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The doctor says I am not having UC anymore.

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Ulcerative Colitis
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Posted 7/16/2013 6:58 AM (GMT 0)
A few years ago I got diagnosed with UC alternatively Crohns. I had small wounds all the way up to the thin intestine in a colonoscopy. Because the wounds went that high up they said I probably have Crohns, but later when the biopsy samples they took from my intestine were checked they said mild UC as the biopsy indicated that.

At the time of diagnose I was a bit better than what I was from the beginning. Skipping milk and becoming vegan had been helping quite a bit. I wonder what I had in my intestines when I was as worst.

Then I begun paying interest to food combination. I dropped medication with an exception for small doses of Mutaflor sometimes.

Last colonoscopy, as I reported here was clean. There was nothing in my intestine indicating any problem. Also all fecal samples I have given since then has been good.

Yesterday the doctor called me and said my case is closed. They do not believe I have UC.

I still have a nervous stomach and if I even a bit cheat with my diet I get D. I am confused of what I actually have. Can diet put me into a such remission that a doctor thinks I got wrong diagnosed from the beginning? I am not feeling like I would be completely well and I am definitely not cured from whatever I have. All I know is that I can handle the situation with proper diet.

Post Edited (engblom) : 7/16/2013 1:01:32 AM (GMT-6)

Posted 7/16/2013 7:42 AM (GMT 0)
Get a second opinion. UC is not curable. Sure your colon can heal so well that it seems like nothing has ever happened. But that doesn't mean that if you really have UC that it could never break out anymore.
Posted 7/16/2013 7:51 AM (GMT 0)
I definitely do not think I am cured. It is just that the doctor claims I never had UC from the beginning and that I must have been wrong diagnosed.

I wonder if other have been going through something similar? I would still want to be monitored and checked as problem in the colon might lead to cancer among other things.

What should I believe? That I was wrong diagnosed? Or that I have UC, but able to keep it in some kind of remission?
Posted 7/16/2013 12:06 PM (GMT 0)
I don't know but whenever you're having problems again go see a doctor. If possible another one. I would also get all the documentation about the diagnosis from your GI as a copy. Who knows what it will be good for later.

I knew a girl in the German forum who had Crohns and she was on Remicade which helped her. Later the doctor told her she doesn't have Crohns and they didn't know what she had. They refused to treat her and she got really sick again. She boycotted the forum afterwards so I'm not sure what happened to her.
Posted 7/16/2013 12:12 PM (GMT 0)
Have you been tested for food sensitivities? It may be worth getting checked for them. I am refering to IgE and IgG testing specifically. Perhaps you have a delayed food sensitivity. They recommend anyone that has a bowel disease to have these done. I read this in more than one place.
Posted 7/16/2013 12:40 PM (GMT 0)
ya, what steve said -
Posted 7/16/2013 12:45 PM (GMT 0)
but later when the biopsy samples they took from my intestine were checked they said mild UC as the biopsy indicated that.

Andrina is right, UC is not curable, so if your biopsy said you had UC then you have it, and you should get a copy of that biopsy and scope report. Then you should get another doctor who is more informed on UC and IBD.

You will need a medical professional in your life for support even if your symptoms are low and diet helps you.I am trying to get to the place you have arrived, no signs of inflammation. But as a famous doctor said "Once UC, always UC".

My GI said that even if I couldn't see any results from taking Balsalazide I should keep taking it to keep inflammation down. Since I have no side effects from it and can afford to buy it I keep taking it. But like you diet has been very effective and that will continue too.

Good luck getting copies of your reports and finding a better doctor.
Posted 7/16/2013 2:10 PM (GMT 0)
Hopefully you were misdiagnosed. It wouldn't be the first time I saw a misdiagnosis here and probably not the last. Were you ever checked for bacterial causes or given antibiotics? There has to be a cause for the inflammation you had when you had the biopsy.
Posted 7/16/2013 2:50 PM (GMT 0)
Definitely get another opinion.  When in remission it is possible for your colon to look completely normal.  I was in remission for over 10 years and every scope I had during that time showed a totally normal colon.

I also had a new GI doctor tell me that I was misdiagnosed and that when I was told 18 years prior that I had UC I never really did. He told me to stop all my meds as I didn't need them.  I did what he said and went right into my first flare up in over 10 years.  That was 1 1/2 years ago and I am only now coming out of it and I'm still trying to get off Prednisone. Not a day goes by where I do not wish that I had gotten another opinion. I knew something was off when that new GI told me what he did but I figured he is a doctor (and I was at Mayo Clinic) so he must be right.  Well he was very, very wrong and I paid dearly for it.  Don't make that mistake. UC does not go away and if while in a flare-up you showed you had UC with your scope and biopsies you likely do have it. You can look like you don't while in remission, I am proof of that.

Posted 7/16/2013 7:23 PM (GMT 0)
Yes, it seems that there's been huge discrepancies from the beginning.

Biopsies don't determine UC, they can be consistent with, however.

Do you have copies of your results? If not...please make sure you get them because something's wonky with this whole process.

Regardless...your colon is doing well. I do surely hope the doc took lots of biopsies even though all looked good.

q
Posted 7/16/2013 7:35 PM (GMT 0)
There are very mild cases of IBD where one can go into full remission with little to no signs of inflammation in the intestines, that doesn't mean you were mixDX by any means, and I certainly hope you don't have an IBD but being realistic, it's very possible you are just a very mild case. Be sure to pay attention to what's going on with your body so that you can stay on top of it if you do in fact have an IBD.
Posted 7/18/2013 2:49 PM (GMT 0)
I agree with points made about biopsies not determining UC. They can usually distinguish UC form Crohns, because the latter goes deeper into the lining. The can usually detect microscopic ulcerations/activity even when a scope is visually clean. But they cannot distinguish UC form other forms of colitis. The final diagnosis of UC (the colitis with auto-immune component) is done after excluding infectious colitis, and/or food sensitivities.

You may have some residual food sensitivity, or some IBS giving you D.

I would try to get copies of your biopsies and scope results. You never know where the future will bring you.

Post Edited (DBwithUC) : 7/19/2013 9:36:16 PM (GMT-6)

Posted 7/18/2013 3:17 PM (GMT 0)
Sounds to me like the the Doc just doesn't know his stuff...
Posted 7/19/2013 12:58 AM (GMT 0)
Your post reminds me that we had a member using the name PrincessColon, who seemed to have relentless UC and was finally put on Humira by her doctor. Then, after some months passed, the doctor told her she did not have UC-- no matter that she had been suffering flares for several yrs! So-- I agree with members here who advise you to get copies of your DX scope reports, including biopsies. Best wishes! / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/19/2013 1:54 AM (GMT 0)
Maaaaan, if the doc says you have no UC, and you feel you have no UC, you have no UC....The haters in here, they be jealous.


Heck, I'm jealous. I'll take any no UC. If I take a colo and it says NO UC, I'm a be like....ooooohhh yyyeaaah.
Posted 7/19/2013 8:43 PM (GMT 0)
Engblom, did u have any bleeding when diagnosed with uc and later? If not, it really could have been some bacteria, i've heard such cases on the Polish forum. And did that PrincessColon have bleeding, do u know Old Hat? My curiosity is because I was once told by the doctor that if there is bleeding, there is no other possibility than uc or crohn, but it seems to me that if doctors sometimes get mistaken about cancer, they may be also wrong about such undefined disease as uc. Some time ago i read an article in the Polish medical journal in which one doctor said that according to him, every uc case is a different disease unit and should be approached differently, maybe there's some truth in it.
Posted 7/19/2013 8:58 PM (GMT 0)
Geez, id love to hear that. Im with somedude on that. No sign of disease- uhh awesome!

Keep doin what ur doin.
Posted 7/19/2013 9:12 PM (GMT 0)
Yeah, I was in remission for ten years only taking two sulfasalizine a day, then the sh** storm hit and had four years of trying everything, I have been mostly symptom free finally for the past month.
Posted 7/20/2013 8:20 AM (GMT 0)
This week I cheated with my diet. Consequence: First mucus, then D, then D with blood and a lot of gas.

Conclusion: I am definitely having something going on in my guts.

I had blood coming before diagnose. Before I got the diagnose, I had already made changes to my diet and I had only small wounds left (which I could see myself on the screen) all the way from the opening up as far as they got during the colonoscopy.
Posted 7/20/2013 5:56 PM (GMT 0)
Years ago I asked my specialist if it was possible to have such a long-term remission with very successful healing to the point that a future colonoscopy would reveal a colon that looked like it belonged to a healthy individual without any such health problems.

His answer was yes. So "case closed, you don't have UC" makes no sense to me. It seems to me that you've simply had such a great run and are asymptomatic. Being in remission (good for you, by the way) isn't the same as being rid of the disease.
Posted 7/20/2013 8:19 PM (GMT 0)
well, you DID drop your meds, right? I'd not blame the diet.

When do you get the results of your biopsies?  Please, please make sure you get a copy.

q

Posted 7/20/2013 8:36 PM (GMT 0)
ewakedals-- YES, PrincessColon had been very sick with major flares & she likely mentioned bleeding at some point. It has been a while since she posted here-- so I still hope she returns to update us. By the way, you mentioned reading a Polish forum-- is there an online forum in Poland for people with UC? I would be interested to hear its name and where it is based. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
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