I have Crohns. I don't have Crohns.

[GeoGiGi]

I feel like my story still has much more to play out... Recently someone posted about dorm room TP-- akin to sandpaper. I remember as a freshman in college I saw blood on the TP-- I thought it was because the paper was so rough I rubbed my self raw. A year later I went to the doc about it. They though it was a cyst. Three times they removed it. Finally sent me to a colorectal surgeon who did a fistulotomy, 4 full years after that first blood. In the meantime, I picked up Giardia and malaria while traveling and no matter how much cipro and flagyl I had, I couldn't shake the symptoms. So They said I had post-infectional IBS. Fine. 3 months after my fistulotomy (2.5 years after my post-infectional IBS) I was still having pain from that fistula. I'd move 1,500 miles and was seeing a new surgeon. He said things were fine, let it heal some more. Also went to a new GI-- he said I had IBS and should just take imodium. I started to cry because I felt like that wasn't good enough of an answer-- imodium makes me feel pretty horrible in a totally different way. I thought there had to be something else he could do for me. He wanted to put me on anti-depressants because I was crying. I was not depressed and did not like the idea of taking drugs for depression that I didn't have. I was frustrated. He said my IBS and fistulas were unrelated but that I did need to go to another colorectal surgeon. I saw the new surgeon about a year ago and he got me right into the hospital to clean up the multiple fistulas he saw. When we came out of the OR he said I had perianal Crohns-- there were many fissures as well as the fistulas and in different areas than my original fistula. I couldn't have been happier-- in the months dealing with the crappy GI who said I had nothing wrong with me, "why are you crying?!" I had studied Crohns and just felt like it fit all my symptoms. Of course, that was quickly followed by a very rough time coming to terms with what a diagnosis means and how I should deal with it. In the meantime, I got another new GI who I like much better but she's very conservative about Crohns... my surgeon wants me on more meds, she's too worried about side effects... because although I have lots of signs and symptoms of Crohns the biopsies and inclusive and my blood test was negative...

So today I saw both my GI and surgeon (~1 year after my last fistulotomy)... my pain has been the same as it was before my last surgery and I was positive a fistula was back. My GI saw nothing... then I go to my surgeon and he said there were fistulas discharging in several areas. "Weeping" was his actual discription. And it seems he's not sure what to make of all of this (thankfully my two docs talk, so he knows the GIs hesistations about starting me on more intense meds) so now he's sending me to another colorectal surgeon in Boston. So, my confession is my docs can't figure out if I have Crohns or not... but I sure feel like if it's not Crohns, it sure is something similar... I get a lot out of talking to you guys and I feel like I fit in... whether or not my disease truly is Crohns remains to be seen... but I hope it doesn't matter since I can relate anyways. Thanks for being so welcoming.

Choose this title because it reminded me of the old game with the daisy petals-- he loves me, he loves me not. I've got Crohns, I've not got Crohns. That's sorta the story of me and my condition...

 

[Jeff D.]

Don't worry you are always welcome here. It seems to have been a very rough four years. What year were you in college when you got the first symptoms. If you ever need to talk just post in the vent section or you could aways pm or email any of us.

Good luck

 

[DannyB]

Hye GeoGiGi

Phew is a good word to describe your rollercoaster ride that you have been takin over the last while. Sounds like its been up n down for sure. You are always welcome here with us all and we are all good at listening and puttin as much advice as we possibly can.

Take care

 

[GeoGiGi]

What year were you in college when you got the first symptoms.

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I was a freshman in college when I first noticed something, which turned out to be a fistula (but it took almost 4 years to determine that). It was fall of my freshman year-- a VERY stressful time. My experience with Giardia in fection and then IBS symptoms began when I was a junior in college.

Thanks for the support guys I love that I know I can always talk to people here. My friends get tired of hearing about it sometimes... and there I only a few that I can talk to about specifics of my health w/o them getting grossed out. But here we're all on the same boat!

 

[Jeff D.]

Thanks for the support guys I love that I know I can always talk to people here. My friends get tired of hearing about it sometimes... and there I only a few that I can talk to about specifics of my health w/o them getting grossed out. But here we're all on the same boat!

Same here.LOL My friends don't ever want me to talk about my problems.

 

[skeet]

First, I DON'T have Crohn's, IBD, Colitis or IBS (because I'm the oddball here!) but have found a warm welcome and friendship here, so push that thought away.

Secondly, I get so frustrated for everyone here when I hear yet another story about difficulty of diagnosis. Doens't it just make you want to pull your hair out that it seems to give so many docs such a rough time, trying to pigeonhole these diseases?

What's obvious is that you DO have some kind of GI disorder & it's causing you pain & a lot of distress. Hope the docs can come to an agreement soon & give you something definitive to call it, not because it NEEDS a name, but because it means they know where they're going with treament.

Best to you!

 

[DiNozzos_Chick]

to Crohn's!