So my exploratory surgery is in 6 days, on the 14th and I've been pretty excited about the possibility of FINALLY finding out what's been causing my pain for two year, but now I'm getting really scared. I just got off the phone with scheduling and got the time, etc. and it's so much more real now.

I'm scared that I'll be in the hospital and away from my family for a long time. She said 5-7 days, which is longer than with my huge 9-hour step one (this one is expected to be maybe 2 hours). I'm hoping that's an over-estimate.

I'm terrified that they won't find anything in there and I'll wake up with the same pain and no answers.

Or that I'll somehow end up worse off than I am now.

I'm also scared that maybe she'll just do an ileo as a shortcut to see if it fixes the problem and not fully look around. I know that's unlikely, but who said all fears are logical?

My other surgeries were relatively uneventful and now I'm petrified of complications, infections, ileus, obstructions, you name it.

What if I'm doing the wrong thing and I end up worse off and then can't play and take care of my family and my son like I want to??

I plan on writing up a note for the surgeon because I get flustered and emotional under stress. I just want to list my main points for surgery:

1. IF a temp ileo is needed, can it be an end ileo and slightly lower than my last one? (last one was right on the belt-line. Anyone know if I'll have trouble getting a seal from the old ileo scar?).

2. Investigate down along the left side of the pouch as much as possible (she said this may be difficult with the pouch in place).

3. Investigate the lower back abdominal area, basically inside my left buttock as that is where the terrible ache and pressure is that gets worse when I sit on that side.


Do you think this will ok to do? Leave her this list? Also, does anyone know if an end ileo causes more risk of stricture at the point of anastimosis (upon takedown) due to the incision going all the way around instead of only part-way?

THANK YOU FOR LISTENING!!!!

Erin

Erin, I think it's fine to make a list of your thoughts for your surgeon. Just make sure to get them to her before the day of surgery. Before surgery, she may briefly look at your chart, but she will mostly be scrubbing up and probably will not see you until you are on the operating table. So, fax it or take it to her office yourself and make sure whoever receives it knows that you need your surgeon to see it soon. This way if she has any questions or comments for you, she can call you to discuss this in person. Have you already had your final pre-op visit? If not, that would be the best time to bring your list.

As far as end or loop as being better or worse for strictures, I don't think there is much difference, but I don't know for sure. It would be a good question to ask.

Jan

Hi, Erin. Hang in there, girl. I hope you are able to get some answers soon. I too have that awful lower back/hip/buttocks pain on the left side. I have no idea what causes it, theories, but I know it's pouch related. It's certainly no fun. Good luck to you and let us know how things go.

Liz

I talked to you a lot and Pmed you so I wont go on telling you the same things again .. Just good luck and cant wait to see your life come back to you!
As for an end... My Dr said it depended where he can place he illeo and what my insides looked like... Thats why he marked my left side and I made it a point to tell him I want a end Illeo and I am not looking to ever go back to the pouch.
The left side was great cause it was untouched... he was able to go low on intest and gave me a end.
My loop was easy to deal with but the end is so simple to me and so easy to care for. Mine sticks out about a good in or so (bit more) and is so simple to handle - been2 + months for me and the end and I feel better then I have in 2 years... I hope the best for you and you will be great!
Pm me if you have any more ?

Erin, waiting is the hardest part. I was a wreck before my last surgery. I'm sure your surgeon will make sure to check everything, espcially with your history. I hope she finds something easy to fix, and you have a quick recovery. Good Luck,

janna

Erin, great idea to give the surgeon a list. That's what I did my last visit to mine and I was surprised at how much he liked it. He asked to keep it so he could look it over later. I plan to do this for every doctor visit I ever go to again.
I will be thinking about you and hoping that you get through this and they figure it out.
Good luck!!!

Sarah

Hi Erin,

I think it's a great idea to make a list. I have always made lists for all of my doctors whether it's my GP, Opthalmologist, ENT doctor, GI or surgeon. I am like you, I always get flustered and emotional so if I have a list of questions that I can focus on when I see them it helps me stay in control.

Good luck with your surgery. Give us an update as soon as you're able.

Take care

Shell

The list is great. Then you don't forget anything. I gave a list to the nurse right before I went into surgery and asked that the doctor look at it and come talk to me before he cut. He gladly did that. Good luck!

It seems more and more people are listing this back & abdominal pain. I'm curious to see what my sed rate is at the end of the month to see if it's pouchitis and/or cuffitis still active. I'm suspecting scar tissue/adhesions may be the problem. The pain is ongoing/chronic. My removal was 2002, and I'm getting tired of this. I can't take nsaids, of course, am already taking Fioricet for migraines (which doesn't touch the back pain). I wonder if I'm going to have to get on more meds, as if I don't take too many already

Hey guys! Thank you so much for the support!! I don't know what I'd do without you because no one else truly understands. My husband is wonderful, but you know how it is.

I don't have any more appointments before surgery to give her the list so I guess I'll just take it in the morning. I also made two diagrams on the list showing EXACTLY where my pain is.

Of course I started yesterday with a horrible sore throat and have felt yucky today. I got the flu the night before my surgery before and had to cancel it. I'm hoping I can kick this cold over the weekend but is there any chance they would cancel the surgery just because of a cold? The last time I had a fever but I doubt that will happen now. I figure I've got four days to get better and I'm determined to do it!

Thanks again guys! I'm still nervous and scared, but I just have to hope for the best.

Erin