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Was I misdiagnosed 8 years ago with U C or was I healed? Feeling happy, confused and emotinal

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Ulcerative Colitis
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Posted 8/21/2014 12:59 AM (GMT 0)
I was diagnosed 8 years ago with U C. Had some pretty bad symptoms and then had a colonoscopy. After diagnosis was put on meds and for the most part have been in remission since...never had severe symptoms of blood and extremes like I did before meds. I was going to a big hospital in Chicago but hate driving downtown so I decided to switch to a local doctor in the suburbs. Just had a colonoscopy. Everything looks great and there are no signs of any inflammatory bowel disease, not even in the biopsies he took. My new Dr. is highly recommended and I trust him because I am not a doctor and I need to trust someone. He is going to find out if there has ever been any Inflamatory bowel panel blood-work done in my past in Chicago and he will be doing that blood-work soon and we will be discussing me stopping my medication. I am feeling so many emotions right now. Thankful, that I was told I have this auto-immune disease with no cure but now am told I probably don't ...Scared, because it has been drilled in my head to NEVER EVER stop taking my medicine for fear I will need it again and it won't work and then I will need steroids...and I am just so emotional. I haven't been on this site in such a long time. I just really need someone to talk to that has experience. Does anyone have anything to say about being misdiagnosed or healed or any advice for me...Thanks.
Posted 8/21/2014 1:04 AM (GMT 0)
I really hope the old Dr. messed up, but being in remission for 8 years is certainly not unheard of, so dont get your hopes up too much, because that can be worse than almost anything. Assume you have it until proven otherwise because they usually dont make such a serious diagnosis without proper evidence.
Posted 8/21/2014 1:12 AM (GMT 0)
Thank you Marauder93. I appreciate your reply. (-:
Posted 8/21/2014 1:24 AM (GMT 0)
Just be careful. I've known people who have been in remission for longer than 8 years and had symptoms return. Good luck.
Posted 8/21/2014 1:25 AM (GMT 0)
If it comes to show after my blood-work that I probably don't have Ulcerative Colitis, I will stop taking the medication, Asacol. I still have that fear that I will get sick again. I wonder if there is a certain diet I should stick to, to keep the colon happy. This is all good news but I can't explain how I feel...very emotional.
Posted 8/21/2014 1:28 AM (GMT 0)
But this new doctor is saying I have no signs at all of U C. He is not using the word remission. If he keeps the same opinion after my blood-work comes back, I could always get another opinion....but honestly I have anxiety with going to doctors and I really don't want to. )-:
Posted 8/21/2014 1:33 AM (GMT 0)
I would think after 8 years of remission, most people wouldn't have signs of UC activity. I don't know what to think about this. I hope it was a misdiagnosis.
Posted 8/21/2014 1:34 AM (GMT 0)
What is your age?
Posted 8/21/2014 1:44 AM (GMT 0)
I will be 50 in January.
Posted 8/21/2014 1:56 AM (GMT 0)
I'm assuming that your initial UC diagnosis was made via a pathology report from biopsies taken during a colonoscopy. If so, it is almost certain you have UC.

Thankfully, I have been in remission for quite some time and my doctor said of my last 2 colonoscopies that if he didn't know better he wouldn't know I ever had UC based on how good my colon looked.

Unfortunately, my GI and I both know better. I most definitely have UC. I have learned the hard way about going off meds. The UC returns in full force. It's never really gone away, it was only dormant so to speak.

I know 2 individuals who both were in remission for 10+ years and decided to go off meds. One landed in the hospital in a matter of weeks and the other flared so bad that no medication was working on her last we spoke.

If it were me I would not rely on bloodwork to confirm or disaffirm a UC DX.

I hope you initial diagnosis was wrong, but chances are not. And if you decide to try going off meds, I wish you continued remission. You never know. For you it could stay in remission.
Posted 8/21/2014 2:00 AM (GMT 0)
I am nervous for sure.
Posted 8/21/2014 2:32 AM (GMT 0)
Just because you are symptom-free doesn't mean you never had UC. Since you only had one flare-up your colon is most likely not scarred like mine.

I hope your doc knows what he's doing. Once you're off meds, keep watching. I would be glad if you had something else but then I would wonder how the meds got you in remission in the first place.
Posted 8/21/2014 2:43 AM (GMT 0)
Thank you. I don't know what to do. Maybe I could start by cutting back meds......take two instead of three a day....I have a feeling too that I'll need a second opinion on this before making a big decision...even though I hate going to doctors, I think I'll have to do this to be comfortable and not stressed.
Posted 8/21/2014 2:52 AM (GMT 0)
If you do stop taking asacol, keep some back in the cupboard so that you can re-start within minutes of seeing any symptoms reemerge.
Posted 8/21/2014 2:56 AM (GMT 0)
Ok. Will do. Im really appreciate all of the advice.

Post Edited (bellski) : 8/20/2014 10:18:37 PM (GMT-6)

Posted 8/21/2014 3:13 AM (GMT 0)

bellski said...
Thank you. I don't know what to do. Maybe I could start by cutting back meds......take two instead of three a day....I have a feeling too that I'll need a second opinion on this before making a big decision...even though I hate going to doctors, I think I'll have to do this to be comfortable and not stressed.

This is what I was going to suggest. If you dont think you have UC, cut back either on the dosing or the frequency; it certainly wont hurt you. Though as long as you can afford the mesalamine and its not too troublesome, you should stay on it for a least a few more years. Just in case your doctor is wrong, Id be scared to chance it you know? But ii really depends on how you feel about the meds
Posted 8/21/2014 3:34 AM (GMT 0)
I would not trust a doctor who wants to rely on "blood work" to overrule biopsies.

All blood work can show is current inflammation. Except for genetic tests that could show some UC susceptibility genes, there is no UC test.

Get your old pathology report. If it shows UC, drop this new doctor like a hot rock.
Posted 8/21/2014 4:55 AM (GMT 0)
I don't think any doctor would ever make the diagnosis of UC without clinical evidence. Especially if you had a colonoscopy done.

Advice for the future, ALWAYS get copies of your medical records! Most certainly for a diagnoses as big as UC. My doctor always hands me a printed report (with pictures, gross!) of my colonoscopy.

I'm no doctor, however, I'm very familiar with this disease, like most of us are on this site. To me it sounds like Asacol really worked for you and you were one of the lucky ones to stay in remission for so long.

Clinical remission is having no signs of UC during a colonoscopy, therefore I would be VERY careful if you decide to come off meds. But with that said since you were just on Asacol I'm sure you will be fine. If you do flare again, there are numerous amounts of meds you can go back on.

Keep us updated!
Posted 8/21/2014 5:09 AM (GMT 0)
Thank you all. I am going to start collecting all my records. I might be able to find them around here. I do remember the colonoscopy from 8 years ago and I remember getting pictures. I will also call to see if I can get copies sent to me from the places I have been seen at.
Posted 8/21/2014 12:06 PM (GMT 0)
I also doubt that you would have been diagnosed with UC if you did not actually have it. The meds can put you in remission that fast and a future scope could find no sign of the disease. If you did have UC it would be a very huge mistake to quit taking the meds because they are what is keeping you in remission. Future flares often get harder and harder to treat, requiring stronger and harsher meds. Often what put you into remission before won't work again or work as well again. So, if you have UC, it is better to keep taking the lower tier meds forever than to quit, flare again, and then have to take higher tier meds, which might not even work. Better to be safe than really, really sorry you quit the easy meds.
Posted 8/21/2014 12:12 PM (GMT 0)
I had a scope after being in remission for over two years and my doctor said that he saw zero signs of UC -- my colon looked perfectly normal. However, never once was there a discussion about me not having UC. I also had a five year long remission, during which I had zero symptoms of UC. In your first post, it sounds as if you've had at least some symptoms in the 8 years since you were diagnosed.

You definitely need to get a second opinion before going off your meds.
Posted 8/21/2014 12:35 PM (GMT 0)
keep taking your drugs unless you have a very compelling reason not to -
Posted 8/21/2014 1:51 PM (GMT 0)
I join the majority expressing caution before deciding you do not now have signs of UC and maybe never had it. UC is a clever little immune deficiency disease.

I am a 79 year old female diagnosed with UC in 2004 after routine colonoscopy. Condition of the colon and biopsy confirmed the diagnosis. At that time I had none of the horrors of UC such as involuntary bowel movements, incredible colon pain, and an even more horrible condition, pyoderma gangrenosum, an immune system disease in conjunction with UC. It causes ulcerative lesions usually on the legs. I have had five since 2006, the first coming six months after my husband passed from cancer. At that time it was easily brought in control and healed using prednisone. The prednisone also helped with the unpleasant UC symptoms.

Last month the last pyoderma was healed completely. I am hoping to never have another one. It took a year after cyclosporene was added to the list of medications. Cyclosporene is the usual drug of choice for transplants, newly being used for pyoderma. Six years of debilitating immune system disease coupled with too much medicine, necessary but also wreaking their own havoc on your body, left me wondering if I was going to be an invalid forever.

I am currently reducing my prednisone, going from 80 mg to today's 10 mg. I have a wonderful team of doctors. My wound care doctor persuaded the hospital to give me hyperbaric oxygen treatment as an indigent since I didn't meet Medicare guidelines for that treatment and they, Medicare, wouldn't allow my teacher retirement insurance to pay for it. Bureaucracy at its best. That treatment costs $30,000+.

Sorry to go on for so long. If you aren't experiencing symptoms, count your blessings.

[email protected]

Current medications are:
500 mg. Metformin for Type 2 diabetes.
Remicade once every 8 weeks for UC.
10 mg. Prednisone - hoping to be Prednisone free by the end of Septemer.
Posted 8/21/2014 3:18 PM (GMT 0)
I, too, would advise against going off medications, but not for the reasons people stated here.

Though I am very skeptical about mesalamines (see mutaflor/probiotic studies showing same efficacy), it takes a leap of faith to get off medications because there's a strong psychological component to it -- partially because it's drilled into our heads that we will have surgery if we get off them.

To prove that wrong, all it takes is one exception to that rule and you will find many here. The biggest exception to the UC is not curable rule is Michael Hurst. 11 years of severe UC pathology, prepared for surgery and then gone. No more UC pathology. Why? He did intense psychological prepping (he had to get off his medications as well).

You say you are scared... perhaps it is the fear you need to address before you decide to wean off. That, IMO, is the worst of it. I have this same fear drilled in my head.

Edit: There was also a study detailing whether 5asas were efficacious or not after 3-4 years of zero UC pathology. Your case warrants strong looking into IMO, but that is something you'll have to discuss with your doctors.

Best wishes.

Post Edited (Guardian7) : 8/21/2014 9:22:05 AM (GMT-6)

Posted 8/22/2014 1:20 AM (GMT 0)
I am really thinking of staying on my medicine now. I will just tell this dr that when he calls...I might get my second opinion at Mayo in rochestster, MN when I go with my husband in December to get his heart checked. I appreciate your opinions. Questions though....are there bad side affects of being on asacol for a long time? I suppose I should look that up....also, for Guardian 7, what does IMO stand for? Thanks.
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