Looking for a bit of help and support

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bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 6/5/2008 6:24 PM (GMT -6)   
Back in February I was diagnosed with pancolitis after having a month straight of bloody and muscusy diarrhea. (All my life though I've had bloody diarrhea but never for a month straight, It was usually just a couple days at a time and then it would go away)

But yea, I was put on 8 asacol a day, 50mg of prednisone and the antibiotics ciproflux (I think thats what it was) and I forget the others name, But it tasted like metal when you left it in your mouth longer then two seconds. Nothings really improved pain and cramping wise but I've gone down from 30+ stools a day to 10-20. But there still really urgrent, If I got to go I only have about 5-30 seconds to make it to a bathroom it or will just spill out. I go in for another colonoscapy in two weeks and then my doctor is going to decide if I move on to remicade, Though on specialist I talked to said I can discuss surgery anytime with him. And I've been giving it alot of thought. But I would sort of like to get off the prednisone first cause I'm getting all the lovely side effects from it. I had moon face so badly I went for a eye appointment and they told me to go home cause he couldn't get the pressure of my eyes. And all the other great side effects, Dizzyness, Disorented (I can't even do basic math some days), Night sweats, Acne, A ton of body hair, Legs, Arms, Shoulders neck are all sore a good 12 hours of the day. Now I'm tapering down on the prednisone and on a weekly methotrexate (on week 5) But I feel it's just getting worse again, I'm down to 25mg of prednisone and I'm starting to get really sick again but I don't want to go back up cause the side effects just make life even crappier then what it is. My doctor told me if I was to get sick again to go back up, But another specialist said to keep going down and hope the methotrexate kicked in by the time I hit 5mg. So I think I'll just wait for the colonscapy and hopefully the Remicade works for it.

I also seen, http://www.lialda.com/ on tv and was wondering if I should ask my doctor about it? Is there anything else I could ask my doctor for to help maybe?

Also, Do any of you leak stool? I have to go and wipe about fifty times a day cause I leak so much.

The meds I'm on now are

Asacol 8x a day
Prednisone 25mg a day
Prozac 20mg a day

Think I should take calcium and a multi vitamin to?

Post Edited (bb224) : 6/5/2008 5:30:27 PM (GMT-6)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/5/2008 7:03 PM (GMT -6)   
Absolutely!! If you're on prednisone you most certainly need to take a supplement with Calcium and Vitamin D... I can't remember the amounts recommended, but someone should be able to step in and offer that.

I've never had much of a problem with leaking stool- I always attributed it to the fact that I've had UC since I was young and after so much time trying to hold everything in constantly, I've got some pretty strong sphincter/kegel muscles! Haha. But I know a lot of people do have this problem. Sometimes when I'm flaring though I will have mucous come out just when urinating and I'm not even bearing down to let anything out rectally at all, it just does.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 6/5/2008 7:07 PM (GMT -6)   
Hi there. Yeah, know exactly what you're going through. Thankfully I don't really have the leakage problem any longer, but I also have severe pancolitis. Have been in this flare now for just under 3 years. Like you, I and the GI managed to get BMs down from 30+ to somewhere between the 10-20 mark now. The urgency however has only dipped a bit.

The flare I am in is my own fault as I let it get too far out of control before visiting the GI.

The only medication that has ever REALLY helped were biologics. I have been in two trials and the current one is for a drug called Golimumab, which is similar to Remicade. Have had one dose already and its helped immensely.

As for asking your GI, go for it. Ask anything, even if u think it sounds dumb. If your GI doesn't answer your questions or is rude, get another one. There are plenty of them, and its worth shopping around for a really good one!

Hang in there mate.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 6/5/2008 8:47 PM (GMT -6)   

I'm going to pull a quincy, maybe you need to be on enemas with all the sx's you're describing--talk to your GI about taking them for your particular situation.  I know Rowasa really keeps my bleeding/mucus in check, really notice increase of sx's if I go too long without a dose.  BTW I often have "leakage" not much to say about that but AUUUUUUGGGGGHHHH!

P.S. Off/on pred user myself.  The question I've always pondered is why does your head hair fall out in mass quantities, but body hair grows in excess??????  Maybe it's one of "natures" little laughs on us.

P.P.S.  Take Calcium, 1200 mg day!

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/5/2008 8:59 PM (GMT -6)   
I definitely agree with BigLucy, you should be on rectal meds, makes a big difference as far as the urgency goes. You are getting the urgency because of the inflammation, that will improve once the inflammation decreases. Rectal meds such as rowasa (generic) work very well. If you haven't tried them before, it may take some getting used to, but if you stick with them, they help. You should also be on calcium as ediekristen suggested. Good Luck
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 6/6/2008 1:42 AM (GMT -6)   
I think the rectal meds are a good plan. Maybe the steroid foam or enemas would help with the leaky problem. At the least, it could help you get your pred dose down since you'd get a bit of steroid absorption systemically as well.

You can look up suggested calcium doses online but I'm pretty sure you want at least 1000 mg a day plus some vitamin D. Calcium citrate is the type I take. I've read that the other kinds are not as well digested by the body.

Your Asacol dose isn't at the high end of the range. You can take more than that safely, if you think the Asacol works for you. You could ask your doctor about that.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 6/6/2008 2:03 AM (GMT -6)   
Thanks for the tips, I started taking calcium magnesium with vitamin D today, The pills are 500mg each and the bottle says you can take up to three a day so I'll go with that. I see my doctor in a few days so I'll ask about the rectal pills. I just got a odd question to, Do any of you get alot of pain when you start doing physical activities? Even just walking around my house for a minute I'll be very sore. And do any of you experience back pain with this? I tend to get alot of pain in my sides and lower left back.
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