xee,
    Agreed! I agree 10000%
    Best of luck for your daughter!
    She should be greatful to have a mom who cares about her,
    My parents unfortunately don’t support me being on the scd, I have 0% support from them and from my entire family.
    Definitely can get frustrating, but I’ve learned it’s my body and I will do what I gotta do to live normal, my GI doc is the exact same as your daughter, pushes pills and doesn’t believe in any form of diet.
    -Johnnydrama

  5. xee May 24, 2013 at 11:09 am #

    Oh, Johnnydrama…I am SO sorry you don’t have an immediate support network. It can be such a scary disease to endure on your own. But I think you have the right attitude. It’s YOUR body..you have to live with what happens to it.
    It’s all trial and error..some things will work, some things won’t and some things just come completely out of left-field.
    I am also sorry it has taken me SO long to respond..I was moving around the time of your post and must’ve missed it…not sure how I even stumbled across it now…just a bit of good luck, I suppose.
    Hopefully this note finds you well? Sending a virtual “mom hug” your direction. :)
    ~Xee

  6. Salsaflamenca December 26, 2015 at 7:58 pm #

    Hello everyone,
    I have been diagnosed UC 10 years ago. Had many flares but managed to not really take medication until 2months ago the worse flare hit me like crazy.
    I am 31 years old, petite, and I lost 25 lbs I am now 90lbs and gaining weight is very hard. I lost all my muscles and I am so skinny and weak. I ended up in hospital aND they found I had Cdifficile, this made things worse and C-difficile is such a pain-can’t believe I got it. So I stayed a very long time in hospital, they gave me antibiotics.
    I am on prednisone 40mg. And I am also on remicade…being on remicade really bugs me because it seems that is a drug for life and if you ever get off it, you build antibodies and then it might not work anymore if you ever want to go back on it. At least that’s what I read. Is that true?. They gave me two doses in a week. And they wanted to remove my colon but I avoided it! Phewww.. and I got clinically better with less BMs and less intense pain. Medication must have really helped. So they let me go at some point. I do have blood with my stools here and there but sometimes I just have watery blood and then the toilet bowl is all red and obviously I have pain, which takes hours to go away. It can be scary.

    Now that I am back home, I am trying to be careful with what I eat. And I should be even more careful. I think for the next few days I’ll see how my body does with yam-carrots soup + salmon every day at every meal. Morning I have a shake with a banana/coconut milk/2 spoon of almond butter (wonder about the almond butter) I also take so many supplements such as curcuma, l-glutamine, aloe verĂ¡ juice, vitamins, cabbage juice, probably forgetting some. I started taking ayurvedic powders but I wonder also if I am giving too many information to my body with too many things. I read about other suppplements or things that could help. But we can’t just take it all. Then how do we know what works and what doesn’t.

    This disease is like a puzzle because GI specialist won’t help you regarding diet when I would think diet is #1.

    I wanted to share my experience here. Wish I could say I am in remission but I am not. But I hope to get there. And stop remicade. Hopefully…

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