Hey all. Well, the saga continues. I just got home from the hospital. Woke up Friday morning around 3am w/ horrible cramping pains. Could not go to the bathroom-at all. Called surgeon and was told to come in to ER. My mom came to get me and we made the 3 hour trip to Nashville. Admitted to ER. My surgeon came by to check for stricture-no stricture. Had CT scan that showed a stricture or a "twist" higher up in the pouch. Had emergency surgery to dilate, but turns out the pouch had twisted on itself. Apparently very rare. I didn't make scar tissue that holds the pouch in place. If this happens again I'll have to have more surgery to "tack" the pouch down. Feeling really tired and sore and bloated. I'm passing stuff, so I guess everything is okay. I'm taking Loratab for the pain. Having trouble eating and taking my regular meds. They did a scope at the same time and my Crohn's is mild to moderate, so not sure how they will treat that. Anyway. Just wanted to let you guys know. Please keep me in your prayers!

Liz

I'm praying for you Liz. Things will turn around for you.

Johnny

Hi Liz,

I'm so sorry you are having problems. I think you should PM Janna because she has recently just had surgery to pin her j-pouch back to her tailbone for the same reason as you have described. I'm sure she will be more than happy to give you advice and support.

I really do hope that you won't have to have surgery, but at least you know there is a fix if the worse comes to the worse.

Hope you feel better soon. Keep us posted.

Shell

Liz,
Glad you are home. You were probably really uncomfortable, sounds like it really hurt. Did they tell you the chances of it happening again? Hope you pouch learns to stay put and that you feel better quickly.
Cheryl

Hi Liz,

I'm so sorry to hear about your latest problem - I suppose your body was trying to tell you things were'nt quite right (and there we were advising you to drink water, do yoga etc.)

Anyway, I hope things start improving for you soon I wish you the best of luck - you sure deserve a break.

Lizz,

I am so sorry you are going through all this. It seems like it will never end, huh? I just got through (or am getting through) the TD-and the surgeon says I have a slight twist also. Was your a 360? He said mine is minor, but I have no idea what that "means" He says my pouch is more "free floating" like yours. I guess, not that rare after all.

He is so dismissive and non-compassionate. He claims it may actually help me by cutting down on the # of bowel movements I have each day. And, when I asked 1 question about it-he told me "not to perseverate on it"-Mr. Bedside manner. Doesnt sound right to me! Plus, I don't feel right (although I'm only 2 weeks post TD). Sounds like I need another opinion before I end up in the hospital like you!

I really hope you start healing and that thing stays where it should-Nikki-thanks for the reply to my other post-directing me here.

Hey Laurie, yeah girl, I know what you mean. Sometimes it just feels like this is how it's always gonna be. I am honestly just getting exausted w/ this after 8 years w/ UC, then the surgeries, now Crohn's and all that comes w/ it. Mostly it's just how much it jerks you around physically and emotionally. I'm looking forward to the next upswing though! How are you feeling? Sounds like you need to be shopping for new surgeons, girl. Where do you live? Mine is a really smart, gifted surgeon and also an amazing man. Very easy to be around, listens, supportive. His name is Dr. Wise and he's at Vanderbilt in Nashville if you are in that area at all. I hope things get better for you soon, babe. Hang in there.

Liz