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Ulcerative Colitis
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Posted 9/19/2012 4:51 AM (GMT 0)
Glad to read in Therearemiracles's thread that you're now feeling better. Did you go back on brandname Colazal after its return to production in March? / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/22/2012 4:38 AM (GMT 0)
bump
Posted 9/22/2012 12:38 PM (GMT 0)
sorry i saw this. Yes, I did go back on name brand Colazal. I was at 9/day, but an now on 15/day. TOO MANY PILLS. I was still having major issues, but different than any flare I have ever had....even though GI thought it was UC, I thought maybe something I was eating....so I quit the gluten and dairy. Feeling better, but not perfect. My next step is to insist on Wellbutrin instead of Humira or Remcade. It canlt hurt to try before the "heavy hitters"....and I am sure my family and co-workers will appreciate me being a good mood for once!!
Posted 9/23/2012 5:22 AM (GMT 0)
Aaarrrrggg, 15 daily is too many! My gastro has RXed Xifaxan temporarily for some UCers who reported flare symptoms while on 9 daily Colazal longterm. Rey posted at one point that it gave her daughter a boost for some time. RE Wellbutrin: I think Sara14 did a thread related to that about a yr ago-- with many replies, in case you want to look it up. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/23/2012 3:51 PM (GMT 0)
I did look it up and I looked on the Crohns site too. I just don't want to do the Remicade. Too many side effects to worry about and the risk of cancer. Plus, I just can not afford it.
Posted 9/23/2012 6:23 PM (GMT 0)
Did your gastro mention 6-MP or Imuran possibility before going to biologics? I definitely understand what you're trying to avoid. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/24/2012 12:16 PM (GMT 0)
He did not mention either one. He has been pushing Remicade for years, but I used to do medical research with Histoplasmosis, so that was a no brainer for me. My insurance covers Remicade and Humira at 75%, which still leaves me with quite a chunck. Plus, I just don't think I need it yet. Aren't 6-mp and Imuran in the same class of drugs?? My boss (PhD pharmacology) says bad side effects and not as powerful as Humira or Remicade. When I asked about Wellbutrin, he said it is like a free lottery ticket....you may hit the jackpot, you may not...worth a try.
Posted 9/24/2012 8:54 PM (GMT 0)
No, 6-MP & Imuran are oral immunosuppressants, not biologics (infusions/shots). Malkavian (graduate student in biology) is one member here who had success going from 5-ASA to (generic, I think) Imuran. Maybe it would help your future decision-making to ask in a new thread who has been able to achieve remission going from 5-ASA to 6-MP or Imuran-- or while jointly taking a 5-ASA with 6-MP or Imuran. I'm suggesting that because I recall reading several success posts here over time from forum members on those meds. Also, I do know someone in longterm successful remission from Crohn's taking a 5-ASA/Imuran combo-- who has a busy life & generally good health otherwise. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/25/2012 2:53 PM (GMT 0)
Hmmm, more to think about. I was under the impression that 6-mp and imuran would have the same side effects without the effect as Remicade and humira. That was shy my GI was going straight to the biologics. Better results, same side effects. You know what I think my "cure" is going to be??? Quitting my job and moving to the beach. The ocean as my personal toilet!! ---or maybe----just finding a job I can do from my house. I hate the commute everyday....so stressful. Am I going to make it, and I going to have a accident. Just want to feel normal again!
Posted 9/26/2012 5:41 AM (GMT 0)
Agree that a stressful commute could be prolonging your flare. Living within walking distance of my workplace enabled me to show up there most of the time, though I was far from perfect in punctuality. I got Depends for the shaky mornings, kind of like a security blanket. (LOL) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/26/2012 12:00 PM (GMT 0)
Being within walking distance would be a dream. I have a 30 min. commute. And although my job is very flexible, I still have to be there. Don't you wish money was never a problem, then you could chase all these remedies that may or may not work, rest during the day and exercise like you are suppose to. I just paid a 1500.00 chiro bill. And If I have to pay 500-2000 a month for Humira or Remicade, that is really going to stress me out.
Posted 9/26/2012 7:41 PM (GMT 0)
Yep, money issues are a HUGE drag!!!!!!! I've been reading online about Jennifer Jaff, the IBD advocate with longtime Crohn's, who just died in CT. In recent yrs she had to pay $14,000 annual premiums to get health insurance. Then, of course, the insurance co. still hassled her when time came to pay her bills for scopes, etc. Anyway, kudos to you for being self-supporting. BTW, after you mentioned histoplasmosis above, I remembered that Malkavian posted after starting grad school that they were not going to let her rotate to some of the communicable microbe labs because she was taking azathioprine (Imuran) to maintain remission. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/26/2012 8:00 PM (GMT 0)
Yeah, she shouldn't be in those labs. I worked in infectious diseases, and I hated every minute of it. HIV/AIDS lab was my next stop if I didn't get out of there. There are plenty of good rotations she can do, no need to put her in harms way!! I think I just need to win the lotto!! I can't imagine paying that kind of money to keep my insurance.
Are you still feeling well?
Posted 9/27/2012 5:58 AM (GMT 0)
Yes, I'm pretty cautious about food & resting if/when I feel tired. Those basics definitely help me. At this point I know what my colon tolerates-- for the most part. So I avoid whatever is likely to trigger inflammation. I also seem to benefit from Centrum Silver daily vitamins + light daily dose of glucosamine500/chondroitin400, both gastro-approved. I walk a lot routinely, but also lie down & stretch out to relax in between chores. Ye olde colon loves it when I lie flat on my back, which, obviously, I couldn't do at work. Desk sits put more pressure on it; during my 2 worst flares I had to take disability leave to minimize that kind of physiological stress. (It's like escaping the downward pull of gravity.) I'm being careful because I did top out of Rowasa in 2009, after 14 yrs of successful intermittent use, the older oral 5-ASAs never worked well for me, & past steroids seem to have weakened a hip. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/27/2012 12:41 PM (GMT 0)
What do you mean "top out" on Rowasa? Did it quit working for you? I take it every night without fail. And have for years. My GI never told me that I shouldn't.....he even insists on my doing 2 enemas if I am flaring. Wish I could get off of them, but they work! I still really want to try the Wellbutrin. Maybe it will bring me out of this funk while also helping the UC.
Posted 9/27/2012 7:01 PM (GMT 0)
The Rowasa (generic, per my insurance) immediately made me feel worse when I shot it in. It felt like a hole was tearing in my left side-- so my gastro told me to quit it. I got out of that flare (2009) on brandname Colazal alone; sigmoid colon was the most inflamed-- with ulceration. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
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