LC is not an IBD?

AntiLC · Post by **AntiLC** » Wed Oct 17, 2012 11:57 am

During the CT for my ruptured appendix, they found a "hypoechoic" lesion on my liver that needed to be checked out. I saw a new Gastro as a result. On the initial paperwork, I checked that I had an IBD, referring to LC. He told me that was not an IBD, he said it's just another variation of colitis. Is that accurate?

fatbuster205 · Post by **fatbuster205** » Wed Oct 17, 2012 2:51 pm

Hi AntilC,
That doesn't make sense to me? Colitis is an IBD ergo so is any variation such as LC surely?
Tex??
Anne

Post by **tex** » Wed Oct 17, 2012 3:27 pm

Anti,

Anne is quite correct. I'm afraid you've been misinformed by a GI specialist who apparently found his certification as a gastrointestinal specialist in a box of Cracker Jacks.

If you look up "colitis", you will find that most dictionaries (including dictionaries of medical terms), typically describe it as " inflammation of the colon". If you look up "inflammatory bowel disease" you will typically find it described as "A group of chronic intestinal diseases characterized by inflammation of the bowel".

Note that the term "group" always refers to more than two (two is only a pair).

http://www.medterms.com/script/main/art ... lekey=7536

Technically, in order to qualify as an IBD, the inflammation needs to be chronic, but there is no question that the inflammation associated with MC is definitely chronic. I'll bet that doctor isn't even aware that celiac disease is an inflammatory bowel disease.

That said, your GI doc is not the only one laboring under that misconception. Even Merriam-Webster is quite confused in this case (probably due to not updating their data in the last 40 years):

Definition of INFLAMMATORY BOWEL DISEASE

:either of two inflammatory diseases of the bowel:

a : crohn's disease

b : ulcerative colitis

http://www.merriam-webster.com/medical/ ... %20disease

The failure to recognize MC as an IBD is a somewhat common phenomenon among uninformed "authorities" who should know better. Shame on them.

Tex

humbird753 · Post by **humbird753** » Wed Oct 17, 2012 4:16 pm

That is pathetic that a GI "specialist" does not recognize LC as an IBD!!!

Even without a degree, I figured that one out. What are they being taught in medical school?

Paula

JLH · Post by **JLH** » Wed Oct 17, 2012 8:08 pm

Ah, yes, remember the CCFA said MC was not an IBD and then back pedaled when I sent them info from a hospital digestive center?

"Posted: Mon Jul 14, 2008 9:27 am Post subject: Crohns and Colitis (CCFA) response

--------------------------------------------------------------------------------

"I’m sorry for the delay in response. I have learned from CCFA’s Vice President of Research and Scientific Programs that CCFA does not sponsor research specific to microscopic colitis since it is not considered Inflammatory Bowel Disease. CCFA’s research is focused on IBD – Crohn’s disease and ulcerative colitis. As you may know, we do provide information about microscopic colitis on the website for those patients who have been diagnosed with the disease and are unclear about the difference between microscopic and ulcerative colitis: http://www.ccfa.org/about/news/microscopiccolitis . As I mentioned during our conversation, much of the research that focuses on IBD, ulcerative colitis, can translate to helping patients with microscopic colitis. In particular, the research for newer and better treatments to decrease inflammation in the colon can be beneficial to patients with both diseases."

tlras · Post by **tlras** » Thu Oct 18, 2012 8:56 am

Unbelievable! But that is definitely something my GI would say as well! I'm sorry but his statement makes no sense. I guess I shouldn't be surprised. Every time you hear about IBD, they are usually only talking about Crohn's or Ulcerative Colitis. Even SCD Lifestyle mentions just the two. I'm wanting to scream out and say "hey, you are forgetting about MC....hello!" There is one doctor on Youtube...can't remember his name who talks about IBD's and mentions Crohns, UC and MC....bless him!

Terri

AntiLC · Post by **AntiLC** » Thu Oct 18, 2012 10:48 am

Despite the fact that my first Gastro discovered the LC, she is also the one who neglected to tell me that was the source of the problem and not the gallbladder she initially diagnosed and which was subsequently removed for no particularly good reason.

This second one doesn't seem like much of a prize either. Is it just bad luck or are many Gastro's uhm confused?

Glad I have you all as a resource.

coryhub · Post by **coryhub** » Thu Oct 18, 2012 2:58 pm

We are growing in strength and numbers and the internet is educating us in the latest research more that many of our GI's who aren't keeping up. When I read such comments from gastro specialists I wonder if they just pull facts out of their bottoms thinking we the public are ignorant. Well, not any more we're not.

mzh · Post by **mzh** » Fri Oct 19, 2012 7:36 am

I suspect most GI docs are good at endoscopies and colonoscopies and not at diagnosing the causes and treatments of the problems they find during the procedures. The procedures are the money-makers so perhaps they are just lax about studying the causes of and treatments for the findings. And taking out a gallbladder for no particular reason is malpractice, IMO. Well, that's my rant for the day!

Gayle · Post by **Gayle** » Fri Oct 19, 2012 9:40 am

AntiLC said:

I saw a new Gastro as a result. On the initial paperwork, I checked that I had an IBD, referring to LC. He told me that was not an IBD, he said it's just another variation of colitis. Is that accurate?

This is quite an interesting statement from a definitional point of view. You might have in turn asked him how he defines colitis? This should have been an opening for quite an interesting conversation all the way around. To bad you apparently let the opportunity pass. Next time don’t be so easy on him.

Hard telling what he exactly was trying to say – at any rate, whatever it was, it didn’t come off well. Had he made such a slothful statement on a written test for peer review -- he would have flunked. Maybe he was in a bad mood, maybe the wife fed him ground glass for breakfast. OR maybe he is just plain a dolt … who knows.

Has he actually been Board Certified Internal Medicine and in Gastroenterology?

Next time you are asked to fill out that all important paperwork for any Drs. office, I suggest you forget the acronyms – DO NOT write IBD. Instead spell out Lymphocyctic Colitis (or whatever).

MZH said:

I suspect most GI docs are good at endoscopies and colonoscopies and not at diagnosing the causes and treatments of the problems they find during the procedures. The procedures are the money-makers so perhaps they are just lax about studying the causes of and treatments for the findings. And taking out a gallbladder for no particular reason is malpractice, IMO. Well, that's my rant for the day!

Actually, when one reads here … the GI’s always get credit for diagnosis, but in the case of MC, it is always the pathologist that always makes the final diagnosis. Of course the pathologist never speaks in person to the patient. So the GI Doc is the intermediary of information between what the pathologist has said and what the patient is told. The GI Doc that does the procedures is merely delivering to the pathologist the “goods” with which the actual diagnosis will come. The GI may have ‘suspected’ MC which was what prompted the biopsies, but he still does not know until report comes back from Pathologist. The ability of pathologists does vary with their experience level. Pathologists who work in institutions where they deal with a LOT of GI disease are better at differential diagnosis than are pathologists who have less experience within these diseases. This is a place where raw experience definitely does count. And then after diagnosis is made, it is of course helpful if the GI Doc has some familiarity with the condition. Unfortunately that is not always the case.

Gayle

AntiLC · Post by **AntiLC** » Fri Oct 19, 2012 3:12 pm

I fired the first Gastro and swore to avoid them since the only thing that helped my LC was simply time and finding this site. I went to the second gastro because during the CT for my ruptured appendicitis this summer, they found a "hypoechoic lesion" on my liver and I was told to get an order for an MRI and to do that I needed a Gastro.

To add insult to injury, my labs showed a very slightly elevated ALT (liver enzyme). As a result, this Endo put a diagnosis of "hepatitis" on my chart because apparently slightly elevated enzymes can SUGGEST liver inflammation which he said is what hepatitis is (although to console me he told me he'd put in NON VIRAL hepatitis, which to me makes absolutely no difference). So now I have a handy, dandy new diagnosis in my medical charts for no particularly good reason. I asked him to take it out and simply state "slightly elevated ALT" but he refused.

I can't ask him the questions you suggested Gayle since I have no intention of ever seeing him again.

You are correct that it was the pathologist that made the diagnosis, I hadn't thought of that. So in effect, she was basically just worthless. And yes, they are very big on pushing for the procedures but when it comes to how to address them they are, IMHO, worthless. She provided virtually no support after the LC was diagnosed, I diagnosed my own Celiac, confirmed by testing, which considering I have both LC and Grave's, from what I've read on this site is almost a given and yet she informed me that it was very unlikely prior to the blood test.

Geez in looking back at this post, I realize I've written a book AND I'm just a plain medical mess lol Also apparently I have some unresolved anger lol

cjbndtsn · Post by **cjbndtsn** » Fri Oct 19, 2012 3:24 pm

LOL OMG your 2nd GI doc sounds like the 1st one I had and she was a woman. She was the most unempathetic person I have ever met, rude as hell, and completely out of the loop for treatment. I have said since day one of my MC starting that I would never wish this terrible disease on anyone but by the time I was done with her..............I truly hoped she would get it so that maybe JUST maybe she might understand how those of us with it feel and what we need for treatment. Your not located in Peoria, Il are you????? ROFLMAO

Gayle · Post by **Gayle** » Sat Oct 20, 2012 12:47 pm

AntiLC said:

I can't ask him the questions you suggested Gayle since I have no intention of ever seeing him again.

Well darn, then we will never know what this Doc really meant, or how he would define colitis!

I am repeating myself here --I realize --- but when you are given an information sheet to fill out at Dr’s office, ALWAYS use the exact diagnostic terms of the condition you are claiming … in this case you said you wrote IBD. That kind of term is non-specific, it gives them an automatic opening to quibble or bicker with your claim if they feel like it. If you were diagnosed as having Lymphocyctic Colitis (??) – that is what you should write, and further, with this kind of a diagnosis, you would be wise to be prepared every time you see a new or strange Doc by having that diagnostic report in your hot little hands to be able show it if challenged or questioned further.

But persons should never allow themselves to believe that the Doc (any Doc) will mourn, or for that matter ever even be aware of, or care if, a patient that they saw one time, never showed up again. So you definitly should not waste your emotional energy by maintaining any degree of anger regarding this experience. That kind of anger is a very negative emotion that only affects you. IMHO -- That’s a complete waste of ones own energy which is basically self defeating.

Geez in looking back at this post, I realize I've written a book AND I'm just a plain medical mess lol Also apparently I have some unresolved anger lol

Unresolved anger

is definitely something to deal with, and quickly. There truly is a brain–gut connection. And as you have had an opportunity here to recognize this anger aspect, I bet you are now also ready to deal with it. That would be a big positive for you. Anger is not doing your gut issues any good now, and never will. Persons who indulge themselves in unrelenting and unresolved anger tend to become their own worst enemy. It’s time to have a serious discussion about the anger issue with yourself. You can and must get that behind you.

Personally, I will not accept that you are a medical “mess”, and I would sincerely hope that you would not accept such a status for yourself either. As I bet you are also aware, … we do tend to become what we believe. I just refuse to believe that what you really want to be, or become, a permanent “mess”. Don't let that happen.

Wishing you better times,
Gayle

AntiLC · Post by **AntiLC** » Tue Oct 23, 2012 9:35 am

Gayle wrote:AntiLC said:
I can't ask him the questions you suggested Gayle since I have no intention of ever seeing him again.
Well darn, then we will never know what this Doc really meant, or how he would define colitis!

I am repeating myself here --I realize --- but when you are given an information sheet to fill out at Dr’s office, ALWAYS use the exact diagnostic terms of the condition you are claiming … in this case you said you wrote IBD. That kind of term is non-specific, it gives them an automatic opening to quibble or bicker with your claim if they feel like it. If you were diagnosed as having Lymphocyctic Colitis (??) – that is what you should write, and further, with this kind of a diagnosis, you would be wise to be prepared every time you see a new or strange Doc by having that diagnostic report in your hot little hands to be able show it if challenged or questioned further.

But persons should never allow themselves to believe that the Doc (any Doc) will mourn, or for that matter ever even be aware of, or care if, a patient that they saw one time, never showed up again. So you definitly should not waste your emotional energy by maintaining any degree of anger regarding this experience. That kind of anger is a very negative emotion that only affects you. IMHO -- That’s a complete waste of ones own energy which is basically self defeating.

Geez in looking back at this post, I realize I've written a book AND I'm just a plain medical mess lol Also apparently I have some unresolved anger lol
Unresolved anger is definitely something to deal with, and quickly. There truly is a brain–gut connection. And as you have had an opportunity here to recognize this anger aspect, I bet you are now also ready to deal with it. That would be a big positive for you. Anger is not doing your gut issues any good now, and never will. Persons who indulge themselves in unrelenting and unresolved anger tend to become their own worst enemy. It’s time to have a serious discussion about the anger issue with yourself. You can and must get that behind you.

Personally, I will not accept that you are a medical “mess”, and I would sincerely hope that you would not accept such a status for yourself either. As I bet you are also aware, … we do tend to become what we believe. I just refuse to believe that what you really want to be, or become, a permanent “mess”. Don't let that happen.

Wishing you better times,
Gayle

To be accurate I checked IBD and next to it wrote Lymphocytic Colitis, which is what sparked his comment in the first place. Since initially writing this I got to thinking, if "Colitis" isn't an IBD (based on his definition) then Ulcerative Colitis wouldn't apply either as, in his words, it's just another Colitis.

I genuinely believe it was as a result of medication prescribed to me that has been implicated as a trigger for LC that I have not only LC, but since the odds of incurring another autoimmune disease rise, I have Celiac and now also have been recently diagnosed with Graves. 4 years ago before all this happened, I was healthy as a horse and there is no history of AI diseases in my immediate or extended family.

I lost my gallbladder based on a misdiagnosis that eventually turned out to be LC and am at risk for losing my thyroid. So do I feel I have a right to be angry at a multitude of doctors? Hell yes. However, to your point, I agree that my anger towards them only serves to poison me. Thankfully, when I go about my day, they are certainly not in the forefront, but when I hurt, they all are there.

The win for me is to feel better. I have spent all of this time trying to mitigate the damage at the hands of others. I eat better then I ever have, I put a priority on sleep, I keep my life as simple as possible, I have had to change how I deal with stress. So that is how I go to war with these people. The best thing I can do for myself is not to need them, so I'm focusing my energy on just that. But again, when symptoms of any of the above diseases flairs, I have to admit, I take great joy in fantasising what I would do to them, given the opportunity. Other than that, all I want is to do is move forward in my life and let this last 4 years be a distant memory.

As far as the mess, no that's not how I see myself. More of a wounded warrior. :)

Thanks for your input and support !

AntiLC · Post by **AntiLC** » Tue Oct 23, 2012 9:39 am

cjbndtsn wrote:LOL OMG your 2nd GI doc sounds like the 1st one I had and she was a woman. She was the most unempathetic person I have ever met, rude as hell, and completely out of the loop for treatment. I have said since day one of my MC starting that I would never wish this terrible disease on anyone but by the time I was done with her..............I truly hoped she would get it so that maybe JUST maybe she might understand how those of us with it feel and what we need for treatment. Your not located in Peoria, Il are you????? ROFLMAO

I can't count the number of times I have wished more than one doctor, to suffer what I suffered as a result of them. So I'm right there with you!! I don't live in Peoria, but perhaps they are related?!?! LOL