HealingWell
Search Close Search
☰

Refused Colectomy

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/13/2012 8:19 PM (GMT 0)
Wow. Just wow. I really cannot believe how terribly they're treating you!
Posted 6/13/2012 8:37 PM (GMT 0)
You will be so much better off getting out of there. Doesn't sound like a very caring or good place at all. I went thru several doctors until i found one that really cared and got me on the right track to being well again. Wishing you the best....you need some relief.
Posted 6/13/2012 9:07 PM (GMT 0)
ByeByeUC,

Did you have to use a lot of prednisone before surgery? If so, were you able to completely come off of prednisone after surgery? Endocrinologist feels that even if I have surgery, I will have to remain on a maintenance amount of about 7 or 8 mg for life, he said my adrenal glands will probably never produce cortisol again. It's not a problem if I do, as long as I'm not on a high dose I'll be happy.
Posted 6/13/2012 9:21 PM (GMT 0)
holy crap qsam6 your whole situation just seems so wrong, dump this doc, get some current info on your options from at least 2 other GI docs, then go from there.
And I agree with previous posters -it's all about quality of life, but first get a clear picture on the current state of your UC.
Posted 6/13/2012 10:36 PM (GMT 0)

qsam6 said...
ByeByeUC,

Did you have to use a lot of prednisone before surgery? If so, were you able to completely come off of prednisone after surgery? Endocrinologist feels that even if I have surgery, I will have to remain on a maintenance amount of about 7 or 8 mg for life, he said my adrenal glands will probably never produce cortisol again. It's not a problem if I do, as long as I'm not on a high dose I'll be happy.

I was on and off of high doses of prednisone before surgery but I had been off of it completely for about a year before. I was steroid refractory so I only responded to high doses of prednisone so I couldn't stay on it for obvious reasons. I was on Remicade the year before surgery so when that failed I consulted with my surgeon. Two weeks later I was in the OR.

I honestly never heard of having to stay on prednisone indefinately....even a small dose. But I'm not a doctor so who am i to say. I have chatted with many j pouchers and I don't know of anyone who had to stay on prednisone afterwards. Well at least not for very long after. Most of us are completely drug free.
Posted 6/13/2012 10:54 PM (GMT 0)
I'm very glad you will be getting your records and that you have an appointment with a new GI at Mayo. I have not experienced a doctor so far removed from the Hippocratic oath of "First, do no harm." And cannot understand how other doctors take this doctors orders instead of you who are asking for surgery, which is reasonable. I hope Mayo can give you better treatment and some respect.
Posted 6/14/2012 2:43 AM (GMT 0)
I was on prednisone for 2.5 years before surgery and I was successfully able to get off. I know another jpoucher who was on it straight for 20 years and she too successfully got off. You will too.

Sue
Posted 6/14/2012 3:11 AM (GMT 0)
suebear,
That makes me feel better, I would like to come off all medications.
Posted 6/14/2012 3:30 AM (GMT 0)
I'm glad you suggested for me to request my records from GI doc, not only am I getting my records, I no longer have to deal with her anymore; 2 problems solved :)
I've heard nothing but good things about the Mayo clinic, so I am looking forward to getting there; which will be this Monday.

imagardener2 said...
I'm very glad you will be getting your records and that you have an appointment with a new GI at Mayo. I have not experienced a doctor so far removed from the Hippocratic oath of "First, do no harm." And cannot understand how other doctors take this doctors orders instead of you who are asking for surgery, which is reasonable. I hope Mayo can give you better treatment and some respect.

Posted 6/14/2012 1:43 PM (GMT 0)
I've was on 60mg 3 weeks before surgery and had been for a few months, and went in on 20mg. But for 8 years I had been on and, mostly on, steroids. It may take you longer to wean off them, since you've been on them so long. And speaking from experience, don't just quit taking them, no matter how tired you are of meds. I was so excited after surgery that I was off all meds, that I didn't want that less anymore, so I went from the 30 they sent me home on, to nothing. I was so sick!

Anyway, I think its great you have gotten a new appointment! Good luck!
Posted 6/14/2012 1:45 PM (GMT 0)
Please update us after your visit to the Mayo.

Sue
Posted 6/14/2012 2:33 PM (GMT 0)
Qsam6,
When I read your story I see you need a different GI for your own sake, and you need to make the name of the old GI public for other patient's sake.
Maybe do a blog somewhere and share your experience. The power of information and the power of shame. Either that or a lawsuit.

Good luck at Mayo.
Posted 6/15/2012 5:07 AM (GMT 0)
I'll try to keep everyone posted as I go through the Mayo, I'll be there Monday. Thanks everyone!
Posted 6/23/2012 1:08 AM (GMT 0)
Sorry for just now updating my status, things did get worse. While they were running me through all the test here at the Mayo, my colon got worse; stomach bloated, can't have bowel movements, and lots of pain; first I couldn't stop going, now I can't go at all. The doctor here admitted me into the hospital yesterday, they have me scheduled for 1st part of J-pouch procedure Monday. I am so glad my colon waited until I got here before it decided to stop working.
Posted 6/23/2012 1:30 AM (GMT 0)
Thank goodness you got there when you did. How scary. You are in good hands there. I wonder what the idiot GI doc that canceled the surgery on you would think now.

Sending lots of well wishes your way. If you have any questions after surgery, jpouch.org is the best place to get advice and info. There is a jpoucher on there that is also a nurse and she is a wealth of information and super at answering questions. Are you having a 2 or 3 step procedure?
Posted 6/23/2012 2:15 AM (GMT 0)
ByeByeUC,
lol...I was thinking the same thing about my GI doc back home, she is going to be hearing from me when I get back. I will have the 3 step procedure.
Posted 6/23/2012 2:47 AM (GMT 0)
I hope all goes well for you. You must feel relief that you had this happen at a hospital known for expertise in IBD. Hope you get a great surgeon and that you are treated well while there. Are you far from home or close enough for family to visit?

You can always come here and get support. Best wishes for your recovery.
Posted 6/23/2012 3:18 AM (GMT 0)

qsam6 said...
ByeByeUC,
lol...I was thinking the same thing about my GI doc back home, she is going to be hearing from me when I get back. I will have the 3 step procedure.

You bet I would give that GI doc a good verbal thrashing too. Best wishes for a speedy recovery. You will do great...think positive thoughts! :)
Posted 6/23/2012 11:15 AM (GMT 0)
imagardener2,
I have family on the way, they should be here before surgery begins. I have met with the surgeon already, I was told by another physician that my surgeon literally wrote the book on J-pouch procedure, even if he were overstating, I still feel very confident that this will go well. My entire experience here at the Mayo has been a positive one.
Posted 6/25/2012 3:42 AM (GMT 0)
First step of procedure begins at 6:00 am.
Posted 6/25/2012 10:29 PM (GMT 0)
Thinking about you today. Hope all went well. Will you be having 3 steps? When you are up to it, let us know how you are doing. It's a long road, but it sounds like you are in good hands, and for me it was so worth it.
Posted 6/25/2012 11:11 PM (GMT 0)
qusam6
Thinking of you too. My surgery was two years ago today. Even thru the post op pain I felt instantly better. Hope it all went smoothly today for you. :)
Posted 6/28/2012 9:38 PM (GMT 0)
Great day today, I've been walking around with rarely any pain, haven't even used my oxycodone; just tylenol and ibprofin. ByeByeUC, it is like you said, even with post op pain I still feel better than I did with UC, way better!!!
Disneynut66, I have to have 3 step procedure.
Posted 6/28/2012 9:43 PM (GMT 0)
Wonderful news! You sound terrific. Keep walking...it's the best thing. Take care of yourself. :)
Posted 6/29/2012 12:43 PM (GMT 0)
Yea!!! Hope things continue to go well.
✚ New Topic ✚ Reply
123