Wanting A New Colon For Christmas

My Colitis Experience:

I had my first UC flare in July ’08 (ended up in the ER on vacation) and was diagnosed in early ’09.

My disease is moderate-severe, left-sided and also in my rectum (nice, right?!).

Since ’08, I’ve had several major flares and my condition continues to be unstable. I’m going through a flare as I write and in the past 7 days I’ve spent a night in the Emergency Room, had my 4th colonoscopy, missed a week of work, gone almost 3 full days on a clear-liquid diet, and as anyone with UC knows, have had incredible amounts of pain.

My doctor wants to put me back on prednisone. I am strongly opposed to going back on the steroid because I was already on it for 3 1/2 months earlier this year to try to contain my last flare. It didn’t work…but I did gain 10 lbs and suffered many other side effects. My doctor has said that it’s the only thing to quickly contain such an intense flare, but it didn’t help my last one (which lasted for about 8 months), and the long-lasting effects of prednisone are dangerous. Aside from the prednisonse recommendation, I have to have more bloodwork/tests to determine if my doctor wants to either increase my current dose of 6MP or change my treatment altogether by putting me on Remicade. I’d rather increase my 6MP…while going on the 6MP initially scared me, Remicade scares me even more.

I am at my wit’s end. This disease has stolen so much from me in the last few years…I’ve missed out on quite a bit of living and spent many days (upon days) in bed. There are times (like this week) when leaving my apartment and driving myself to the store is a huge feat. I feel 90…and I’m in my early 30′s.

As anyone who has UC knows, this can be incredibly debilitating. Even when not in a flare, my bones and joints ache at times so badly it hurts to sit, the fatigue is overwhelming, and the inflammation has spread to my bones and eyes.

I’m looking for ANYTHING that anyone has done that worked or provided some relief. Anything from medications to diet to alternative therapies. I’m open to anything.

Medications:

I started out taking Pentasa and then Lialda. I was switched to Colazal a couple of years ago because I felt nauseous on the first two medications. I have to take a total of 9 Colazal a day. I was taken off of it for a month and a half because I was losing my hair, and it seemed that was the cause. With the onset of my current flare, I was put back on it.

Earlier this year, I was put on 6 MP (similar to Imuran) to take in addition to the Colazal because I had a flare that wouldn’t stop. So right now, the Colazal and 6 MP are my maintenance drugs. I have not noticed any major side effects so far from the 6MP.

I’ve also been prescribed prednisone (which didn’t help), Bentyl (just to help with cramping…which it seems to), and both steriod and Rowasa enemas. The Rowasa enemas actually seem to be helping me right now (knock on wood).

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written by Christine

Submitted in the Colitis Venting Area





4 Responses to “Wanting A New Colon For Christmas”

  1. AdamDecember 16, 2011 at 12:13 pm #

    Hi Christine,
    You story sounds so similar to mine in so many ways. I was diagnosed back in Oct. 2008 and had several sigmoidoscopies and a colonoscopy over the next 15 months. The medications I tried either did not work well for me, or only worked initially until my body became immune to them. That was pretty hard to take in and deal with, especially when my symptoms were out of control also.
    Yes indeed, it was really hard.
    But, it eventually ended.

    What you might want to do is read the Remicade Patient Survey which is right here: http://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

    That survey is from patients from this website who have used Remicade.
    The remicade did not work for me, but there are quite a few people who have had great success with it.

    Something that I highly recommend anybody do who has UC, is to try and meet in person with someone else who has UC. I know it’s not super easy to do, but if you have a local IBD support group, or a Crohns and Colitis foundation group, it might be very helpful for you to meet with some others living with IBD. That for me, the in person meet ups, has been SUPER HELPFUL.

    Lastly, i’ve had good success with treating my UC with diet for over two years now. there’s much more info on that at http://www.ihaveuc.com/the-diet and there is also a specific newsletter on that page that is focused on diet.

  2. SherDecember 16, 2011 at 2:44 pm #

    Christine,

    Your symptoms sound exactly like mine! I tried Imuran as well, but did nothing. I’m currently on old school sulfasalazine, which is starting to kick in. I take lomotil before I go “out” as in to work, or shopping, and it helps to control the “urge” to go. I also had intense joint pain and back pain that kept me up at night, my doctor recently put me on Ultram, generic Tramadol for that. It has helped tremendously. Even though I know it is not curing me, I know nothing will. I do not feel the pain I once did. It allows me to go Christmas shopping and do things a few weeks ago I could not. I am also in my early thirties and have had this since I was 22. I will not go back on prednisone ever again. While it helped me get out of a flare up while on it, but a week or two after stopping I would be back to square one! Except I would also have acne, 15 extra pounds, losing my hair, and a rapid heartbeat!!! Forget that!

    One thing you did not mention was your diet. I have cut gluten out and that does help. It takes a few days, but I feel better every time I do it. It gets rid of that “bloating” feeling that accompanies UC. I allow a cheat day every once in a while. It doesn’t completely get rid of all symptoms, but helps a lot. It’s hard at first because you have to go shopping and read labels, I ate out last night at a mexican rest. and had no problems ordering off the menu. You can still have corn tortillas and rice etc., If you haven’t yet you should do some research on it. Just a thought, every piece of advice helps. I’ve had this 12 years and still haven’t got it figured out yet…

    Good Luck

  3. garryDecember 16, 2011 at 6:06 pm #

    christine,
    your story is sooooooo familiar. after being diagnosed in feb 2005, i ran the gamut of available meds (including remicade) and was sorely disappointed with the results. by early 2009, surgery was the only option the docs had to offer, but i wasn’t ready to throw in the towel on my colon.
    like you, i was interested in an alternative path. i picked up a book on amazon called “self healing crohns and colitis”. the author, a naturopathic doc, david klein, recommended a three part program of rest, dietary change (fruit based vegan diet) and re-creation. i decided to give his approach a try and had great results, though i ended up experimenting mightily on the diet side. through trial and error, i have wound up with a dietary approach that feels alot like the SCD.
    also, i started seeing an applied kinesiologist, who was recommended to me by a friend. i can’t explain exactly what my AK doc does, but it is a combination of chiropractics, eastern medicine and natural supplements. i have had much better success with my AK doc than i ever had with my GI. within a few weeks of seeing her, my 2 year flare ended. and, i went for months with no blood and solid BMs (which i thought would never return).
    while i have enjoyed huge improvements over the last couple years, i am not free of UC. i have seen symptoms return, especially when i stray from my diet or have increased stress, but i am now able to control flares by dialing back hard on my diet (avoiding sugars, grains, alcohol, coffee), and getting some extra rest.
    given how idiosyncratic UC is, i cannot say that what worked for me will work for others. but, if you are interested in pursuing a non-medical path, there are options for you to try.
    whatever you do, stay positive and know that you are not alone.
    best of luck in your journey.

  4. OrdinaryWorldWhereRUDecember 16, 2011 at 6:30 pm #

    I am on Remicade. It isn’t scary. I have had no side effects yet. My doctor did a heavy prednisone course one time and said he would never do that again because it isn’t effective for me and is more akin to ‘nickel and diming’ the treatment. I read other people’s stories who shared that Remicade changed their lives. I took the approach that if I had cancer, I wouldn’t refuse the treatments so why would I do that for a currently incurable, chronic disease? It’s no one’s fault I got this and I have to do all I can to manage it. I asked my doctor why so many people were scared of trying Remicade. He said it does sound scary but the real monster here is my IBD. At the time, my odds of having complications from this disease were 1 in 10 but complications from the Remicade were about 1 in 1000. I tried SCD but it didn’t work for me. Once again illustrating that we are unique beings. Best of luck in your search for what works for you.

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