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5 replies

Had a CT Scan

vanessavyvanessavyMember
Well I have issues and nobody could figure out why I was having so many pouch problems with nothing showing up. anyway short story I had another CT scan and there are a lot of things going on that I won't go into since it isn't realted to this question but I have a very large collection of fluid in my pelvic area so of course the Cleveland Clinic has journals on this that it is common to develop fluid if you have FAP and UC after a pouch is made up to a year later post op and it is just drained. If it reoccurs you just drain it again.

So anyone have this done? My GI hopes this might be the issue that is causing me so many problems. I don't believe anything until I see it since I hear so much with my disease.

I go to the Cleveland Clinic and see Dr. Shen 9/25 at least for more opinions. I have a very busy month of procedures in September. Want the pouch to be perfect so I can just deal with my tumors and polyps from now on Wink My valve is completely twisted and I can't use the 3 hole catheter anymore, stuck with the bullet tip since it wiggles in there but it drains crappy! I can only hope this big thing of fluid is putting pressure on it and it will be magically fixed with no big surgery..
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vanessavyvanessavyMember
Yea I am over doctors lately, Nobody wants to claim the fluid as of now. Colorectal guy locally said it is GYN related, my GYN said with that much fluid and perfect ovaries it is not GYN related. I mean CC has done articles on this that people with UC and FAP build up fluid, thy have no explanation for it but they drain it. Either way I am not getting help locally so I will just wait and see what these people say at CC. I don't get damn doctors sometimes.

Otherwise I am doing really good since I am on Omnicef. Lately I go to the bathroom 2 times a day. My valve is funky but I am able to deal with it and it isn't interfering with my life to much just takes me a bit longer to poop and working out. Lifting weights or even walking fast sometimes makes it tough to go after. Not sure if it is a muscle thing at this point since the tighter my abs are I think it kinks more. Still wouldn't trade it for anything else (except a good colon).
skn69skn69Member
Vanessa,
With a kinked valve you should not be emptying only twice a day but relieving the pressure more often because it puts 'inside to outside' pressure on the valve and can cause a real problem getting the tube in. Next, you are absolutely right, the more you lift the worse it is going to get because it may be the muscles around your stoma that are aggravating your kink or worse a small, undetectable hernia that is worsening due to the weights so you should really lay off for a while or keep to very low weights.
I have been there and done that and if the kink worsens you may end up unable to intubate at all and be stuck with a strait drain so be kind to your baby pouch.
Sharon

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