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ATTENTION MODS AND EXPERIENCED UC SUFFERERS...

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Ulcerative Colitis
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Posted 10/6/2010 10:29 AM (GMT 0)
NEED ADVICE:

 

  So since being diagnosed two wks a go with UC, I finally met again with my gi doctor since the colonoscopy.  Iasked a million questions and he said that I have a severe case of left sided uc.  I told him my symptoms have gotten worse not better, and he said that often times it take 2-4 weeks for the meds to start working .  He said that he is really throwing everything at me right now with short term usage of prednisone, asacol, and canasa suppositories. He said that he believes that this week will be the turning point for me. He wanted me to do some bloodwork to check counts and urine.  So after leaving his office two days ago, that day I went straight to my primary care physicians for bloodwork and a visit.  When I arrived he could see that I was in pain (he prescribed sulfazine ec 500mg tabs in addition to my normal meds).

  On the drive home I had explosive urgency to go to the bathroom.  Only blood had been coming out all day.  Every 5 minutes for the next for hours I had the urgency to go to the bathroom but only passed blood.  Finally, around 6pm I checked into the er. They took blood, blood pressure, chest, back and stomach xrays, and everything seemed to be normal except I was mildly dehydrated.  They offered me morphine for the pain, but dumbly I declined, but asked for prescription pain meds.  Earlier in the day, my gi said he didn't want to constipate me by giving me pain meds.  While at the er, I went to the bathroom 8 times in 3 hours.  The doctor said that even though I was bleeding, that It wasnt having much effect on my  body.

  Needless to say, I left the er and went home.  They gave me two jumbo white pills before I left and a prescription for vicodin 500mg once every 6 hrs as needed for pain.  When I got home, I was buzzed and my body felt relaxed and very soothed to say the least!  This was the first time that stomach gas or pain didn't bother me. 

  When I got my prescription in the morning, the vicodin hasn't ad any effect like what they gave me at the hospital.  I'm only taking 500mg every 6 hours but it feels like im not taking anything.  I only took two yesterday total, for this reason. 

  Anyways, I seem to be constipated since yesterday and having horrible pain in my right hip, inner thigh and side of stomach.  This pain is intense and new! 

 I know that im probably not constipated so quickly from only a couple vicodin, and I read that maybe the sulfazine ec tabs could be the culprit, therefore, I'm asking advice if I should just take some fiber with my foods ? (i certainly need all the meds) Maybe tke 2 vicodin every 6 hours for pain?

  Any help much appreciated!

 

Posted 10/6/2010 11:05 AM (GMT 0)
You poor thing!
You sure have experienced a lot of the worst aspects of UC in a short amount of time.

Sulfasalazine AND Asacol at the same time....? I think you're the first person I've heard of, doing that. If I were you, I'd check with the GI - (and if you don't think your GI has a handle on the whole thing, find a new one.)
Iwas on sulfasalazine prior to Asacol. Some people have sensitivity to the sulfa component, and if you google it (which you likely have by now) you'll see that normally it's recommended that one start sulfasal. with a small dose, sort of taper up into it, in case of this sensitivity and to de-sensitize.

You still haven't tried probiotics? They help me so much that I can't help but mention that repeatedly. (I know for some people they don't help, but they've been amazing for me.)

Fiber - So, I'll give you my complete pep talk, with the knowledge my fellow Mod, Red, is one of many who cannot tolerate it at all. For me it's a lifesaver - so, again, we need to each try to find what helps us.
My son's GI recommends either Metamucil or Benefiber. Whatever, get it without artificial sweeteners. For Metamucil, the capsules have less "other" ingredients. (I take the "Original" powder just because I'm used to it... there's a little sugar in it, but ho well, that's the least of my worries. I started my kid on the capsules when he was flaring last spring.)
Start it slowly - like one or two capsules a day for a week, then work up. I take two heaping spoons full - would be 12-14 of the capsules daily.

I was on a bunch of painkillers last spring when I had my hip replaced, and I never had constipation issues, probably because of the constant Metamucil.
My GI had recommended the fiber to me some 25 years ago with the words "so you never have to strain again" and it's been true - it has prevented that sort of involuntary straining with loose stools (feels like vomiting but from the bottom...?) ...I love the stuff.
Hope you feel better.....
Posted 10/6/2010 11:17 AM (GMT 0)
Be careful with food based fiber, it doesn't help to stop bleeding or inflammation, just helps with constipation and can actually hurt when your colon is very inflamed which yours is at this time. However Metamucil or Citrucel in a low dose probably won't hurt since it's very gentle.

If I were you I'd eat foods that require very little processing by your colon: chicken broth, meat protein. No caffeine so not to stimulate it more.

If your pain is worse a week after new meds it may be that you are intolerant of those meds as some people are OR you simply have a very inflamed colon. I (and others) have been in the condition you are and lived to tell of it. Keep drinking water, dehydration is a real concern. Chicken broth is miraculous, homemade if possible, low salt.

Enemas (mesalamine) were the thing that stopped my bleeding before I began diet modification. Not easy when things are bad down there but start slow and keep trying.

Good luck.
Posted 10/6/2010 11:18 AM (GMT 0)
Thanks for the info. Yeah, I feel old and arthritic! Luckily, I bumped into a friend the other day who told me that she had uc from 16-19 (shes 30 now), and he had a j pouch at 19, and said she has no regrets. Shes very successful and never misses activities or events with friends, due to complications.

My gi doc is supposed to be top notch and so is my primary care physician.
the gi doc didn't prescribe it, but 'i guess both doctors didn't see any adverse effects.
the drug checker online didn't show any probs. The good news was that the doctors said that all my blood levels looked as good or better than weeks ago when i was diagnosed. Even my blood pressure was reduced. Probably because I lost 20lbs?
Anyways, im going to start taking konsyl fiber or benefiber.
Posted 10/6/2010 11:28 AM (GMT 0)
how is it "gentler" fiber???
Posted 10/6/2010 1:13 PM (GMT 0)
I am allergic to many narcotic pain meds, if it has even a trace of codeine I end up vomiting, dizzy, cold sweats and on the verge of passing out. So many pain meds are out of the question for me, however, I can take Darvocet - or used to be able, not sure now - and after just one dose, I get constipated. Some people are just more sensitive to narcotic pain relievers then others.

I have heard of Sulfasazine being prescribed in addition to other 5-ASA's, not for Uc but for arthritis. Sulfasalazine is supposed to help ease the inflammation in the joints. It could be that you are suffering from peripheral arthritis. This is where the joints flare when your Uc flares. It is not damaging like the other forms of arthritis such as RA and it is common for people with an IBD to get it. I'm not sure why you have stomach pain though - pent up gas maybe?
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