So my primary doc is making me go see an IBD specialist at Mayo Clinic. Yeah, I'm thrilled, love new places and new docs. So I jump through all the hoops, transfering records about a hundred( ok so I exagerate a bit) releases of information, back and forth. Let me tell you it drives them nuts when I have them send all my faxes to the local hardware store....ahhgg What about HIPPA?! Hey, I live in a small town, block and one half long. Everybody knows everything anyway. So I finally get my referral approved, and guess what, I have a new diagnosis Irritable bowel syndrome. That from the insurance medical director, Ok, whatever,I still go to mayo on Monday.
Thanks for letting me vent a bit, anxiety level starting to get to me a bit.....
LoriP

Wouldn't it be irritable pouch syndrome if you have a pouch? I guess if it gets you your referral that's all that counts.

kathy

except no one has suggested nor have I considered my pouch irritable....My primary is sending me because he's just family practice, ileal pouches are beyond his ken.He needs more info.
LoriP

Um, with prior diagnoses of UC and PSC, I would think those would take the front and center on the diagnosis page, not IBS! But, whatever makes the gears grind I guess. Just make sure that when you get to Mayo, they get the full rundown on your history. I know, they got all your records...but that does not mean they actually read them!

Jan

I'll do my best, I have no idea what to expect and when my anxiety level gets to high I just shut down or worse (PTSD) snap.My primary is writing a summary letter...if they don't bother to read the rest maybe they can manage a summary. I wish someone could tell me what to expect.Anyone been to Mayo? I'm to see a Dr.Sunanda Kane who used to work out of Chicago.Now at Mayo in Rochester ,MN.
I think I would like them to address the PSC, help me figure out when I'm dealing with pouchitis, I don't know. Mondays coming , it is what it is I guess.
LoriP

Good luck Lori! I would also (yourself) type up a one-page summary, just bullet points, of your diagnoses, dates, treatments, etc. and of course all of your questions. Take a pen and that way you can be sure to cover it all with the doctor and write down the doc's responses/answers. You won't remember it all when you leave, trust me. If the doc is going too fast, ask him/her to hold on while you finish writing. This is very important - you are going all that way to get critical info. You need to make sure you leave with what you went for. Are you going alone or is someone going with you? Sometimes they can help take notes too.

Muggette has a good point. My husband always comes with me, and it helps to have a second pair of ears. Somtimes the stress of going to a new place mixed with what they are telling you, can cause you to shut down for a minute or so, and having someone there will help.

Jan is also right, I recently went for a second opinion, took all my test and surgery results, and he barely looked at them. I actually had to point out some of the results so that he would understand what I was saying. You should take a list with you of all the important points you want to talk about and start from there.

Kaboom from the site goes to Mayo and also has PSC, so he would be a great person to contact. Maybe try to send him a PM, he may be able to put your mind at ease.

Good Luck on Monday, I'll be thinking of you.

janna

Thanks! You guys are great...it did say in the papers they sent that my husband would not be allowed to go in with me. I would think that should be up to me? But I will try contacting Kaboom, I do better if I know what to expect.
LoriP

Lori, I think it's up to you whether or not your husband goes in with you. My husband would wait outside while I was examined, but he always sat in on the discussions. If it would make you feel better, I would definitely insist on it, I know it always helped me.

janna

Lori,

It sounds like we have had some very similar medical things in our backgrounds. And I have even consulted with the surgeon who I think did your S pouch. There are several specialists that can work through the issues you are having with your pouch and also to checkup on your PSC. I am participating in clinical trials through Mayo Clinic as well, and you might want to ask about that when you are there.

I sent you a PM about a lot of this stuff, but I wanted to set your mind at ease about your husband attending with you. Mayo is very accomodating about this - my wife was allowed to be everywhere with me my entire time at Mayo with the exception of the operating room for my surgeries and during my scopes. She was even down in the "meat locker" pre-op rooms where the anesthesia was administered and during any of the physical exams.

I'd be happy to answer any specific questions that you might have.

Rick

Lori,

I have always gone with my husband for his appts. They only ask me to step out when they actually do something invasive, like scope him. I would just ask that your husband come in with you for everything except that, and that the doc hold off on commenting or providing info during the scope until your husband is back in the room and can take notes. It will be hard to remember what the doc is saying with something up your butt!

Having someone in with you is YOUR CHOICE, except as I said for actual procedures (there I think they can insist due to laws to protect themselves, etc.)

Good luck!

I know how you fell my docs. from like all 7 years ago mistdionost me beacause they thought I had cronse but I really had calides its so horibbal they could of done it 7years ago but they did it beacause they mest -up I guess its just life.