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Ulcerative Colitis
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Posted 9/26/2013 3:13 PM (GMT 0)
I'm going to try to make this as short as possible but still sharing what I'd like input on. I am a 37 year old male.

Back in 2007 I noticed blood in my stool for the first time and let it go. After a few months, it obviously got worse. I was in a severe flare and went in for my first colonoscopy. The dr that did the scope diagnosed me with uc. He was just a MD and not a GI specialist. I then found a gastrointerolgist that I seen up until this year. He is now retired and I have been hunting for a new dr that I like and feel like I can count on. Over the last few years, I get "small flares" and take asacol when I notice issues. This usually gets everything under control and I go back to normal for several months. I'm not a medicine taker so its hard for me to take asacol all the time. Anyway, I have since found a new dr that I think I'm going to stick with. The problem is, he's telling me something I don't agree with. We recently had labs done and everything came back in perfect range. He is suggesting that I get off asacol (all together) and go get a scope in 1-6 months without a medicated colon. Since I'm in the middle of a moderate flare, I find this hard to believe. He's wondering if I was misdiagnosed. My symptoms are cramping, constipation and blood / muscus in my stool. I've been going to the rr about 3-6 times a day- nothing to crazy. Does this guys approach sound legit? I'm concerned by going off asacol is going to through me over the edge into a severe flare. Input would be appreciated. Thank you

Posted 9/26/2013 3:17 PM (GMT 0)
I don't agree with not taking any meds for that long...that's a pretty long time. Asacol can itself cause UC symptoms, so I think it's worthwhile going off of it for a short period of time to see if symptoms improve (like no more than a 3-7 days I'd say), and if they improve then take it from there. If they don't improve start it back up.

But of course, I am not a doctor. :)
Posted 9/26/2013 3:24 PM (GMT 0)
I understand we are not doctors and that everything here is opinion based. I appreciate the input.
That makes sense with what your saying. He's wanting to get some biopsies on the next scope. I dont understand why we can use the previous tests / biopsies for what it is hes trying to figure out.? I obviously have something wrong but I don't want to get a bunch of testing done for nothing. I am a stressed person with a stressful job. He seems to wonder if the stress is not whats causing this. He mentioned something to me about maybe having irritable bowl syndrome versus UC. Hell, I dont know what all the differences are with this stuff. I have a decent diet and workout hardcore 4-5 times a week. My weekness with my diet is candy and sweets. I drink a gallon of water a day and eat chipotle almost daily.
Posted 9/26/2013 3:27 PM (GMT 0)
Is this new doctor a GI?

Your current symptoms were my symptoms with UC. I don't understand why he thinks you don't have UC?

Sue
Posted 9/26/2013 3:30 PM (GMT 0)
Yes he has. Actually has been in the field for several years! It makes me wonder if he knows something I don't.?
I just hate the idea of medicine free when I'm having issues
Posted 9/26/2013 3:31 PM (GMT 0)
Stopping your medication during a flare sounds pretty stupid to me. The only reason I would quit the meds is if you suspect you are having an allergic reaction to them: as a meslamine intolerance may cause more diarrhea bleeding, and so forth.

Do you know what they saw in your colonoscopy, have a copy of the notes or a copy of the biopsy results? If not you should be able to request them. To me, blood and mucus in stools sounds like either Chron's or Ulcerative Colitis. If the colonoscopy finds the inflammation starts at the rectum and is continuous in nature, then it is likely uc. If the colonoscopy finds the inflammation to be patchy, with normal sections between inflamed sections then it is likely chron's. The biopsy's are useful as well, as the lab results may distinguish between the two. Uc is pretty shallow inflammation affecting only a thin layer of the lining of the intestinal wall. Chron's is much, much deeper tissue damage.
Posted 9/26/2013 3:38 PM (GMT 0)
I do not have the notes or images handy at this time. My last GI told me after the scope that it appeared that I had a very mild case of UC or was misdiagnosed as well. But, I was coming off a run of prednisone / asacol before the test.
The thing is- when I have issues, they usually don't last long once I start up the asacol and sometime incorporate a small run of prednisone. Then I can go MONTHS without any symptoms and then out of nowhere- boom, here we are. I kind of got pissed at this new guy because I wanted him to call me in some prednisone to nip this flare and he wouldn't do it...
Posted 9/26/2013 3:56 PM (GMT 0)
Well, first off you are supposed to take your uc maintenance medication all of the time, whether you are feeling good or bad. With uc, your immune system attacks your large intestine which causes inflammation. Asacol is a topical, anti-inflammatory medication. When you take your medicine regularly, the inflammation is kept in check, and so are your uc symptoms. When you stop your medication, your inflammation builds, and builds up until you end up in a uc flareup which can be miserable. How long till a flareup really varies based on how aggressive your uc is, and the extent of it.

Pred is not a medication you want to be on often, as its effectiveness can decrease.
Posted 9/26/2013 4:22 PM (GMT 0)
request that you have a c-scope asap....then go from there.
q
Posted 9/26/2013 5:33 PM (GMT 0)
I agree with Quincy. You should get a scope right away. There is a big difference between IBS and UC. I don't see how they can diagnose you with UC and then have a future doctor question that diagnosis, thinking that you may just have IBS. You either have UC or you don't. UC is forever. I certainly wouldn't stop the meds until you get a new scope and figure things out from there. It is stupid for him to let you get worse so you can get scoped at a later time to confirm the first diagnosis. It is possible you screwed up and chose the wrong doctor.
Posted 9/26/2013 5:50 PM (GMT 0)
Thanks for the repsonses everyone. I go first thing Monday morning to discuss what my thoughts are with him and to also get a colonoscopy scheduled. I appreciate the input.
Posted 9/26/2013 9:42 PM (GMT 0)
Yeah, you should have a scope now, since you're having symptoms. If you have UC, your colon will tell the tale, so to speak.
Posted 9/30/2013 12:25 PM (GMT 0)
I just got done at my dr appointment.

He is stating he wants me to discontinue the asacol so he can scope me without medication being present. Even if I get worse, he still wants to stick with this approach. According to my latest lab work and my last scope in 2010 (I was taking pred and asacol before this scope) both the dr that scoped me and this new guy is questioning the original diagnosis. They both say the results of the biopsies and lab work show no presence of UC. Now I have a decision to make. I obviously need a scope but not sure what to do about the meds.

Posted 9/30/2013 12:40 PM (GMT 0)
Hi - being someone that suffers as well, and in my third - most worse flare currently - I can see why he would want to scope you while you are active. The last time I was scoped while active, he was able to see new patches forming that wouldn't have been seen if I was medicating. To go off meds in the midst of a flare for as long as you're saying does sound crazy. I'd say for a month, tops, sounds more reasonable. If you only use the restroom 3-6 times at your worst, consider yourself lucky. Right now I go 20-25 times a day....

I'd speak to him and say you're more comfortable abstaining from medication but only if its for a short period of time. Meet him halfway.

Just my 2 cents. Hope things get better for you!
Posted 10/1/2013 4:40 PM (GMT 0)
I think I get it. I was actually thinking like your DR. How are you supposed to tell what is really going on in your colon when you are taking meds to heal it. I was thinking the other day. If I am on a high does of Pred and they scope me they might diagnose mild UC when in actually it is severe UC. It just looks mild due to the meds. Maybe I am wrong but just a thought.
Posted 10/4/2013 8:09 AM (GMT 0)
NO WAY !! I was suggeseted the same thing n by a fill in specialist and i laughed, about a week later i was in hospital with a flare and my GI said i will never be free of maintenance drugs as it is a silly gamble to take with my health..

Don't do it
Posted 10/22/2013 5:38 PM (GMT 0)
Well folks, I've been off asacol since October 1. Nothing has changed with my current situation- no better, no worse. I go in next weds for my scope.
Posted 10/22/2013 7:13 PM (GMT 0)
It is correct from my own experiences that you can look as though there is no UC when the meds are working and that if you stop the meds or become more ill that signs of inflammation re-appear and can be seen on the c scope or sigmoidoscopy again. I wouldn't stop your medication if you are still in any kind of suspect flare and I would get a second opinion from another doctor.
Posted 10/22/2013 7:27 PM (GMT 0)
Then I am confused! What is the point of a scope for everyone else who does not stop taking the drugs? Are the results skewed?
Posted 10/22/2013 8:43 PM (GMT 0)
The point of the scope (for everyone else) is to get diagnosis and/or check remission status. they look for ulceration, the look at patterns of ulceration/inflammation, and they take biopsies that either will or will not show the histological changes of UC.

In this case, as I read what has been posted, the biopsies in 2010 DID NOT SHOW UC, and the diagnosis was made based on other symptoms. This is questionable since histological changes are required. Maybe they just did not biopsy the exact right spots. But diagnosis (even provisional) does give a basis for prescribing and for insurance reimbursement. The alternative would be more extensive, likely expensive, and maybe not readily available tests to figure out exactly what if not UC. Sounds like in 2010 they decided to assume UC and treat.

However, the pattern of flares being small, resolving so quickly, staying quiet for months w/o any anti-inflammatory meds, and then predictably returning - well that is possibly UC, but it is an odd pattern. Sorta not very UC'ish.

Now some recent labwork also fails to show evidence of UC even thought you are flaring. That is super-odd. That is why the new doc wants to get your colon figured out. If you don't have UC you might have something rare but curable. Or you could have something real serious that needs to be found. -- But, you could just have an atypical case of UC.

Since you do not describe recent labwork it is hard to have more insight. If the labs tested serum and stool markers of inflammation, and tested blood counts and eosinophils and antigens... etc, and all were normal that is much more odd than if they just tested one marker of inflammation.

Having symptoms "unmasked" is a good idea for getting your colon figured out. If the histological signs are there when things get a little worse, then the diagnosis is complete, and the question, "Is this something else?" can be put to rest. It is an unfortunate idea for getting this flare resolved quicker. But it seems to be an option you have, while someone suffering more from flares could not afford to get worse. Further, your history of responding quickly also argues for risking getting a little worse - because there is good expectation to have good response to meds after scoping.

You may choose not to do this. You may choose to find a GI who will just continue to treat the symptoms. But what this GI wants to do makes a lot of sense.

Blood and mucus is generally colitis, but it can be other things.

Post Edited (DBwithUC) : 10/22/2013 2:47:28 PM (GMT-6)

Posted 10/22/2013 11:56 PM (GMT 0)
While The main forms of IBD are Crohn's disease and UC, there are a half a dozen or so of other forms of IBD. I wonder if your GI might be wanting to confirm UC rather than something else.

see http://en.wikipedia.org/wiki/Inflammatory_bowel_disease
Posted 10/23/2013 1:00 AM (GMT 0)
Thank you all for the responses!
I'll be glad when it's over. Always afraid of what they're going to tell me :(
Posted 10/23/2013 3:36 PM (GMT 0)

DBwithUC said...
The point of the scope (for everyone else) is to get diagnosis and/or check remission status. they look for ulceration, the look at patterns of ulceration/inflammation, and they take biopsies that either will or will not show the histological changes of UC.

In this case, as I read what has been posted, the biopsies in 2010 DID NOT SHOW UC, and the diagnosis was made based on other symptoms. This is questionable since histological changes are required. Maybe they just did not biopsy the exact right spots. But diagnosis (even provisional) does give a basis for prescribing and for insurance reimbursement. The alternative would be more extensive, likely expensive, and maybe not readily available tests to figure out exactly what if not UC. Sounds like in 2010 they decided to assume UC and treat.

However, the pattern of flares being small, resolving so quickly, staying quiet for months w/o any anti-inflammatory meds, and then predictably returning - well that is possibly UC, but it is an odd pattern. Sorta not very UC'ish.

Now some recent labwork also fails to show evidence of UC even thought you are flaring. That is super-odd. That is why the new doc wants to get your colon figured out. If you don't have UC you might have something rare but curable. Or you could have something real serious that needs to be found. -- But, you could just have an atypical case of UC.

Since you do not describe recent labwork it is hard to have more insight. If the labs tested serum and stool markers of inflammation, and tested blood counts and eosinophils and antigens... etc, and all were normal that is much more odd than if they just tested one marker of inflammation.

Having symptoms "unmasked" is a good idea for getting your colon figured out. If the histological signs are there when things get a little worse, then the diagnosis is complete, and the question, "Is this something else?" can be put to rest. It is an unfortunate idea for getting this flare resolved quicker. But it seems to be an option you have, while someone suffering more from flares could not afford to get worse. Further, your history of responding quickly also argues for risking getting a little worse - because there is good expectation to have good response to meds after scoping.

You may choose not to do this. You may choose to find a GI who will just continue to treat the symptoms. But what this GI wants to do makes a lot of sense.

Blood and mucus is generally colitis, but it can be other things.

 

 

 

Thank you for the long, in depth response. I agree...

Posted 10/28/2013 4:25 PM (GMT 0)
My dr has me starting my prep tomorrow (tuesday) morning. My colonoscopy isn't until 2:00 wednesday afternoon. Doesn't this seem like a lot of time to go without eating etc?
Posted 10/28/2013 6:42 PM (GMT 0)
yep....that's why do won't do that type of prep. I did it once and didn't do well with the liquid diet stuff...ugh.

You might ask if you can do the gallon prep, and eat lightly today and tomorrow morning and start the prep tomorrow late afternoon.

q

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