HELP ME

[lisa15601]

Final Diagnosis
Random Biopsies throughout colon: Colonic Mucosa Biopsies, One Fragment shows mildly elevated Intraepithelial Lymphocytes.

Note:
These Findings are non-specific. However, it raises possibilty of boderline changes of Microscopic Colitis. Clinicopathological correlation is recommended.

What does everyone make of this.


This is why I am so confused. My gastro in Boston says it it MC and IBS. She says they have the best pathologists. My gastro in my area is not convinced. This is why I am so confused. Colonoscopy again I think. If you read my old posts you will see why I am going crazy,

[tex]

These Findings are non-specific. However, it raises possibilty of boderline changes of Microscopic Colitis. Clinicopathological correlation is recommended.

OK. I'll go through this one more time. First off, the sentence that I've highlighted in red, is incorrect, in view of the pathological finding listed below:

One Fragment shows mildly elevated Intraepithelial Lymphocytes.

That is a clear and indisputable marker for LC, (despite either the pathologist's, or your doctor's ridiculous claim that it is non-specific. It is clearly specific for LC, (based on the "official" medical description of the "disease").

This reference should be illuminating, (you probably have paucicellular LC):

http://ajcp.ascpjournals.org/content/122/3/405.full.pdf

Note the pathologist's recommendation of clinicopathological correlation: Do you understand what that means? It means that your histological findings should be compared with your clinical symptoms, to verify a diagnosis. So let's do that.

What is your pathological finding? - you have the markers of LC.

What are your clinical symptoms when you are having a flare? Do you have any of these symptoms - watery diarrhea, cramps, bloating, aches, pains, headaches, nausea, fatigue, brain fog, confusion, etc.? You don't have to have all of them, but if you have any of them, guess what? That's sufficient clinicopathological correlation to verify that you have lymphocytic colitis.

The claim of the GI doc in Boston that you have "IBS", is proposterous, since there is no such thing as "IBS". There are no diagnostic criteria for "IBS" - "IBS" is simply an arbitrary medical term, which, when literally translated, means, "I don't have the foggiest idea what's wrong with you". IBS is a diagnosis handed down by doctors who either don't understand MC, or they fail to take biopsies, when doing colonoscopy exams.

In my strictly unprofessional opinion, you are being taken advantage of by a bunch of wannabe doctors, who are taking your money, and trading it for worthless advice. You can't win, playing that game, but they win every time you see them, (since your money is transferred from your bank account, and your insurance company, into their bank account, and you get nothing but BS in return). And that's my 2 cents worth, FWIW.

Tex

[lisa15601]

I don't have watery diarrhea or nausea.I do have pain and loose stools, and my food doesn't digest very well. So, that's y im confused. I have mucusy stools. No mess have worked so maybe it is ibs

[harma]

lisa for what it is worth, before I was diagnosed, I also didn't always have watery D, but also quite often loose stools, Also a couple of times a lot of mucus in my stool, twice it was only mucus. And it was quite normal after emptying my bowel and checking was I had left in the pot, I could tell what I had been eating for dinner the day before.

[lisa15601]

I get mucus alot and none of the medications that I've been given for Al have worked and neither has the gluten free. So can u see y I am tired of this. I do have anxiety so that's not helping. Maybe with a new colonoscopy I will have new and better answers, cuz obviously my old gastro justs want to medicate me.

[jmayk8]

Lisa,
I have NEVER had watery D. Always loose and 'piles' of unformed stool in the toilet. Mucus sometimes but, never any pain and most of the time undigested food. I was diagnosed with LC last week at Mass General North Shore. I have a great GI there that you might want to see, it seems like you are in the area. From what I have read on this site, everyone's symptoms are different. I agree with Tex, no such thing as IBS

[TooManyHats]

As a medical transcriptionist (the one who types what the doctor says when he looks at your pathology specimens), here is my interpretation:

It appears you have MC.

These Findings are non-specific. However, it raises possibilty of boderline changes of Microscopic Colitis. Clinicopathological correlation is recommended.

The highlighted part is what we affectionately refer to as a CYA (cover your a$$) statement. Many doctors put that on every report standardly. I suppose it must work well if they are swept up by a lawyer in a malpractice suit. I type statements like that hundreds of times every day.

[tex]

I get mucus alot

Copious amounts of mucus are produced by the mucosa of the intestines when inflammation reaches severe levels. It's a natural defense mechanism against the inflammation. Inflammatory bowel diseases, (such as Crohn's, UC, and MC), are caused by inflammation, so they involve mucus, whenever the inflammation is severe. The difference between what is called "IBS" and an IBD, is inflammation, and therefore IBS should not involve mucus. I realize that some misinformed doctors claim that IBS also can involve inflammation, but that is absurd, because that would make it an IBD, by definition.

Tex

[Gabes-Apg]

I had the mucas situation for many years, namely during the period that i did not have chronic D, but based on my learnings from this site i now realise I did have MC.

Arlene's statement about CYA is too true. There are alot of doctors, in alot of countrieds that are quick to doubt assessment by others namely if they can make money from that.
they will never discredit another doctors diagnosis they will make generic statements CYA type statements.

this is not an excuse but it is something to take into consideration, based on all the dicussions here about varioius types of symptoms patients present with, and the varying techniques that can minimise the symptoms and heal the body conditions like MC may well be overwhelming for doctors and specialists, as they cant give you a guarenteed solution....

Lucky for us we have this site, its wealth of knowledge and understanding. In situations like this assessing the facts and making your own decision is important. And ultimately, listen to your body, if certain things cause your digestion to react in any of the ways that are MC type symptoms, then you have your answer.

Sorry you have had such a crappy exhausting week.

[hoosier1]

Tex,

You nailed it. "There is no such thing as IBS". Amen, amen, amen.

I am so tired of hearing GI docs tell their patients of this "diagnosis". I was told this for almost 15 years!

It means they have no clue or didn't look hard enough for the true pathology.

Rich

[ant]

Dear Lisa

So sorry your doctors are confused and confusing. FWIW I too had loose stools (about 60% of the time) and D (about 30% of the time) between onset of obvious symptoms and diagnosis.

As we say we are all different, except we have inflammation in the colon (and often elsewhere) that we have to deal with.

I agree with Tex. Your mucus and 'mildy elevated Intraepithelial Lymphocytes' prove you have an inflamed colon i.e. "colitis". The fact that microscopic examination identified the 'mildy elevated Intraepithelial Lymphocytes' is why the medical community coined the term "microscopic colitis".

Tex, I just read the references you posted. wow!

Earlier LC studies were almost exclusively of symptomatic patients with watery diarrhea, loose stools, or altered bowel habits. LC in an asymptomatic or nondiarrheal patient was considered unusual.25,26 Over time, the scope of investigation has expanded to include more diverse patient groups, including asymptomatic patients. One recent study found that 20 of 50 routinely biopsied patients with Hashimoto thyroiditis had LC.27 Only 5 of 20 patients with LC had diarrhea; the other 15 patients were asymptomatic. Although the patient groups are different, approximately 25% of patients in both studies had LC. Other authors have commented that LC could include patients without diarrhea,8,21,28 and LC occasionally has been the harbinger of active Crohn colitis.29 Together, these findings suggest that LC is more common than previously reported and can be found in a wide range of patients, including those who are asymptomatic and those without watery diarrhea syndrome. We are cautious about interpreting our results to suggest that the prevalence of LC is increasing in asymptomatic adults. LC might be more common than previously thought simply because routine colon biopsies are being performed on a broader spectrum of patients.

My highlights in red. This explains why I could have had MC for years without obvious GI symptoms (but with symptoms like ataxia and the invisible onset of osteoporosis)

Best, ant

P.S. I know that increased incidence of osteoporosis is not clearly linked with MC, although it is to Celiac. And, of course, Celiac is itself linked to MC.

[ant]

Dear Lisa

So sorry your doctors are confused and confusing. FWIW I too had loose stools (about 60% of the time) and D (about 30% of the time) between onset of obvious symptoms and diagnosis.

As we say we are all different, except we have inflammation in the colon (and often elsewhere) that we have to deal with.

I agree with Tex. Your mucus and 'mildy elevated Intraepithelial Lymphocytes' prove you have an inflamed colon i.e. "colitis". The fact that microscopic examination identified the 'mildy elevated Intraepithelial Lymphocytes' is why the medical community coined the term "microscopic colitis".

Tex, I just read the references you posted. wow!

Earlier LC studies were almost exclusively of symptomatic patients with watery diarrhea, loose stools, or altered bowel habits. LC in an asymptomatic or nondiarrheal patient was considered unusual.25,26 Over time, the scope of investigation has expanded to include more diverse patient groups, including asymptomatic patients. One recent study found that 20 of 50 routinely biopsied patients with Hashimoto thyroiditis had LC.27 Only 5 of 20 patients with LC had diarrhea; the other 15 patients were asymptomatic. Although the patient groups are different, approximately 25% of patients in both studies had LC. Other authors have commented that LC could include patients without diarrhea,8,21,28 and LC occasionally has been the harbinger of active Crohn colitis.29 Together, these findings suggest that LC is more common than previously reported and can be found in a wide range of patients, including those who are asymptomatic and those without watery diarrhea syndrome. We are cautious about interpreting our results to suggest that the prevalence of LC is increasing in asymptomatic adults. LC might be more common than previously thought simply because routine colon biopsies are being performed on a broader spectrum of patients.

My highlights in red. This explains why I could have had MC for years without obvious GI symptoms (but with symptoms like ataxia and the invisible onset of osteoporosis)

Best, ant

P.S. I know that increased incidence of osteoporosis is not clearly linked with MC, although it is to Celiac. And, of course, Celiac is itself linked to MC.

[lisa15601]

I was on entocort for almost a month I got a bad reaction from it. Now Im on Sulfasalazine for over a month and still hurting. Thats why Im not convinced.

[Joefnh]

Hi Lisa, I'm sorry to hear that you are still having a tough time. I have to agree that IBS really is just an undiagnosed IBD. Given that you are having a tough time with meds does make dealing with this somewhat harder.

Lisa have you had a pill camera study yet? The reason I ask is I have to wonder if you have non MC involvement in other areas besides the colon or terminal ilium. The standard colonoscopy cannot look at small intestines. Keep in mind that CC and LC can present in any part of the digestive track., diagnosing it there is harder in that taking a biopsy there is hard to do. Have you had a endoscope study with biopsies to look at the stomach etc?

How is your diet going? Another thought would be to look into Enterolab or maybe MRT testing to help identify if there are any foods that could be triggering these symptoms. As you know the common items that cause reactions for most of us are the gluten and soy and for many dairy.

I think to summarize what Tex has said if it walks like a duck and quacks like a duck... it is a duck. From our earlier discussions, you certainly do have the textbook symptoms for MC.

I know that you have been quite frustrated with this and hope that you can find some relief soon. I believe another member recently mentioned a good GI doctor just north of Boston, as frustrating as it can be finding the right doctor is important. I went through 2 of them until I found one that was willing to look at and treat what was eventually found to be CC and Crohns.

Take care Lisa I do hope you are feeling better soon. Finding your way through this can seem like a maze at times. If there's one thing MC teaches us is patience.

--Joe

[lisa15601]

I am having an upper endoscopy too.