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KSpace
Regular Member


Date Joined Jan 2008
Total Posts : 72
   Posted 1/9/2008 6:11 PM (GMT -7)   
Hello, I've recently been following this forum and am very happy with the support and honesty and freedom with which everyone shares their stories. I've had UC since I returned from a trip out of the country where, on my last day, I had the worst case of traveler's diarrhea ever. A few months afterwards, the symptoms began and was diagnosed in 3/2003. Flex sig exam showed 10 cm inflammation. Was initially treated with Mesalamine enemas, didn't work, put on Asacol, and Canasa. Can't seem to get a hold of the symptoms. My doc increased my Asacol to 6 tabs twice a day, and that made me go even more frequently. So now I'm on prednisone, (Cortenema) for the past week and that's it. So far, no change whatsoever. I think I feel better in the morning when I have solid BMs, but then throughout the day, back to the mush (sorry for the detail).

Anyways, I was just impressed that there are people that have the same issues that I do, down to the icky stuff. I'm glad I found this forum.

kspace

----------------------------------------------------------------------------
15 cm left sided colitis
currently on a trial of cortenemas only (past week)

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/9/2008 7:09 PM (GMT -7)   
Hey! Just wanted to say Welcome. And don't worry about details...I think we have heard it all! What dose of pred are you on? You are taking 12 Asacol? For how long total?
Tabitha (Tab)

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

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


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/9/2008 7:40 PM (GMT -7)   
Welcome Kspace! Yep, we all have the same issues -- so as Tab said details are no biggie for us! We are used to talking "poop!" :-) It's rough trying to find the right meds to get you into remission, and we all understand that too. Please feel free to vent here anytime, share a story, ask a question; whatever you need. The folks on this forum are knowledgeable and incredibly nice...a great support system! I don't know what I'd do without them. Again, a warm welcome to you.
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


KSpace
Regular Member


Date Joined Jan 2008
Total Posts : 72
   Posted 1/9/2008 8:39 PM (GMT -7)   
Thanks for the warm welcome. To answer your question Tab, I'm taking Hydrocortizone enemas 100mg/60ml once at night. Been taking them for about a week so far. I was taking 12 Asacol, but as soon as I started taking that many (6 tabs, BID), I starting having multiple (mucousy) BMs, urgency, frequency, etc. So my doctor decided that I'm probably not responding to mesalamine products, and didn't even want to try Rowasa for that reason. So I'm on a trial of these steroid enemas for the first time ever. It's funny, but I'm a little jittery and getting a little less sleep. I've got a lot more energy too. (Is this what the baseball players feel like when they do steroids?) So far, better than I was on 12 Asacol, but not much better. Guess I have to give it some time. Definitely don't want to stay on these too long. There's systemic absorption even with these enemas, and I know all too well the complications of long term steroids.

Looking into probiotics and diet after reading about it here, but I don't want to start just yet. Just don't want too many variables in play so soon.

Anyways, thanks for listening and look forward to contributing and learning from all.

KSpace
15 cm left sided colitis
currently on a trial of cortenemas, and that's all!
keeping my fingers crossed


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/9/2008 8:48 PM (GMT -7)   
Welcome to the family, KSpace. Your response to the Asacol sounds a lot like mine. I reacted the same way to Rowasa. My GI ended up changing me to Colazal, which I tolerate well.

Most of us here will tell you that steroids do make it hard to sleep. They make some people "foggy", others nervous. Me, I just got really cranky when I was on them. My husband called me his "attack wife."

Sometimes it just takes a while to find the right key to help you. Most doctors work pretty systematically through the available drugs, and hopefully you'll find your magic bullet soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/10/2008 4:54 AM (GMT -7)   
Hi and welcome :) I agree that maybe the mesalamines may not right for you. Like Judy suggested, maybe have your doc switch you to Colazal instead. I had the same reaction on Asacol as you, but mine just took longer to manifest itself. I switched to Colazal and I seem to tolerate that one a whole lot better. As for the steroid enemas.....I totally understand what you mean about the side effects! Only about 8mgs of steroid from the enema actually enters your blood, but in some it can be enough. I was on and off those puppies for a year before being thrown on 6mp and lucky me, now I'm on them again :( However, it does make my Uc feel much better. But give it time, sometimes symptoms can be a bit stubborn and patience is the key to this disease. We can't heal overnight though it would be nice huh?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
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JM
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/10/2008 6:48 AM (GMT -7)   
It is interesting that it showed up after a trip abroad. Within a month from returning from Germany, I started having symptoms and was diagnosed 3 months later (December) with UC. I stayed in Germany a month.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 1/10/2008 12:13 PM (GMT -7)   
Hi KSpace...welcome to the forum.

Were you actually diagnosed with UC or "colitis"...do you have a copy of the report?

Did the doc do stool samples to make sure you don't have any other beasties in there?

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


KSpace
Regular Member


Date Joined Jan 2008
Total Posts : 72
   Posted 1/10/2008 7:48 PM (GMT -7)   
Hey guys, thanks for the welcome and the support. Quincy, I do have ulcerative colitis. I actually wasn't initially tested for other GI bugs, but at this point (4 years later), it's a moot point. My biopsies have only showed chronic moderate active inflammatory cells. Putting all the clinical and diagnostic info together, pretty certain its' UC. (PS, I like your term "beasties" :)

Kspace
15 cm left sided colitis
currently on a trial of cortenemas, and that's all!
keeping my fingers crossed


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 1/10/2008 9:50 PM (GMT -7)   

KSpace..have you tried any 5ASA retention enemas such as Rowasa (or Salofalk if you're not in the US)?

Strange you call 15cm left sided..which would be incorrect (left-sided would be up to the splenic flexure or well past the sigmoid)...yours would be classified as ulcerative proctitis.

I sometimes call them bugaboos..but beasties devil skull eems to fit better...my generic term. Glad you liked it.

quincy scool


*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 1/10/2008 9:53:48 PM (GMT-7)

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