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My colon feels like someone has used sandpaper

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Ulcerative Colitis
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Posted 2/25/2009 10:25 PM (GMT 0)
Hi, My name is Gil and I'm from Montreal,Canada.  I have been diagnosed with Pancolitis in February 2008.  I have had many acute episodes where I had to use Prednisone.  I am having an acute episode right now and my stomach hurts like hell. I there anyone else that feels the same way.  I'[ve been taking 40mg of prednisone for the past 7 days and as of today I am taking 30mg for 7 days, then 20mg for 7 days etc...until the last week where I will only take 5mg. I am also taking 800mg of Asacol 3X a day. My specialist told me that if this doesn't work this time that he would most probably put me on a drug that is similar to very mild chimotheraphy. Does anyone taking this kind of meds? I am having a lot of difficulty in accepting this disease. 

Have a great day!

Taking daily: 800mg Asacol

During Crisis:  Prednisone, Vit. D and  2X 500mg Calcium

Posted 2/25/2009 10:37 PM (GMT 0)
Before I'd try a stronger drug, I would ask your doctor about upping your dose of Asacol (I take 12 400 mg pills each day, which is a lot more than you are taking) and about using a mesalamine (same ingredient that is in Asacol) enema. Using both of these seems to be pulling me out of my first flare without having to use prednisone. I used the Asacol alone for a week then added Rowasa (the enema), which made a huge difference immediately.
Posted 2/25/2009 11:04 PM (GMT 0)
I agree with fruitgirl. I take 3 400mg Asacol 3x a day along with rectal suppositories and I have been seeing improvement lately. Maybe you could try some kind of rectal medication if you don't see significant improvement. I haven't had to go on pred yet and I hope I don't have to for a long time. My last flare was very bad, I was losing tons of blood and had loads of cramping. I know how you feel. I think the thing that really helped heal me was the rectal medication because using Asacol alone didn't see to quite nip the problem in the bud. It helped but I was still seeing some blood. I also stopped eating corn syrup products and that seems to help in my personal situation. Goodluck finding a combination that works for you. I see a ton of people on this board that are on immunosupressants and various types of treatments and some see great improvement in their UC.

Posted 2/25/2009 11:07 PM (GMT 0)
Thank you fruitgirl for your reply and suggestions. This is my first tread and new at discussing my disease. Ive made a mistake, I am taking 800mg of Asacol 3 times a day. I will try the (can't believe I'm taking about this with a lady-I guess I'm not used to it yet) masalamine enema.

Again thank you for your reply, it is much appreciated.

Gil
Posted 2/25/2009 11:12 PM (GMT 0)
Thank you too sicklygirl.  Your comments and suggestions are much appreciated as well.  I think I will enjoy this site, talking with people like you, who understand me, already makes me feel better.

Thank you/Merci,

Gil

Posted 2/25/2009 11:16 PM (GMT 0)
You're welcome! Don't worry about being too graphic--talking about poop, enemas, etc. I've not been on here very long, but it quickly became obvious that nobody around here hesitates to be really frank about their symptoms and the medicines they are using.

And I agree, it is great to be able to talk to people who can really and truly understand what we go through. Having urgent diarrhea 15+ times a day sounds bad to anyone, but it's a totally different thing to really experience it.
Posted 2/26/2009 4:29 AM (GMT 0)
O, la-la-- the sandpaper feeling in colon! You definitely have my sympathy. I had to take Prednisone for a severe flare of left-sided UC that made it hurt that way when my gastro tried to scope it: aie!!!!!!!!!! Fiery sandpaper! Another thing you can do after you taper to 5 mg/daily-- stay on 2.5 mg/daily for a while longer. It's like a smaller bandaid to help your body readjust. It's very worthwhile to use rectal med in combo with Asacol, whether liquid retention enemas or foam. More time-consuming to self-administer than pills, but you'll get used to it & hopefully feel a lot better because of the enemas' topical effect. Best wishes! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 2/26/2009 1:30 PM (GMT 0)
I know all about that feeling. My entire colon feels like sandpaper since my colonoscopy on Feb. 6th. However, I was and am still in the middle of what they consider a moderately active flareup right now. I know this may sound weird but when mine gets it's worst, I have the worst stinging feeling in my rectal area, to the point of where it feels like a bladder infection instead. And for a good while I had been noticing that same stinging sensation in one spot in my side, and it turned out to be erythema, or redness, due to inflammation, why it stings like that I don't know but it is making my nerves shot. I am back on the enemas again to try and heal this up, the nurse practitioner at my gastro doctor's office has put me on lexapro for my nerves. I needed it two years ago. And thankfully she wrote me a 90 day supply prescription as well as a 30 day I could get filled locally until I receive the other.
Posted 2/26/2009 1:34 PM (GMT 0)
Hi and welcome to HW. Yeah, you get used to talking about your condition very quickly around here! :) We don't bat an eyelash with anything!

Are you referring to your actual stomach hurting or your colon? If it's your stomach, it can be from the prednisone. I was on a short course of pred for arthritis and the doc wanted to be sure I was taking something for my stomach (which I am). So I am guessing that pred can mess with your stomach lining.

The medication your doc is referring to is probably 6mp or Imuran. But I have to agree that you really should try rectal meds and upping your Asacol before resorting to 6mp/Imuran.
Posted 2/27/2009 12:24 AM (GMT 0)
Yes you're among friends here. There's nothing to be squeamish about around here. We've all gone through it ourselves so it helps to be thorough. If you've got bloody mucous or green poo, don't think you have to skirt around the wording. We've seen and heard it all. rolleyes
Posted 2/27/2009 1:05 AM (GMT 0)
I love this site-What a comfort to share ideas that may help someone else. I have had UC since approx 1985-Told I would have to remove colon within 10 years. That didn't happen, thank God. Have had multiple flare ups over the years. Most recent was 2 years ago and that was bad- Lost a lot of weight-Felt awful-Scared to go out-Scared to stay in-But things got better.

Followed Dr's diet recomendations and meds- Slowl got better

Now I take 3 750 mgs of Colazol 2x daily-down from 4 tabs 3x/day. Due for another Colonoscopy this June as an ongoing precaution.

Just hang in there everyone!
Posted 2/27/2009 2:12 AM (GMT 0)
Welcome, Gil. My son has left sided colitis and my daughter has pan colitis. I think the mild chemo drug would likely be 6-mp or azathioprine. Both my kids take one of those and are doing very well on them.

I too, would recommend a rectal med. (easy for me to say as I don't have IBD), but my son has had some success with them.

My kids also both take probiotics. Some favorites around here are Culturelle (the easiest to come by as it is sold over the counter in stores like Wal-mart, walgreen's etc. Nature's Way Primadophilus Reuteri, and the more expensive, but highly recommended VSL #3. iherb.com is where I order our supplements as they ship quickly, affordably and on ice and I think they ship outside the US.

Hope you get some relief soon. And don't worry about "potty talk", anything goes here!
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