had UC for 1 year and now surgery

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chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 8/5/2007 7:52 PM (GMT -6)   
I had a colonoscopy done on Friday.....last one done a year ago by a different doctor.  I was awake totally the entire time.....I remember the whole thing and was able to ask lots of questions as he went up.  The doctor said that my colon is "very angry".  It was very inflamed, bloody (perhaps from the biopsys???), thousands of red dots and tons of yellow pus.  It was awful.  He had a hard time even getting to my illieum because he said it was swollen.  So, I had a bad reaction to 6mp and imuran, been on predisone for a year, on 12 asacol a day and very opposed to remicade so they are thinking surgery.  This all has happened in just 1 year.  The surgeon on Friday said that I have a very aggressive form of colitis.  So, I am just waiting for the biopsys to confirm UC and not crohns, I guess.  The surgeon said that he would do the 3 step process for a j-pouch......I guess b/c I have been on prednisone for so long.  I am nervous b/c it is a big deal, relieved because I am so tired of fighting this.  I have tried homeopathic, med's, SCD diet, eliminated my job practically, eliminated stress and things are still bad.  I was blessed with 11 long weeks of total remission and things went totally haywire about 1 month ago and now I am looking at surgery.  I have read alot of posts that really confirm that surgery isn't so bad and a bag isn't so bad.  I just read posts, though, of people that stuggled for years so I worry that I am rushing into this.  Then, on the other hand, it also sounds like doctors do not rush into surgery......they only advise it to those that need it.  All I know is I feel like eventually I will have to go through this and I would rather do it at 40 than have a major surgery like this at 50,60,70,80.....  I also am one of those that has no interest in the bad effects of med's.  So many thoughts that go through your head......sometimes I just start crying and I thought I was so strong before all this.  I have no pain, I do bleed, have 3-10 bm's a day but the past 1-2 mths...they have been pure "d" so I have really focused on not getting dehydrated.  I sometimes think my symptoms aren't bad enough but I still can't seem to get under control.  I also wondered if the asacol is the culprit.  I was dx'd 7/30/06 with mild colitis and given 6 asacol per day.  3 weeks later, I was in the hospital with a severe flare.  So, I wonder if I got off asacol if the whole thing would go away.  Any advice would be so helpful.
 
thanks.
Pancolitis - July 2006
Medications:  Predisone - 0mg since 6/07, asacol - 12 tablets per day, protonix
Supplements:  Intra Max (multi), calcium, folic acid, 2 homepathic supplements


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/5/2007 9:04 PM (GMT -6)   
i think most people on here will tell you that they are much happier now, and that they wish they would have done it sooner, I sure wish i had, i wasted 8 years being sick and trying different things, before i fianlly said, this is crazy, and had the surgery.
The surgery itself, and the recovery isn't really fun, but even while recovering i felt better than i had in years, and now life is back to normal (well close anyway, lol) again!
I don't blame you for not wanting to try the different meds, i really didn't try alot of them, and when I decided to do this, my GI said, oh well why don't you try this and this and this, and I said, no i want it OUT.  My thought was,  not only from the side effects, but here i was gonna waste more time, and be sick longer, trying meds that might work, and then what if they quit working, or I could have this surgery that would work, and would "cure" me so it was an easy decision for me.  I would think that, at 40, you are pretty comfortable with yourself and your body, so the adjustment might not be that hard, and if you are having a j-pouch the bag will only be temporary, i chose the permanent bag, because i didn't want to worry about the problems that j-pouches can have, or the extra surgeries. 
Bottom line, you will feel much better and be happier after the surgery!
good luck!

JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 8/6/2007 3:13 PM (GMT -6)   
I responded to Sulfasalazine right away, was diagnosed while pregnant in 1998. After I delivered my son (now 8 yrs old) my GI switched me to Asacol. I had no problems with the Asacol at all. I no longer take meds for my UC, haven't flared since that first time back in 1998, recently had breast augmentation, and that sent me into my second flare but it was short lived (2 weeks long) only. I pop a few Asacol each day and I'm right as rain again.

My 8 year old son is a different story. He was diagnosed with UC at age 4. For about the first 2 years of his UC, he responded well to Sulfasalazine. After 2 years or so, the sulfasalazine quite working and actually made him worse. Subsequently we tried Asacol (knowing it's the same thing as sulfasalazine, but releases in the colon). We were so determined with it too, since I always responded well to it. But every time, every time, it made my son noticeably worse. We had to accept this and move on to the harsher meds. Which as it turns out, didn't work either. So he had colectomy 7/07, no j-pouch constructed yet. We're going to wait for improvements/advances in J-pouches in UC'ers to reduce/eliminate pouchitis, which can be chronic with UC patients. My son is quite happy with the ileostomy and doesn't want the other surgery... ever. Although we're sure he'll reconsider once puberty sets in).

But to respond to your question, yes, Asacol can make some people much worse.

Jsmom

chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 8/6/2007 4:26 PM (GMT -6)   
Wow - JsMom. When I hear children having this - wow!!! It is amazing! My daughter had scolisis surgery 2 years ago and I thought that was tough but this, I would imagine, is worse. It is so ongoing. I really commend the courage that it took for you to get your son through it and keep him positive.

Well, I plan to mention this to my doctor as an idea.....the asacol. I would guess that he will say that I have to have something for meds but I just wonder if the asacol makes it worse. Tempts me to want to just get off everything and see if my body goes haywire or actually fixes itself. I really have done nothing but get significantly worse since I was dx'd and started meds. The tough part of this whole thing is "everyone is different" and "everyday is different". That is the part of this UC that I do not like. Some days I go to bed feeling great and wake up feeling terrible (like the flu) and vise-versa and what works for one person may or may not work for someone else. It is almost programming me to not want to go to sleep.

Thanks for your feedback.......it helps alot to hear what others go through. If nothing else, reminds me that I am not alone with my circumstances.
Pancolitis - July 2006
Medications:  Predisone - 0mg since 6/07, asacol - 12 tablets per day, protonix
Supplements:  Intra Max (multi), calcium, folic acid, 2 homepathic supplements

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