Any suggestions for my UC flare

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tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 2/2/2008 8:24 PM (GMT -6)   
I'm retired, thus I can rest when tired due to my UC. But last Feb 07, I served on Jury eight hrs/day for five days, and could not rest or relax. (I was on Asacol 6/day since 2005) Within month of serving on jury, I was very sick with flu-like symptoms, bedridden, low grade fever <101. My GP gave me antibiotic IM and 60mg Pred for six days. With no improvement, he put me on 20mg pred, cipro, and flagyl and referred me to my GI. My stool culture was neg.

GI did scope, hospitalization for four days in Apr 07 and continued pred w/o the antibiotics. He did increase my Pred to 30 mg. I continued to stay in flare, and in fact got worse; and in July I was placed on Imuran with bad reaction. I found a new GI in a new city and in Oct 07 I was hospitalized for 11 days for c.diff. and rehydration, colon rest, reduction of pred. from 30 to 15 mg.

GI wants me off Pred. with my encouragement and approval. I am also on Asacol 12 /day. I take fish oil, CA, MV. I see my GI again in 3 weeks.

Current symptoms: I have now been able to taper the Pred to 2.5 mg and feel terrible with body aches, no fever, very tired and limp, return of asthma using albuterol. Stools are liquid (I think they are like grits but dissolve in toilet water), urgency, incontinence, diarrhea no constipation, blood every day but very small amt, I go to john around the clock thus sleep is restless, I have 10-15 stools in 24 hr period. I also have nausea and periodic loss of appetite. My husband is so supportive and helps me - never complains. I am so thankful for him. Anyway, I have to take Tylenol 1000mg every 6 hrs to relieve my flu-like symptoms, just to get through every day. I also take chlorotrimeton (OTC) for sinus drainage and Imodium 8/day - I don't think it is working so I have decided not to take imodium anymore.

I think I will probably have to have colon removed and I am resolved to this, but I do want to get off the prednisone first. Tomorrow I will take 3 mg instead of the 2.5, and I will feel so much better! Why didn't the doctors tell me it would be so hard to get off this stuff? Or could these symptoms be UC??

Questions: I have read that some people take enemas and suppositories. Would this help in my situation? I don't know. My life is so wrapped up with my colon, I can't think straight. Right before I went to hosp in Oct (I did not know I had c.diff until I was hosp - what a surprise for everybody), I called all my RN friends and my health coach (insurance) for judgment. I find that when so sick, one loses one's judgment. Any advice from anyone? Also, does anyone take Metameucil? What exactly does Metameucil do? One more thing: could this amt of Tylenol hurt my liver? Thanks for any input, comments, suggestions.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/2/2008 8:33 PM (GMT -6)   
Hi and Welcome! Sorry you are having a tough time. I'll answer the questions I can....Yes it can be hard to get off prednisone. I became dependent and went on Imuran (obviously not an option for you). There is also 6mp which is similar to Imuran.

Has Remicade been suggested to you? Quincy will be on soon to tell you about the different suppositories and enemas.

Fiber...fiber is definitely good to firm things up. I take a fiber supplement daily. Do you take any probiotics? Those put good bacteria in our guts.

Tylenol is a-ok for UC but make sure you avoid ibuprofen.

You were taking 8 Imodium a day?! How long were you doing that?
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 2/2/2008 9:21 PM (GMT -6)   
Thanks, Tabitha!

My GI started me on Imodiom in mid-Dec. Said I could take as much as 8/day. I will tell him in three wks that I do not think it is working. That might tell him something about my system.
My GI also mentioned Remicade but he wants to get off Pred first. (Perhaps because of my hx of c. diff???)

I haven't decided whether or not to take Remicade. After my bad experience with Imuran and the dangers of these high powered drugs, I may not take any more drugs but just have colon removed. It is a decision I will make once and if I can get off this pred. I am not refusing the powerful drugs, I am just not sure at this point.

My GI does not want me to take probiotics. So I have not. I may try Metameucil now that I am off Imodium.

After the Imuran, I was told my liver enzymes were high. That is why I wonder about Tylenol. I think Ibuprofen started my UC in 2003. I learned my lesson there. Can't take aspirin.

I am very thankful that I am retired and do not have to work. I don't know how young people manage with this disease. I would have to be on disablilty.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/2/2008 10:01 PM (GMT -6)   
BEFORE you consider getting your colon removed, opt for Humira or Remicade...also, have you tried probiotics on a daily basis, even when not flaring they're a good thing to take and have benefitted many IBDers...if you're severe enough check into one called VSL3, research has been done on it for IBDers with great results for the majority going into remission and the rest noting at least some improvements.

Ditto on the fibre supplementation, myGI told me to take it daily for the rest of my life, also flaring or not.

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


jujub
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Date Joined Mar 2003
Total Posts : 10407
   Posted 2/3/2008 8:16 AM (GMT -6)   

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Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/3/2008 8:58 AM (GMT -6)   
tkctwbd, do you know how much of your colon is involved?
 
There are a number of things to consider before deciding on surgery:
  1. Have you ever tried rectal meds? Mesalamine or cortisone enemas can help with the proctitis. Oral meds don't always make it all the way to the rectum.
  2. Have you tried any other "first-line" drugs? Balsalazide (Colazal) has worked for quite a few of us who didn't respond well to Asacol.
  3. Probiotics are a great idea, I can't imagine why your GI would tell you not to take them. Most UC-ers do take a probiotic daily, and especially when taking any antibiotics.
  4. Once your fever is conquered, you might look into Remicade or Humira. Remicade has been around long enough that you can find a lot of discussion of it on this forum if you doa search.
I have to tell you, the thought of someone with UC taking 8 Imodium a day makes me shudder. Usually, we're told to avoid Imodium because it slows the motility of the bowel and can lead to toxic megacolon, which required emergency colectomy and can be fatal. Sometimes our docs will okay 1 - 3 a day, but 8 is a lot.
 
Finally, be wary of people promising "cures." At this time, the only cure known is surgery, although most of us never have to go to that extreme.
 
Welcome to the forum. I'm sorry you're having such a bad flare, and hope you'll find support here and perhaps some information to help you.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 2/3/2008 12:42 PM (GMT -6)   
Thanks everyone for input. I really appreciate your support and suggestions. It is lonely going through this alone. No one I know has this disease as I live is small town isolated in mtns. All IBD docs are two hrs away from me. There is one GI doc where I live but he dx me IBS even though the pathology report from scope indicated otherwise!! I will never go to him again. So I have to travel.

I stopped Imodium last night, and this morning (midnight to noon) I have had six stools - three with LARGE amt of floating pile (like grits). Usually I have ~six stools in same time period but the stool is pile that goes to bottom and I never can tell the amt because the toilet water is cloudy (pile dissolves in water). So the change is that my stools are now floating and I seem to have a larger amt of stool. Interesting! I did have some pain with evacuating which I did not have on the Imodium.

Judilyn, re: megacolon. While hospitalized in Oct, the team of GI docs did two scopes and x-ray of colon. Not having megacolon at the time might be why my doc felt comfortable putting me on the Imodium. He said to start with 4/day but no more than 8. What do you think?

Re Metamucil. I researched this several months ago via Internet. Found out that drugs and supplements should not be taken with Metamucil. The Metamucil reduces the effects of the meds and supplementation. Is this true?? I plan to start Metamucil today in another hour on empty stomach. I hope I see results immediately. Wouldn't that be great?

When first dx, I had colitis in the procto area ie proctitis. The Asacol worked well. Then after serving on jury which allowed my system to run down, I got this current flare and GI doc said the colitis covered three fourths of my colon. Early in my disease, I took proctofoam but I have never tried any other rectal meds. I have seen these treatments mentioned and I wonder if they would be appropriate for me. I have rectal pressure and I wonder if rectal medicines would help with that. I agree that it is worth a try, but I have never had an MD to suggest these treatments and I thought that odd. Perhaps they would not work for me because my colon is so inflamed.

The only PO meds I have taken are Asacol, prednisone, and thirty days worth of Imuran (and I wonder if I had c. diff when I was given Imuran). Also Imodium for past thirty days. Oh, I have tried several herbs and supplements.

No, I have not tried any "first-line" drugs? Balsalazide (Colazal). It seems that it takes about three months to try a treatment, then two months to recover, then another two months to decide on another treatment. It just takes patience to find out which med is best. I know that Pred is NOT for me. Imuran seemed to poison me. And now I am having trouble getting off Pred so the GI wants to see me in three wks. Don't know what he will suggest but I am so thankful that the team of GIs agree with me: get off the prednisone. This past yr has been a waste!! I'm back where I started after serving jury.

Re Probiotics. Yes! I have heard about and researched VSL#3. I know that there are clinical trials ongoing for UC sufferers to try VSL#3. My doc is not against probiotics, but he says not yet. I have a yogurt maker and can make my own VSL#3 when time comes. I am just waiting.

All these meds 6mp, colazal, etc, etc, etc are so confusing to me. I google each one as I research but never can keep them all straight. But I know that some of these drugs are quite powerful in that they can cause cancer, and they can damage pancreas and liver. What if they don't work after damaging my organs. I have a lot of thinking and praying to do about this. As my cousin said a while back, once the colon is out, I can't put it back. So I am taking one step at a time. Right now, I have decided to stop imodium and try Metamucil. Hopefully I will have some good news for GI when I see him this month.

Today I feel really good because I increased the Pred this morning by one mg!!!! Yesterday was terrible, terrible because I am trying to reduce to 2.5 mg. and my body does not like it. So when I have work to do ie go to town, I take an extra mg to get through that day. I have not told my GI this, but the Internet says that is one way to withdraw. Many doctors do not like for you to research over Internet. But I want to know about these things.

I will let you know how the Metamucil goes, and please correct or give your impressions on my thinking. I have no one else to ask. And I do think for myself because these are my decisions to make.

Thank you all again!
TK
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