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Ulcerative Colitis
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Posted 4/21/2010 11:41 PM (GMT 0)
I'm a 20 year old male, diagnosed at the beginning of March with UC throughout my entire Colon. The diagnosis said "Granulated Ulcerated Mucosa"

Started out on Cipro, Flagyl and Apriso
Took Cipro and Flagyl for 2 weeks.. no improvement
Started Entocort Mid-March
Early April started having chest tightness, trouble breathing and headaches, determined it was from Apriso
Took Lialda for 2 days... same side effects as Apriso, determined I am allergic to mesalamine
Started sulfasalizine 5 days ago no side effects yet
Also prescribed Welchol 2 days ago to reduce diarrhea
Entocort has not had any effect, and Doc told me to start tapering
Had a blood test a week ago to see if I can start taking 6-mp

Any suggestions for anything else I can do? My symptoms are horrible at night and in the morning. I usually wake up 5-6 times and night and have liquid bowel movements, not alot of blood though. I havent had anything close to a solid bowel movement since before my colonoscopy (early march). In the mornings I usually have to go 4-5 times and often feel lightheaded and I get cold very easily. Ive lost about 30 pounds in the last month and a half (I was a little chubby before 5'9 185... now I'm about 155) So I'm still in a healthy range, its just scary I lost all of that weight in less than 2 months without exercising.

I'm a college student and I'm still able to go to class most of the time, but UC has pretty much killed my social life for now. At night I feel drained even though I barley do anything. I feel like I dont have it nearly as bad as some people on here, but none of the medications working at all is worrying me. Ive never had any real health problems before and this whole experience has made me realize how bad it sucks to be sick.

Doc said Welchol will help with diarrhea while im waiting for 6-mp to kick in, has anyone else had any experiences with this drug? I searched online and saw that some people with IBS have used it for diharrea but I could not find anyone with UC using it.

Also, if the 6-mp is effective, how long do people typically take it for? Months? Years?

Thanks for any advice
Posted 4/22/2010 12:34 AM (GMT 0)
Hey Matt, sorry you're having a tough time but I promise you'll find plenty of help here and never be afraid to ask any question, no matter how embarassing you may feel the question is...we talk about bowel movements all day long here. Regarding the 6MP, I was on it for a few years and it' usually takes a few months to fully get into your system. I started at 50mg, then 75 and finally 100mg which I was on up until my recent hospitalization a couple weeks ago. I truly feel it lost it's effect...I was taken off it for my doctor started me on Remicade. I see you're also trying Entocort...that steroid NEVER worked for me at all so at certain times over the years I've had to take Prednisone, which I'm currently tapering now. I've never had any side effects from the 6MP but everyone reacts differently. It's too bad you're allergic to the mesalamine for I know they can be pretty effective. If you start 6MP, be prepared for blood tests every few weeks to check your white blood cell count for that will probably drop while on the medication. Some people find help with diet, fiber supplements and especially probiotics...if you haven't looked into them you'll find alot of threads here....the most popular it seems is VSL3 which I take as well. Again, feel free to ask ANYTHING...this disease can get the best of us at times...at one time or another we all seem to have those rock bottom days where you'll find yourself saying "why me". Let us know if you have any other questions.

Gordon
Posted 4/22/2010 4:10 AM (GMT 0)

Matt Damon said...


Doc said Welchol will help with diarrhea while im waiting for 6-mp to kick in, has anyone else had any experiences with this drug? I searched online and saw that some people with IBS have used it for diharrea but I could not find anyone with UC using it.

I take Welchol for high colesterol.  My GI noticed I was taking it and mentioned that it may help relieve diarrhea during flares.  I haven't noticed any difference. 
Posted 4/22/2010 7:22 AM (GMT 0)
I feel so bad every time I see a new UC sufferer. I was only diagnosed last month so this is also new to me. I'm not all that knowledgeable with the different type of drugs yet but now I'm wondering why my doctor put me on Prednisone right away. But I also wonder why your doctor hasn't put you on it especially since it seems to work for a lot of people. It made my symptoms improve within the first week. So confusing... sigh
Posted 4/22/2010 7:31 AM (GMT 0)
LL continued... Since I haven't created a signature, I probably should list what I currently take

Diagnosed with Ulcerative colitis in 03/10, whole colon severely inflamed
Took Flagyl for 10 days (done)
Current Meds: Prednisone 40mg since 4/2/10; Asacol 5 400mg tablets, 2x per day
Supplements: Centrum Women One-A-Day multivitamin; Citracal Calcium with Vitamin D
Have not started any Probiotics but will start soon
Posted 4/22/2010 1:34 PM (GMT 0)
     Hi Matt, sorry you are suffering so.  I took 6MP for about seven or eight years, losing track of time here..lol.   When I started I was also on prednisone.  It took about three months to kick in along with the prednisone.  I enjoyed a two year remission taking Colazal and the 50 mgm of 6MP.  Then I started to flare yearly.  The 6MP has loss its effect.  The doctor bumped my dosage up to 100 mgm last summer and that made me terribly ill.  My white count plummeted to 1.6, I felt lethargic...just awful!  My bilirubin was twice the normal limit too.  Two weeks prior to starting Remicade (last Nov) the doctor took me off the 6MP.  I built up antibodies rather quickly to the Remicade, after my 3rd infusion, and am now on Humira and keeping my fingers crossed.  Good luck to you!
Posted 4/22/2010 2:13 PM (GMT 0)
All I can say is search this forum and the internet for any helpful hints. Watch your diet, what you eat DOES make a difference, no matter what the doctor tells you. Look into a quality probiotic. Start taking Vitamin D. There are lots of things you can try outside of taking the drugs. I personally had problems with the same drugs as you, and end up taking half a pill of Sulfasalzine 3 or 4 times a day along with watching what I eat and probiotics. Lots of people seem to see improvement eating canned spinach and sunflower seeds or organic sunbutter. Jarrows Whey protien powder for amino acids and glutamine. I dunno you have to experiment and see, nothing is 100%. Being your only 20 your body can heal and recover faster than older people, so that is on your side.
Posted 4/22/2010 2:30 PM (GMT 0)
6-mp can take months to kick in...I would ask about pred in the meantime. It's a steroid like entocort, but more effective (also more side effects).
Posted 4/23/2010 5:42 PM (GMT 0)
6-mp didn't help me and caused awful side effects. A course of prednisone with a quick taper and sulfasalazine as my ASA was what worked for me, in conjunction with natural therapies: probiotics to rebalance gut ecology, omega-3s to reduce inflammation, l-glutamine and aloe for gut healing, and dietary modifications. There is alot you can do to learn to manage your condition that most doctors won't ever touch on. I highly recommend all new sufferers educate themselves on UC, how a healthy digestive system is supposed to work (most of us don't have a clue), and ALL treatment options - not just meds and surgery.
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