advice, please, as my UC is getting tricky

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/4/2008 2:59 PM (GMT -7)   
Hi. So, two weeks ago I posted about how I was nearing remission..... maybe I jinxed it by saying something, but in any case I am definitely slipping away from remission as we speak. starting to have gurgly tummy, lots of diarrhea, frequency, losing appetite, the whole bit. I called my GI today (who I really trust and who I am scheduled to see in 2 weeks), and explained what was happening. He said that given the time of year and all the bugs/flus that arise, he said to see if I improve or deteriorate over the weekend, and call him next week with an update and let him know if I need to see him before our scheduled appointment. as you may recall I am still new to this disease (Relatively) and have been on Imuran now for almost 6 months. So, when my GI said that it sounds like I may be "brewing a flare," I asked him if that meant Imuran was failing. He said no, but that it might mean a drug like remicade would work better for me, and that we could just discuss it at my appointment and talk then about other options (like switching my 5-ASA). so, having said all that, here is what I am asking you, my brothers and sisters in IBD whose opinions I value:

1. any suggestions that may not involve switching to remicade? (I weigh 140lbs, so could I up Imuran?)
2. for those of you on remicade, how did you make the decision to go for it instead of surgery? I know that surgery is a big deal, but I also know that long-term remicade use is also a big deal. everyone around me thinks I am crazy for what I am about to say, but part of me is more comfortable with the notion of adjusting to surgery and the concept of life with a bag (or a pouch) than with remicade..... anyone else feel that way? if so, how did you decide to try remicade?

my fiance (who is a wonderful man, so this statement shouldn't imply otherwise), is concerned that I have started putting too much hope in the idea of surgery as a cure-all, and that given that I haven't even had the disease 10 months I should try to give my GI some more time to try some less extreme measures. I don't know what to think. I just know that some people have different fears with this disease, and for some reason the thought of life without a colon is easier for me than the notion of the unknowns of the biologics. lastly, I am 29 and hoping to have a baby next year, which is another reason to avoid remicade. ugh, I am so confused. thoughts?
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 1/4/2008 3:16 PM (GMT -7)   
Nothing like a brewing flare. Is your Imuran at the right therapeutic level? I don't know if/how surgery affects fertility but maybe someone else will chime in on that one. For my last pregnancy I stayed on prednisone pretty much the whole time and then it took a while to get off it - actually it took starting Remicade. We are done having kids but personally I wouldn't want to conceive while on it. I'm not nervous at all being on it myself but it hasn't been around long enough to really know how it could affect a baby - short or long-term. While I didn't like the prednisone side effects - and who does - I felt like it was safe to be on while pregnant.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/4/2008 3:22 PM (GMT -7)   
UCinNC, my decision was based pretty much on the fact that if I have a problem or change my mind I can stop the Remicade. Once my colon is gone, it's gone and there's no going back. I figure I'd have surgery and six months later someone would find a cure for UC.

I haven't had any bad effects from Remicade at all, and I've been on it for 23 months. Before the Remi, the best I'd been was 8-10 stools a day with blood at least three days a week, cramping and pain with the bleeding, and my diet was severely restricted.

I think the main concern most people have about Remi is the tiny chance of developing lymphoma. This risk has pretty much been found to be with Remi and Imuran or 6-MP taken together. I've gone off the Imuran at the suggestion of my GI, and am doing fine so far.

I was in flare for so long that it seemed like I'd never been healthy. My hope now is that Remicade will hold me until another drug comes along, and that pattern will continue so I never have to have surgery. I'm also past 50, and don't especially want to give up a year of my life to recuperate from surgery.

It's an individual decision for each of us, and there are some people who go straight to surgery without even trying meds. Whatever you decide, just be sure it's the right thing for you. Good luck, dear.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/4/2008 3:55 PM (GMT -7)   
Have you tried an ASA besides asacol? Sometimes it can cause more problems than it solves. I was switched to the older azulfadine and did better on it.

Also, I see you're on a probiotic. Perhaps upping your dose would help settle things out. I had a stomach bug a couple of days after Christmas and my gut was pretty rumbly and unhappy afterwards. I doubled my daily dose of Natren's Bifido Factor and it smoothed things right out.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 1/4/2008 4:53 PM (GMT -7)   
Sorry to read that you feel remission slipping away; hopefully that's not the case! I think any time we start to feel gurgling, etc., our panic response kicks in. I know mine does-- even though I've been able to get to remission several times with the steroids or 5ASAs. Try some deep breathing exercises when you start to obsess. Tell yourself that it could be some kind of bug, but you'll know better by the start of next week. Then think about giving yourself a treat of some kind in the meantime-- it's a kind of mood-changing process to help yourself feel less pressured about arriving at major decisions, too. Take care & hope you'll have a good weekend. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Pessimist
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 1/4/2008 6:41 PM (GMT -7)   

I am also thinking that surgery might be a better option than Remicade.  I just keep reading so many negative things about it, and I'm fairly certain that it has caused the persistent headache I have had.  That suggests to me that there is something not quite right about it.  Also, I have not seen much to indicate that it is helping me.   

My next infusion is in 9 days....I need to make a decision quickly.   


M-39, UC Diagnosed June 2007

Other stuff:  Migraines/headaches, high blood pressure, essential tremor

Previous Meds: Colazol (caused pancreatitis), antibiotics, Prednisone (several cycles 20mg/day)

Current Meds: Remicade beginning in Oct ‘07, various vitamins, Imitrex, Lortab, Lisinopril

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