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UC misdiagnosis after 17 years?

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Posted 7/16/2011 1:40 AM (GMT 0)
So, after 17 years of having first 'Ulcerative Proctitis' and then progressing to Ulcerative Colitis, the doc at Mayo just told me I do not have either of those!  I am shock, how is that even possible?  I'll be ecstatic if I don't have to have another colonoscopy for 20+ years but I just find it so hard to believe. Especially since Mayo was the first place to diagnose me with what they termed at the time 'Ulcerative Procitis'.  They can't explain why 17 years ago I had what appeared to be horrible flares with tons of bleeding that were on and off for 2-3 years.  Just that my colonoscopy shows no indication that I have active, or inactive inflamatory disease.  Just alot of polyps from whatever I had 17 years ago.  I'd sure like to know what was wrong with me in case it comes back!  For now he said I have IBS (which I already knew) and a bad case of it. He prescribed me a very low 10mg dose of some sort of antidepressant which has been proven to help IBS somehow. I've never taken any sort of medication like that so it sounds slightly scary to me.

The doc told me to just stop taking all my medications (Colazal 3pills 3xday, enema 1xday) - just like that.  I can't see how that could be good for my body after taking some form of mesalamine-based medication for 17 years.  At the very least I'd think I should taper off.  He said if these medications are helping contain something else that I have, then the only way to find out is to stop taking them. If I have bleeding (which I haven't had in over 10 years) call right away.

Has anybody ever heard of anything like this?  I'm guessing not but at the very least it was good to vent!

Nikki

Posted 7/16/2011 2:21 AM (GMT 0)
That's crazy Nikki! I hope he is right and you don't have UC, that would be amazing.
Posted 7/16/2011 2:35 AM (GMT 0)
Some forms of UC when in remission leave no tell tale signs what so ever; as you've been told keep a close eye on things when getting off your meds for any slight change. I hope you had a case of self limiting UC and you will be good from here on...
Posted 7/16/2011 6:48 AM (GMT 0)
Do you have a copy of your c-scope biopsies results?

So, you're saying you've been on an enema nightly for 17 years? who prescribed it and when?

Something's amiss to me.

When were you at the Mayo?  Can you get the results from those biopsies?

q

Posted 7/16/2011 9:17 AM (GMT 0)

MNBeachgal said...
So, after 17 years of having first 'Ulcerative Proctitis' and then progressing to Ulcerative Colitis, the doc at Mayo just told me I do not have either of those! I am shock, how is that even possible? I'll be ecstatic if I don't have to have another colonoscopy for 20+ years but I just find it so hard to believe. Especially since Mayo was the first place to diagnose me with what they termed at the time 'Ulcerative Procitis'. They can't explain why 17 years ago I had what appeared to be horrible flares with tons of bleeding that were on and off for 2-3 years. Just that my colonoscopy shows no indication that I have active, or inactive inflamatory disease. [clip]

Has anybody ever heard of anything like this? I'm guessing not but at the very least it was good to vent!

Nikki

Nikki,

I'm not sure whether to scream here of joy or suggest calling for an appointment for second opinion. It's The Mayo Clinic we're talking about. How could they ever have been wrong?

You displayed proof is factual information that verifies a conclusion of UC, backed up by biopsies. Then the verdicts is just the opposite. Totally crazy situation. Weird disease.

I'd had a 'similar' situation when I was about thirty years old. I underwent the colonoscopy overseas a few times in different countries, and the procedure showed not only clean colon but no indication of any UC activity ever. I was in complete remission without any drugs or supplements for about 15 years. Could not have been more happy or confused. It's easy to accept that you're cured - finally.

I thought that I was cured for sure, until the focker raised its ugly head again.

Hopefully your final diagnoses remains for the rest of your life.

All the best, MNBeachgal.

God Bless.
Posted 7/16/2011 8:46 PM (GMT 0)
quincy,

I haven't been on the enema for 17 years.  I started out on Rowasa suppositories I believe.  Then moved to Azulphadine (however that's spelled) for a few months. Then to Asacol 3 pills/2x day.  I stayed on that for many, many years with no bleeding. Everytime I had a 'small' flare (I would see a little blood) I would go on Cortenemas immediately for about 2 weeks and it would be gone.  Switched to Colazal 3 pills/3x day maybe 7 years ago??  about 3-4 years ago I started using Mesalamine enemas for what I was told was a flare (no blood ever, but weakness, joint pains and diarhea).  I think it was about 3 years ago I got quite sick - still no blood but constant severe abdominal pains if I ate anything, joint pains and fatigue, diarhea).  That's when they had me take the Mesalamine enemas twice a day and Predinsone and I got better in a month or so.  Since then I've taken the enema nightly - so I guess for about the past 2 1/2 years.

I just had my most recent colonoscopy at Mayo a week ago Friday.  I met with the doctor later the same day (as they always do there) and he called me a few days ago with biopsy results.  I had my first colonoscopy 17 years ago at Mayo as well. In between then and now I've been seeing a local GI - they are the ones who told me I had UC although I can't remember when it was so long ago.

I'll taper my meds and see what happens. I guess its the only way to find out what is really going on, but I sure am not looking forward to having an normal UC flare if that does happen!

 

Posted 7/17/2011 7:37 AM (GMT 0)
I'm confused...but if you're able to taper and be well..yippee!

If you flare, at least you'll know what to do.

q
Posted 7/17/2011 9:02 AM (GMT 0)

MNBeachgal said...

I haven't been on the enema for 17 years.

Darn, no enemas? It's her life! tongue

Seriously, this is unbelievable. It kind of puts you in a weird situation after 17 years. From the bottom of my heart I wish the Mayo got it right this time and the rest of you life is UC free.

Happy tapering.
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