Need New Colitis Treatments, I’m Always in Pain and Tears

I was diagnosed with ulcerative colitis on my 15 birth day and at first I had blood and mucus for about a month.

Then I went to the doctor but it was too late, I had become severely dehydrated and fainted.  I was transported to a hospital and was diagnosed with UC. At first the doctor gave me salofalk, and it made me worse and and I stopped it.  Then my doctor gave me prednisone which game me a big relief and it saved my life. I am a young kid and I didn’t care about the side effects a lot because it was healing me. But as soon as I got off the prednisone the symptoms came back, my doctor put me on a bunch of medicine that was bad and nothing worked.  I have only been in remission when I’m on the steroids. Two months later i got dehydrated and fainted in the x ray room it was the weirdest feeling i ever felt and i want to tell everyone because its so strange. Anyway i stayed in the hospital for 2 months as my colon was so inflamed they were about to cut my intestines out and that made me so scared and anxious. But luckily i got a miracle and was well enough to go home. I was on a big dose of prednisone 8 pills a day and I felt the side effects very clear my bones were so weak i couldn’t move or walk up the stairs anymore i felt like i was 70!. I had another flare up two months later and i stayed in hosp for 1 month this time and the doctor said surgery would be the best option but my mom said no.  They sent me with prednisone 60 mg, very bad and horrible but i managed to live with it. Now I started remicade and it seems to work well for 1 week and i would get really sick again. I currently am in grade 11 but i don’t go to school because my colitis is uncontrollable and I’m always dehydrated and tired.  I stopped playing sports and eating and stay home all the time I’m in the washroom every hour and i get no sleep and no rest.  I’m in the washroom in the middle of the night, I’m going 9 times at worst 20 times and i have no solution.  They won’t put me back on prednisone  and I’m just getting closer and closer to the day i dreaded the surgery. I have been changed completely by this disease and I am worried about surgery, I wish I could be a normal kid. I have lost 2 years of my childhood and i need to get relief.  Please help.

Medications: prednisone remicade methotrexate and a whole bunch

Submitted by an anonymous UC’er via the Colitis Venting Area




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9 Responses to Need New Colitis Treatments, I’m Always in Pain and Tears

  1. Allyson May 30, 2011 at 12:52 pm #

    I am so sorry to hear about all your struggles with UC. It definitely is not an easy disease to have and I feel so bad that you have to go through this at such a young age. I was also very sick like you and nothing would work so I ended up having surgery in December. I know it sounds scary, but it has been the greatest decision I have ever made regarding my UC. It has given me my life back. It is a long journey and recovery, but well worth it in the end. Listen to your doctors – if they say surgery is your best option, they are probably right. I didn’t listen to mine and regret not doing it sooner. But also listen to your heart – you will know when the time is right. If you want to keep trying with medications then absolutely go for it. But don’t let yourself get so sick. I will definitely keep you in my prayers. Try to keep your head up. Things can’t be bad forever. Be positive – your attitude will get you very far!! And remember that everything happens for a reason and this is only going to make you a stronger person :) Best of luck – please keep us updated on how things are going for you in the future!!

  2. Shaun Friedman May 30, 2011 at 1:20 pm #

    You may want to look at foods which will heal your gut and reduce your symptoms based on chinese dietics. When you ingest foods, there is a “thermal” nature to them. They are either hot, warm, neutral, cold, or cool. Not temperature, but the reaction they have in your colon. 90% of the time, ulcerative colitis patients have “Damp-Heat” in their colon. Check out some “damp heat” diets online. You may want to try tangerines and mandarines for fruit, and spinach and eggplant for vegetables. Increase your intake of dried cranberries and chamomile tea. Tofu and soy milk will also be cooling to your system. (This implies that you do indeed have “damp heat.”) The best thing to do is to see a chinese practicioner so they can look at your tounge and give you a proper diagnosis.

  3. Olivia C May 30, 2011 at 9:59 pm #

    Don’t be scared. I was terrified when I was diagnosed last summer at 18. Prednisone seemed like a gift at first, but then when my doctor tried to taper me off of it things just got worst. I was on and off flaring for months on it too.
    I got put on 6MP (aka Purienthol aka Mercaptopurine) along with the 4.8 g of Lialda I was already on. I had to be on prednisone for about 2 months while taking the Mercaptopurine since it takes a while for it to work. Since being on it my life and UC is basically back to normal. I have 1 or 2 poos a day haha, and I can eat basically anything.

    You have to get tested to get on Mercaptopurine bc theres a severe reaction you can have to it, but if you can take it, try it! My doctor wanted me to go on Remicade but this worked so much better.
    Good luck and I promise things get better!

  4. Riz May 31, 2011 at 1:55 am #

    Like Shaun mentioned look at foods you are eating, I was diagnosed last summer with UC and in February was have the same symptoms as you which put me in hospital….my doctors wanted me to have the surgery but I too was not sure it was a good idea. I decided to follow the SCD diet which in the beginning was very hard going but in the last month things have definitely improved. http://www.breakingtheviciouscycle.info/ there is also a book that is worth getting too.
    Check these guys out too they are amazing and extremely helpful and have a weekly podcast.http://scdlifestyle.com/about/
    hope this help and you feel better soon.

    :)

  5. Tony (UK) May 31, 2011 at 3:22 am #

    My heart goes out to you, I hope your doctor gets the symptoms under control and you start to enjoy life again.

  6. Matt May 31, 2011 at 11:40 am #

    Try the Specific Carbohydrate Diet. It has helped thousands of people. And, with a little effort, it can help your UC too.

    Best,
    Matt

  7. Jonz
    Jonz May 31, 2011 at 6:16 pm #

    You are not along in this eternal battle with UC. We are all in this together. The fears you have are real and we share this with each other. Learn about this as much as possible, see what your parents and doctors feel that is best for you. And please keep us informed as well on your health update. If there were magical words we could say to help you feel better we would say them but all we can do is support you in this challenging time. But if it is any comfort, we understand.

  8. Stephanie June 2, 2011 at 12:59 pm #

    I just wanted to let you know I know exactly what you are going through. I, too, was diagnosed at age 15 with severe ulcerative pan-colitis and have been battling it for about three years now. I have a ridiculous amount of ulcers in my colon, my stomach, and my duodenum. I have had to take prednisone several times and in these past three years have probably only been in remission twice and it was for no longer than a month. It seems to me that you are also steroid dependent, meaning that you have to be on that medicine to be feeling well. Prednisone is such a dangerous drug with such nasty side effects. I actually developed kidney stones from it and feel so much weaker. When my doctors saw how badly the steroids where affecting me I tried Remicade which is a very powerful drug as well. The only problem for me is that my doctor mixed my Remicade with 6mp which is a chemotherapy drug and I ended up having these bizarre episodes at night where it was like I was having seizures. So I had to stop taking that medicine. Now I take a drug called Humira. It isn’t enough for me but it is fairly easy to take. You just give yourself a shot of it in your stomach every other week. That might be something to look into. As of right now though, it is not FDA approved for people who have UC, although it is approved for Crohns Disease. My doctors think it will be about another year until it is approved for UC, so your insurance probably wont pay for it and you probably wont get it approved by your insurance if you are under the age of 18, but it is still something to look into. I also go to a place called Trim Wellness Cafe and I get infusions and shots of vitamins because I know that I am not absorbing any nutrients with the colitis. After I get an infusion I feel like I have much more energy and my skin isn’t all dried out from being dehydrated. It really is an awesome place and I highly recommend it.

    As for the social life, I completely 100% understand what you are going through. I had to stop going to school as well… It’s just too difficult having to excuse yourself from class and run to the bathroom several times a day. Not to mention when you take these certain medicines the suppress your immune system and make you susceptible to catching all sorts of things. I wish I could be a normal kid too; it’s hard watching all your friends around you live their life and you just feel as if you are on house arrest because you aren’t well enough to go out. I know it feels like you are being punished but the best way to cope with this disease is to just be strong and stay positive. When I’m feeling down about things and get depressed, I think “Well it could be worse”… and it’s true, it could be worse. I am also in the position of having to get the surgery and I am terrified of it too. I’ve been doing a lot of research about it and most studies show that it is very beneficial and really does help a lot of victims of UC. In my case, I am afraid because I also have the ulcers in my stomach and duodenum and I feel that I will still have problems even though I don’t have a colon anymore.

    Before I make the big decision to get surgery I think I am going to get a second opinion. I have tried several different doctors, some could help me and some couldn’t. There are some doctors out there that know more about certain treatments than others. I don’t know where you are from but an excellent Children’s Hospital in Florida is Shand’s Children’s Hospital at the University of Florida in Gainesville, FL. They work with a team of doctors there to help you get the best treatment plan possible. Hope this helps and I just want to let you know you are not alone, no matter how lonely and isolated you may feel, there are people out there that are going through this exact same thing along with you. You just gotta stay positive and hope that it all gets better. Good luck!

  9. Peter NZ June 5, 2011 at 2:52 am #

    Dude,
    You sound just like me. I couldn’t stop the pred without having a flare. Everytime I’d taper down and off the pred I’d have a flare. But……..The last time I tapered down I also eliminated gluten completely out of my diet. I haven’t had a flare since!
    I reckon its worth a shot mate; give it a couple of months and see what happens.
    Hang in there fella’
    Good luck,
    Peter
    P.S. I don’t eat meat either

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