You guys are amazing--specifically Shell, Jill M, RLHadley. Thanks for the great posts. My husband is 32 and had UC for 4 years prior to his J-pouch surgery 3/05. This past Thursday (1/4) he had to have a permanent ileostomy done as a result of chronic pouchitis and complete pouch failure. His quality of life was horrendous. Bummer, but he is one incredible guy and has a great attitude. We've only posted once before in a different forum, but have been reading the ostomy discussions for a couple months prior to his surgery. You'll never know how many times we were helped by your positive attitudes, helpful hints and sometimes self-deprecating humor.
We have a 7 year old son and 3 1/2 year old boy/girl twins, and finally their Daddy is on his way to being healthy and happy again. Things went very well, he has a beautiful stoma, and the change in him is amazing already. The end-ileostomy seems more manageable than his loop was, even at this stage. Obviously it's early (he just got home from Hartford Hospital yesterday), but he's dong great so far! The visiting nurses are excellent.
The best to you and yours--keep up the good work. You guys have made a big difference in the lives of more people than you realize!
Paul & Betsy

Paul and Betsy,

Wow. I'm glad to have been of help! We're always around, so if you have any questions or need advice, you know where to come!

-Rae

Rae, Shell and Jill, I also wanted to say that you girls are inspirational!

Hi Betsy & Paul,

What a great post! It's always encouraging to read stories with a happy ending and you are living proof that there is always light at the end of the tunnel no matter what life throws at you! The future not only looks bright for you both but with your positive attitudes looks absolutely brilliant!

As Rae says, we are alway here so if Paul does get a few little bumps in the road along the way you know where to come for advice, support and friendship.

Nikki,

Looks like we posted at the same time!

Take care.

Shell

Paul and Besty,

Are kids are also excited to see their dad on his way to health. It's kind of nice after things being bad isn't it.
I wish you the best and quickest of recoveries.
What would we do without all the help and info on here?

Joan

Joan-
A note to say we found all your posts in the family discussion board yesterday. You guys have been through the ringer, and we certainly hope things will look up for you from here on out.
Your posts were great--I think it's refreshing that you're so open with how it feels to go through this as a wife. Sometimes we are critical of our own thoughts and fears. Good for you. Feelings aren't wrong.
'Hope your boys (including Dennis) are adjusting well. Take care of yourself, too!

Paul & Betsy

I gotta give the same props to Shell and RL....they were always a great source of info and encouragement to me in my ostomy days and I see them continually answering peoples posts even though alot of them can be found with a search. It's nice to get a reply when your in need and you guys are always there. Shows true kindness.

So glad to hear things are on the way to getting better! Once you feel better, it is amazing what you can live with - I'm sure your husband will soon be an old pro with the ostomy and can focus on getting back to a wonderful life.

So good to hear that your husband is already feeling better! I was sorry to hear about the chronic pouchitis however. Your children will be ecstatic that daddy will be ready to play again soon! Thanks for the positive posts! I hope your experience at HH was a good one! The best times are yet to come your way.

Hi, Michele

Hartford Hospital was awesome, and we had a great experience with both the nurses on Bliss 8 as well as Paul's colorectal surgeon, Dr. Paul Vignati. If anyone else is in CT and needs a highly qualified, caring, compassionate doctor, we'd definitely recommend Dr. Vignati. His enterostoma nurse practitioner, Ann Stoddard is also excellent.
We're in Ellington. Did you go to Hartford or Manchester Hospital? One of my cousins has UC and found a great team at Manchester to construct his j-pouch 8 years ago.

I actually had my surgery 21 yrs ago at Lahey Clinic...the only place besides New York in the US they were doing it at the time. I work at HH, and Dr Vignati is the surgeon I see now for follow ups and any issues that may arise. He and Dr Cohen were both trained(fellowship) by my original CR surgeon at Lahey. So I know they are both well trained..but I prefer Dr Vignati's personality. It's a better match for my own. The nurses on B8 have a good reputation and Ann, well, I hear she's wonderful! I'm glad things went well for you while at HH. Keep smiling!

Michele
How great to know you're at HH and go to Dr. Vignati. 'Know where you're coming from with the personality. He's been really compassionate and understanding with all that Paul's been through, although we've never dealt with anyone besides him. I have a good friend who's a surgical tech there and only had good things to say about Dr. Vignati. She was in on Paul's entire surgery on the 4th, which was neat. We got the full disclosure about how everything went in there! Very interesting! I wonder if she'll ever look at him the same!!!
When Paul was going for his permanent ostomy pre-op, Dr. Vignati said that if we wanted we could go up to Lahey to meet the surgeons he trained under, just to get the complete info on him if Paul was hesitant or needed a second (more like 20th!) opinon. Knowing that he was humble (and confident) enough to offer that gave Paul a lot of reassurance! He goes back for a post-op this Wednesday. Things are still going really well. (Except, of course, for the fact that he can't sit!! ) That gets better with time, I assume. I'm sure Shell and others with full rectal removal and closure can enlighten us on that recovery adjustment!
You must be a pretty brave lady to have gone through the j-pouch surgery when it was so new 21 years ago. Have things gone fairly well since? Pouchitis, etc.?
Nice to hear from someone from our neck of the woods!
Betsy & Paul

Hi Betsy and Paul;
I was truly not brave!! I had prednisone resistant, after 7yrs, UC that was involving most of my colon. When I went to see the docs at Lahey I was 17. They told me I had 3 choices, try a j-pouch, a permanant ostomy or I would die. Not much of a choice! I figured that I would try the j-pouch..the docs felt I was a good candidate for it. They hadn't done too many...so at that point they didn't know how long the pouches would last! Could be one year or several...they just didn't know the long term results. I have been extremely lucky with my pouch. No real issues. Pouchitis I think 3x in 21yrs, and Dr Vignati had to dilate a stricture in the OR about a year ago. I also tend to dehydrate realllllly easy if/when I get the flu...so I usually get admitted for IV fluids. But, then I feel better after 2-3 days and I'm back to my usual.
I know that Paul will soon feel much better. He will be able to sit again...even at the kitchen table! Before long, spring will be here and he'll be running around the yard with the kids!! Keep in touch if there is anything I can do!
Michele