Hey you two - I'm just wondering how things are going for you two. I'm hoping things are continuing to improve!! If you have a minute and feel up to it, let us all know how you're doing. Still sending out those vibes.

kathy

Hey Kathy,

I'm doing terrific! Thanks for asking. This is week five since I had my surgery to remove my j-pouch, sphincters, and anus and got my new rosebud stoma. My life has completely turned around. I never realized just how wonderful life can be minus j-pouch/vaginal fistula problems. I can eat again what I want, when I want (no incontinence/no burned skin). I can sleep through the night. I don't have to clean myself up anymore or wear Depends, pads in my pants, or gauze up my butt.

This has been a fifteen year process--some of it good, some of it bad. I had four good years with the j-pouch and the rest was all about the fistula. Each time I had a repair, I thought it would be fixed and that would be the end, but it never was. Over the years I just couldn't bring myself to get the permanent ilestomy (even though I knew the inevitable was in my future). Of course, I didn't have a crystal ball but if I had, I would have gotten the permanent ileostomy a long time ago and saved myself many, many years of "heck". Through all those years, I just wanted to "go to the bathroom" like a normal person does and that's why I kept fighting for so long.

As you know I tried EVERYTHING to repair my fistula and save my j-pouch, but in the end the j-pouch was a mess with scar tissue, etc. It had adhered to the vagina and that's why the fistula never closed.

These days I'm still pretty sore at the belly and I have some aches and pains when I sleep on a mattress, but things improve all the time. I also walk slightly stooped forward. I can't wait for the stitches in my butt to dissolve. My energy level is down. All these things will get better and I'll be back to my old self in no time

A whole world has opened up for me and I can't wait to get on with it. I can eat, sleep, and travel, and, and, and...

Caty

This message has been edited. Last edited by: Caty,

Wonderful news Caty!

I'm so glad that you are now finding out just how wonderful it is to be healthy again! You have an awsome attitude and I know that you will be back to your old self... no scrap that! You'll be back to a BETTER self in the very near future!

Here's to all the "and's" you choose to do, enjoy!

Shell

Caty I second what Shell said "you'll be back to a better self" . . . that is so true.

I'm glad to hear of yet another perm ileo that is a happy ending to a long and painfully sad story.

Your butt healing will be faster than you know it. My incision had some problems so my hubby had to clean and pack the rectum 2x a day until the opening healed up. A hand held shower really helped the healing process 'cause I could squirt warm water right up into that troublesome area.

Wait till you see how great it is to EAT ANYTHING you want.

Try to take lots of walks and keep your shoulders up straight and pull your tummy in. That crunching over is hard on the back. I am right there with you in wanting forever just to go to the bathroom like a normal person. Now, I'm in and out in a flash, its great!

Happy healing and pls keep us posted on your progress.

Cat

Oh, Caty, how terrific to hear how you're doing! My surgery was a week later than yours, and as you know I've had some serious setbacks, but I can feel the resonance of your experience. My belly pulls less each day, I work with a PT once a week to strengthen core, back and legs so I'm not so weak and slumped to accommodate that longitudianl shrink I feel like doing. My bottom end stitches are completely healed and no longer hurt at all. AND I made (well, my sweet husband did most of the work as I barked directions from the couch) a dish for dinner that included serrano chilis - can't believe I could eat them!!

You suffered much longer than I did, and it was in part because of your experiences with your fistula that I gave up on mine and was able to really hear the surgeon's recommendation that probably the only fix, and certainly the best course for me was to remove the rectum, get the pouch out and go for a simple external solution. It is SOOO hard not to give up the normal plumbing vision, but your experience made me much more open to an ileo. much sooner.

It's delicious to hear about your plans to eat, sleep, travel and much beyond - mine are to eat, hike, snowshoe, pack, travel, garden, watch the spotted owls and call them to the deck, and build our straw bale house. Now it all seems like it might be do-able once again.

Cheers, and cheering!

Barbara

P.S. I also posted a long missive under Prednisone on this forum.

What great posts! I had everything closed up and a permanent ileostomy done in January of this year. I'm loving life! I feel so good, I'm enjoying my family, my work, and my FOOD! 'Wish you ladies all the best. Shell, how are things going for you? 'Feeling any better?
Paul