To have a bowel movement, even mostly liquid,  I have to push so hard from my stomach and abdomen for several years and then I have to lie down, roll onto my back with my knees to my chest or legs elevated to get rid of gas after a bowel movement....that I’ve given myself an inguinal hernia. And a recent mri says I have a stricture on both the in and out of my pouch. If I take any antibiotics at all, my stool thickens and it gets terribly painful from what feels like a blockage, but isn’t.  I self dilate every night.  

My doctor has referred me to surgeon. I’m ready to get rid of this pouch. I’ve had it since 1991. It was great for the first 10 years. But the last 10 have been pouchitis every 5-9 months.  But the surgeon insists that I try this pelvic floor therapy before surgery. I understand he’s being cautious and trying non-surgical options first. I mean, it’d be terrible to have the finality of an external bag and still have issues. But I just can’t help feeling the time has come to give up the pouch. 

So seriously, is this pelvic floor stuff valid? Or just a long shot? 

Last edited by Almac
Original Post

Hi, Almac. I've been thru two different types of pelvic floor therapy for pelvic floor dysfunction. Both offered helpful tips and techniques which did moderately help my situation, but unfortunately was not enough to cure my issues before infection, abscesses, and fistulae decided to join the party. (These things were not caused by the therapy, just happened to occur close in time). I, too, am ready to ditch the pouch and have begun discussions with a surgeon. 

It was my experience that I got out of PF therapy just what I put into it. It is very time consuming with lots of "homework", requiring lots of patience and persistence. I was beginning to see good results and was hopeful this was the "cure" I had been searching for years. (Initially,  I was quite sceptical and thought it would be a waste of time, too). I can't help but wonder if it would have been successful given enough time, but the other complications arose and ended all hope of life without an ostomy.

I'm not sure if you will find this helpful, but at least you know there are others who walk similar paths. Good luck with your decision!

 

Sorry Almac for your difficulties. Sounds way worse than where I was at when I did 3 months of Pelvic Floor therapy. It does help, but needs you to do at least 2x day at home- homework. I had a hard time keeping up with it, but do think if you could it work help you to evacuate more successfully. Important to find good therapist you’re comfortable with- mine was great! My issue was prolapsing j- pouch which I still have. Maintaining but nights are getting worse. Good luck in your decision and future health!

Hi, Maddie18. I've been thru two different types of Pelvic Floor Therapy for PF Dysfunction.

The 1st type was done locally with a physical therapist specializing in PFD. It involved realigning the pelvic muscles and strengthening the muscles using kegels with progress measured through electromyography (EMG), which is a rectal probe monitoring muscle tension.

The 2nd type of therapy was a 2 week course thru The Mayo Clinic's Evacuation Disorders program to be followed by 8 weeks continued therapy at home, on your own. It focused on RELAXING the pelvic floor muscles, rather than strengthening.  It also uses an EMG as a rectal probe to monitor muscle tension. There are 15 increments (measured in micovolts) between complete relaxation and total closure of the pelvic floor muscles. 15!! I find that amazing. After numerous years of fecal incontinence, my pelvic floor muscles have been improperly trained to be on high guard at all times, which simply exhausted the muscles rendering them useless when actually needed. Retraining them to relax was a 24/7 activity.

The 2nd week of The Mayo Clunic program was much more challenging. It involved balloon biofeedback which inserts an empty balloon into the rectum, partially filling it with water, and then relaxing the pelvic floor muscles to let go of the balloon (simulating evacuation) without pushing or straining. This was an intense two week course! I was exhausted by the end of each day.

I definitely experienced improvement in the brief 3 weeks I was in the 8 week program, before fistulae, abscesses, and pelvic infection ended my therapy. (Therapy did not directly cause these complications, just poor timing). I still utilize some of my Mayo Maneuvers today.

Hope you find this helpful. Ask.any questions if there's something unclear.

Laura

Hi Laura,

Thanks for the detailed description of all the work you put into trying to strengthen these very important parts.  

I was told many years ago do rectal kegalsif we can callthem

Sorry, I hit the post button way too soon.  I was told to do the rectal kegels way back if you can call them work. If I don't do them I notice a difference.  

Is this not enough of a work out for us? 

I've seen a number of therapists for PF therapy.  By far, my best results were from p/t's that used Dry Needling as part of their practice.  There was one therapist that I thought was a game changer who is in the UK (London).  I moved back to the US (Chicago) six months ago and have yet to find someone of her caliber.  The program outlined above from the Mayo Clinic sounds fantastic (and exhausting).  I may check that myself.

I had one session of PF therapy at the Cleveland Clinic where my j-pouch surgery was performed, but home is in Virginia. I had a difficult time finding a local skilled therapist as not many are trained in PFD--at least in my neck of the woods--as most are unfamiliar with a j-pouch (maybe that doesn't matter) and/or working with men (again maybe it doesn't matter). I ended up going to PF therapy at the University of VA for four months. It helped, but my GI once said I may need to go back for additional, more advanced therapy.

Regarding the Mayo Clinic program, I assume you were local? Or did you stay in a hotel for the entire program? Sounds like a major investment with risk vs reward as a deciding factor, correct?

Unfortunately,  I am not local to the Mayo Clinic. There are plenty of B&Bs, hotels, and charitable housing within walking distance. Due to my condition, I needed a private bathroom, so I opted to rent for 1 month a room in a European-style apartment house with a communal kitchen, yet each room had private bathrooms with showers. Most of the residents were visiting students or doctors, or resident or fellow doctors, nurses, etc. I was the only patient at the time. It was 3 blocks from the main clinic. Nice town, thankfully for such a huge investment in time & $$. Afterall, we poop on way or another for the rest of our lives!

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