UC help!

I have had ulcerative colitis for about 4 years now, it has been bad, but now its getting worse. I am currently taking 6 pills 3 times a day of colozal and each night taking an enima. I am lactose intolerant, gluten intolerant, but still having bleeding. I don't see what else i can do-there's not much left i can eat, and the medicine i take is already doubled-what should i do? My doctor presents no solutions besides getting a third colonoscopy, and after the first two didn't do much to help, i'm hesitant to get another one. Thanks

-Michael-19yrs old

---also, just got off prednisone steroids a week or 2 ago

Post Edited (Mikepika) : 12/19/2008 9:48:47 PM (GMT-7)

Wow, it really sounds like you need to find a new GI. Doesn't sound like your current one is doing a good job.
When was your last colonoscopy? And did the steroids help when you were on them??

     Hi Mike,

           My GI doctor will not perform a colonoscopy while I am flaring, so I would look for another gastro doctor.   However, when I was hospitalized they did do one.  They just wanted to see how far up the UC traveled.  Mine is confined to the rectal area so I assume it is just ulcerative proctitis.

           Your Colazal dosage seems a bit high, but it may go according to body weight.  My doctor has me take 9 pills a day when flaring.  Did you try Cort enemas?  They work pretty well.  When flaring I had a bit of a problem retaining them so the doctor prescribed Canasa suppositories.  Is your GI doctor aware that your condition is worsening?  My last flare, which started in April of this year, lasted for seven months.  I, like you, had a hard time getting off the prednisone.  Whenever I was weaned off I was only able to enjoy two weeks of remission before relapsing.  The last relapse the doctor increased my initial dosage of prednisone to 40 mgm of prednisone instead of 30 which he usually started me.  My taper was 10 mgm a week until the final week which was a 5 mgm taper.  I believe the 6MP finally kicked in too which led to this remission.  Ask your doctor about the 6MP.

          Good luck to you.  Oh and one more thing...I don't know what your diet is like, but while flaring it is best to follow a low residue diet.

I think you need to find a new GI. The first GI I went to wanted to do a colonoscopy. Luckily, it turned out he didn't accept my insurance. The second one said a colonoscopy was out of the question. He did a sigmoidoscopy, and even then he didn't get very far up the colon. He performed the colonoscopy later when I was in remission.

The Colazol dose seems too high, and if you are still bleeding, it isn't doing the trick. I agree with the other posters. No Colonscopy for now if you've had one in recent history. A good GI can tell what is going on from your symptoms. During the time the steroid was being weened, they probably should have done blood work and started you on 6mp or one of its cousins. Doesn't sound like you've been in remission. Start reading the posts around here. They will help you bring info and good questions to your doc. I think a new doctor at a center of excellence/teaching hospital is the way to go. Call today, as getting in takes time.
Good luck,
K

Hi..it could be that you're on too high a dosage of Colazal...never heard of one being on 18 colazal...

did you start at 18 or increase from a lower dosage?

Are you using the enemas nightly?

When did you get off pred?

Welcome to the forum.

quincy

Colonoscopies are not treatment!
It sounds like you need to get back on the steroids, if they were working. You have gone off them prematurely, perhaps.

You're taking twice the amount of Colazal that's normally prescribed. That can't be good, at the very least it's a huge expense for you or your insurance company. Have you used any other meds besides steroids? Usually if you've tried all of the 5-ASA drugs (Asacol, Colazal, Pentasa) they try an immunosuppressant next - 6-MP or Imuran. Beyond that there is Remicade, Humira (still in final stage trials) and the various new study drugs.

You probably are due for a colonoscopy, but it would be better to wait until things are a bit under control, if possible. Remember, the scope is used to see what and where the problems are, not to treat them. It can also protect you from colon cancer by finding pre-cancerous lesions.

I agree that you need to get a second opinion from a qualified GI, and you may well want to consider changing doctors. Seems like yours isn't treating you aggressively enough. And it's unusual for someone to need a diet as restricted as you say yours is, so proper treatment might allow you more dietary options.

Good luck, and welcome to HealingWell.