Okay, it's been a crappy weekend and I just need to unload on people who actually understand. Okay, so the Jpouch twisted on me (second time this has happened) on Friday. It basically feels like a blockage b/c you cannot pass anything and you get those waves of cramping and nausea, plus it's just scary. So when I knew what had happened, I called my surgeon's office, he said to come down to the ER and have them page him so he could meet me there and examine me before he left for the weekend. So...I left work, got a ride, drove 3 hours to Nashville. When we arrived we told the ER ppl. the situation, but they were no help. They gave us the run-around and managed to be condescending and unhelpful in the process. Basically just acted like I had no idea what I was talking about-since my vital signs were fine I must not be in much pain or have much of a problem at all. They would not page my doctor no matter how many times we begged them to. So...I waited about 2 hours in the waiting room. My mom finally convinced some receptionist to page my surgeon and I gather he was pretty pissed that they hadn't helped me or paged him b/c soon after she got off the phone with him they got me in a room and the manager of the ER was kissing my butt apologizing for my wait, etc. So, my surgeon got two of his colleagues to see me as soon as I got into my room in the ER. They did a scope and got the pouch untwisted. Then my pouch started spasaming, which hurt pretty badly, so they gave me injections of a numbing agent in my anus...not fun, but it helped. So after that, I had a minor meltdown. It's just been a LOT the past ten years. Diagnosed with UC when I was 16, never in remission no matter what meds I'd take, lots of Prednisone, gained and lost 40 pounds b/c of the Pred. more times than I can count. Then decided to have Jpouch sugery, 9 months after that they discover I have Crohn's after I've had pouchitis and stricures. They get me on meds for the CD, I get a bit better, then the Jpouch twists for the first time and I go in for emergency surgery for that, so they discover my CD is not in remission and I get on Humira...which helps tremendously, but then my pouch prolapses, I get checked for that, things seem okay, then it twists again and here I am. So the real reason I'm stressed out today is b/c my surgeon is going to call me today to schedule a surgery to tack the jpouch in place so that it will not twist anymore. Let me just say that I love my surgeon, trust him and feel like I get really good care from him. However, the morons in the ER have managed to further screw up things, b/c my phone rings today, I think it's my surgeon calling to discuss the surgery, and it's a scheduling girl from the hospital telling me I have an appointment with a different surgeon (who I have never seen before but is in the same practice as my surgeon) on April 28. I say "Well, he is not my doctor, so I have no idea why I would have an appointment with him." The ER ppl. flipped my first and middle name, had me as having no insurance (which I have, by the way), so I guess they had me as a new patient? I have no idea, so I spent the morning on the phone with these ppl. trying to get this all straightened out. UGH! I am just supremely annoyed right now and I wish these people would get their act together. It's not enough we have to deal with being sick and the joys of multiple surgeries, but we have to deal with the impossible administrative errors of hospitals to boot. Sorry for the negative vibes, I just knew you guys would sympathize in a way my family and friends could not. Thanks for listening.

Liz, that sucks! I'm so sorry for everything you're going through. I know what it feels like to be taken lightly in an E.R. They often think because we're young that we're just trying to get in to get some drugs.

It's always got to be something doesn't it? Insurance mix ups and doctor mix ups just make everything else we're going through that much harder to deal with.

I hope that your surgeon is able to tack the pouch down successfully and you won't have to deal with these problems anymore.

I was diagnosed at 16 as well and 11 surgeries and 11 years later, here I am and finally somewhat healthy.

I hope things get better soon. Take care.

Sometimes I think the ER staff would argue with you over the fact that you no longer have a colon, just because don't have an ostomy!!!! I find it amazing that the lack of knowledge about j-pouches, and intestines in general, extends right on into the emergency medical community.

I was glad to hear that your surgeon read them the riot act . . . Now everyone should get treated like you did afterwards, no matter what, eh?

I do hope things work out better for you. Bad enough having a twisted gut, but having your insurance questioned, your doctor's orders ignored, and enduring the ignorance of medical "professionals" can be quite exhausting. A big hug being sent your way . . . (((((Lizz)))))

Vent away you deserve it. I have had both good and bad ER or hospital stays. Thank goodness my husband is a good advocate. I get pretty ugly when I am in pain. Then I end up falling all over myself apologizing. You are correct when you try and tell people that you have no colon they look at you as if you are from Mars. I a usually asked when was the last time I had chemo. Then I have to explain that I wear my hair short because I like too!!!
I am so sorry for your struggles, pain, and frustration. Keep us posted hopefully you will get the care and relief that you deserve.
Jennifer

When I had my j-pouch I was traveling in CA for a friend's wedding and had to go to the ER. The dr there told me that it wasn't possible to have my colon out and small intestine reconfigured...Kinda scary...made me really glad I live in an area with a strong medical community.

The ER thing is always a problem - I'm glad your surgeon is so helpful though. That is what really counts when you have problems, that you trust your surgeon and that he/she responds to you. Sounds like you have that, so I'm sure your situation will get straightened out. Just sorry you have to put up with this other stuff along the way.

Thanks for the replies, guys. It's been a rough week, to say the least. I had the surgery on Tuesday. He cleared up some adhesions and stuff in addition to tacking the pouch down. I was doing well so they let me out of the hospital, but I dunno...I'm just depressed. I'm really worn out with all this. I'm tired of having surgeries, I'm tired of being sick, tired of my body not working the way it is supposed to, and just tired in general. Tired of being surrounded by people who don't understand even a drop of what we go through. I just feel like I'm starting from square one again. It's so hard to do anything b/c I'm so sore and weak from the surgery. I walk like an old lady (my 25th bday is, Tuesday, by the way...), I can't work or support myself. I just feel worthless and exhausted and semi-hopeless. I do know things will get better, I guess I'm just sulking now. Thanks for listening. I do appreciate it.

OMG!!!! For hospital/ER personnel to not realize there are surgical procedures which allow us to live without a colon AND without a colostomy/ileostomy is really scarey! I'll always carry the name/phone number of my colorectgal surgeon with me! He will set them straight!

Aye, I can relate. I am 21, disabled now. Its hard to go from just getting on your own and doing well to not being able to take car of yourself. I hate being second guessed by people in the ER who are ignorant of what we have to deal with and of how horrible IBD is. I hope you feel better soon with less adhesions and not having to worry about you pouch twisting. Take it one day at a time, there is light at the end of the tunnel, it just got a little longer. Well wishes and good vibes coming your way!

Hey Liz, From your above post i am lead to believe that today is your birthday....so Happy Birthday! Perhaps you're not feeling too happy but maybe year 25 will be a lot better than 24! I turn 25 next month too, a quarter-century, how did that happen?? Lol.
From your posts it sounds like having the pouch twist is very painful and scary, so I guess the upside to this surgery is that hopefully your pouch will now stay in place and you will not have to worry about it twisting & turning anymore! It's nice that he cleared up some adhesions while he was in there as well.
Anyways, I just wanted to say that I'm thinking of you. I hope that you heal well from your surgery and can get back to life. It's hard to be sick, especially when it seems to go on-and-on-and-on-and-on. Just keep going, one day at a time. It's tough, but hopefully it will get easier, and you will realize how precious and awesome it will be to feel good. Take care

Happy birthday Liz.

It's good and natural to vent. Better to get out your frustrations then to bottle them up and have the cork shoot out. This is a good place to do it to, so many here know exactly how you are feeling, and we are all pulling/praying/thinking/crossing our fingers for you.

Just keep the knowledge that things will get better.

I will pray for you.

Liz, Happy Birthday! You made it this far, you will persevere.
You are going through a rough time. It is to be expected. You have had radical surgery.
Your body needs time to heal. It will take a good year. Take it slow. Don't be rough in yourself.
Do what you can. There will be good days and bad days, setbacks and then eventually you will get strong again and feel like your old , I mean new old, self again.
Really. It may seem out of sight but this too shall pass.
Better days are ahead.
I believe you are exhausted more than depressed. Discouraged? Frustrated?Sleep does wonders. get it while you can.Your body needs sleep to heal.
I am glad you are here to talk about how you feel.

Did I mention you are gorgeous too!

Hey Lizz,

First off Happy belated Birthday. I hope things are looking up for you.

More importantly, hang in there, we all know how rough these issues can be. I personally know how hard it can be to feel the pull of depression when things just won't seem to smooth out and you can't seem to catch a break. I used to describe it as feeling like you're bleeding to death... it's just so draining, and even the small bumps in the road feel like major obstacles.

Anyway, I hope your surgery went well and you're recovering nicely. As Holly said, being exhausted definitely makes things worse, so rest when you can. And if possible have visitors that will raise your spirits. Being surrounded by incompetent medical personnel can definitely make things feel hopeless, but having a friend around that you have to keep telling to stop making you laugh because you don't want to rip out a stitch can do wonders.

Good luck to you, and know we're in your corner pulling for you.

Hi ya'll,

Well, the birthday came and went, and brought with it healing and the return of optimism I am moving around quite well now, minimal pain that is managed by my pain pills. I think a lot of the initial depression was the anesthesia, stress of surgery, etc. Friday was the worst day. I really did not want to get out of bed, but my brother came over and was so sweet, and I finally got up and ate and moved around. The past few days I have felt more like myself-sassy and feisty. I had a great birthday! One of my dear friends came over and brought flowers and books and jewelry. All some of my favorite gifts to receive. So we had cake and such outside. It was a gorgeous day...best birthday I could have hoped for.
Thanks for your responses. I am so thankful for this site, and for all of you.

Hi Liz,

Happy belated birthday.

I'm so glad that your birthday turned out better than you thought it would and that you are feeling much better now. Hopefully this was the turning point and you will get stronger and stronger. Life is on the up!

Take care.

Shell