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skn69
I am reposting here eventhough I already posted on the rant & rave.
My k pouch has been hanging by the stoma for the last 4+ yrs. I was terrified of having it fixed, mostly out of fear that it would cause more problems or require open surgery.
My French surgeon did a laporoscopic procedure. He found the pouch completely off of the wall, sitting very low in the pelvice, crushing the bladder and female goodies.
No wonder I was in so much pain. It was also leaning againt the hip.
So he picked up the pouch and sewed it down with 2 rows of non-disolving sutures. He actually folded the edge of the pouch over so that he had double thickness to sew through so that there is less risk of tearing through.
Then he found the loop of bowel that has been causing me problems on the left side. It was adhesed to the abdominal wall and enprisioned in adhesions...he took them down, liberated the loop and now things are flowing freely.
He also fixed an umbilical hernia (very small)...
All in all a very successful surgery according to him.
I made it home in 48hrs and can now rest for a few weeks (no cooking, cleaning, or ironing!)
Low residue diet, no gas forming foods and hopefully a full recovery.
For those of you with k pouches that are having 'non-valve related problems' the possibility does exist to have your fixes done non-invasively.
Definitely gets points for not opening me up!
Off to bed
Sharon

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skn69skn69Member
I am not pessimistic about the future or long term prognosis of the k pouch...yes, there can be complications in the long run (or short depending on who you are and how your body reacts) but there are some less complicated solutions.
Life leads to various medical complications and muscle/joint/organ breakdown so why wouldn't our pouches follow those rules?
I posted about possible complications and listed some non-open surgery solutions for many...my laporoscopic surgeon is full of imagination when it comes to me and my various problems...granted, he saw me wide open and my pouch being rebuilt by Dr. C. so he knows more or less the ins and outs of it all which made his job easier.
But he has been able to do so many 'lap' surgeries on me that Dr C would have had to do open and saved me so much pain, convalecence and further complications.
I refuse to give up on my k pouch and am still pushing every failed j pouch I know to at least look into the possibility.
Sorry for the rant...must be the anesthesia.
Sharon
skn69
J Jasmine 2Member
Sharon, I'm so happy to hear this!!!! That's fantastic news!!!! I pray you continue to have success with this surgery. I too, am for the Kock Pouch....we as Kock Pouchers need to Advocate for it, so it remains as a choice to everyone. I have been very lucky with my Kock Pouch. I agree, with time everything changes in our bodies as we age, so I think our muscle tone may have something to do with the Kock Pouch stretching out. Plus over time, pushing in the catheter has to cause some wear and tear. I think this surgery is so wonderful and needs to remain in the picture for generations to come. Sleeping all night and emptying your pouch at your convenience, is giving the patient/person back their control of their body.......Major Plus!!!!!!
J
skn69skn69Member
I was 'pain free' (not surgical pain but that awful lower back/hip/sacroiliac/pelvic pain) for the first 16 days post op...I was seriously hoping that this surgery did the trick and that all of that awfulness was gone for good or at least for a long while...but it is creeping back slowly. Not sure if it the pain-block that he used on me or if when he picked up the pouch he reduced the tension on the whole region but some of that pain is coming back. (could be the fact that I haven't taken a tramadol in a week)
I'd say that I am at a 4/10 for now but fear that it is the increase in my physical activity that has brought it on.
I am back to walking, pulling buggies and house cleanning...(yes, I know that I swore that I wouldn't lift a finger for a month but I am back to work on Monday and cannot allow myself to stay in bed til then...need to get those muscles moving and the house back in shape...
I might just try to put less into my pouch to see if that helps...could be that it is too heavy and pulling on things in there.
Sharon
skn69
J Jasmine 2Member
You shouldn't be doing anything, I'd say for 6 weeks physically. Give everything a chance to heal strongly and stay in place.

I would think after moving your pouch up, that muscles and tendons may have been involved and they need to adjust to there new position and job. It may be from the new placement and new job they have to do. My thoughts. Good luck, and stop straining!!!!
J
skn69skn69Member
Woke up this morning with the pain at around a 6-7...not a good sign. My tube would not go in strait either and was 'locked out' until I could pee...that is what things were like pre-op. Up until this morning the tube went in strait/normally no matter what...I am getting that sinking feeling that the sutures didn't hold (he put in 2 rows of 3) and that sharp pain, like things were pulling on the sutures (which seemed logical), was just them letting go like the last time....I can stil feel 1 or 2 so it is not totally off of the wall again...but I am sure that there is a shift in position. Tubes do not lie.
I am back to work full time and a half tomorrow but now have Fridays off (just 12hr days the rest of the week!) so I will ask for an opacification to be done (standing) so that we can see exactly where the pouch is and how it is hanging....
Crap, I hope that I am wrong. If I am wrong and the pouch is still up then why is the pain back?
For now, back to very careful eating and light, light foods.

Sharon
skn69
skn69skn69Member
Back to work full-time tomorrow...not likely that I could function going through subways, tramways and horrible uphill walkways at rush-hour with my pouch hooked up to strait drain...let alone a (gasp!) leg-bag at school!
I did it for 5 months in 2009 and lived in mortal fear of explosions, leaks and having the tube pushed up into me during French rush hours!
I would rather not eat. That is my usual go-to solution...I intubate every other hour, push fluids and avoid solids.
I will wear a belt to hold my tummy tight and avoid bending...forget housework...hubby can dust and wash floors.
Doctors and hospitals were on strike over the X-mas holidays...back to work on Friday...back on strike tomorrow!
So no tests for another week...will book something for next week once people decide if they are planning to work or not!
In the meantime I had broth and mush for dinner and will go to bed early (before 2am)...and hope that the pouch behaves and allows me 6hrs sleep...it is going to be an awfully long week.

Sharon
skn69
J Jasmine 2Member
You could cap off the catheter and tie it in place with gauze. Put gauze around your hips and tape in place in a couple of places and tie around the catheter to keep it in place. That is how I have mine. Then it is in so you don't have to worry about getting it in and it will help keep the valve entry way straight. Curl the left out catheter so it is under the gauze with the cap in place.
J
skn69skn69Member
First day (1/2 day) back to work yesterday...survived the travel and morning but came home exhausted...and in Pain.
My right knee is seems to hate me and the pain in the lower back is back but my pouch acted fine.
Light dinner last night, mini snacks today for my 1st 12hr day in 3 weeks, and pain, pain pain in the lower back...if I didn't know better I would say that it is another kidney stone...but I highly doubt it. Everything hurts again and I think that it is just the pain of getting back to work and physical activity...
Don't know if the pouch is down again or not, that will have to wait until I see the radiologist but the sacroiliac pain is back in full force...Back on naproxin for the first time in 3 weeks.
ps. Doctor's strike on full force! They are demonstrating in the Streets! And they are planning on making it worse...the poor guys are earning only 23€/visit! ERs are closed too! Where do I live????
Sharon
skn69

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