FRUSTRATED!

Introduction:

Hi! My name is Tracy, I’m 33 and from Canada. I was 16 when i was diagnosed with Ulcerative Colitis (UC) but started getting sick just after I turned 14. I was scared so i tried to hide how sick i really was. Not the smartest thing I’ve ever done!!!!

Frustrated with Colitis:

I was 14 when i started getting sick with UC, not the greatest thing when i had an hour and half bus ride to and from school. It got to the point where i was taking garbage bags with me in-case i had to go (not a finer point in my life). I was scared so i down played it to the doctor when my mom would take me in.

Two years later it was so bad

that it was nothing but blood coming out,

I was only 100 pounds.

Most nights i was camped out in the bathroom with my pillow and blanket because there was just no point in leaving it. I was going up to 45 times a day. On one of my doctor visits i finally opened up about what was really happening and my doctor told me to quit chewing gum for 30 days. My mom came unglued!!!! that is when action was taken, so on my sweet 16 i was pooping in containers to give to the doc. After i was diagnosed they put me on prednisone for a month which put me into remission. They put me on asacol after but i had too much joint pain so they switched me to sulfasalazine. I felt great and once again enjoyed life. I started coming out of remission when I was 22, after i had my first child.

I have been in and out of remission since.

More out than in probably. My doctors have never put me on anything else, not even back on the steroids. I tried LDN for about 6 months but all that did was give me crazy nightmares all the time and my UC got worse. So now I am back on the sulfasalazine, out of remission and have less than 4 months to get myself in control or they take my colon out ( with no help from the doctors of course, steroids are looking pretty good about now). I’m going to try the SCD diet and hope that it works for me.

written by Tracy

submitted in the Colitis Venting Area




asacol, prednisone, sulfasalazine

10 Responses to FRUSTRATED!

  1. Eddie February 15, 2012 at 7:22 am #

    Hi Tracy, I have just begun my battle with UC, I read all of the nightmares about trial and error medicines. Haven’t talked to the doc yet and have never had surgery but do you think it mite be best to dive head first and get the surgery? I am 25 and since we both are young aren’t our chances for success VERY good?

  2. tracy February 15, 2012 at 11:10 am #

    Hi Eddie!! I think our chances for surgery success are very high. It still scares me though, complications can still happen. I guess my biggest fear is a j pouch not working for me and having to have an ileostomy bag for the rest of my life. I know that sounds pretty vain in the grand sheme of things but its a fear nonetheless. A lot of people wish they would have had the surgery alot sooner and i imagine i will be one of those people down the road but i cant help but try everything i can on my own first. At least if surgery isnt as great a turn out as i would have hoped, ill know i have done what i could. The SCD Diet gives me some hope. Good Luck!! I know i could use some :)

  3. Bev February 15, 2012 at 5:19 pm #

    Hi Tracy and Eddie…

    I am so sad that you guys have to put up with this disease so young. I’m almost 50 now, and have had UC for 15 years, and I remember being in my thirties, and getting diagnosed with it. I was like…’what’? Forever? I have to live with this forever? It was difficult to be sure!

    Before surgery, try some natural approaches, like mega probiotics, and maybe look in to fecal bacteriotherapy. You never know…you may the one who needs good bacteria in your colon. That is actually working for me right now! I never believed in probiotics, but I’ve been on the just over a month now, and there is no blood and no pain! It took a few weeks to really work, but here I am. I am still on the asacol prescription, too, but it was doing nothing by itself. Then, I just thought I’d try probiotics. I know natural gets laughed at, but there really is no harm in trying. No harm! The medical drugs can be harmful.

    I am also currently waiting to see a specialist who will actually do the fecal bacteriotherapy procedure. I can’t wait for that. That’s a whole bunch of good bacteria, shot right into the colon. Sounds gross, but I don’t care! It’s natural, and it’s not more prescription drugs!

    Just some thoughts for you guys…both of you:)

    Cheers,
    Bev:)

  4. Erica February 15, 2012 at 9:46 pm #

    Hey Bev,

    Which brand of probiotics are you taking? Good luck on FT and keep us posted if you get it. Thats awesome!

  5. Addam February 15, 2012 at 10:00 pm #

    Tracy, sorry to hear that you haven’t really found a medication that works. I was diagnosed at 16 as well and did the whole steroid thing off and on for years. Had to eventually get off them cause of awful side effects. I tried asacol and I can’t tolerate sulfasalazine for some reason.

    I eventually decided along with my gastro doc to try the lowest dosage of 6MP “50mg” one pill daily to lower my immune system. That drug did the trick and I went into a full blown remission after being on it for 6 months. I started it at at age 20 and have been on it ever sense and so far no awful side effects. I do have to to still get my blood work done more than most people, that’s been my only downside. They tried to take me off and I flared a few months later and they put me back on and got me back into a remission even quicker. Have you given any thought to 6MP? I know people are scared of the immune lower drugs and the small rick of cancer. Has your gastro doc even brought it up? Its worth trying before surgery imo.

    Take care.

    • tracy February 16, 2012 at 9:56 am #

      I dont actually have a gastro doc and maybe thats why i have such a problem changing medication. Iam from a small town and my doctor will not prescribe anything that could potentially be bad for me. I asked to back on steroids but he said no, it would do my body no good. I dont understand immune suppressive drugs, my immune system already sucks, i catch everything that goes around. Wouldnt the drugs just make that part worse? I do understand however that it would be a huge help to my UC. I will talk to my doctor about that. Thanks for the input, it helps to find out what works for others.

      • Addam February 16, 2012 at 11:32 am #

        Tracy, finding a great gastro doc is hard to find anywhere and I’m in NYC. You really should look into finding one somehow… that doc could save your colon since they specialize in UC. Surgery is always the last resort and based on what you have said I don’t think you have reached that last point since you haven’t tried any immune surpressing drugs. Your regular doc is right that long term steroid use is harmful. I got osteoporosis from it, along with other awful things I’ll live with and have to deal with the rest of my life.

        You could be catching everything because you keep flaring and you’re body is just weak from lack of nutrition and not absorbing the proper vitamins to help keep you healthy. Yes the 6Mp drug puts you at greater risks for colds and stuff like that, though I haven’t noticed much of a difference over the years as long as I always wash my hands and make sure to stay away from people I know who are already sick. The thing is my UC (and this is different for everyone) thinks my colon doesn’t belong in my body. The 6MP lowers the white count and no longer looks at the colon as an invader that doesn’t belong. When you get sick from a regular virus your white count rises to attack the bug, so in a way by lowering my immune system my colon is no longer looked at as a threat/virus and therefore doesn’t flare. My white count is low on 50mg, but on the low end of the safe side, which means my white count is still acceptable and I’m not at much greater a risk than anyone else. It really depends on the dosage. Also keep in mind it takes 6 months to work, they have to watch your counts/liver and take a lot of blood for the first few months to make sure the drug isnt harming your body. If it works and your body doesnt have any side effects… its a colon saver.

        There are short term and long term risks taking any drugs for UC or any chronic disease, but it was my last resort before having to possibly have major surgery and this drug worked unlike the others besides the steroids. I had to take the chance. Also always get a second opinion when it comes to doctors and surgeons. I know you’re in a small town, but never ever do anything that drastic without getting another point of view. My first gastro doc wanted to remove my colon when I was 19. I went to a second gastro doc for another view point and he advised to try 6mp and thats how I ended up keeping my colon.

        I also think if you havent looked into yet to check out http://www.ccfc.ca/ chron’s and colitis foundation of Canada. You might be able to speak to someone on the phone or email to help guide you.

        I wish you the best of luck and truly hope you can find some medication that will help you get well and avoid surgery. Also still try the SCD diet, you never know!

  6. Addam February 15, 2012 at 10:05 pm #

    Oh forgot to mention I’m 32 now. I also tried VSL 3 and had no positive results from that probiotic.

  7. Nicholas February 16, 2012 at 10:33 am #

    Hi Tracy,

    I too have had UC for awhile. I started out on Sulfaslazine after getting my first flare under control, it kept me in remission for 8 years. Over the last two years I have been flaring and getting it under control with steriods every 4-6 months. Over that time I have been on Lialda and Aschol HD. Last week my Dr. and I decided that type of drug was no longer working for me, so we had to take it to the next level. I am now working Imuran into my system and on prednisone to get my current flare under control. Last Wednesday was a emotional day for me, I am not too enthused about Imuran, but my mom who is a nurse and sister, a Dr., helped me out a lot. I also went on a light happy pill to keep my stess levels…level. Right now I am downing 18 pills a day, remembering how much I hate the getting over the flare stage. I swear I feel worse after I use the toilet as opposed to before. And getting used to the new drugs isn’t helping.

    I am opptimistic the Imuran will put me into remission agian for an extended time and I know my Dr. will monitor to me to make sure to catch any nasty side effects this drug may carry with it. At the same time I am looking to the future to plan whatmy next move will be when the Imuran no longer works for me.

    Keep your head up! There are other medical answers other than the meslamines. I will definately try a combo of meds and SCD before I let anyone take my colon.

  8. May April 17, 2012 at 7:22 pm #

    It’s scary how similar this is to me. I had symptoms when I was 14, but I was too scared to tell anyone so I hid it for two years. EXTREME regret for that. I am sixteen now, and just got diagnosed with UC this January. I’m still scared and sad; I know I should feel greatful that it wasn’t something worse like colon cancer, but I still feel depressed feeling like this so young. I was put on asacol but the joint pain was unbearable. I was then put on prednisone and am currently to tapering off it while trying out a new apriso mesalamine on top of VSL 3 probiotics.

    Hopefully I’ll hit remission soon or eventually.

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