Dear Jan;
Well had council with my dr at madigan and he as Ido think it is time to just go to a perm ostomy .
I have not been able to regulate my output either watery or a blockage,and my spincter was so damaged during orig surgery that I can not control the leekage,which has caused me so much problems.Butt pain and trying to reduce leekage i get blocked.
I am at the end of my ability to deal with it all ,so hope going to perm will give me a life back.

You that have had the change to a perm ostomy and those who had the butt sewn up I would like input as to how things went and things iIshould do to speed my recovery.

My surgery is 02/05/2008

Thank you all God bless you,Gary

Gary, I am glad you are on a road to health. While you certainly gave the best effort to try to continue with the j-pouch, you are correct that sometimes you just cannot repair all the damage that has been done. While I am sure that it was a difficult decision, I am also sure that now that you have made it, you will feel more at ease and look forward to your surgery date.

I agree that while ileostomy was not your first choice, it certainly is a reasonable option and one I know you will accept (especially knowing you have tried everything you can to avoid it).

Now, how to wait for 7 weeks to get it over and done with!! That will be the new challenge.

Take care and have the best holiday you can.

Jan

Thank you jan and god bless you and give you a wonderful christmas and a great new year.

I'm sorry you haven't been successful at saving your pouch, but it sounds like you are ready to move on.

I got my perm ileo at 30 and had my pouch out at 32 and life has been fantastic since. There isn't anything I want to do that I don't do. I'm much more social and active than I ever was with my pouch. I don't take any meds, I eat what I want, I sleep through the night and most importantly, I had a son and am currently expecting baby 2 - I DEFINITELY couldn't have done that with my pouch.

As for recovery, you should expect it to be long and possibly complicated. However, for me it (pouch removal) was the easiest recovery of my 4 surgeries, even though I was told it was the most complicated. I believe this was true for two reasons - the pouch was making me sick and once it was gone my body rebounded quickly and two I used a mind body program the three weeks before surgery and during the procedure.

The program is a book and tape called "Prepare for SUrgery Heal Faster" by Peggy Huddleston. YOu use the tape as guided relaxation prior to surgery and then wear it through the surgery (most hospitals will let you do this). I'm not normally a new agey girl, but I figured if it couldn't hurt and might help why not give it a shot?

I was walking 1mile on my own 2 weeks post surgery. 4 months post surgery I did a 7mile hike a MT Hood in Oregon. 8 months post I did a 5 hour kayak trip on a FL river.

I wish you the same quick and problem free recovery - you have certainly had your share of complications already. You deserve an easy road this time. Let me know if you have any questions.

HI

I recommend starting by checking posts by JasonPA-he is the 'guru' on going from a failed jpouch to an ostomy-really helped me.

Shell,
6 million $ man
and many others are worthy of winning Mega Millions for their help too.

Expect a few weeks of discomfort then 1-2 months of being a 'Shuffling Joe', start walking early and often-the nurses thought I was in an Indy 500 race lapping the floor.
Work out when Dr approves with light weights.
try rice and bananas to thicken output.
Don't wear tight shirts
Enjoy Life

Happy & HEALTHY New Year-
Eric
Good Luck,

Thank you all for the info it helps me to understand things i will face.
Ido hope my anal will heal without problems.

It has been such a long time I will be glad to have a life again.

This almost 3 yrs has been a dificult time for me,so will be glad to get back to a life again.

Thanks gary

I guess the one thing that terrified me most about my pouch removal surgery was becoming a barbie butt. I had experience with an ileo. so that was o.k. but the thought of having my bottom sewn up?! Day three after surgery (when I was somewhat coherent) I realized that it didn't hurt back there and everything healed nicely. Getting my strength back was hard and thanks to the physical therapist at the hospital I was able to walk around the house with some ease. Now, almost eight months out and I am doing realy great. I have more energy and can do just about anything without having to rush to the toilet,which is a relief.

Hi Gary,

This is a much bigger operation than the j-pouch creation and so expect to take a little longer to get back up to full speed.

I don't remember the butt wound being any more difficult than my other wounds and once the stitches dissolved it really didn't give me that much discomfort. I'm probably not the best person to ask though because I had a lot of complications due to contracting MRSA so my wounds were slower to heal and I was seriously ill for a few months after. It also left me with some serious adhesions which eventually led to another full laparotomy 2 years later to free them off and untwist a loop of gut.

Since that last operation though I have just got better and better and now can eat just about anything in moderation and do anything I want to. Despite all the complications I still feel it was the best decision I've ever made.

Good luck and a Happpy Healthy New Year to you.


Shell

I can reassure you about the butt wound because mine took four months to close. This was because of a slipped stitch right after surgery. I just kept it clean and dry, used squares of gauze the first few weeks, and eventually it closed up perfectly. The Barbie butt thing really is no big deal.

Caty

Good morning,

I am 6 months out from jpouch removel, perm ileo op.

The mucus, secretions, ooze, whatever you call them were unpleasant the 1st month-had a nail size gap apparently, then surprised me periodically the 2nd month with sudden excretions, and were rare by the 3rd month, none in a couple of months.

I do occasionally get what my 10 yr old son & I call 'dingle-berries' in the hair on my behind.
Simply snip off with a medical scissor

I do not even think about that aspect these days. The only time I think of my behind is when i have 'phantom' urges to poop from there-that may be another thread.....lol

Good Luck, Happy & Healthy New Year to all
eric

Oh yeah! The phantom "urges" or in my case "phantom farts"

I never had the phantom urges or pain, but often would get that "bubbly" feeling when you need to fart! That was really weird because you really do feel like you need to release gas, but it mostly resolved after about 6 months and I rarely get it now.

All good fun and games and part of the adaption period.

Shell

Gary,

You've had lots of good advice, and it sounds as though you've really given this your all and are clear about having a perm. ileo. I, too, had years of very difficult times, with six surgeries in five years, and I only wish now that I'd given in a couple of years earlier! The only advice I have to add is that if you have been on 40 mg. or more of prednisone or other cortisones in the past year prior to your ileo surgery, you should have adrenal support by taking pred the day before surgery, during surgery, and the day or two after. It's simply a pulse of support so that your adrenals don't just put on the brakes and quit working. The protocol is widespread in the US (can't speak to other locations), but somehow my surgry team missed it and I'v had a really tough time with adrenal failure that's only beginning to be addressed.

Right after surgery I was fine - in the hospital for 7 days, and at the third day was waltzing the IV a mile around the nurses' station. About ten days later I began to get weaker, so knew something was awry frommy great beginning. My surgery was in July, and I'm beginning to come out of the adrenal problems (which may take a year to resolve), exercise a bit more, and am eating everything in sight. It's been such a boon to feel fairly healthy again, regardless of the Barbie Butt (which I didn't understand prior to the surgery- I thought the anal canal would be closed from the inside, and instead, I had sutures that looked as though someone had taken a breadknife to my nether region!). A few phantom farts here, too, but no pain or drainage or urges. I'm so glad I did it,and hope you'll be there soon. It takes just about as much courage for this decision as it did to have the J originally! You really have to step into the void.

Barbara

Dear all;

well my surgery has been moved up (thank god) as i have not sleeping and living in bathroom night and day.

My surgery is 01/18/2008 at madigan hosp tacoma wa ,ft lewis army base.
I know i will be so relived to get this over and get on with a new life (A life).

Thank you all for your input it has given me insight and relief to know it should not be so bad.

God bless you all,Gary

Gary,
Best of luck to you!

I've got my reversal scheduled for 3/11/08, so I'll be right behind you! (no pun intended)

Please update us with your progress- I'll be eagerly looking for it!

//Todd

Oh wow Gary! Only another FIVE days to wait!

It looks like JillM and I started a trend all those years ago! Good luck to you both and welcome to our world of good health and no butt pain.

I'll be keeping everything crossed for a smooth surgery and recover for you both.

Take care

Shell