to be honest im scared to get the j-pouch !!!

so my x-ray went welll and i can get the  j-pouch but my rectum needs to be stretched out and if and when i get the surgery my sergon will do it when im under. but to my fear before i had my colon removed  i was so excited and didnt think it would be hard to adjust to living with an ileostomy bag for a while. but i found out unexpecdectly how i would feel and now im scared to know the after affects about having the j-pouch like wondering if it will be another emotional adjusment or anything else.  

waitt i had a total collectomy dont they leave a little pice of your rectum???? how long is the adjustment normally ?
i sometimes have mucus come out of my butt so is it just coming out of my small intestine???

Jackie...I had a total collectomy and I was left with portion of my rectum. My small intestine is hooked up to the rectum. I did have a little adjustment but it was better than before the collectomy and better than the iliostomy bag I had for a year. Good luck I think you will be happy when all is said and done.


Bless you, Amy

My rectum was removed totally.

You can take your time and think about what you want to do. There will be an adjustment period that can get pretty crazy but it all calms down after awhile. I adjusted very quickly to my J pouch so I was very fortunate not to have any issues. It really varies from person to person. For me I just knew I wanted to give the j pouch a try because I had a horrible, painful time with my ileo.

My surgeon removed the rectum during my second surgery when he was making the j-pouch. Since you've already had your j-pouch made, I would assume yours was also removed. Are you sure that's what your surgeon meant you have to stretch out? How odd.

I know exactly what you mean about feeling scared though. When I first had my bag I was so nervous about getting the j-pouch because I was finally healthy and happy and I didn't want to mess with that. But it's been about a month since my takedown and it has been waaay easier for me to adjust to the j-pouch than it was to having an ileostomy. Physically AND emotionally. By the time I had the takedown my ostomy was driving me crazy.

I'm not sure I understand your understanding so I'll just explain my 2-step surgery.

In the first surgery the entire colon and rectum are removed leaving just 1-2cm of rectal tissue. The next part of the surgery is having 9-12 inches of small intestine pulled down and the surgeon makes the jpouch with that small amount of intestine. Once completed the new jpouch is attached to the 1-2cm of rectal cuff which is at the anus. The jpouch in essence becomes a "false" rectum.

Nutrients are absorbed in the terminal ileum of the small intestine. The colon and rectum never did absorb nutrients (with exception of Vitamin K in the colon) so therefore it's very easy to live a full life, both actively and nutritionally, without a colon or rectum. The colon's biggest job is removing water from waste. After some time, your new jpouch will learn how to do that.

Sue

I had my jpouch surgery 11 years ago. Yes, I was scared but I also had unbelievable faith in my surgeon and my outcome. I was very patient of the recovery process and remembered small bits of improvement. I have never regretted my decision, my life has been very active and full post surgery.

Sue

Jackie, I sent you a message to your email earlier today on this topic.

I am supposed to have my imaging done in six weeks and then I'm free to have takedown surgery as long as that looks good. I will be honest, I am counting down and can't wait. It's mostly because this new stoma has been such a challenge to deal with. I'm glad my first stoma was an end loop and a nice one because it has given me peace of mind knowing that I could live a very nice life with an end ileo if I ever need to do so. I am a little nervous about what the initial recovery period will be like with the j-pouch. How often will I need the bathroom in the beginning and things like that. I keep reminding myself that the satisfaction rate with the surgery in the mid 90% range and those are great numbers! I have an amazing surgery team and trust my surgeon's experience. If he didn't think it would work out well for me, he wouldn't be willing to do it. Also, to be blunt....the idea of not having to mess with pouch changes, emptying, etc is super appealing to me right now. I don't mean that to offend anyone who has a permanent ostomy, but it's just where I am mentally right now.

Either way though, you can take some time to think about what you want to do. My surgeon told me he has had some patient wait a few extra months or even a couple of years to have the reversal done because they weren't sure or they just needed to wait for a more convenient time in their lives. You have to give yourself a chance to be comfortable with your decision, whatever it is you decide to do.

i am so overwhekmed right now i got some info. about the j-pouch is a 50 -50 chance of getting pregnat or not however you wanna look at it. i did some resarch on it and to me it seems your chances are better with an ostomy depending on your body and i have been on birth controll for 5years + 3 i got an implanan( birth control implant in my arm) and i know having that for a while lower your chances some huh

Hmm, that sounds a bit off to me as well. Either way you've already got a j-pouch now, you're just not using it, right? So at this point your chances of getting pregnant are the same whether or not you stick with your ostomy or have your takedown (if this sounds wrong to anyone please let me know).

My surgeon did tell me that after these surgeries it might be harder to conceive but I don't think it's 50/50.

OK, I did a little digging and here is a statement from the American College of Colorectal surgeons that gives 26% infertility as a figure, http://www.fascrs.org/physicians/education/core_subjects/2008/ulcerative_colitis/

The 50% figure comes from this study http://gut.bmj.com/content/55/11/1575.abstract, which is in a reputable journal. It is a meta-study, which means a study of other studies (8 in this case).

A few things to be aware of:

1) Women with UC already have a 15% rate of infertility. It's not mentioned in the abstract, but it seems very logical that the infertility rate is higher in people with more serious disease. I am not sure how these studies control for that. In other words, if your disease is serious enough that you are a candidate for surgery, you probably are going to have more trouble getting pregnant without surgery too.

2) Their definition of infertility is that you tried to get pregnant for 12 months. I don't see anything about people who succeeded after 12 months.

3) This is like #1 but the study compared people w/medically treated UC to people who had j pouches. They did not compare people w/j pouches to people with ileostomies. Again, people with j pouches are on average sicker than people w/medically treated UC....

4) Your surgery was lapro. Most likely most of this data is for open surgeries, as lapro is newer, and it's likely that lapro would affect things less.

So, it's not as far off base as I initially thought, but the reality is that you were sick enough to already have your fertility affected before surgery. You've already had the part of surgery that might have been a problem. Might just have to wait and see.... a lot of women have had successful pregnancies with a j pouch or an ileo.

Here's a page with some interesting info http://birthamiracle.wordpress.com/2009/09/21/j-pouch-surgery-and-its-effects-on-pregnancy-and-birth/

OK jackie let's calm down about the infertility business. Because part of the reasons women with UC are 15% less likely to get pregnant could be because they don't feel particularly sexy as often as women who don't spend these weeks and months having flare ups. I did not mean that the way it sounds. Rather: if you are not feeling well you will feel like having sex less frequently than someone who feels fine all the time. That's what is so bad about UC, that it really wipes out your energy - including all that great sex energy - for weeks or even months.
It is not going to bother you again. If I were you, I would just think about how young you are, and between now and the time when you seriously want to get pregnant, a lot of time is going to pass, a lot of time in which your body is going to heal and find its way back to itself. The reproductive system is like that. I took the pill for so many years I don't want to say. I stopped taking them at the ripe old age of 35, and 27 days later my normal old period started up as if there hadn't been any interruption at all.
You might want to consider another forma of birth control for a while, something that doesn't intervene in your hormones, just to let everything settle down and come back to itself.