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Surgery postponed...what to do...

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Posted 3/25/2011 7:00 PM (GMT 0)
I have been signed off sick from work for nearly 4 months now. I was expecting surgery (Proctocolectomy and pouch) on 7th April but it has been cancelled and the surgeons secretary is taking ages to get back to me with a new date. I called yesterday and she said that it might be as late as the 3rd May but that she would get back to me in a few mins, she didn't - despite me leaving ANOTHER message this morning.

The problem is that I am no longer on much medication cos it really makes no difference to my condition (hence why surgery is the last resort) and I am bleeding such a lot and very uncomfortable and exhausted. My last lot of bloods 2 months ago came back ok, I had a pre op earlier this week and they took more bloods but I don't know the results of them yet. I just don't really know what to do, whether to speak to my GP but theres not much he can do, or whether to call the IBD nurses at the hospital, or what, I just don't know. confused

Posted 3/25/2011 7:10 PM (GMT 0)
That's ridiculous!

I would seek out a different surgeon. My CR surgeon never makes his patients wait more than 2 weeks for surgery. If you live in a metropolitan area there are bound to be 2 or 3 other very good surgeons. If you need recommendations, go to www.j-pouch.org

Sue
Posted 3/25/2011 7:33 PM (GMT 0)

Whats even more ridiculous is that even if I had had the surgery on 7th April I would have already have been waiting 10 weeks! I was told by my surgeon that the waiting list was about 8 weeks, which originally I accepted, but I think this is going too far now!!

Also, if I ask to see another surgeon surely that would take much longer time!?

Posted 3/25/2011 7:35 PM (GMT 0)
That really sucks. Sorry to hear that.

Does pred work for you? Maybe a really short course to get you through?
Posted 3/25/2011 8:28 PM (GMT 0)
I agree with Sue. The nurse who didn't return your call is especially rude. If you say you're going to call, CALL, even if you're not giving the news the person wants to hear. I hate when people drop the ball. I find that to be very annoying.

I hope you can figure something out soon, it sounds like you're not feeling well at all. I am sorry :(
Posted 3/25/2011 8:49 PM (GMT 0)
Not necessarily. Not all surgeons make patients wait this long. Even if you have to wait for a 2nd surgical consult, you're waiting for surgery anyway, and with your current surgeon it may get canceled again.

Sue
Posted 3/25/2011 9:06 PM (GMT 0)
Maybe something's going on they can't tell you or maybe the surgeon's office is not being run well.

Example: My GI cancelled my colonoscopy last January with no information or attempt to re-book. They gave me the option of having another doctor do it and I declined. My GI is a one-doctor practice. 6 months later at my semi-annual appointment I learned she had thyroid cancer and was out for several months. I guess she didn't want to lose all her patients by telling them or wanted her privacy. Luckily she's healthy now and bugging me to reschedule the c-scope.

Doctors are human and have personal issues to deal with too.
I would be talking to another surgeon if I were in your shoes or you might end up in the ER with no choice of specialist.
Posted 3/25/2011 9:14 PM (GMT 0)
Thank you everyone, its good to know I'm not the only one that thinks its a little out of order! If there's one thing I can't stand it is when people like the secretary don't call you back because 'there wasn't anything much to say', Argh if you say you are going to call back then do - even if you haven't found out all the info yet!!

The steroids might be a good idea mom2panda, I think I'm going to call the IBD nurses at the hospital on Monday, they are really good there and might be able to get me a course of Pred prescribed for me, as that does work on a high dose. I'm also going to keep calling the secretary and leave some messages until she finally gets her backside in Its ridiculous to cancel someones surgery and then take over a week to give them a new date! mad   I of course do appreciate that they are all only human, but to promise someone they will have a date for them in a few days, to then leave it a week with no correspondance and not call the patient back when promised is just not right.

Post Edited (qwerty1) : 3/25/2011 4:04:32 PM (GMT-6)

Posted 3/25/2011 9:18 PM (GMT 0)
The secretary might not have any idea what is going on. She/he could be merely looking at the surgeon's calendar and trying to pencil you in. You will need to go around her/him.

You won't know for sure whether or not your surgeon knows what is going on until you talk with him/her.

Ask to speak with the surgeon. If you can't, then ask to speak to at least one of the nurses. If that doesn't work, then ask your GP to talk to your surgeon. If that doesn't work, then find another surgeon. May 3rd is too long to wait.
Posted 3/26/2011 3:06 AM (GMT 0)
i agree its very rude for them to not call you back, and your surgery shouldn't be put off that long!

i did actually wait about a month, but that was because the surgeon i liked was going on vacation, and he said he could do the surgery, but then would be gone for a week shortly after, he said he would get me with another surgeon in his group, or that i could have another one for my hosptial check ups, or wait until he came back.  I chose to wait, because i really liked him.

But it wasn't that i was put off like you are being. I am worried you will end up in the ER, like someone said, with a bad situation happening.

And btw, you didn't chose a last resort, don't think of it that way!

Posted 3/26/2011 9:38 AM (GMT 0)

summerstorm said...
And btw, you didn't chose a last resort, don't think of it that way!

...what other way do I think of it though?!

And yes like you and imagardener2 said I don't want to end up in A&E, which it looks like I'm heading that way. And that of course wastes more of the medical staff's time than if they had just not made me wait so long for surgery!

Posted 3/26/2011 12:39 PM (GMT 0)
Are you having 2 or 3 step? If 2 using prednisone right before surgery might not be good. Is this a hospital where there are many other qualified j-pouch surgeons? If so, maybe you need to research them and see if one could get you in sooner. Also, you said you had your pre-op I think? I was told you have to have that within a month of surgery...so do you have to do that all again, and then pay for it (or your insurance) when it was their fault? That is not right.

I hope they can help you get it figured out.
Posted 3/26/2011 2:45 PM (GMT 0)

Disneynut66 said...
Are you having 2 or 3 step? If 2 using prednisone right before surgery might not be good. Is this a hospital where there are many other qualified j-pouch surgeons? If so, maybe you need to research them and see if one could get you in sooner. Also, you said you had your pre-op I think? I was told you have to have that within a month of surgery...so do you have to do that all again, and then pay for it (or your insurance) when it was their fault? That is not right.

I hope they can help you get it figured out.

I will be having the 2 step assuming all goes to plan. I'm not sure there are many other qualified J-pouch surgeons but I guess I could find out, it is one of the best hospitals in my area of the UK so I wouldn't be surprised if there were.

Also yes I had my pre - op on Tues, I was told to still go ahead with this as the postponed surgery date wouldn't be 'too long'. However if I have to have it again, it will be no more than just a hassle, because I'm in the UK I am having my treatment under the NHS so there will be no cost implications.

Posted 3/26/2011 8:43 PM (GMT 0)
Another way to think of it? You win! You beat UC you get your life back!
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