New UC/CD Problems

I've recently been diagnosed with UC/Chron's, he's not sure which one after the colonoscopy and biopsies.  So far he started me out with Colazal (9/day) and 10 days of Flagyl (3/day).  The bowel movements and blood immediately started improving, but the Flagyl (I think) gave me food-poisoning-like symptoms.  Didn't eat for 4 days and threw up everything that went down.  If I took a drink of water, 2 minutes later the exact amount of water, nothing else, came right back out.  I only lasted on the Flagyl about 3-4 days because of these symptoms.  If I took one it came right back up anyway.  Once I stopped the Flagyl my food-poisoning symptoms went away, appetite came back but the bowel symptoms returned as well.  A week later the doctor added a 2 month course of Prednisone tapering from 40mg/day (and the 9 Colazal/day).  After the second week I see absolutely no improvement.  In fact I feel worse, but I assume the pred is doing that.  My concern is that I've developed an extreme pain in my left shoulder and the middle of my left rib cage, like there are railroad spikes driven into them.  It usually comes on strongest in the late morning as I am getting up, and is practically unbearable. Especially if I take a deep breath or yawn, which intensifies the pain by 10.  After I take the prednisone in the morning the pain subsides and becomes much more tolerable, but still there.  I've also been running a fever above 99 for about 2 months now.  The last couple days it's been around 100-102.  I called my GI with these concerns and 2 days later his nurse called back and said my symptoms are unrelated and that I should see my primary care physician.  I haven't been sick in 10 years and now that the IBD has come up it's one thing after another and I find it very hard to believe it's not related.  On top of that, the GI gave me basically no information on the disease or what to expect.  He just said it's an incurable disease that is managed with medicine and that most people live completely normal lives, which after reading around here seems very sugar-coated.  He's also given me no instructions about diet or supplements which I see a lot of people here talking about.  Basically I'm not impressed with my experience so far with this doctor and I am wondering if I should see a different GI or is this about normal? 

Also, is there any reason the Flagyl might have worked so well so fast on the bowel problems and once I stopped taking it they returned immediately?  I don't think I could have taken it any longer because of the constant vomiting and losing 12 pounds in 4 days, but it seems like for the time I took it the bowel problems responded very well.

Thnaks, I certainly will look into the supplements.

Thanks, I will definitely take the fibre, as now I'm going to the restroom more than 20 times a day.  Hopefully with the fibre and probiotics along with the Rx meds I'll get back down to a more manageable schedule.  Are all fibre supplements the same?  I know some can be mixed with water or juice, some are pills and some are chewables.  Any difference between them or is any one kind preferred for UC/CD? 

Also, is the fever a normal part of the disease when it's flaring?  My symptoms started about 2 months ago and I've had a fever just about the entire time since then, anywhere from 99 -102.  I'm so exhausted I can barely even do simple things around the house like laundry or dishes, let alone leave the house for anything.  In 2 months I've been to the doctor 4 times and tried to work 3 days and that's about the extent of my activities outside my home.  99.9% of the time I spend laying in bed or on the couch, only getting up for bathroom trips.  I know fatigue is common but is it usually to this extent? 

I would see another doctor as soon as you can, a fever for that long is not normal.  I did get a fever once for a 24 hour period which ending up to be the start of a flare.

Thanks for the link princesa, I looked up that website and like the idea and principles behind the natural approach.  I think I'll also be on the lookout for another GI, if nothing else but to get a second opinion on what the first one has done and maybe get some better information, which I've received very little so far besides "ok you have this, take this." 

UC in Dallas said...

Thanks for the link princesa, I looked up that website and like the idea and principles behind the natural approach.  I think I'll also be on the lookout for another GI, if nothing else but to get a second opinion on what the first one has done and maybe get some better information, which I've received very little so far besides "ok you have this, take this." 

I believe I'm on my seventh gastro doc since '99 and have yet to find one who takes a wholistic, positive approach to treatment, but Arkansas is definitely behind the times in everything. I've considered traveling to Dallas for treatment, but so far, I've been able to control my disease and remain in remission for several years with only minor blips.

I still vividly remember my first doc's words when I was handed my diagnosis (which is now in question): "You have a chronic disease. You will never be well. You will stay on this medication (asacol) until you get sick enough to have your colon removed." Nice, huh?

If you like what you saw at the naturopath's site and are interested in learning all you can about alternative treatment options, I'd highly recommend "Listen to Your Gut" by Jini Patel Thompson. It's just been revised and has twice as much info as the original version. It's an invaluable resource written by a fellow IBD sufferer.

http://www.crohnsalternative.com/