44 chronic Pan U.C. for 6 years continual, night bm's: question about symptoms

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healinggirl
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 8/29/2008 11:34 PM (GMT -6)   
Hi,
I was diagnosed with Chronic Pan Ulcerative Colitis in February 2002, and began having night bm's in May of that year.  Ever since the diagnosis, I have had diarrhea/very loose bm's, and the extreme urgency to go, began having accidents in public around June of 2002 which have not subsided since, and have developed the urge to go with not much coming out except with straining and sometimes not even then within the last 2 years.  This particular symptom has worsened during the last 2 weeks, and I am concerned about it.  I have never taken the Asacol the doc first prescribed back in 2002 at my inital diagnosis due to fears of the medication (i.e. never taken anything much other in my life than aspirin, tylenol, or antibiotics) and its possible side effects.  I've just tried to deal with it via lifestyle changes, diet, etc.  I did try Immodium once - along with some expensive 'natural' cure called 'Molocure' which did nothing.  The Immodium they tell you to take along with it actually  put me into what seemed like toxic megacolon - my ankles swelled up, I had 104 fever, and I was stopped up, having bad accidents on the bed.  I only took 2 of those pills and then obviously stopped.  I've only been to the doctor about my Ulcerative Colitis the first time I was diagnosed in February 2002, and once again in 2006, as I haven't had insurance consistently.  The doctor again tried prescribing Asacol, but I still didn't want to take it.  I tried to pin him down to an explanation as to whether or not Asacol (or other U.C. treatments) could actually prevent colon cancer, or whether it would simply mask/reduce the symptoms. I am reluctant to have a colonoscopy, which I know I need.  Does anyone know if a virtual colonoscopy would do me any good, I mean can they see 'things' like strictures, and polyps?  I don't have insurance, but I am going to apply for Medi-Cal and see if I can be seen on the basis of presumptive elligibility.  I have to stay well and strong to care for my children.  I am a single Mother, and there is no Father in the picture at all for my youngest.  My bigger child has a wonderful Dad who she sees part time.  I have been reading up and I am worried that I might have a stricture - does that sound like what it could be?  My main symptoms are incontinence, extreme urge to go (tenesmus), and not much coming out except sometimes when the urge is very strong and it all just spews out at once.  Sometimes I will go and just a little comes out, it feels like at my rectum something is stopping it...like the air has to squeeze past something to escape.  Does anyone else have this too?  Thank you so much.  I am scheduling a free clinic visit to a general physician tomorrow and hopefully they can refer me to a gastroenterology also for free.  God bless you!  Taylor

ANTIGUA9
New Member


Date Joined Aug 2008
Total Posts : 16
   Posted 8/30/2008 12:06 AM (GMT -6)   
I'm so sorry for your situation. I know we all have had to compromise our lifestyle in one way or another with this disease, but my heart just goes out to you as a single mom and all. I'm trying to deal with this disease WITH insurance AND being able to be a stay at home mom and it's difficult. So I can't imagine the stress you must feel. Anyway, I think that feeling like not everything is "coming out" is a common symptom of UC. At least from what I've read. I have that sometimes. Sometimes its worse than others like during a flare that is getting worse. It might be the inflammation that seems especially bad at the rectum when you have to go so much even if there isn't much coming out. Everything just gets sorta swollen at that end.

hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 8/30/2008 12:16 AM (GMT -6)   
i understand not wanting to take the asacol. i also never took anything regularly and it took quite a big headache to get me to take a tylenol.
but just like you said, you need to stay well and at this point you are not well.

if your GI would still honor the old prescription s/he wrote, you can apply for patient assistance program to get your asacol for free. i have been getting mine for free thru the manufacturer (i believe it's proctor & gamble) for over a year since i don't have medical insurance either.

if you can't get a referral to a GI for free, at least try to contact the original doctor and see if he's willing to honor the Rx. when you apply for the free asacol you have to fill out a form and then the GI has to fill out part of the form and sign the Rx part.

the symptoms you are describing were normal for me while i was flaring. i didn't have a stricture.

asacol will not cure UC but it helps some of us to keep symptoms at bay.
it also may help prevent colon cancer by keeping inflammation down.
because you have let your disease go untreated for so many years, and it sounds like you have been flaring the whole time, you should really try to get a colonoscopy.

i know it is difficult to accept the diagnosis of a chronic illness and life long meds. but please consider taking it more seriously and getting yourself well. it is such a blessing to start feeling well again.

welcome to healingwell and i hope you are able to get in a see a doctor soon.
29, happily married, stay at home mom to 2.5 year old son. due to have another boy 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.

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