A bit of a shock...

[Minionaire]

As previously posted I had proctocolectpmy and ileostomy surgery 5weeks ago. So I had my follow up appointment with my surgeon yesterday and he had some interesting news...the results of the pathology on my colon post surgery showed (with absolute certainty) that I actually suffered from Ulcerative Colitis rather than Crohns! I've spent the last seven years mis-diagnosed...

Ultimately the surgeon reckoned this was a good thing because the pan-proctocolectomy is a cure for UC.

I was initially delighted by this! But then I began to wonder if this surgery was right for me. Having spent a day scouring the Internet about UC I think that in effect there is little difference between treatment of Crohns colitis and UC so maybe it is incidental, if a little shocking!

Just wondering what you guys think about this...?

 

[2thFairy]

I think this is great news! The only thing that may have been different would have been the procto part of your surgery, but even then, I wouldn't think backwards... can't undo what has been done. If indeed it is UC, then you should have a drug-free life from this point out (with the exception of anti-diarrheal meds if necessary with your ileostomy).

 

[Jim (POPS)]

Hi there, I have crohns but my wife has/HAD Cilitis and had her colon removed and now has a ilyostomy and she is now in GREAT health. I think this is GOOD NEWS for you. My wife can do anthing she wants, she can eat anything she want and she can have a drink or two or more if she wants.
I think as time goes on you will be very glad that you have colitis and not crohns.

I'm glad for you.

 

[annawato]

Definitely good news - the problem with crohn's is it can reocccur upstream of the ileostomy so an ileo isn't really a cure.
Still it must have been a surprise to get an alternative diagnosis.
How are you coping with everything?

 

[Misty-Eyed]

I also agree it's good news. No more worrying about getting ill again now! I wish I had had the same news!

Hope life with a new ileo is treating you well!

 

[Minionaire]

Thanks everyone! It is nice to hear positive opinions from fellow ileostas and colostas. This might sound weird but I am a person who struggles more with this type of good news than with bad news and to be told I'm cured feels really strange and difficult to believe. I also (and I know it's irrational) feel guilty; that in some way I'm a fraud...

I suppose it's also quite strange for me since it was my surgeon that announced the news to me that I actually don't have Crohns since my regular GI consultant has been on sabbatical and doesn't yet know the results of the pathology. I think once I see him I will feel more comfortable with the situation. Once he tells me that in fact it is true, ill be able to accept the good news.

I can't thank you guys on this forum enough and I hope I'm still a valid member of the Crohn's community!

Dave.

 

[2thFairy]

Besides the fact that we like you (and we really REALLY do!!), your experiences will always make you a valid member of the Crohn's community.

I have also been given the presumptive "cured" diagnosis, though I am hard to convince of this and time will tell. I definitely can appreciate your reluctance of all of this until hearing from your GI consultant.

 

[Crohn'sFor Life]

Great news!

Same thing happened to me.

 

[annawato]

You are ABSOLUTELY still a member of our community, and a valued one at that. Whether someone has UC or Crohn's or is cured makes no difference. As 2thy said your experiences are what makes you one of us.
:heart: anna

 

[robbo87]

Good news! There was a girl who I speak to on facebook who had found herself in the similar situation. She thought she'd had crohns for years and had been very ill at points, had an ileostomy but thing's didn't get better and eventually had the panproctolectomy then got told it was UC.

It's great that hopefully you can now get on without having to worry about potential flare up's etc and can go drug free!

 

[CheerBear12]

That's great news! You can now get on with your life without worrying about flare ups

 

[KazT17]

That sounds like good news to me! I was told I definitely have crohns, but I often wonder if they are right. I have only ever had problems with my colon.
As the days pass by, let it sink in, and enjoy the relief. Hope you are recovering well xxx