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Hi my surgeon retired years ago and I was bounced around till I got an experienced surgeon who understood the kp she has also retired and her replacement has inherited me she knows nothing of the kp but is very good in her own right. I'm not due to see her for a wee while and have not been without my pouch problems through the last 11 years twisted valve surgical mesh/tape coming undone pouchitis etc.. but my problem lately is I have a pressure from the right side that has distorted my valve more than ever pushed it way over to the left intubation is so much more difficult even a 12fr nasal gastric guide wouldn't go in for many hours then when it did the larger catheter wouldn't go over for a long time. I put my finger in my valve and felt a swelling pressure pushing from the right outside the valve moving the valve over to the left quite firmly. Iv had bit of gradual pressure there for months but now it's more pain in my right side at the side of my valve pouch area is gripping tugging aching I eat I feel full after a small amount my back aches more than usual I'm thinking its my ovary thats swollen because of the area the swelling is but don't know what else it could be anyone have anything similar or have an idea what it could be? Spoke to my gp got a blood test and to get an ultrasound to check my ovaries. I am 50 my periods stopped almost 3 years ago. Thankyou for reading and any advice is appreciated.

Maisy

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Thank you Kim I didn't consider a hernia I will mention this to my gp can it be seen on a scan? My new surgeon knows nothing about the kp I'm hoping she can repair it if needs be infact there is no kp surgeon in Scotland there was one in Edinburgh but my previous surgeon says she got no replies from him about another patient. It's good to have input instead of me guessing.

Maisy

If it is the case that it needs a repair (I just read that surgical mesh is sometimes used to repair plus the success is pretty low)  I think it would be futile i had surgical mesh removed some years ago after it caught in my tube holes when removing the catheter it had made its way through into my pouch but still attached partly to my flesh so I was pulling my insides out it was a nightmare  I'm lucky to have gotten this far I guess. It might be time for removal especially as there is no kp surgeon and you say there is a lack of in the USA too I didn't realise this.

Maisy

Last edited by maisymoo

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