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UC in Dallas
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 9/5/2007 2:45 PM (GMT -7)   
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.

jwogie
Regular Member


Date Joined Aug 2007
Total Posts : 35
   Posted 9/5/2007 8:23 PM (GMT -7)   
It seems like the Flagyl was working but you had some kind of allergic reaction to it. I had a reaction to Asacol -- gave me diarrhea, which was hard to figure out from the UC diarrhea. I am surprised the prednisone hasn't kicked in yet. I hope you find some relief soon. Doctors don't think UC has anything to do with diet and don't talk about supplements like fish oil or probiotics, but you may want to give those a try in addition to your dr-prescribed meds.
- 45 year old; female
- diagnosed with UC in Sept 1991
- appendectomy and 7 years remission
- almost constant flare-ups in past 5 years
- currently on 9 mg Entocort, fish oil--feeling good!
- Lialda started 8/21, 2 pills per day


UC in Dallas
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 9/5/2007 8:58 PM (GMT -7)   
Thnaks, I certainly will look into the supplements.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/5/2007 9:15 PM (GMT -7)   
Most definitely look into getting a good probiotic...if you have mostly D you may want to consider fibre supplements too, my GI told me to take fibre supplements daily for the rest of my life and I didn't even have D, just alot of frequency, it sure has helped taking the supplements, now I can even tolerate eating fibreous foods without getting all gassy and bloated.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


UC in Dallas
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 9/5/2007 11:41 PM (GMT -7)   
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? 

KitKatBaker
Veteran Member


Date Joined Feb 2005
Total Posts : 1146
   Posted 9/6/2007 3:25 AM (GMT -7)   
You need to get to the doctor/ER/whatever and get a chest x-ray done ASAP.  Prednisone can mask the symptoms of many ailments, and pneumonia is one of them.  I found this out the hard way myself.  I dropped the dose down on my prednisone one day, and by the afternoon I thought I was dying of a heart attack.  Severe chest pain, couldn't breathe.  It was awful.  There's a chance that is what has happened to you, so please have it checked out.  You don't want to let it get any worse.  I know it seems silly that you could have pneumonia and not know it, but you can.  Thanks to prednisone.
Katina
Co-Moderator Crohn's Disease Forum
Co-Moderator Ulcerative Colitis Forum
 
Asacol 6/day, Prevacid 2/day, Acidophilus Complex Probiotics, Green Tea Extract, Flax Oil
 
Help support Healingwell!!!
 


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 9/6/2007 5:18 AM (GMT -7)   
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.
 
 
Dx:  2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 9/6/2007 7:33 AM (GMT -7)   
A low grade fever and extreme fatigue are very common during a moderate to severe flare. Your digestion/absorption has been severely compromised, so you're not getting any nutrition... lack of energy is par for the course.

If I were you, I'd look for a new GI. Unfortunately, it's not at all unusual for a doctor to tell you diet has no effect on IBD. Neither will most of them discuss probiotics, omega-3s or any other kind of natural supplementation. There are a few gems out there that take a more wholistic approach. Lucky for you, you're in the Dallas metro area where you can probably find such a doctor. You may also want to consider a naturopath. I found a listing for one in Dallas:

Stacy Dunn, LAc, ND, MSOM
4230 Avondale Ave ste 100
Dallas,Texas 75219
(P) 214-520-8108
stacy@wellnaturalhealth.com
www.wellnaturalhealth.com
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


UC in Dallas
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 9/6/2007 7:59 AM (GMT -7)   

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." 


HNW
New Member


Date Joined Aug 2007
Total Posts : 16
   Posted 9/6/2007 10:47 AM (GMT -7)   
When I was in the hospital this summer they had me in Flagyl and Cipro. They also gave me an anti-nausea medicine because they made me very nauscious and I couldn't keep ANYTHING down. The Flagyl was given to me for an infection in my intestines. I had a fever ranging from 100-103 which they said was from my body trying to fight off the infection in my intestines. This might be why you have a fever because you have an infection somewhere.....I'd suggest going to another GI and getting a second opinion.
Diagnosed with Ulcerative Colitis: August 7, 2007 at age 24
 
Meds so far: Asacol 3 pills 3 times a day
                 Mesalamine Enemas every night
                 Prednisone for 10 days (ending Sept 2) Starting with 50mg
                 and tapering off by 10 every two days  (pcp prescribed for
                 joint pain)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 9/6/2007 11:46 AM (GMT -7)   
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/


Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 

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