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Ulcerative colitis or Crohns ?????

maria

maria

I love you God.
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. :sign0085:
 
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M

mickey

Perhaps contact various university hospitals and determine which one might best serve you; based on their experience. Then you can get a good assessment and determine your path to healing? Get one with most experience in this area. Hope this helps!
 
maria

maria

I love you God.
I do have a rectal stump and 2 inches above it for what the sergeon said he wanted to reconnect but it has too much inflamation so they want to do a j-pouch. I've already called the universitys and the drs there dont want to do it because they think it's crohns only the ones here in vancouver think it's uc.
 
Crohn'sFor Life

Crohn'sFor Life

Colon Free!
Location
Honolulu,
Well if the pathology report showed that you had Ulcerative Colitis, then there is no reason for anyone to say you have Crohn's.

I love my ileostomy and don't ever want to reconnect. I hear there are problems with reconnecting.
 
maria

maria

I love you God.
I'm worried about the reconnection too but totally worth the risk to me. I'm trying to love my Illiostomy afterall it did save my life but I just can't accept it. It's so hard. I now have the freedom to eat what I like but I would trade that in. It's so crazy with todays technology they can't come up with somethign that works without so many complications.
 
cecilialynn

cecilialynn

Hi I too have a iliiostomy,and I have been diagnosed since 2003 with colitis. Summer of 2011 I had surgery and most of my colon except a small portion was removed. The pathology report said that it was indetermined wheather it was colitis or crohns colitis. I too am awaiting on surgery. I want it no matter what. I agree with you that with todays technology they should be able to come up with something to help.I hope you find the right surgeon to help you proceed with the reversal.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
I was initiatially (when the doctors finally got around to considering IBD) diagnosed with a mild case of UC... Just a couple of inches, treated with Flagyl, it would probably go away.
Within 2 months it had spread so much, so fast, the dr's had to do emergency resection. I was lucky to only lose 1 1/2 feet of colon. Again, tho path. reports were indeterminate, it was agreed (by the dr's) that it HAD to be UC. Crohn's didn't spread that fast AND cover areas so completely/uniformly. My 1st scope after the resection showed everything was healed, no sign of the disease. Within 3 months, my next scope showed my entire remaining colon uniformly covered with disease. Again, consensus by the doctors was that it was UC. Had to be, as Crohn's doesn't spread that fast, usually doesn't bleed that much, and shows up in distinct patches or colonies. So, I couldn't have Crohns'. Well, my GI wasn't so sure. Then I developed a fistula. You don't get a fistula from UC. Then, late last year, (now that LDN has it under control) the pathology report finally 'confirmed' Crohns. I guess my point is that, be it a doctor, technician or lab specialist; people within medicine will label something they aren't absolutely positive of if it falls within the generally accepted criteria... and they can be totally mistaken. If a specific test says something, and that test is repeated and confirms the diagnosis, I'd put some faith in it... until or unless something contradicts it. When I was a lad, dr's told my family my mother wouldn't live more than 6 months...50 odd years later, she did pass away. Experts say nothing is faster than the speed of light, but the universe itself is expanding faster than the speed of light. These are the same guys who say that it isn't possible for a bumblebees wings to lift his (her) body weight. Fortunately, no one told the bees. I guess, what I'm trying to say in my long winded way is... if you have ulcerative colitis, and they remove your colon; your colitis goes away with your colon. But, if their diagnosis is wrong, and they remove your colon, your Crohns Colitis probably will return as Crohn's Disease...so I'm guessing your doctors really aren't sure, and they'd rather not take that chance. If you aren't symptom free, then I'd suggest that you concentrate on taking care of your symptoms first; then worry about confirming if what you have is UC, CC or what.
 
maria

maria

I love you God.
Kev said:
I was initiatially (when the doctors finally got around to considering IBD) diagnosed with a mild case of UC... Just a couple of inches, treated with Flagyl, it would probably go away.
Within 2 months it had spread so much, so fast, the dr's had to do emergency resection. I was lucky to only lose 1 1/2 feet of colon. Again, tho path. reports were indeterminate, it was agreed (by the dr's) that it HAD to be UC. Crohn's didn't spread that fast AND cover areas so completely/uniformly. My 1st scope after the resection showed everything was healed, no sign of the disease. Within 3 months, my next scope showed my entire remaining colon uniformly covered with disease. Again, consensus by the doctors was that it was UC. Had to be, as Crohn's doesn't spread that fast, usually doesn't bleed that much, and shows up in distinct patches or colonies. So, I couldn't have Crohns'. Well, my GI wasn't so sure. Then I developed a fistula. You don't get a fistula from UC. Then, late last year, (now that LDN has it under control) the pathology report finally 'confirmed' Crohns. I guess my point is that, be it a doctor, technician or lab specialist; people within medicine will label something they aren't absolutely positive of if it falls within the generally accepted criteria... and they can be totally mistaken. If a specific test says something, and that test is repeated and confirms the diagnosis, I'd put some faith in it... until or unless something contradicts it. When I was a lad, dr's told my family my mother wouldn't live more than 6 months...50 odd years later, she did pass away. Experts say nothing is faster than the speed of light, but the universe itself is expanding faster than the speed of light. These are the same guys who say that it isn't possible for a bumblebees wings to lift his (her) body weight. Fortunately, no one told the bees. I guess, what I'm trying to say in my long winded way is... if you have ulcerative colitis, and they remove your colon; your colitis goes away with your colon. But, if their diagnosis is wrong, and they remove your colon, your Crohns Colitis probably will return as Crohn's Disease...so I'm guessing your doctors really aren't sure, and they'd rather not take that chance. If you aren't symptom free, then I'd suggest that you concentrate on taking care of your symptoms first; then worry about confirming if what you have is UC, CC or what.
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:) Thank you kev :) Your right. I think I am pushing it. I know the drs really don't know and I do know they don't want to make a mistake and make my situation worse. I do need to take care of whats going on at the moment before anything like reversal happens. It's so hard because I want it so bad. Honestly I'm worried if anything happens again to where I was before.. Pretty scary stuff.
 
cecilialynn

cecilialynn

Hi Kev, thanks for the info. Yes my surgeon said it was colitis, but the tests are not confirmed . I have no more colon left. I have had the surgery since end of July. I am not on any meds except prednisone which is for a ulcer on my stomach.I have not had any reoccurance with pains regarding my colitis. I am back to eating pretty much all foods except salads only because i do not want any blockages. I keep my fingers crossed that it is colitis and hope for a healthy future. Heres hoping that we all feel better sooner than not. Thankyou for telling us your story.
 
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