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Newly Diagnosed w/UC - Surgery & Imuran Question

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Ulcerative Colitis
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Posted 9/15/2009 9:38 PM (GMT 0)
Hi to all of you that suffer with UC and CD!

I am 49 and diagnosed last March.  I have never had a health issue or even been someone that has had a sensitive stomach so I am having a hard time accepting this but coping. 

I had my first flare in February and ended up in the hospital for 10 days in March (lost 15 lbs) and 15 days in April.  By June 14, I had tapered off prednisone and was having normal bowel movements (yippee!) and refused to take any additional medication.  I wanted to attempt to control it with my diet.  I was doing great for almost 2 months but then slacked off with the food the last week of July and BAMM, I got a flare again.  The month of August, the Dr tried to put me on Asacol but it does nothing for me and, in my opinion, makes me worse.  On Sept. 2, I had a colonoscopy which showed that 85% of my colon is diseased.  I am on prednisone again and taking 30 mg at the moment.  In 5 days, he wants me to begin taking Imuran.  I have no clue about this drug but, being that my blood tests showed that my hemoglobin is at 7 (should be 12), I guess I feel I should listen to the Dr and just take it for now. Any input on Imuran would be great.

What I am leaning towards though is surgery.  I feel that since my colon is 85% diseased and btw my grandmother died of colon cancer, that it would be better to have this surgery.  I am young enough that I am sure I could heal well vs. taking "hard core" drugs, getting older and weaker and having the surgery later on in life.  I feel it will be inevitable.

I want my life back, and from the research I have done on the web, it seems this surgery could work.

I live in Miami, FL, and I would greatly appreciate any referrals or personal experiences on the surgery.

I feel for all of you that suffer with UC and Chrohn's, especially so many of you that have been diagnosed so young.

Thank you for any help!

Viv

 

Posted 9/15/2009 9:43 PM (GMT 0)
Well, it's pretty much a personal decision whether or not to have surgery. You *might* have trouble getting a surgeon to agree to do the surgery, though, since you haven't exhausted all of the medical options. And remember that you can have complications from surgery that can be pretty bad. I have decided that I will get surgery if I can't control my UC with medical options, but I'll exhaust all of them first.

What medicines were you on when you were first diagnosed? Just prednisone? It seems your doc would have put you on something else.

I if I were you, I'd try some of the other oral 5ASA drugs a try and DEFINITELY get on a 5ASA rectal med.
Posted 9/15/2009 9:54 PM (GMT 0)
Viv, You've got a lot of different options to still try before surgery. But this is a personal decision so it's obviously up to you to see what works best for you. A lot of people do well with the medicines and remain in remission for years or even decades, but you're right that it's probably easier to cope with the surgery when you're younger.

You could take a look at the CCFA website if you want more details on the treatment options. I used Imuran/Azathioprine for over a year and it didn't help, but it could be worth a try as many people have benefited from it.
Posted 9/15/2009 10:49 PM (GMT 0)
Diet doesn't do much for me. If I were you I'd start back up on one since it seemed to help.
When I was first diagnosed my entire colon was affected and the doctor mentioned surgery which I refused (looking back it seemed too soon to mention it but maybe not). I had lost 20-25 pounds in about a week. I was put on pred and nine pills of Asacol daily. The Asacol wasn't cutting it, so they added Flagyl for a while to see if that would help. It didn't and I ended up on pred two more times. Then they suggested Imuran and I have to say, it's great for me. I don't get sick too often, and not too badly. I take vitamin C when needed. I don't get any side-effects from it and it's only done great things for me. I've been in remission since starting it (one normal bm in the morning for me), and it's been a few years now. I've had only two blips: blood in my stool during my freshman year of college, treated with Flagyl which did nothing, but then the blood just stopped, and now this year when I started Sprintec for birth control it messed things up. I'm now on Depo and I think I'll be okay. Good luck! You can try it, if it doesn't work, then you can think about surgery. You'll still be young enough to handle the operation =)
Posted 9/16/2009 1:04 AM (GMT 0)

You can get surgeon recommendations in your area at www.j-pouch.org

Sue

Posted 9/16/2009 1:34 PM (GMT 0)
I take Imuran (about 9-10 months so far). It's worked well for me. The only thing is I get tired a lot, and it's hard to snap out of the fatigue. However, if you're feeling good all around otherwise, it's not that hard to deal with. Just get enough sleep every night and hope for the best.
Posted 9/16/2009 5:17 PM (GMT 0)
Thank you to all of you for your informative replies. When I see some of the ages on here, I feel terrible to think that so many of you have been suffering for so long with this.

When I was first diagnosed, they tried Asacol, and it did not help me. When I was discharged from the hospital the 2nd time at the end of April, I was on Prednisone and 6MP but I stopped the 6MP. I took it upon my self to taper down from the Prednisone and try to manage my problem by controlling my diet. I felt great with no meds! Felt totally cured and thinking maybe all of this was just a fluke and I don't have UC. Well...unfortunately, I was wrong and I have to come to terms with the fact that I have UC. When I got the flare at the end of July, the Dr put me on Asacol again and no benefit. I hope Imuran works for me, but I am looking forward to researching the surgery option.

Again, thank you SO MUCH for your input.

Viv
Posted 9/16/2009 5:25 PM (GMT 0)
6MP and Imuran are very similar medications.
Can I ask why you quit taking the 6MP? Did you have bad side effects, or were you concerned about the possible long-term side effects? Just curious. Honestly, I'd MUCH rather be on something like 6MP or Imuran over prednisone. Did you doctor not explain that you could not stay on prednisone indefinitely and that you should stay on 6MP as a maintenance med? If not, I would honestly look for a new GI, as it seems the one you're currently seeing isn't good at communicating with patients.
Posted 9/16/2009 6:45 PM (GMT 0)
Thanks fruitgirl. The plan of that GI was for me to taper off the Prednisone and take 6MP at the same time to give it time to "kick in." The side effect I was having...or at least it seemed like I was having was hair loss. I have long dark hair, and I just couldn't handle the hair loss. I knew I could not stay on the prednisone indefinitely, and the GI Dr did communicate that to me.

I was discharged on 4/29 and, by 6/14, I was off of the prednisone with normal bowel movements but this was me taking matters into my own hands... O;-). I didn't want to be on any medication and at least attempt to control things with my diet. I just wasn't convinced that I had UC, but having this flare beginning at the end of July has convinced me. Also, I was floored yesterday when my hemoglobin was 7 when it should be at least 12.

I realize I can't play around with this.

Thanks again!

Viv
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