Posted 4/6/2008 8:08 PM (GMT -6)
My answer is surgery for UC all the way...it really is the only cure.
It took me 3 months to accept that option from my original diagnosis...and sorry for the long post. If just recently diagnosed with UC, print this out and read it again in a few months after absorbing the shock of being recently diagnosed with a disease like this!!! I was a zombie for a while at the beginning and turned into one almost a year later.
I hope you find this informative if you or someone you know has UC.
My way of treating UC if I was a GI specialist:
Screw the medicines and the random Yo-Yo periods of being healthy and sick.
The standard treatment for UC should be prednisone (40-60 mg/day) and Asacol(4.8g/day)/Lialda for 4 to 6 months (I learned after reading a ton of websites on the matter). If this knocks you into remission...great! If no improvement...then recommend the j-pouch surgery and be cured. If those remaining people with UC are totally freaked out on the surgery option, only then, let them pick Remicade, Imuran and/or the other harsh drugs and let them kill themselves slowly because of their fear of surgery. Surgery shouldn't be the last option for GI specialists to recommend.
My rational for surgery:
Why sacrifice your other healthy organs/body for one lousy colon that you can live perfectly without. I'm a civil engineer and that was my point of view on this disease. If a window is broken in a building, fix it, don't turn up the furnace or air conditioner and ignore the problem...it's irrational thinking in my opinion and I cannot believe that this is the standard medical practice for this disease.
My experience with the 20+ pills a day:
I had my first of 3 (j-pouch) surgeries in Feb 2008 after one year of hoping the medicines would work. I refused to go the Remicade and Imuran route...because the risk of developing unusual cancers that lead to instant death, if found, wasn't for me. I was diagnosed with UC (pancolitis - whole colon involved) on 3-5-07 and was on prednisone (only 20 - 40 mg/day) and Asacol (4.8g/day) for a year that did nothing. It got my BM down from 20+/day to 12 (after 2 months into treatment), but no other improvement. It did however give me osteoporosis and I became anemic (at 8 months into treatment) - add Actonel and Iron Pills to the list.
My experience with a year of prednisone and what I learned/got from it:
If your on prednisone for more than 3 months, have your doctor order a bone density test!!! It's just 2 simple x-rays and completely painless. If you are losing bone mass, then they can give you Actonel (2 pills once a month) to hold your bone density where it is at, then you can discontinue it when finished with prednisone. Unfortunately for me (I'm a 31 year old male), I'll be on it the rest of my life due to my original GI doctor's negligence. Once you lose 33% of your bone mass, you have osteoporosis. You can lose as much as 10 to 20% within the first 3 months of being on prednisone...a fact they will not tell you on the drug sheet. GI doctors seem to be ignorant of this fact since several patients can go years before developing OP or breaking a bone years later. Once you lose bone mass, you cannot really get it back!!! The most I've seen is certain drugs...2-year daily PTH injections allowing you to gain up to 11% of bone mass after taking it for 2 years and that's only for specific bones of the body...risk from PTH is bone tumors/cancer. You lose that bone mass % all over your body. The worst thing is that it is totally painless, you find out you have it when you break something. I had only one symptom, and that was tooth sensitivity to cold things (3 months into treatment) never had it before and never had a cavity either. My GI couldn't figure that out.
In addition to the OP diagnoses 8 months after my UC diagnosis, I could feel myself slowly dying (sleeping 14+ hours a day and still tired and no energy) and not having any type of life...just existing in bed or on a couch watching TV. I could barely go to work (office job) and cook a meal at home. I missed over 40 days of work last year and nearly exhausted all of my leave time (that I accumulated over my 8 years). I work for the state government, otherwise, I'm sure I would have lost my job if I was in the private sector.
In addition, I didn't have any guidance from my Akron, OH GI specialist who was a retard and couldn't connect the dots. GI doctors will never tell you when you should be in remission while on a certain drug therapy.
I would say, if your on something and do not see any improvement in 3-4 months, try something else and/or another doctor. My GI doctor just said hum...I don't know why your colon isn't fully healed (6 months into the ordeal). He never mentioned the j-pouch surgery or any other drug treatments other than Imuran and Remicade...and that was after I told him I was changing doctors and going to the Cleveland Clinic to have the J-Pouch surgery. He also told me that he would be surprised if they would operate on me because my colon wasn't bad enough!!! Well...they did 4 months later!!! He also told me that he didn't want to tell me about surgery because of his past experience of people freaking out on him. I just think he liked milking my insurance for the monthly visits.
Anyway, I learned that any drug that suppresses your immune system, turns your internal organs into the consistency of butter and that they cannot hold staples or stitches during an operation. This is why there are so many 2 or 3 stage j-pouch surgeries...not necessarily due to the poor condition of the patient, as many are told. So, I say the long term effects of the drugs are worse than the disease itself. Also, taking steroids for asthma and for allergies will do the same thing to your internal organs. They will heal up again after discontinuing prednisone or other steroids, however osteoporosis is permanent.
My final decision for surgery:
The only thing that my original GI doctor said that had any meaning to me was...even if your in remission and feel "normal"...your colon is still inflamed on the cellular level even it it looks normal during a colonoscopy. This is why your colon cancer risk goes up to 32 times normal 20 years after the UC diagnosis. These cells are constantly inflamed they will have a high likelihood of mutating into cancer.
So my way of thinking was....if I somehow find the magic pills/herbs combo that puts me into remission, I'm not really cured and I have a high probability of losing my colon anyway 30 to 40 years down the road. Plus, I get to deal with random flares that last months at a time for the rest of my life. So why should I play a constant game of Russian Roulette with these drugs that have terrible permanent damage to my other currently healthy/normal organs and systems in my body if I'm going to lose my colon later in life anyway.
This is what made the surgery option a no brainer for me.
The results of surgery:
My only regret about the surgery was that I wish I did it 6 months earlier. No more being in constant pain, no more running to the bathroom, I can eat whatever I want, no more pills (other than Actonel), and I can travel again without fear of accidents. I do have a bag and it really is no big deal!!! I now can control when I need to go to the bathroom...how ironic. I go about 5 times a day...when I need to pee! I have my life back again and feel just like I did before being diagnosed. I cannot even tell my colon is gone and feel perfectly healthy again and I can sleep all through the night without bathroom interruptions. I'll have my ileo reversal surgery in 4 more months, and then, I'll really be back to normal. If the pouch acts up (chronic pouchitis), then I'll just get a permanent ileostomy. I had this ileostomy for 8 weeks now and would never go back to my days living with UC ever again. The pain from the surgery lasts about 6 weeks...but no where as bad as the constant pain I had from UC. In fact, I could tell the pain from UC was gone 5 days after surgery...just had pain from the incision and abdomen. Your Energy levels take about 6 months to come back to normal...but I'm much better than I was a year ago and have much more energy now.
Hope this helps all newly diagnosed UC people out there. I spent all of last year reading about the UC stuff and did a ton of research before making my decision for surgery. Hopefully, you'll get the surgery and be totally cured of UC faster than I did. Just do your research first, find a great GI doctor, hospital and surgeon who has done several of the J-Pouch operations.
I had/having my surgeries done at the Cleveland Clinic. My new/current GI doctor is wonderful - Dr. Shen and my surgeon is Dr. Remzi. They specifically specialize in J-Pouch pouchitis cases and that's why I picked them.
Take care and good luck battling and curing yourself of this terrible disease.