Living with UC is Already Work


So I wrote on here about a year back about me and my UC (story was called “Rough Time” (I was 17 at the time and have a severe case of ulcerative colitis). I had to stay in the hospital 2 weeks when it barely started to get 2 blood infusion, an iron infusion, and shots, etc. and all that good stuff. I’m happy to say that as of two days ago I graduated culinary college!! :) YAY!!

Colitis Update:

I’m kind of sad to say that I still haven’t resolved this problem at all. I’m on Remicade and get it every other month. Every month since I started I start getting UC symptoms and by the middle of the month I start having to be on other steroids again too. I went to see my doctor and he is very worried that I’m on the strongest stuff already and it doesn’t seem to be helping (and at such a young age).  We upped the dosage to the highest it can be in hopes that my symptoms wouldn’t come back.

Weirdly enough because of stress and everything this last month, the symptoms have come back quicker than before. I’m not really sure what to do anymore because I’m a little scared. Not only is the strongest medicine not working but the other meds that I have to keep going on are affecting my life to high levels. I just got married with a (slightly) poofy face, (luckily it had went away mostly). My friends at my college graduation two days ago saw me with my normal face for the first time in about 9 months. I want these things gone but the medicine isn’t working, and I really can’t just stop what I’m doing and get surgery (I don’t want to anyway) because I have to be able to pay for my apartment (which I’m barely able to do with my work as it is). Don’t get me wrong, I think this mostly has to do with stress at the moment. But I need to know if anyone has any suggestions for me at all? What has worked for you? Anyone else basically have their doctor worried and saying they don’t really know what to do anymore?? I had to take 3 days off of work last month, i can’t keep doing that.

In need of some advice please?

written by Autumn

submitted in the colitis venting area

7 thoughts on “Living with UC is Already Work”

  1. Hi,

    Have you looked into diet? When I first had my symptoms earlier this year I was put on a tapered prednisone program. Yep I was down to 1/2 BM a day with random times of appearance of blood and mucus…I don’t really change my diet and basically off the prednisone I ended up flaring. This time round, back on prednisone but doing the scd I am down to 1 BM but this time not seen any blood or mucus and the stools are formed and long which I haven’t had in 2 years!!!!
    Bottom line, the diet has played a big role.
    Apparently the microvilli is overpowered and prohibited in digesting carbohydrate so this feeds the abundane bacteria in the colon which wait for the unprocessed carbs. In crohnes the bacteria move into the small intenine or even further up the track, in some cases colitis becomes chrones. This is what I learnt and why the diet is effective for so many.

    If you cut the carbs than easily digestive foods gives the mircovilli time to heal, but probotics and the right food will help overpower the bacteria overgrowth. Give the diet a go whether it is the GAP or SCD or another. It seems like all else is not working.

  2. Please try a good probiotic. I use Garden of life Primal Defense ultra. I am in remission after starting it 2and a half years back. Good luck and best wishes.

  3. I would love to change my diet, but I’m one of those people who try and look for anything that’s in the pantry because of a serious lack of money. haha I know that was blunt, but it’s true. What should I do!? I don’t have the money to change my diet at all right now. :/

  4. I’m so sorry to say this, but the reason that the meds aren’t working is because meds DON’T work. They each may work a little at first, but they all eventually fail.

    I don’t believe UC is an incurable disease, and it isn’t the type of thing that should even be treated with mediacl drugs. There…I said it! I don’t know why the medical profession can’t see this fact.

    Like Uma says, above…we all NEED to repopulate our good bacteria. Probiotics are the only answer! When will we all learn this? And, depending on how ‘severe’ your UC is, dosages may and should be raised, and it may take a month, or more, to see positive reults!

    Please try them. You may even be able to get off ALL the meds in the near future, like I have managed to! I wasd given the ‘options’ of remicade, imuran, steroids, etc, and I opted out! No way. The doctor tried to convince me, but somewhere deep inside myself, I just knew they wouold not work and would only possibly harm me.

    Think about it. Give a good probiotic a try and hang in there for at least a month! Double up on them if you have to. I don;’t work for any probiotic company…I just care about all of us. We are being lied to because we don’t know any better! WQe are not doctors, but we tend to do whatever they tell us to do. Any doctor that tells you that probiotics won’t help, is useless! (Sorry to be so blunt), The evidence that they DO work is all over the news, the internet…everywhere!


  5. I lost 10 lbs during a 2 month long flare. Does anyone know of any good protein shakes to help gain weight and that do not effect there UC? I used to take Whey protein but my body can no longer tolerate it

  6. I know this sounds probably pretty wimp-ish but I can’t wait a month to see results. I waited before and I had lost over half my blood. I never want to get that close to dying again, not over this anyways. I would love not to have to take meds though. Think it would work if I started them once my flare quit? that way I wouldn’t bleed to the point of it scaring me but I’d still get them in my system, just when it’s already doing ok, so It will stay that way. Does that seem like it would work??

    1. You don’t sound ‘wimpish’ Autumn…however…that is the problem. Nobody wants to ‘wait’ to see results! We are all so used to meds, whibh, by the way, can also take weeks to see results, that we want and expect instant gratification. Unfortunately, life doesn’t work like that.

      If you are losing that much blood, the drugs aren’t working anyway. The drugs are not stopping the bleeding. Probiotics and L-glutamine will. Especially teh L-glutamine. Don’t wait until you are out of the flare…you can take these two things while you are still on the meds!! Then, you may see such good results, you may want to stop the meds YOURSELF. I am not telling you to stop the meds first. Just start those probiotics to get your good bacteria back, and add the L-glutamine to stop that bleeding!!

      Trust me. You aren’t getting results from the meds. What if what I am telling you actually works?? You don’t have to stop the meds…yet…just try a 50 billion strain probiotic, once per day, and from one to eight scoops (the scoop is provided right in the tub) of fermented L-glutamine powder mixed in juice, every day.


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