Sorry for the long post, but it is typical for me.
Nothing is too personal at all to ask me...nothing bothers me. I just want to help other UC suffers learn more quickly about their disease than I had to. In fact, I was going 12+ times a day and at least 3 to 4 times a night, sometimes every hour on bad nights during my initial "flare" that never went away. I was in constant pain (3 on a scale of 1-10 with 10 being the worst) and suffered major sleep deprivation and lost all of my energy and nutrients due to constant diarrhea (over a year) --> became anemic. My blood work just got worse and worse as time went on...and the different meds/prescriptions just kept going up. On top of that, every BM got more and more painful...and always had the feeling of having to go and "random" urgency-->accidents...so that was the worst part of it for me. In fact, sitting on a riding mower to mow my lawn for 42 minutes would wipe me out. I felt like a 100 old person (at age 30!!!)..and I decided I couldn't continue living life that way. I was at a point where I was just existing on a couch watching TV and not living a "normal" life at all. After suffering a few "accidents" I stopped going places and began to close down to friends and family...and everything just got worse. At that point, everyone was now coming to my house to visit me. I felt being dead was better than living like that...and if surgery would help...I was all for it. Last year, I missed 2 weddings, 1 funeral, and a years worth of family gatherings around the holidays.
I would say my mental capabilities were only at 50 - 60% of normal and my energy levels were at 50% of normal during UC because it was so draining. I was not my normal self because of UC and because of the multiple drugs (negative side effects) I was taking too. That was hard to deal with also...knowing your taking these 20+ pills a day and they are killing you...and without any improvement.
In fact my GI in Akron said the same thing about the 5-7 BM/day when I mentioned I wanted surgery to him. He said "Surgery is not an improvement because you'll still have 5-7 BM a day!!!" I'm sure they would change their mind if they themselves suffered from the disease. My thinking was "Take these multiple pills a day for 40-50 years and see what happens to you...while feeling like crap...literally and figuratively!!!" Asacol only has an 8 week study and that is what it takes the FDA to say it is safe to take for the rest of your life....and there aren't any studies for taking other multiple drugs with it. What a joke. I was shocked at this is how the medical world operates. I'm an engineer and if we built buildings like that...nothing would match and I'm sure the buildings would fall apart in a short time, and we would just scab other pieces onto it to hold it up.
These GI "specialists" cannot pick up the "emotional/psychological" side of the disease by reading about UC in a medical book!!! Doctors feel great that they can give you multiple pills to prolong your life with UC but shudder to think that the drugs they are giving you may make you feel like crap and eventually kill you too...just more slowly. I think they need to put themselves in our shoes and live what they preach/prescribe.
Here's what the positives are about the surgery and why people and doctors who don't have the disease cannot understand what we go through.
1. I now can "control" when you need to go to the bathroom. No more urgency. These are the big ones!!! I currently have a temporary ileostomy so I can control when I need to empty the bag....about 5 times a day (usually when I need to pee anyway), not any times during the night...which is a million times better than no control and random 12+ BM times a day/night with UC and drugs!!! The temporary ileostomy is not a problem either, but it seems some people are freaked out about this part and refuse the surgery solely because of this. It really shouldn't be an issue at all. If this becomes permanent - if J-pouch fails (only 3-5% at the Cleveland Clinic) - I can easily live with the ileostomy. It took me a month to accept it and to find the right supplies and having a good system...never had a leak yet. I'm just glad to be rid of the defective colon, UC symptoms and drug side effects. With the J-pouch...you should be able to hold it for up to an hour before needing to go to the restroom.
2. I can sleep throughout the night without needing to wake up. No more sleep deprivation.
3. I can now travel without worrying about where the next bathroom is. I can travel 3 hours in a car easily now...I could barely make the 15 minute drive to work before...without fear/having an accident inside the car!!! I travel all the time due to work...and missed this all last year.
4. I don't think about UC anymore. It was on my mind 24/7 all of last year...it sucked.
5. The daily ritual of taking multiple pills throughout the day is now over. I only take Actonel for osteoporosis (2 pills once a month...on the 10th and 11th). This was my main reason for surgery. I hate taking drugs...I think they cause more issues and are worse than UC itself.
6. You can eat/drink everything again without worry of causing a flare. I love beer and fried things. I never deprived myself of bad/good foods while I had UC...since it all passed through me anyway. Plus, you cut out so much of the food pyramid, it might just look like a single brick out of that pyramid. Then, I'm sure the doctors would be happy to prescribe you some supplements to take to make up on the nutrient deficiencies.
7. Your immune system is no longer suppressed. I work in an office with 40 people in my section. Anyone who came in sick, I got it the next day...and I was very limited on what "cold medicines" I could take...so I just suffered through them, usually they lasted 3 days with the steroids I was on. So I'm now happy to have my immune system back and I take any cold medicines when needed...but now I don't get sick at the drop of a hat anymore.
8. I'm totally "cured" of UC. My colon is gone, so there is no chance of UC coming back. No yo-yo between flare and remission...even though I never experienced a remission. One thing UC websites will not tell you about UC but my GI doctor did. Even if you find the right "magical" food/drug/herbal combination to bring you into remission and you feel "normal," your colon cells on the cellular level are still inflamed...this is why your colon cancer risk goes up 32X a normal person 20 years after the initial UC diagnosis....whether you feel fine or not. So my thinking was...your never cured...just masking the symptoms with the drug route...so why take these drugs that ruin your otherwise healthy organs for a colon that will more than likely be removed 20 - 30 years down the road anyway. I wouldn't like these surgeries at age 50 or 60. I should do it now while I'm young and skip out on the years of drug use and preserve my other healthy organs. People have a hard time with this issue!!!
9. Colon cancer risk is eliminated. This was just a bonus in my mind and for the reason mentioned in #7.
10. I feel the same way as I did before getting UC...I cannot tell/feel that my colon is missing. The only thing that reminds me of it is the 10" scar on my belly and the bag when I lift up my shirt...otherwise I feel normal again. I just get thirsty more often. Sex life returned about a month after surgery...although still a little sore. People worry about this as well!!!
11. If my j-pouch fails or I get chronic pouchitis later on...I'll just go back to a permanent ileostomy. This would be the worst case scenario for the surgery route and my furthest from being normal. With the j-pouch I'm as close to normal as I'll ever be and I know I tried everything available to me. I have no regrets at all...and would still recommend it to anyone who was in a similar situation.
I remember reading about the surgery when I first got diagnosed and said...I hope I never have to do that. 3 months afterwards I was ready for it. That's how bad my UC was.
People must understand that once you have UC...your never going to be "normal" again...despite the warm fuzzy sounding websites you may have visited. You can only try to get as close to "normal" again. Living without a colon is not normal, but having to go to the bathroom 5-7 times a day (controlled) is wonderful compared to living with UC going 12+ times a day uncontrolled. Taking 20+ pills a day + their side effects, constantly worrying/watching what foods/drinks you can have is not "normal" either...especially if you have to take these drugs for the rest of your life 40+ years. Imuran and Remicade are terrible. My aunt is a pharmacist and said Remicade is classified as a chemotherapy drug...not for me. They give you Imuran if you have a kidney transplant so you don't reject it...not for me either...these were my next options with medicines. You'll just have to take drastic measures to restore your life to as close as normal as you can get.
For me, the benefits of surgery outweighed the risks of long term drug use!!!
I'm not going to lie, surgery did hurt. My 10" incision hurt for 2 weeks. The stuff they did on the inside hurt for 8-9 weeks. It was a much milder pain that only hurt when you touched the abdomen. But you know that the pain from UC is gone a week after surgery. I have a post of my surgery experience if you search for it on this website...or search my postings. It's very detailed and long...as often my posts are. I have surgery #2 scheduled in August to create the J-pouch and reverse the ileostomy. I was/will be off work for 8 weeks for both surgeries. I was in the hospital for 4 days. Surgery #1 cost $55,000, my insurance got it down to $18,000, and I only paid $630 out of pocket. Best money I ever spent.
Yes...being younger is in your husband's favor for the surgery. I was the perfect candidate and was negative for all tests for Crohn's (pill camera for upper GI and small intestine, colonoscopy with biopsy, blood tests). I was 31, no prior surgeries...the only negative was my year on prednisone 20-40 mg/day. Prednisone as with all steroids...same for asthma and allergy medicines will turn your internal organ walls into the consistency of butter during constant long term use---after 6 months. I wonder why this isn't listed on the drug fact sheet!!! They will not hold stitches or staples....this is why many people have 2 or 3 stage j-pouch surgery...and not necessarily due to the condition of their health...as they are often told. I had my colon removed during the first surgery and they stopped (they were going to do the j-pouch then but didn't). I stopped all meds that day...was tapered off prednisone a month later. Now my organs are healing and returning to normal so they can hold stitches and staples for my August surgery where the surgeon will make the j-pouch and may reverse the ileostomy.
Hope this helps. I'm open to all topics/issues and nothing bothers or upsets me and I don't hold anything back. I feel that I was lacking some key pieces to the puzzle when doing my surgery research as well as my research for UC in general. There's a lot of "watered down" sites/postings out there. I was on my computer day and night for a year religiously researching this stuff before surgery. Hopefully, I filled in a few missing pieces of the puzzle for you.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again
Aug. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"