Hi guys,
Well things were manageable until yesterday morning when I woke up and my stoma 'farted' all the way to the bathroom and then some. (ok, stop giggling) A veritable symphony.
Of course I then tried to intubate with my strait medena and couldn't. After a few tries I tried to use the stiffer curved cath and still couldn't. I tried not to panic and went back to the strait using different directions. Lots of lube too.
Well I finally got the tube in but it now goes in strait as it did immediately post op. It has been curving to the left and upwards for the last 2 months. I leak more and more around the tube when it is in and I am irrigating but not (thank goodness) when it is out.
I feel as if my pouch and/or valve has/was flopped over and now has flopped back again...This worries me because I leave for holidays tomorrow for a week at a friend's beach house. It is a 5 hour train ride from Paris and I am panicked if something happens while I am there....
I have packed more medical stuff than clothes!
No answer yet from Dr. C on what if anything there is to do about it. Any ideas out there?
I have not done anything differently except for starting to mildly jog (read an old ladies pace here with little bounce) again instead of just walking when I work out.
I have also started to lift my pelvice (put my hip back in). Could that be the cause?
I am desperately scared that things are starting to go wrong again and in my experience when they start to go wrong they do not right themselves automatically.
Thanks for you voices on this one
Sharon

Sharon
I do not know what to tell you.

I would stop the 'old lady' jog and pelvic tilt just to be on the safe side.
Must share with you that I am a gym regular for past 15 months (have osteoporosis from prednisone use from those UC years). I have gently been working on the abs and getting bolder about it. Lately I noticed that the day following an ab workout, my stoma leaks stool. It took me awhile to figure it out and now I do not do those exercises. I am afraid I may be stressing supporting muscles (if that's possible).

I hope you hear from Dr. C soon. I live 20 minutes from the beach and haven't seen sand in ages Hope you get to enjoy the surf!

Sharon,
Seems that Chris is also having issues again.
It is scary.
The past few days intubation has become more tricky.
I told him to take the day off from work. He has been over doing it. 10 hour work days, 2 days at school and one night at work. I admire his work ethic, however, I do believe stress factors in too.
After all you did get punched!
Don't forgert that could have caused a problem.
Hope you hear from Dr C soon, I e mailed Dr Shore to give them a heads up.
I dread the drive to St Pete so I hope it doesn't come to that.
I know with you it is worse.
I don't know that I would spend 5 hrs on a train under the circumstances.
I have not had a vacation in years.
Very low on my list of priorities.
I do hope this resolves for you.
The roller coaster rides get old.

whew not fun for you all. You could leave your cath taped in and take your vacation - not ideal but would work until you see the surgeon.

I also exercise (gained 60 lbs from when I was 21) and lost 30 and holding this weight and it's been ok. Just have the roll of fat from the original ileo surgery hanging over my stoma so worry that it will collaspe from that.

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

Like other k-pouchers, I've followed your k-pouch struggles, and, of course, have been wishing you good luck.

I've had my pouch "only" 5 years, so you know much more about it all than I do. But you say you leak stool when the cath is in but not when the cath is out. Could it possibly be that your valve works but is big? Would a wider cath prevent leaks while the cath is in?

Also, as an older lady than you (I'm 66), if it were me, I'd skip all jogging. I'd just walk or power walk with arm weights if I were you. You might have to walk for a longer time than if you were to jog, but you could tone as well and burn the same calories if you walked. Seems to me walking is easier on not only your tummy but also all your joints. And as time goes on, joint problems, even for those who haven't taken a lot of prednisone, can make life miserable.

When I'm inserting my cath, the essential factor in making it all a breeze is my posture. I absolutely must sit up straight and not in my usual slump and then I have no problems. So maybe the various ways you're sitting or standing influence the ease of insertion. So maybe there's a "best" posture for you too--whatever works most of the time.

I hope your vacations is great--you deserve it.

Thanks girls for all of your support...
I just got back 3 days ago from Cap Ferret and my 5 hour train trips (OOOOOOHHHHHH! so terrifying but so good)
The trip was wonderful and the train went well, the bathrooms were surprisingly comfortable (ok, I upgraded to first class just for the toilets! ) and ate a very low residue diet and tons of prune juice the night before so my pouch was empty and easy to handle. Trying toinubate in a rocking and rolling TGV train (high speed train) was a real blast. You think that you are aiming the tube in but you hit your belly button, boobs, nose and other body parts long before you find the stoma. Irrigating is even more fun! but all went well. I was way tooooo chicken to try to swim in the wild Atlantic waves the first 5 days but finally dunked the last day and then extended my trip 2 more days to go back in and really swim. What a pleasure!
Ok, I did have 2 incidents when I could not intubate. Once at night and the other in the morning. Both times with full pouches. Freaky! but I finally did manage with a bit of gymnastics in the two foot square toilet room there. No sinks! Just a cut open bottle of evian water.
Back home I had the same problem yesterday morning but it finally went in. I think that the trick is to keep it reasonably empty and to twist, bend and stretch when it gets stuck. I went flat on my back and did my first pelvic lifts in ages but it seemed to shift it back in
So, I am a bit more optimistic (please, Lord, don't prove me wrong!) and hoping that this time, it will hold.
Next vacation is a road trip with my husband in one month's time! I must be nuts!
Sharon

Hi Sharon,

Wow - you made it! Halarious about the train (we'll not funny but funny). I went to NY on many business trips and got into turbolance and spewed poop all over. Always fun to try and get THAT out of your clothes and have coworkers on the plane wonder what the hell happenned in there!

Love the plastic bottle trick - it's amazing what we can poop into now besides a toilet.

You'll be fine on your next adventure!

Ever try to intubate on a beach???? use sea water to irrigate and a pop or water bottle as a recipient! Better than exploding!
Amazing what we can do when we really have to.
I didn't use a patch or cover over my stoma and had no sand issues at all...a little discharge onto the swimsuit but that is all....nice to feel normal for a while!
sharon

stupid question time......have you found your stoma to be 'drier' now that you are in menopause??? Just wondering being that everything else seems to be drying out.....
Sharon