Hello, this is my first post. I just joined today. hello all! Glad to be here. My J-pouch fell on to my pelvic floor and kinked up into my spine falling on my bladder. I live in an agony that is inhumane. Our system is so impersonal and it's taken me over a yr to find a surgeon. The J-pouch fell after i had a total hysterectomy. Has anyone had this happen to them as well?

Original Post

No but that is such a difficult event - I have wondered how hard it would be to have a hysterectoy and now I know - when is your surgery?

I don't have any experience to share but I just wanted to say welcome to the board and I hope you get the help you need soon. 

I'm very sorry to hear of your difficult situation. Living with pain is inhumane. I hope you can get help soon. Do you have surgery scheduled?

Thank you Kushami. I have singed a consent for surgery, but it is not officially scheduled. They want the stiches to heal from the original surgery 12/11/19. If I had to guess, and I do, it will be in the third week of January. Thanks again, Brian 

Kushami posted:

I'm very sorry to hear of your difficult situation. Living with pain is inhumane. I hope you can get help soon. Do you have surgery scheduled?

Yes. I just spoke with the surgeon's office. They want me to come in asap so that they can help me to feel as good as I can before surgery. They called it, 'Tuning me up." Believe me I need it. I'm nutritionally compromised, battling w starvation and in constant, mind altering agony. 

Kushami posted:

I'm very sorry to hear of your difficult situation. Living with pain is inhumane. I hope you can get help soon. Do you have surgery scheduled?

I don't have it scheduled but the surgeon just called and said they wanted to hospitalize me to get me more comfortable before the surgery. Si I'll be in the hospital. I am hugely relieved. I need bowel rest, am chronically dehydrated and am in severe pain. Being hospitalized is an answer to my prayer.

Kushami posted:

I'm very sorry to hear of your difficult situation. Living with pain is inhumane. I hope you can get help soon. Do you have surgery scheduled?

I've been living like this for about 20 yrs. I'd been telling drs that my j-pouch had moved and that it felt like it had fallen on to my pelvic floor. Every dr said, that's not possible. Then I went to the Cleveland Clinic and they confirmed what I'd said plus even more damages.

I am going down to the hospital on Tues to be admitted and then when they feel I am up to it they will proceed with the reconstructive surgery.

GherlFriday posted:
Kushami posted:

I'm very sorry to hear of your difficult situation. Living with pain is inhumane. I hope you can get help soon. Do you have surgery scheduled?

I've been living like this for about 20 yrs. I'd been telling drs that my j-pouch had moved and that it felt like it had fallen on to my pelvic floor. Every dr said, that's not possible. Then I went to the Cleveland Clinic and they confirmed what I'd said plus even more damages.

I am going down to the hospital on Tues to be admitted and then when they feel I am up to it they will proceed with the reconstructive surgery.

I'm so glad to hear the Cleveland Clinic diagnosed your problem. I have to admit that I fantasise about going there to get my pouch problem fixed if I win the lottery (I live in Australia).

It sounds like they are taking good care of you and you will be able to get "better enough" for surgery soon.

I wonder if while you are there you might take advantage of any counselling or support they have for patients. I've had minor chronic pain for six years and talking it over with a sympathetic counsellor who understands pain has been useful occasionally, if only because they know what you are on about. Family and friends can be sympathetic, but unless they have had chronic pain they just don't "get it".

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