I am scheduled to have my 2ND step surgery next Wed and after reading all of the recent crys for help I am just about ready to forget this whole thing! I know this is a place to come to when things are looking bad and you need answers and encouragement, and for that I am really thankful this place is here!
But...I think there needs to be a section were only good outcomes and happy endings can be talked about and read. I am looking for what I can expect so that I can be ready for whatever happens, but I am done reading about tons of problems. I know the risks now and am trying to except them, but what I need now is to hear why I should even try to have a successful j-pouch!!
To be honest, I am freaking out!!! If there is anyone out there that is not too busy living thier great life after a successful j-pouch surgery, please tell us your story!!
Truely, Sarah
p.s. Like I said earlier, I am very thankful for a place like this to get help when you need it. We just need some rays of sunshine along with the gray clouds as well!

quote:

But...I think there needs to be a section were only good outcomes and happy endings can be talked about and read.

There is a section like that, Sarah. It is called "Success Stories: Living Life to the Fullest" and it is on the first page of this site. Just click on the box on the right-hand side of the page and start reading. I believe that there are ten or so stories up there right now.

Scott

I clicked reply a little too soon there....

I also wanted to try to assuage your fears a little. You have to remember that most people who visit this site are similar to you in that they are getting ready for surgery or between surgeries and have questions they need answered. Or, they have had their surgery and are having problems or have more questions to be answered. Most people who are doing well don't feel a need to come to the board, so you are getting a really skewed view of your prognosis for success.

I can tell you that I just had my one-year anniversary of my takedown on July 25, and I am doing very well. I still take a variety of medications (lomotil, loperamide, codeine) and metamucil, but I can eat anything that I want and go anywhere I want without worrying whether I will have to run to the bathroom.

Just Saturday night, I left my house with my wife at 6:00pm, walked to the Metro and headed downtown to go to the Eagles concert. We went to an Irish pub across the street from the venue for a pre-concert pint or two of Guinness, and then went to enjoy the show. We had some more "refreshments" at the show and then headed home at midnight when the show ended. Although my wife had to use the ladies room several times during the evening (as usual, lol), not once did I even think about it.

It was a very enjoyable evening, and something that I would not have been able to do if I still had UC and hadn't had the surgery.

Scott

Thank you for your reply!! Those are the kind of stories that I need to hear! I know that it will be a time of recovery for me, but the light at the end of the tunnel sounds so sweet!!
I did check out the success stories section and it is nice, but there too you have to read all the bad stuff first to get to the good. I guess I want to skip that part and just be filled with positive thoughts right now.
I will post my success story with all the others when this is all over!!!
I am not trying to

Hey SarahH,

I know what you mean with kind of freaking out about the surgery when you read about a lot of the negatives that come with it. I am happy to report however that I could not be happier with my pouch. I had my takedown 2 months ago and I feel fabulous. I am able to sleep through the night without having to use the bathroom and without any leaks. I am able to go long amounts of time without using the bathroom...I've even been able to go on the rollarcoasters at amusement parks! I have only experienced butt burn twice, and I was able to clear it up in a day with some cream. I stay away from any foods that could potentially cause obstruction but otherwise eat whatever I feel. I am so happy, and so healthy and just feel great! Having this surgery was the best decision of my life and I hope that when you have your takedown you feel the same way!

All the best and I'll be rooting for your surgery to be as successful as mine!

Marisa

I have no issues and do what I want, when I want and for how ever long I want. Period.

Do I mind or watch certain things I might eat? Sure. Am I mindful of grumblings, etc.? Sure. Do I let it slow me down? Nope. I have learned very well to "hover" and have no shame. I have no issues using a bathroom in public and have explosive movements, however, I don't let that control what I do or when I do it and with whom. If someone makes a "face" at me when I come out of the crapper, I just let it ride. If they are "man enough" or "woman enough" to come and ask or say something, I'll talk to them. Other than that, if you haven't got the guts to come and say something to me, to heck with you. I don't sweat it.

I play golf, I do yardwork, I work on my truck, I do stuff in/around our house, I travel alot, I fish, I play with my dog, I goto NFL Games, I goto NASCAR events, you name it and I do it probably. I drink alcohol when I want (again I'm mindful and smart!), I eat what I want within reason and am not foolish!

There's an old saying, "Nothing ventured, nothing gained". That is true. Unless you step out there and try it, you will never ever know. You may (or will) have regrets. I live my life and aim for no regrets. I've faced my mortality, I faced death down. I am still here. Live life, do what you want and try. If you fail, at least you tried, but, cannot say you didn't. Either way you succeed and live life on YOUR terms.

Oh and good luck to you. We'll be cheering for you from the sidelines.

Sarah,
The surgery is a rough road. You know from the first one.
I have had my j pouch for 20 years.
1 obstruction that required hospitalization and the dreaded NG tube(5th year) and 1 abscess(10th year) that went undiscovered for 6 months. I do not have unbearable pain, bleeding, take no drugs,am very healthy and sleep well, no leaks,etc.
Life is great and after 13 years with UC I have no complaints!
I hope you do as well as Miss pnkdres!She has had an amazing recovery.
Youth is on your side.

Hi SarahH
here's my good report, have got FAP rather than UC, had my pouch constructed 3 years ago, fortunately was able to have it as an all in one operation as I was basically healthy and had not been on any form of medication, only need to empty the pouch 2/3 times a day, can't remember the last time I had to go at night, eat what I want, drink what I want including alcohol, had three European holidays last year, have already had one this year, two weeks in Skiathos, Greece, off to Turkey in September. Only small problem I have is with spicey food like curries, sometimes gives me a bit of butt burn and then normally only when emptying pouch, apply some Sudocrem and then forget about it.
All the best for yor takedown

Michael

Well, we would say that Mark, Carter, Ashley and Mandy are all good stories -- not without their ups and downs I'm sure, but check out the photos on the blog below and you'll find very satisfied jpouch customers

I would like to add another 'good report'. I am now over 6 months out from my ileostomy 'take down' and I am very happy (so far). Sure, I visit the bathroom more often than 'normal', but I take no meds and have complete control. I just returned from a meeting in San Francisco and the trip was no problem - I contrast this to a year ago when I missed the same meeting because of my uncontrolled UC. As I've posted before, my only regret about surgery (so far) is that I didn't have it sooner. Best of luck to you and I hope this helps,
Jeff

I'm coming up on 5 months post takedown and am doing great! I never thought I would be doing this good after my second surgery because I had a lot of problems after my first surgery (dehydration, scar tissue causing blockage). I am happy to tell you that besides the difficulties after my first surgery, I have been complication free after my release from the second surgery. I have no butt burn issues, eat whatever I want, drink whatever I want, play sports, and pretty much live my life the same as it was before UC. I know that during the whole ordeal it can be hard to see the light at the end of the tunnel, but believe me there is. I wish you all the luck with your surgery and a speedy recovery after. Good luck and keep us updated!

Another good report here. I am about 4 months post takedown. I have traveled a good bit, work 40 - 50 hours a week, and play a lot of golf w/o any problems. Is my life as good as it was pre-UC? Probably not, but it's so much better than it was when I had UC I am very happy with the results.

It is so normal to feel anxious before any surgery. I think you'll be pleasantly surprised at how much easier the takedown is than the first step was! Try to look at your soon to be adventure as just that! You will be learning about your new indoor plumbing and how it reacts to a variety of positions and foods/liquids. For me....after 6 years.....it is all good. In fact, in many ways my entire experience is far better than it was with the original, healthy issue! Best wishes!

Ditto ditto ditto. My take down was just over a month ago and I am doing very well. And, I will add, I have been very busy, as you say, living my life, that I haven't been visiting the site very much! I did have some butt burn issues early on, which seems pretty common. I use zinc oxide now and that seems the best. I also take metamucil about twice a day, and occasional gas x but that is it for "meds." I also eat whatever I like, and have been eating plenty of salad, even chocolate (yay!) and popcorn. I did have some discomfort today, I think there may have been a very slight blockage, walking really helps.
Good luck with everything, I bet it will go fine and you'll be up and about in no time!
Jenny