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Ulcerative Colitis
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Posted 1/21/2011 3:52 AM (GMT 0)
I have had UC now for about 5 years. I was diagnosed in Oct of 2007 shortly afterwords I was medically discharged from the United States Navy. Ever since then it has been a struggle with pain and everyday life. This condition as many of you know affects me in more ways than one. Since being diagnosed It has been very hard to have a social life. With dating being the hardest people just dont understand being sick for months at a time. This is even harder to explain to people without giving them the details of the disease and grossing them out. Currently I am having a terrible flare this being the second this year. I do not know If I can cope with the pain anymore and am considering surgery or a new medication. If you guys have any thoughts or suggestions please let me know. Right now I'am taking 4800 mg of ascol a day 6 pills at night 6 pills in the morning. Also I'am on prednisone to stop inflamation 40 mg a day (not helping so far). cry
Posted 1/21/2011 4:04 AM (GMT 0)
I am sorry you're feeling so terrible. Things will improve once you find a better treatment option. have you considered 6mp or Imuran? That would probably be your next step in getting the inflammation under control. I can totally relate to how you're feeling, I know it's easier said than done but try not to stress about dating and social life, you need ot focus on you and getting healthy. You will have ups and downs but let's hope that you achieve a long-term remission soon, that way you will be able to get your social life back and not worry about explaining about your UC. I've had UC for almost 5 years now too, I still haven't told the majority of my friends and family. For me, t's easier this way. There are times I disappear because I am ill and they don't get it but I prefer them wondering over worrying.

How long have you been taking prednisone? I hope it helps you quickly.
Posted 1/21/2011 5:01 AM (GMT 0)
If you want to learn more about surgery I would suggest you check out Jpouch.org, and maybe also search UCVlog on youtube. Before you go that route though you still seem to have a few pharmaceutical options to consider. A drug like 6mp or imuran would probably be the next thing you would want to try. After that are biologics like Remicade and Humira. Rectal meds such as mesalamine enemas have helped a lot of people to.

There are a variety of other things you might consider giving a try as well such as diet modification and probiotics. I wish you luck finding something that gets you back in remission.
Posted 1/21/2011 5:01 AM (GMT 0)
I feel for you.

I have had similar experience/struggle to you. More often than not, others, even including my parents, say "well, take it easy, once you can have UC controlled, then the left to do is to maintain, which is not hard..." At first I explained to them, later on I got tired of saying again and again. Right now, I choose to either not tell, or 'yell' when tired.

I'm in the course of a flare up. It is harder to struggle than give up. However, for ourselves, let us go ahead, just one step.

Good luck.
Posted 5/10/2011 6:29 PM (GMT 0)
Update- Went into remission last Febuary and came off my prednisone about two weeks ago. Now i'm already having symptoms again:( . My doctor put me on 50mg of imuran about 2 months ago but since then I havent noticed any difference. I hate this disease.
Posted 5/10/2011 6:44 PM (GMT 0)
50mg of Imuran is too low. Most people are on 100mg-200mg. Why such a low dose?
Posted 5/10/2011 6:50 PM (GMT 0)
Not sure thats just what the doc put me on. I take 50mg once a day along with 2400mg of ascol in the morning and then at night 6 pills morning and at night.
Posted 5/10/2011 6:58 PM (GMT 0)
You should really be using some rectal meds to treat the inflammation in the rectum. I had a couple bad days last week but I think I was able to nip it with enemas.

I really think 50mg is too low for imuran. For 6mp, 50mg is a normal dose. Is your doctor doing blood tests to see if you're in the theraputic range for imuran? I can't imagine you are in that range at 50mg. If you're not in range, you will get much less effectiveness from the medicine. If your doctor isn't doing this, you should see about getting a 2nd opinion. I was never able to get into range with 6mp alone because of liver toxicity.

Has your doctor mentioned Remicade?
Posted 5/10/2011 11:13 PM (GMT 0)
I know it doesnt seem the most pleasant either, but rectal meds could help and you can get used to them with not too much discomfort. i started out on 75 the first time with azathioprine - 50 doesnt sound like it would be effective.
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