J Pouch Surgery?

JCAW,
Wow, I'm totally floored that your doctor didn't know that your body could build up anti bodies going on and off Remicade. Thats just scary. Run far away from him/her. Sorry you had a reaction. I went off the Remicade because it just plain didn't work but when I went for my infusions I always would break out in hives despite taking the Benadryl. That stuff is pretty nasty in my opinion. Of course now Im so happy it didn't work but at the time I was devastated.

Just keep trying to find a good GI. I went thru several before I found one who helped me. Its so hard to find good doctors....especially a good GI doctor because they are all so different in their thinking. Not one I have been to was ever on the same page! Who can you trust? Sometimes you just have to trust your instincts. Just know that if your UC get bad enough and nothing is working, surgery can be a HUGE blessing like it was for me. Best wishes to you. :)

Notsosickly...don't let going to the bathroom 6-8 times a day stop you from surgery (if one day you need it). I was watching Dr. Oz a few weeks back and he said a person is supposed to pee that many times a day. So, when I pee, I usually poop. No big deal. Sometimes if I eat something extra spicy and don't take beano or fiber, it takes a bit longer or I go a little more, but otherwise it's no big deal. I know a lot of people get hung up on the number, but after 14 months I don't even count any more. There are some days that I think, wow, it seems like I've gone a lot today, but it's not too big of a deal. My most active time is the evening and sometimes I can go several times in a few hours (again it all depends on what I eat). I really don't go at night unless I have to pee. I don't wake up because I have to poop.

Yes, I am lucky, but I didn't wait until I was too sick or old to have a good result and I got a very experienced, skilled surgeon. So not all luck, I guess.

Good luck with all those who are contemplating this and do your research! It is so hard to hear about people who waited too long or who went to inexperienced surgeons.

6-8 times a day? - My research tells me the real number is upwards of 10.
Based on quality of life issues associated with UC, GI docs tell us that going more than 6 times a day is not acceptable, yet this surgery that is refereed to as a 'cure" has you going upwards of 10 times a day?
Wow.
I certainly sympathize with folks that have no choice and have to have their colons removed, but to have surgery electively seems insane.
The numbers just don't add up.

Disneynut66 said...
Notsosickly...don't let going to the bathroom 6-8 times a day stop you from surgery (if one day you need it). I was watching Dr. Oz a few weeks back and he said a person is supposed to pee that many times a day. So, when I pee, I usually poop. No big deal. Sometimes if I eat something extra spicy and don't take beano or fiber, it takes a bit longer or I go a little more, but otherwise it's no big deal. I know a lot of people get hung up on the number, but after 14 months I don't even count any more. There are some days that I think, wow, it seems like I've gone a lot today, but it's not too big of a deal. My most active time is the evening and sometimes I can go several times in a few hours (again it all depends on what I eat). I really don't go at night unless I have to pee. I don't wake up because I have to poop.

Yes, I am lucky, but I didn't wait until I was too sick or old to have a good result and I got a very experienced, skilled surgeon. So not all luck, I guess.

Good luck with all those who are contemplating this and do your research! It is so hard to hear about people who waited too long or who went to inexperienced surgeons.

I'm glad you posted this Dinsneynut. There seems to be a big misunderstanding about the amount of bm's after j pouch surgery. So I would like to elaborate for those reading this considering surgery. Yes, of course there is more frequency but there is NO urgency. You are able to hold it as long as you need to and go when it's covienent. No more mad dashes to the bathroom. And most important...you are NOT sick anymore. Your bm's are not like UC bm's. There is a huge difference between UC diarreah and j pouch consistency bm's. I had diarreah with UC. I do not have diarreah with my j pouch. If fact my stools are formed. Not like when I had a colon, but formed. I know it must be hard to understand but I thought I would try to clear up the misconceptions. And like Dinsneynut stated, I poop when I go pee. No extra bathroom trip required. In and out quick and easy.

And to add, most times I don't even know my pouch needs emptying. It's only when I go to the restroom with the intention of urinating, that my pouch empties too. I know the frequency confuses a lot of people, but the pouch empties as quickly as urinating without the urgency, pain, or prolonged sittings.

Sue

beatUC said...
Disneynut66, according to published studies 40% of people who get j-pouch surgery require additional gut surgeries.
That does not equate to a 90% satisfaction rate in my mind.
There seems to be a whole lot of confusion and half-truths when it comes to talking about surgery.
A;sp, I am on these "scary" meds, and you know what? -they work for me & they aren't scary at all!

Maybe it doesn't equate satisfaction to you, but according to the people who have had it done, even if they eventually had to have surgery, they are still satisfied. I also would love to know among those 40% who required additional surgeries how many of those had the initial surgery as emergency surgery or with an inexperienced surgeon? I know the complication rate when you have an emergency surgery or have an inexperienced surgeon is much higher. That is one reason I didn't wait until it would have been an emergency and also why I went to one of the best places in the U.S. to get my j-pouch done. Unfortunately in an emergency situation people don't have that option. That's why I would hope that everyone on their last available drug would at least have a surgery consult. Just to be prepared if there ever comes a time. I can't imagine what my life would have been like if I would have waited and had emergency surgery in my home town. It scares me to think about it.

I was on all the scary medications you are on. I ended up in the hospital twice due to Imuran. I was so sick I was begging God to take me. Then they switched me to 6MP...with that my ALT levels and AST levels became way too high and I had to go off them. I still have to see a specialist about my liver and the damage those drugs did to my liver. I am so happy for you that those medications work for you. I pray that you can continue to be on them and you don't suffer any short-term or long-term effects. I wasn't so lucky.

As for half-truths, I listened to my surgeon. She told me everything that could go wrong, but also told me what it would most likely be. Thankfully, it has all worked out.

This was from an article I read:

According to Dr. Remzi, 97% of patients said they would undergo the procedure again, and would recommend it to others. "This is a very important indication of quality of life--that they would do it all over again," he said.

I am sure Dr. Remzi has a study to back this up with.

In my 12 years of being active on jpouch boards, I have not met the 40% that has had additional surgery. Remzi's correct, over 90% of us are fine and out living life.

Sue

Christine, I totally understand needing to vent. Only the people who have actually had the surgery can understand this stuff and it's frustrating when others don't understand and try to tell us what it's like when they still have their colon. Just like people who don't have UC can't understand what it's like to go through that. My big, bad memories are me having to leave my daughter's play performance because I really wanted to see it and thought I could make it through. Had to go sit in the bathroom for much of the play, and was in so much pain, I couldn't enjoy it when I was there. Thankfully they had a DVD :). Also, going camping with a group of 24 people and thinking that I could go for a small hike. about halfway through I knew I wasn't going to make it. God bless my daughter for getting me as far away from the other families as possible and watching out for me as I sat among the bushes pooping. I think I always remembered to take wipes everywhere after that event. We have to remember how blessed we now are to enjoy all that life has to offer. People have commented on how great I look, too. And, I have so much more energy! Life is good!

I guess I am part of the 40% that needed additional surgeries. I've had four so far, but I had random complications that aren't common such as a stomach ulcer that perforated and a twisted bowel. I did not have an inexperienced surgeon. I went to the Cleveland Clinic. This shows that results are individual. I am also young. Only 22.

I do not regret my surgery decision. Even with four surgeries, my life is so much better than it was with UC. I graduate from nursing school in December, which would not have been possible without surgery. I am also getting married August of next year. Every time I go out with friends, take a walk outside, or go shopping at the mall I think to myself about how much this bag is a blessing to me.

A quote, make of it as you wish:

“By seeing the seed of failure in every success, we remain humble. By seeing the seed of success in every failure we remain hopeful.”

Let's not make this post into another anti surgery and pro surgery debate.

      Bostwis....I remember you!!!  I didn't realize you had surgery.  I am glad you are doing better and I wish you luck in your marriage and your chosen career of nursing.