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Posted 5/30/2013 12:31 PM (GMT 0)
I'm finally at my wits end enough to have told my GIs office yesterday that I am NOT going to the 3rd referrel in Rochester.  I said that I want to have the surgery & be done with this once and for all.

My GI typically calls me at 8:30 pm - no call last night....  wonder how forceful I'll have to be later when he does call....

Posted 5/30/2013 1:32 PM (GMT 0)
I reached my end with this also. I am scheduled for June 17, permanent ileostomy. I hope to be one of the lucky ones that wake up feeling better then when I went in. This disease plays on your mind, body and soul. I think you should be pushy and get what you want. After all you are the one suffering, not the doctor.
Posted 5/30/2013 7:22 PM (GMT 0)

musicmaker 516 and Kim2006, I was exactly where the both of you are right now--just two years ago.

In fact, two years ago this very week my family was at Disney World and my poor hubby had to push me around in a wheelchair the entire time because I was just so anemic and weak that I could not make it on my own.   I was popping Imodium like candy hoping and praying to make it through the long lines without having to jump ship and run to the bathroom, or much worse have an accident.   By this point, I was about 90% incontinent, so an accident was normal for me.   We had free meals and I was so sick that I could barely eat anything, which was an entirely new thing to me having never experienced that in my lifetime.

I made it through the vacation and the long ride home, but two days after we got home I landed in the hospital and got a temp fix until I could have my surgery, which was on July 14--my Independence Day.   I was actually counting down the days to my surgery with almost the same anticipation as a child at Christmas, and I am not lying about that.   I was done, doNE & DONE !!!   My surgeon asked when I wanted to do this and I said, "yesterday!"

I wish you both the best of luck with your surgeries and adjusting to your "new & improved" life.   I have never once regretted my decision to have surgery and I am not "lying" or "covering up" or "sugarcoating" my true feelings.   For me, it all boiled down to QUALITY of LIFE, and I had none.    I know you both have had some time to weigh your options and that is extremely helpful when you can make an informed decision.  As you know, the folks on this board are the best to help with any situation that may arise in your adjustment period.  I don't know what I would have done without this board :-)

Posted 5/30/2013 7:30 PM (GMT 0)
^^ listen to CrohnieCJ

MM, all I can say is I wouldn't want a GI who was so pigheaded to continue to treat me. You might need a GI for infrequent follow ups or Upper GI stuff (like heartburn etc) after surgery, but I would probably still want a different one. Your surgeon makes the final call on performing surgery so if you are truly ready to go for it, I don't see any reason to be afraid of doing it against the wishes of your current GI.

Also, I don't know much about Sjogren's but I did have seronegative arthritis during UC and it's 100% gone now. I hope you have the same good luck!!
Posted 5/30/2013 8:42 PM (GMT 0)
Both of you are perfectly free to "jump ship" and get surgery. If you are done with drugs and the roller coaster, then your GI shouldn't be so stubborn (some GI's might see it as a personal failure).

I encourage you to find some good Colo-Rectal surgeons. Be aware that it might take 30 days for you to get your records transferred. They are your records though so your GI's office shouldn't give you any issues, however they might drag their feet for the maximum time limit.
Posted 5/30/2013 8:47 PM (GMT 0)
I never even asked my GI for their final opinion once I decided on surgery... Just dealt with and scheduled with the surgeon's office. Did see my GI the other day, first time sans colon, and he said I made a good call, and we agreed on annual flex sig with biopsies for my rectum so long as I keep it (was officially doing 3 step j pouch but I am now inclined to stop right here) , which may be a looong time unless it gives me too much trouble.
Posted 5/30/2013 9:45 PM (GMT 0)
You don't need your GI's blessing to have surgery. It's your decision and no one else's. Good luck!
Posted 5/30/2013 10:07 PM (GMT 0)
Kim2006 - I am hoping to have the option of June 17th (after preschool picnic, pre-k round up & 2 weeks before my 4 year old's first soccer game)

ChronieCJ - you are a trooper! I've had some accidents lately, too - no fun.

Pluot - no arthritis! Woot! That would be great! My second consultation landed in the midst of a 4 day reprieve from my seveere symptoms and at that appt, he felt I should give the meds (Humira) more time & that the GI should add Imuran. The GI instead added cortenemas for the 4th time (which always make me worse). He sure is pigheaded & takes this as a personal failure.

ActiveUCer - I actually recieved my records today in the mail. Funny - he wants me to go to Rochester & the secretary sent me a copy of my records, because she saqys they tend to misplace them!?!?!? That gives me confidence in a place I don't want to go anyhow! LOL

Probiotic - how's the stoma going? I am planning on a complete proctocolectomy with permanent end ileostomy. Just don't want the chance of the complications and long process with a pouch. (though for most it's not a problem - I have rather bad luck)


THANKS ALL for the input. I still haven't heard from the GI & tomorrow will call the surgeon and request that he schedule it. Will kepp you all updated and thanks so much for the support and encouragement.
Posted 5/30/2013 11:36 PM (GMT 0)
I guess some GIs for whatever reason don't fully embrace the surgery thing but when a patient has made up his/her mind then it really is their responsibility to help and work with the CR surgeon and should already have a good one to refer you to.

We found the opposite with my husband's local GI who felt much more comfortable referring my husband to Mayo Clinic after everything was just not working. He met with and was cared for by a GI @ Mayo who thought not long after treating my husband surgery was the way to go. It was my husband who delayed and it took him a few years to "wrap his head around it" and finally decided he was sick and tired of being sick and tired after trying some different meds and failing remicade under Mayo's care.

The Mayo GI worked in conjunction with the CR surgeon there and it was very smooth and harmonious which is they way it should be for you. Hopefully your GI will come around and as suggested if he doesn't then maybe it is time to find another one. It is so important for the two of you to have a "good" relationship and be on the same page concerning your care.

We are a lot older (in all probability) and there have only been a few times I have encountered a doctor that I just felt we didn't click with and just went to a different one. I personally can't deal with having a doctor I am not totally comfortable with and feel I can't ask questions of. I do understand (unless it is an emergency however) it may take a day or two for a doctor to get back to you sometimes and would not hold that against him/her.
Posted 5/31/2013 12:10 AM (GMT 0)
Talked with him & he said, OK. I'll have them call Buffalo tomorrow. It's been a rough rectum night & I'm soooo ready for this >:/
Posted 5/31/2013 10:59 AM (GMT 0)
Hope you can get scheduled soon. Once I'd finally made the decision, I was eager to just get it done. Hang in.
Posted 5/31/2013 11:11 AM (GMT 0)
Good luck to both of you. Musicmaker, like you, my GI was opposed to the surgery. I ignored him. He hasn't returned my calls since I decided to have surgery. And I say good riddance. The decision is yours and yours alone. And when your quality of life is that bad, it's a good decision.
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