UC Plus Bonuses

My Background:

I have a cluster of auto immune diseases as well as ulcerative colitis.  I have rheumatoid arthritis and Hashimoto’s thyroiditis. The UC remains severe and uncontrolled and was diagnosed 4 years ago and fails to respond to any and all treatments (just out of hospital a week ago) and I am taking part in a drug trial out of desperation, but it looks like surgery may be my only option now if I want any quality of life.

My Story:

I was diagnosed with Hashimoto’s (auto immune disease of the thyroid causing it to fail to produce the necessary hormones to regulate many body functions including metabolism, temperature, hair and skin condition and severe fatigue to the point of not being able to function. I was treated and got on with my life. Then 13 years later I got the first symptoms of ulcerative colitis. My father had UC when I was a child and then went into remission, so I was fairly certain I knew what I had. The UC progressed very quickly and I had to give up my job as an attorney immediately as the stress involved in my job and the 80 hour weeks which I loved were not compatible with the 50 to 60 times a day I was visiting the bathroom or the 3 hour commute.

Initially I was told I would be back at work in a few weeks, but 4 years later after trying every medication available and responding to none of them, averaging 4 hospitalizations a year and fatigue that sees me sleeping about 15 hours a day on average and never able to get my prednisone below about 20 mg a day without causing a flare things are seeming pretty hopeless.

Then just to add insult to injury when I was first diagnosed I was told I had to stop taking the anti inflammatories I was taking for a back injury I sustained from a horse riding accident as a teenager. At first that wasn’t a problem because the high doses of prednisone kept the inflammation under control, but as the prednisone was reduced the back pain became worse and then other joints, hands, knees, ankles, wrists, shoulders all began to become unbearably painful. Further investigation revealed that I had for some time had rheumatoid arthritis and now without the anti inflammatory drugs this too was flaring up with the reduction of pred. So now I need to be treated by a rheumatologist as well to manage the pain and mobility issues of this auto immune disease.

I noted above that I was having up to 70 bowel motions a day and that was really at it’s worst, 30 to 40 was the norm and I settled into that pattern for the first couple of years. Now I’m down to about 5 times a day since my hospital admission last week and the bleeding seems to have stopped but the pain and bloating is still pretty bad, but that is pretty disappointing considering how much medication I’m on right now, I’ll detail it below.

I haven’t done much with diet except to try the low reside, low fiber diet recommended by the doctors to date. I did go low carbohydrate late last year for weight loss purposes because I have gained so much weight since I have been diagnosed because I can’t exercise because of my arthritis and UC and I’m just to exhausted to do anything. Also the hospital won’t support my diet so when I’m in hospital I have to eat what they provide so I have to start over again. So the longest stint I get on any diet is about 12 weeks and then I have to start over again and I feel a bit defeated.

Now looking back over this I just feel like a bit of a whinger but it’s nice to be able to vent to people who can relate.

As I’ve just been hospitalized I’m not sure if I’m going to be kicked off the drug trial, because the treatment I received may have breached the protocol of the trial, so I won’t know until I attend the next trial session with the doctors and they review the treatment I received. So for now I’m in limbo not sure what is happening with my treatment.

My Medications:

For the Ulcerative Colitis I take: sulphursalazine, 50 mg pred daily, 1200 mg calcium (w/ vitamin D), Ferrograd C, Vedoluzimab (trial drug by intravenous infusion monthly)

For the Hashimoto’s I take: 150 mg of thyroxine daily

For the Rheumatoid arthritis I take: Methotrexate subcutaneous injections 1 weekly and Norspan 20 mg transdermal patch weekly for pain management, Temgesic for break through pain and megafol

And generally lots of paracetamol!

Mak’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details

3 thoughts on “UC Plus Bonuses”

  1. HI Mak,
    Hey, I want to tell you thanks for sharing your story. Everyone of us who is living with UC is s unique, but at the same time there are so many similarities between us. There were some days when the joint pains/arthritis got so ovewhelming, that all I could do was search the cabinent for the vicoin bottle and throw a few of them down… and by golly, that would sometimes do the trick. but of course those pain medications are a short term band aid, and not a long term fix.
    I don’t want to sound too much like a pusher of trying some diet treatment options for your UC, but for me its been pretty useful. and I noticed over a few weeks some definite changes with my joint issues too. the joint stuff still does come and go like the wind, no rhyme or reason to is, but much less severe than when I was severe with UC. I wish there was a study that could say it was for sure connected, but we might have to wait on that.
    If you haven’t really gone full bore on the diet, you might want to check out the SCD page and think about it. It usually will help with weight loss if that is something you are interested in too.
    Just an idea, and I’d be the happiest to hear you writing again that things have massively imporved for you and your lifestyle.

    Best of luck!

  2. Hi Adam

    Sorry it’s taken me so long to get back to you, but I’m back in hospital again.

    It looks like I may be adding a fourth or maybe fifth auto-immune disease to the list (lupus/chrons). I never recovered from my last flare, had a severe bleed at the supermarket and had to be taken by ambulance to the ER (very embarrassing) then 10 days ago vomiting and the usual flare symptoms put me back in hospital in the middle of the night.

    Now while in hospital for the flare which is settling, I have increased upper GI tract symptoms and bleeding kidneys too, which they think may be auto-immune as well.

    Hopefully I will get some test results in the next couple of days and have a clearer picture of what is actually going on, but in the interim at least my current flare is coming under control so on the UC front at least some progress has been made, albeit that this flare happened on fairly high dose of pred so that is a bit disappointing.

    Take care

  3. Hi Mak,

    I stumbled across this through Google and was horrified to see what you’ve been going through. I have Hashimoto’s myself and colitis runs in my family, though I haven’t developed that. I’ve been greatly helped by dietary changes and am on no medicine at all, only select nutritional supplements.

    A book that could really help you is “Why Do I Still Have Thyroid Symptoms…” by the brilliant Dr. Datis Kharrazian. The book is not only about thyroid stuff, it’s about all autoimmune diseases in general and it tells you how they happen and what you can do to calm them down and stop your body from attacking itself. Because you haven’t done anything to temper your immune system, it’s raging away in your body and going from organ to organ. By changing your diet, healing your gut (a leaky gut is now thought to be the root cause of autoimmunity by leading-edge doctors), balancing different systems in your body and taking the proper supplements, you can stop your immune system from going haywire. Not that I’m saying that there is a cure for autoimmune disorders, but you can get them to the point where you can have a decent life and they only flare up on occasion (like when you eat the wrong things).

    Dr. Kharrazian also has a website (www.thyroidbook.com) where he’s written some articles, and there’s a Facebook page called Hashimoto’s 411 with a lot of people on it (myself included) who are using his methods, with the help of functional medicine practitioners, to heal themselves of Hashimoto’s and other autoimmune issues. There is help out there from this community!

    I tried going the traditional doctor route and found no help at all but things have gotten much better now that I’ve discovered all these things. By the way, the types of diets you might want to look into are the Specific Carbohydrate Diet, the GAPS diet and the Paleo diet. All are gluten and grain-free, which is very important, especially gluten. You can find lots of info on these diets by Googling.

    Feel free to e-mail me if you have any questions. I wish you the best of luck.

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