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My pouch has not been anchored for the last 5yrs...the anchoring sutures let go and I don't feel like going back to O.R. to have it reattached (will be done with Dr C's recommendations for my French Laporoscopy surgeon) but I need to plan it for one of these days...
That said, my pouch goes into 'torsion' every now and then...it twists around itself (think:neck of a baloon being twisted)and the first symptom is that my tube does not go in strait but usually has to curve upwards and to the left towards my bellybutton. (occasionally to the right but that is rare)...the side effect of the torsion is that when full my stoma can leak stool or gas, cramp, pain and needs more frequent emptying...were hoping that it would scar into place but it hasn't.
I had to fly home for an emergency recently and the flight was misery with my pouch twisted and not emptying properly and I was very bloated and uncomfortable.
When I got home, by the 2nd night I was miserable so I took the Swiss ball (the huge Yoga inflatable ball) up to my room and lay down on it to work my back, rolling from side to side a bit, back and forth for about 1/2hr...Then suddenly my stomach felt like I had dropped in an elevator or rollercoaster...and I got nauseous and had to throw up...
I emptied my pouch and surprise...my tube went strait in...no twists, no curves....and stayed that way all week...no pouch problems at all...I had a happy pouch the whole trip...this is the f=st time in ages that my stoma is strait again....(hope that it stays that way)
Youppiii!
Sharon
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So Sweet Dpol,
For now I will try anything that gives me and my pouch a bit of relief...this seems to be helping both the sacroilitis and the pouch position...draping myself, back to the Swiss ball, seems to give me a measure or pain relief so even though it is not perfect it helps...
An alternative pain 'specialist' who does some sort of mental gobledigook to relive pain through hynosis couldn't get into my brain (lucky man!)...but we did establish that my level of pain runs at around 8 on a permanent basis...with flares that push it up to 10...he says that I sublimate my pain (push it into my unconscious where I refuse to acknowledge it) and until I do I cannot heal it...(!!!)..I figure as long as I keep it as far back there as possible then maybe I can survive it.
I told him that I need to heal the pain not my brain...
Sharon
Do not get me started on chocolate.....or ice cream...I can live, most of the time, without gluten because I have never really been into bread/Cake/pasta etc...but sugar? Never!
They would have to tell me that it is poison for me to consider removing it and even then....you are very couragous if you can remove it all...not in my lifetime.
Hubby says that I am now in love with the Swiss ball and that I may start to sleep on it...he may be right.
Sharon

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