Tried to find that record-setting thread I started with a personal blog I started some time ago to add to it, but looks like it got archived.

Anyway,
I was JUST about to throw in the towel and go back under the knife to get me a permanent ileostomy (to join the ranks of JasonPA), but I had to give physical therapy a shot first.

My first appointment was yesterday, and everything my doc was telling me was logical and made sense to me.

After some tests and diagnosis, she felt as though I was the perfect candidate for her help.

We did some exercises, and I took a cheat-sheet home with me to continue those exercises twice a day until my next appointment next week.

She said it would probably get worse before it gets better, but we should see some improvement within 3-4 weeks.

Well, I was only up 2x last night, and actually got almost 4 hours of straight sleep! (for the past 12-14 months, I'm up like clockwork every hour and a half to two hours with pain/spasming/clean-up duty)

I know I have a tendency to celebrate prematurely here, but I have some serious hope this time. If it doesn't work out, I'm so excited to have the pouch yanked, so I don't really care.

However, early this am, I started to have the normal spasming/pain down there, which normally causes a sprint to the bathroom, but they were MUCH milder than normal, so I blew them off.

Again, I'm very encouraged, and VERY sorry I didn't try the PT sooner!

//Todd

What ARE you thinking??? Prematurely typing out loud. At least you should have whispered this. [I'm so glad that something is working. Just be ready for the worse before the better.... This might be a little bitty good blip and then it might go south for a while. But then it'll be good again. See how I whispered that????? Suebear did the PT thing and she's perfect now. You'll be joining those ranks!]

kathy

Haha!

I know, I know- I broke the cardinal rule. I think you were very clear about that one WAY back when... but, I've got a big mouth.

I'm going to be working on these exercises so much that I'm going to have a bulge from a ROCK-SOLID pelvic floor muscle! Haha!

Yeah- I think I remember Suebear saying something about PT WAY back when, too, but I was sure it wasn't a PT thing for me... I'm not as smart as I look! 8-D

//Todd

Todd, I have to say that I was a silent lurker on the other post and I am sad that it went into archive. Keep up the positive attitude, even if you decide to the end-ileo it will definately not be from lack of effort. You are a true trooper and people (me included) have definately noticed how hard you are fighting. There is no shame in having an end ostomy, you have truely tried everything. Good luck trying to figure out what works for you,I just don't have that kind of stamina . By the way I loved the consant updates on the last thread, it gave me the hope that you maybe you figured out what worked for you. Keep on trudging, Scott Mc

Hey Todd, you know we talk all the time and I agree with trying everything before that FINAL decision is made. For me, I have had the best few weeks of my life in a long ling time. I dont think anyone on this site can tell you your jumping the gun or making a decision to fast - THAT IS FOR YOU TO DECIDE and NO ONE ELSE. So from me you wont here DONT DO IT ITS TO EARLY or WHAT THE HECK ARE YOU WAITING FOR... But you will hear from me that whatever you decide I will be here as a friend and support. I hope this works for you and your off to a great start!

Hey Todd, it's good to hear from you and even better to hear that the PT may be able to correct your difficulties. Please keep us up to date on the progress!

Rick

You guys are all the BOMB!

It's great to come back and see all the support/positive feedback- I look forward to coming back here after a post and reading the responses!

Anyway,
I seem to have taken a couple steps backward, but my physical therapist told me that would probably happen.

You guys would crack up at the exercises I'm doing, because you'd NEVER think they would make those muscles burn the way they do!

I actually took last night off, because I had one too many margaritas and I think one too many beers! In addition, all these muscles I'm exercising are actually SORE!

In the end, if this all does end up working out without going back to the end ileostomy, I would be HAPPY to share my regimen of exercises I've been given to do- I have a sheet of paper that shows you how to do them, reps, etc. (If anybody wants a copy, I'd be happy to share them anytime!)

Thanks again for all the support guys- can't tell you how much it truly means to me!

//Todd

**Update**

Wrapping up week #2 of the physical therapy.

My PT doc gave me some new exercises to do now for my PM session.

The good news is that with her little measuring device, my pelvic muscle strength went up in 1 week from a 16 to a 20. (she tells me 'normal' people measure out at around 40 or so)

The bad news is that I continue to have sleepless nights, lots of leakage problems, etc.

My frustration levels are at an all time high, and I'm mega-sick and tired of the exercises already.

I just feel like I should be seeing some change by now, but she tells me to give it a good 3-4 weeks... BLEH.

I know I'm whining, but I'm SOOOOOOOO sleepy all the time ESPECIALLY after eating (for obvious reasons), and it's getting very difficult to work through an entire day after I eat lunch...

//Todd

I can soo relate to your last posting. I was there going through a similar situation a couple of months ago. I have had my j-pouch for ten years and for the past few years things just got worse for me. I eventually had to quit working because of complications. After being almost home bound for a couple of years I finally got tired of it and decided to have my pouch removed. I now have an end ileo and I am so glad I had it done, like the other posters have said I also feel great and thats is something I haven't felt in a long time. I wish you all the best and keep your spirits high.

ToddL,
Hi just wanted to say I felt I really related to your post. I have been going through chronic pouchitus for about 1 1/2 years now. I am on Cipro now with no help. I work every day and walk around like a zombie. I'm up at least 3 times a night cleaning up and layering on the ointment. I have to wear sanatary pads its so bad. I have tried other antiobiotics with the same results. Works great for a while then it all goes back. I have seen my doctor about going back to the ileo but he always says lets try a few more things. Sometimes I want him to come stay up with me at night. Thanks and good luck. I hope we soon get some good results.
Marie

Hey Todd, sorry you’re not doing so great. I also have a lot of pain in the pelvic area. On Friday it will be my 1 year mark from 1st step. I would love to get a copy of your exercises to try them - I'm willing to do anything at this point. I was up every 2 hours last night. Funny thing is on the weekends if I take a nap (3-4 hours) I can sleep straight thru w/o having to get up go figure!

CARRIE

Carrie,
I find that same thing to be true of me! I sleep MUCH better during the day, and for longer.

My PT doc says that it's because those muscles that I'm currently working on get fatigued later into the day/into the night, which is what causes the spasming/accidents.

I'll dig up the scanner, and shoot these over to you later today!

//Todd

Todd.......
As long as you are going to be digging out the scanner, I would love to get a copy of your exercises too. Not sure anything less than the ileostomy is going to help my leakage and accidents, but it's worth a try and certainly wouldn't hurt.....
Char.......

Thanks you rock!!!

CARRIE

Hey guys and gals....been lurking for a long time here and occasionally I have to chime in. I am in the same boat as many of you...had my first Oct 06 and TD on Dec 06...I have yet to have a good week. Although I do not have the leakage issues, there are many sleepless nights..some nights up EXACTLY every hour...it is maazing timing actually. I am still having about 12-20 BMs a day. Been hospitalized 3x in the last 2 months for dehydration. No matter what I eat, or don't eat...I still go and go and go. I do not have pouchitis, I have been dialated 4x..pouchograms, pouchoscopies and we have found nothing. I had this test last wekd where they turned the xray table on its side, injected me with this thick thick paste and I sat on a fiberglass toilet and "evacuated" while they took video and pictures. Pretty crazy. No one has any answers...the new gastro I saw last month said its a failed pouch...I was very upset...my surgeon refuses to accept that, as do I. We are going to continue to keep trying..no antibiotics have worked, tried so much....so sick and tired of being sick and tired. My temp ostomy was so bad between surgeries that I am so scared that is what lies ahead for me. Sorry for the rambling and the long post...have not vented in a while