In denial

Is there anyone else that has UC and is in denial like me.

I've had my share of bloody stools and urgency and accidents and have had two colonoscopy's, but I go in and they give me drugs, I take them and then I go into remission, last time in remission I stayed there for over 2 years and I never continued the medication.  Reason it came back this last time I was eating sweet corn and got the diareah so must of irritated it.  I've been told I have 23cm-of my lower colon that is affected.  Doc prescribed asacol 6 pills 2x/day plus canasa at night.  I also cannot get over how expensive these medications are.  I have to pay 15%, if I didn't it would be over $600.00 for one prescription.  I felt like 12 PILLS a day I just couldn't handle taking them the rest of my life so I did a little research and found a pill called Lialda-once a day pill but now just yesterday found out my insurance doesn't cover it, so I'm waiting for prior authorization and then would only have to take 4 1X/day which I could handle for preventative so I wouldn't have any more symptoms again.

I am wondering if there is anyone else out there that got UC after they quit smoking.  I swear that is where mine came from and I'm ready to start back up.

Currently in Remission---after just taking 1 Month of Asacol 6pills 2x/day and Canasa 1X/night

Not taking any meds as of current but am looking at taking Lialda if the prior authorization goes through.

Hi there,

and welcome to the forum.

How long do you have UC? When were you diagnosed?

I used to be in denial, but I reached the point when I found myself lying - most of all to myself. You can only go for so long in denial that you have a lifelong disease that is not necessarily life-threatening or life-shortening (complications aside), but it is a pain in the butt (pun intended) indeed. Of course I still don't like having UC (Who does?) and I get my famous "Why me? Why? Why?"-minutes, but the longer you have that disease, the more you get to come to realize that you better find ways to cope with it, because it won't go away.

And regarding smoking, when I was diagnosed at the age of 25, I already was a smoker for 7 years. Meaning that smoking hasn't kept the UC away from me. I did get flares everytime I tried to quit (which led in taking up smoking again) and since I quit for good (last summer), the flares come more often and are longer and worse. If I was to take up smoking today again - which is so not gonna happen ! - , I knew that it would kick me right into remission (it always did that), but it won't prevent future flares. And besides, I'd rather keep my lungs and sacrifice my colon if I really have to, because that part of me will always be sick.

So please consider staying smoke-free - it will only give you temporary relief and the risk of getting other diseases and cancer from smoking are so not worth it.

Scarlett

I go through this cycle too. Flare, get meds, get better, get cocky and believe I can do just fine without the meds & it was all just a bad dream...rinse and repeat.

I'm not sure we'd be human if we all just accepted the diagnosis without questioning or sometimes getting angry/sad/etc.

BigApple said...
I quit nicotine and a month later I was having constant diarrhea. Three months after quiting nicotine I as diagnosed with Pan UC. I've seen the Patch listed as a treatment option. My recent thought is that the nicotine acted as a stress reducer and suppressed the UC and it only showed as Irritable Bowel Syndrome.

I’d rather have UC then nicotine related cancer. I’m trying to work on relaxation/breathing to lower stress now.

Researchers have actually discovered that it's the carbon monoxide from smoking that can keep inflammation in the colon at bay...as usual though, what works for some doesn't necessarily work for all.

:)

     I was never in denial about my UC, but I did smoke, just a tad, years ago.  My GI doctor told me he finds a lot of former smokers in his practice who have developed UC.  It isn't worth going back to smoking though.  Who wants lung disease?  I have a friend who suffers terribly with COPD and was a former smoker.  I would rather have the bloody diarrhea than have to gulp for breath and carry an oxygen tank around with me.  She may have to have a lung transplant as her condition worsens.

     Like you, I stopped taking meds after reaching my first remission ten years ago.  Of course my UC came back two years later.  Now, I continue taking my meds but did cut down on the Colazal from nine a day to six a day.  I noticed I am losing my hair and I believe it is either from the extended length of time on the prednisone this past year or the 6MP. 

     If you are in remission, stay on your meds for UC but PLEASE don't go back to smoking.

I went into denial for almost ten years when I had a med free, and, other than a couple dozen bad IBS days spread out over that whole time period, symptom free, scope free, GI-doc free joyride during that time. It was a 'rational " denial because I was allergic to all the maintenance drugs available at the time anyway, and I told myself "if it ain't broke don't fix it." Still, had I not been in denial I would have done more research those years, taken probiotics, and wouldn't have touched the antibiotics (for other ailments) that apparently slipped me back into years of unending symptoms nowadays.

katkat -

In case probiotic doesn't revisit this thread, the hookworm is an alternative therapy. It is believed that in some of the less developed countries with fewer incidences of UC, there is an environmental factor, which could be some parasite that our hyper-hygiene culture kills off that prevents UC. I believe that probiotic gave it a try, but after a few months, decided that it wasn't working. Hopefully probiotic will come back around to give you the full scoop.

Were you dxed with UC before your c diff infection?  Have you had a c diff relapse, or were you able to get rid of the infection and then move on?  In retrospect, I had some minor UC symptoms for years, but I just thought I had an irritable bowel.  My symptoms were never enough to warrant medical attention.  Then I got a c diff infection out of the blue (without the prior use of antibiotics, or a hospitalization).  Since it was so stubborn in me, I endured several rounds of antibiotics, and they eventually did a c-scope and discovered my colitis.  To me, it was like the UC came out of nowhere after the c diff.  I guess the UC is easier to live with than a chronic c diff infection, but I wouldn't wish either on my worst enemy.