UC Misdiagnosed for 20 years, removed colon, now Crohns' diagnosis.....

[steveman99]

Greetings.
Back in 1987 I had suffered for a full month before I got medical attention. Losing 30 lbs along the way, I made my way to the dr. and fortunately, across the street there was a lab I went to and had a colonoscopy. Worst pain in the world, of course, my bowel was totally ulcerated, and that was when I was first diagnosed with Ulcerative Colitis. Over the next nearly 4 years I was in and out of Sunnybrooke Hospital in Toronto and rest the bowel, iv this and no solid food that and on departure from the hospital, I was given large doses of
{PREDNISONE}. among other drugs...asacol, comes to mind.
So, because of the massive amounts of prednisone, it deteriorated my hips. "A-Vascular-Necrosis" and on another hospital admission and ultrasound tests, to locate the flare up, it was determined that I had AVN and the next thing I have this huge Orthopedic Surgery team around my bed telling me that I have to stop taking prednisone and have "elective surgery". So, then my GI comes in and says that I have to have elective surgery on my colon (Total Procto-Colectomy), in order to stop having to take the prednisone and then to subsequently have the left hip replaced, and then the right hip to have minor surgery, not as far gone as the left.
So these surgeries were performed, and I had the ileoanal pouch connection, with the ileostomy bag for 3 months and then removed and on I went, into the sunset of hell. So, quick to the chase, I move to the US and marry in WV in 1999. In 2006 I have this horrible pain, and I am really bad. My doctor sends me to the Gastroenterologist here in the Charleston, WV area and he runs tests on me. His diagnosis is that I had Crohns!
How could that be? I was diagnosed with UC back in 1987 and in 1990 I had it totally removed from my body, thereby ending any further so called complications.
He said that I had be misdiagnosed. What a shocker that was! What to do? I still don't know what to do.
You see, it is one thing to be diagnosed with Crohns. It is another thing to have Crohns, with no large intestine. I am in the bathroom frequently throughout the day anyway, and this, on top of it all is overwhelming.
My health is not good at all. I am always tired, I have high blood pressure, could be the coffee and the extra weight I have put on. I have an active thyroid and that contributes. I feel like a complete victim and frustrated. So, there you have it. I am in a very unique situation. Perhaps there is another out there in my shoes. I would greatly appreciate some effective help in giving me some suggestions to my ongoing predicament.
Thank you.
Sincerely,
steveman99

 

[Layla]

Hi Steveman,
Apparently it's not uncommon to be misdiagnosed in this way. It happened to me too, UC in 1984, now Crohn's.
I was advised to have my colon removed too after a year on Pred and some osteoporosis but I declined. In hindsight that was a great decision!

I feel for you and hope you will find something that works for you. Are you on any biologics or other medication at the moment?

I find a low fibre diet works best for me in times of a flare and as I'm lactose intolerant I cut out all dairy as well. Have you been tested for Celiac and Lactose intolerance?

 

[Clash]

There are several members on here that were first dx'ed with UC, had their colon removed and then were later dx'rd with Crohn's disease. For the life of me, I can't think of their usernames at the moment.

I'll do some thinking and post when I come up with them. In the meantime, have they discussed the treatments for your disease with you? Where is your disease located? There are also me some members here that have colectomies or ileocolectomies that are still dealing with active CD, although their dx was CD all along.

You may want to browse around the forum or use the search function on the forum. Maybe the key words "rediagnosed with Crohn's" or "Crohns diagnosis after UC dx"

 

[araceli]

Welcome to the Forum. Sending support your way.

 

[Robrich]

Steveman
I had the same UC diagnosis and declined the colectomy. Turned out after 20 yrs I had CD.
My good buddy much younger diagnosed UC at around 6yo suffered dearly all his life finally had the colectomy and then got the Cd n the SB.
He channeled it into an art form here:
https://www.danielleighton.com

 

[DJW]

Hi and welcome.

Sorry you've had to go through this. I've read some stories here about people diagnosed with UC only to have it changed to crohns years later.

I was DX with crohns many years ago. My large intestine and quite a bit of my small intestine has been removed. I've been in my current flare for quite awhile. 14 trips to the washroom is my regular and has been for years along with extreme fatigue.

I'm now on imuran and Remicade and finely heading in the right direction. Not much help because I'm still in it but you're not alone. Sending you my support.
PM me if you wish to talk more.

 

[David]

Welcome to the community. I'm so sorry to hear about everything you've been going through

What treatment are you currently on for your Crohn's?

All my best to you.

 

[krishna]

Steveman,Welcome to the community. You have reached the right place to get the very imp info about CD.
And Misdiagnosed in my case also. Initially doctor has diagnosed abdomen TB and given the medicines 5 months. As pain in abdomen was not decreased, instead pain was increased and the doctor suggested to go for surgery and then they have confirmed I have crohns disease. Surgery was done 5 months before. Now I am taking Rowasa and Azoran with proper diet.

 

[wild_one353]

you are misunderstanding surgery, it does not remove IBD, you still have it, however it seems to put people in remissions of unpredictable length and depth. I've heard from at least 3 people there IBD diagnosis changing from UC to crohn's.