What you guys think?

[maria]

what you guys think?

Hi, My name is ela and I was diagnosed with Uc 4 yrs ago and to make a long story short it got so bad to where I had to have a illiostomy. So I've been patiently waiting to get a reversal and my drs keep avoiding me( not sure why). Finally 6 months ago I met with a surgeon in seattle and he said that I had crohns and he doesnt feel comfertable do a reversal.. I was so crushed so I came back to the dr here in vanocuver and he and 3 others still believe that I have uc and not crohns. Im curious to know how many of you would be upset if you were misdiagnosed and was promised to have this reversal at least 3 months min after getting a illiostomy? (2 months after my surgery the surgeon that did my surgery left to a different state) about a month ago my dr said he made a mistake and maybe shouldnt have jumped to the illio without looking into it more. Again I was crushed I feel something was taken from me. And still they avoid me. Right now I bleed all the time from my rectum and still have pain. So nothing was totally fixed So I'm confused and scared. I live everyday thinking about getting the reversal and I want it and I dont want to give up. I was just wondering if anyone has any ideas for me. I know my story is in pieces but if you have any questions just ask.:depressed::sign0085:

 

[Ian]

Hi maria and welcome

Do you know why the Seattle surgeon thinks it's Crohns rather than UC? If 4 GIs believe it to be UC surely one of them can refer you to a surgeon who will do the op if that's what you want? Seems odd to me.
I would be dissappointed too. My doctors have reccommended a colectomy but I have 'IBD unclassified' - it's confined to the colon but it's impossible to say if it's UC or Crohns (looked like UC at diagnosis, then Crohns, then like UC again). It's likely they would be able to give a more definitive diagnosis after a pathology report had been done on the 'specimin' (i.e. my removed colon), but obviously there's no going back after that. I'm really sorry you were promised a reversal and it has yet to happen. If the number of people who think it's UC far outnumber those those think it's Crohns, I don't see why someone wouldn't agree to try a pouch. Not to undermine the risks of going under the knife more times, but worst case scenario is you go back to where you are now. I hope you can find someone who can help you.

 

[maria]

Thank you Ian. I agree. That's why I'm so confused. They took so many biopsys and they have my colon. I'm thinking I know what the problem is and that's my insurrance isn't that good. So I'm stuck to only washington state. There is only 1 surgeon in seattle that knows how and he doesnt want to. It sucks so bad.

 

[Ian]

I'm really sorry to hear that. It slipped my mind that you'd be having to deal with insurance etc, being in the US. That does indeed suck. I'm surprised there's only one capable surgeon in Seattle! I don't know why I'm surprised though (maybe because that's where Grey's Anatomy is set and their hospital is amazing lol, but obviously it's fictional). Can you go elsewhere in Washington or are you limited to Seattle? I hope you can find a solution.

 

[maria]

If I can find one that will do it in washington state but he's the only one :yfrown: Haha yeah too bad that show wasn't real maybe they can help me..lol I have to admit I was shocked to hear that was it with everyone going to school you would think they would have more and drs would know what to do.