New Here, Been Sick For A Year

[pavlovs-cat]

I've been sick for a year now and I can't seem to find a doctor that can diagnose me.

In August of 2008 I began having chronic diarrhea, severe right sided abdominal pain, nausea and weight loss. I have had at least a dozen ER visits since then. The doctors initially told me it was a virus. When it didn't go away they started taking out body parts. They started with my gall bladder and then moved on to my appendix. The problem is still not gone. It seems to happen intermittently and I can't seem to find a certain food that triggers it.
I had my first visit to a GI doctor today and they diagnosed me with IBS.

I'm not really satisfied with that diagnosis. It seems to be an umbrella term for "we don't know".

I'm going to get a second opinion and I have been researching my symptoms to see if I could have been misdiagnosed. That's when I ran across info on Microscopic Colitis. I thought this might be an answer to my problem.

I really have a gut feeling (no pun intended) that the doctors are missing something. I'm at my wit's end with this whole situation! It has taken it's toll on my mental and physical health and my quality of life has diminished.

Does this sound totally crazy or does anyone think I have a case here?

[Lucy]

Cat,

So good to have you on board!
No, you are not crazy, but if you have M.C., it could be a manifestaton of the disease. Ha! At any rate, it causes a multitude of problems you wouldn't always suspect would be related.

My first question to you would be, "Did you have a colonoscopy with BIOPSIES?" It's those biosy results that come back positive or negative for M.C. If not, I would find a /GI doc who will take biopsies all along the colon during the scoping to make sure that's what's causing the problem. Much of what is called IBS is indeed M.C. IBS is sort of a functional diagnosis whereas M.C. tells you the actual pathology in the gut.

It sounds as though you've not gotten that far along in your treatment. I wouldn't be surprized if you didn't show up with gallstones around the time of your diagnosis. That happened to me, and I had my GB out, thank goodness, as those things were about to move into the duct. I'd not told my surgeon the extent of my diarrhea, however, but the ultrasound indicated I needed that thing removed. I believe that many of us have had various associated gut problems like GB disease and diverticulitis, along with our M.C. Unfortunately, for many of us, it doesn't end in the gut. I hope you'll get the above mentioned tests right away if you've not already had them. With the dx of M.C. we have made alot of progress in helping a lot of people since we've been a group.

Toward a speedy diagnosis and recovery!
Yours, Luce

[ant]

Dear Cat

Welcome to the board. There is so much information here and kind people who have had similar experiences, who know your pain and frustration.

I am sure others with more knowledge than me will be along shortly. As Luce said, a first step would probably be a colonoscopy done by a GI doc that knows all about how to test for MC. If I had not had a colonoscopy and an MC diagnoses I would never have known what I had or found this site. As you will see from many people's experience here, lots of doctors do not seems to put much store on diet as a treatment, but for most of us it is key.

Wishing you all the best, Ant

[Gas Bag]

Cat, you poor dear. (love your screen name by the way )

Yes you need to find a GI and have the biopsies for MC. We will all tell you the same thing.

In the meantime read up on things around here, you will see you are not alone, not by a long shot.

Deb

[JLH]

Cat, we're glad you found the PP. It's the best place in the world for information and support. Read here and at www.enterolab.com

[mbeezie]

Welcome Cat,

Sorry to hear you have been struggling for a year.

Many people with chronic diarrhea find some relief from diet changes. Has Celiac Disease been ruled out? The vast majority of people on this site are gluten intolerant (not necessarily Celiac), along with dairy and soy intolerances. Many of us tested for this at Enterolab - you do not need a doctor's order to do this. The tests are very accurate and can help you identify major food intolerances that contribute to diarrhea. I would not wait to try the diet to get some relief, however, if Celiac Disease has not been tested for, I would get a blood test immediately, before starting the diet. Don't be surprised if your doctor doesn't agree with these suggestions - we have all come across doctors who don't know much in this area.

I encourage you to read the newbie info and search through old threads to get answers to your questions.

Take care,

Mary Beth

[tex]

Hi PC,

Welcome to our internet family. You've already received plenty of good advice, so all I will add is that I'm amazed that your doctors started removing organs, without even bothering to rule out celiac disease or all of the IBDs.

I agree that you should not be satisfied with a "diagnosis" of IBS - you need a colonoscopy exam, with biopsies, to rule out MC, and you need an "upper" endoscopy with biopsies, to rule out celiac disease. As far as I can tell, the celiac "screening" blood tests, are pretty much worthless, because they yield too many false negatives, and when a patient receives a negative test result, then the doctor will usually opt to not do an "upper" endoscopy with biopsies, so the patient ends up "falling through the cracks" in the system, and never being correctly diagnosed.

Most doctors don't seem to realize that MC is typically most active in the right-side colon, but that's not surprising, since most doctors know very little about MC in general.

Good luck with finding a doctor who actually knows what he or she is doing, so that you can get a definitive diagnosis.

Tex (Wayne)

[JoAnn]

Welcome Cat, A year ago, I was where you are now. Had a colonoscopy with biopsies. My colonoscopy looked clean as a whistle, but the biopsies showed mc.
They put me on Asacol, which did nothing but make it worse with lots of side effects. I eventually found this board which saved my life! The showed me the way as far as diet and treatment. I did the Enterolab tests and found I am sensitive to gluten, dairy, soy, egg, and yeast. I've been on Entocort for 6 months and am beginning to taper down. There are a lot of bumps in the road, but if you will follow the great advice given here, you will get your life back. They continue to coach and inspire me everyday. JoAnn

[Gayle]

Hi Cat,

Your story is fairly typical of the experience of many folks with MC. Your multiple trips to the ER were never going to be diagnostic in the direction of MC, as ER Docs are looking only for issues that need immediate interventions.

Don't see your age or sex listed here, but the "Profile" (according to GI Docs) of a patient with MC is Female over the age of 50. I emphasize however that this "Profile" is of the 'typical MC patient', but by no means are MC patients limited to fitting this profile. There certainly are many males, younger females, and also children with this condition.

It is just that a person who fits the "profile" might have this condition considered sooner, while persons who do not fit the profile will not be as likely considered for MC UNTILL/UNLESS YOU ASK.

Do pursue this avenue with a Gastro-enterologist. Most Physicians outside of the specialty haven't the foggiest idea about MC.



Good Luck

Gayle

[pavlovs-cat]

Thank you all for the advice and words of confidence. I have been so frustrated for so long that I have begun doing my own research of my symptoms and possible causes. I had my first GI appointment yesterday. I waited 6 months to get in and see someone. When I voiced my concerns they were very quickly dismissed. I have seen lots of diseases/syndromes that have the same symptoms that I am experiencing and I want a doctor that will test me to rule out all possible diagnoses before settling on IBS. I live in the Kansas City area and I have had trouble finding a doc that will pay attention and dismiss me as a hypochondriac!

My quality of life has suffered greatly over the past year. I am no longer able to work due to the symptoms I experience. My mental health has suffered as well since I am now very depressed and feel hopelessness. I can't hardly leave my house due to the bowel issues(diarrhea, urgency, nausea, pain) that I have.

[Gas Bag]

Thank you all for the advice and words of confidence. I have been so frustrated for so long that I have begun doing my own research of my symptoms and possible causes. I had my first GI appointment yesterday. I waited 6 months to get in and see someone. When I voiced my concerns they were very quickly dismissed. I have seen lots of diseases/syndromes that have the same symptoms that I am experiencing and I want a doctor that will test me to rule out all possible diagnoses before settling on IBS. I live in the Kansas City area and I have had trouble finding a doc that will pay attention and dismiss me as a hypochondriac!

My quality of life has suffered greatly over the past year. I am no longer able to work due to the symptoms I experience. My mental health has suffered as well since I am now very depressed and feel hopelessness. I can't hardly leave my house due to the bowel issues(diarrhea, urgency, nausea, pain) that I have.

The clincher for me was nocturnal, non-bloody D, that instantly made me GI sit up and take notice, I didn't even have to ask him to check for MC, he did it on his own. I know now how fortunate I was to go to him.

I know how hard it is to try and work, I had constant D for over 4 months, it is horrible being afraid to leave the house and try to have a life.
I hope you get some answers soon.

I don't know how it works with Docs, can you demand a test? I don't see why not, especially since your symptoms point to MC. Yeah I know I am living in a dream world perhaps.

Deb

[tex]

P-C,

Email Enterolab, https://www.enterolab.com/Home.htm , (click on the "Contact Us" link), and ask then to recommend a GI doctor in your area. You might mention that you can't find a doctor willing to test you for MC. They will do that for customers, and I'll bet that they might also do it for someone who is not yet a customer, but probably will be in the future.

The trouble with that "profile" that GI docs assign to patients with MC, is that it was wrong when they originally defined it, and it will always be wrong. They found MC in older women, because that's where they looked for it. You can't find MC, unless you look for it, and you have to know how to look for it. Their so-called "profile", is a self-fulfilling prophecy, that confuses everyone, (especially GI docs).


Gayle,

If you will look at the data listed beneath her avatar, you will see her age listed there. (I'm guessing at her gender, based on the gallbladder issue, and IBS diagnosis - I could be wrong, of course).

Tex

[Gayle]

Sorry Tex -- I did see that age listed on the Avatar when I went back after posting.

Yeah, I agree with your assessment about the way that the "profile" for MC was developed and defined. However, that IS how it IS looked at by the Docs and we simply have to deal with that, reasonable or not.

And when trying to establish a diagnosis they do usually go from most likely to least likely in a rather orderly (diagnostic tree) manner. (the word usually being the qualifier here)

The other thing I didn't notice in her original post (and yes, I too assumed female) was any part played by a primary Doc?

Now my curiosity is up though, and you have a better idea about this question.

Would you say that a larger percentage of folks on this chat fit that sex/age profile definition?? It does seem that way to me -- but I don't have your overview perspective.



Cheers,

Gayle

[tex]

Gayle,

Hmmmm. That's kind of a tricky question, because when we started, the only ways we were aware of someone's age, was if they posted it, or if they posted a picture upon which we could venture a guess, or a member told us about their grandkids, etc. Now, though, anyone can enter their age in their profile, (birthday information). Some choose not to enter that information, of course, (since it's optional), and some enter it, but select to not publicly display it. Sooooooo, there's still a lot of guesswork involved here, concerning age "demographics". Those who post frequently, usually disclose such information, but many, many members never post, or they post just a few times, and lurk. In those cases, that notation of their age, in their profile, can be helpful for answering questions such as yours. And, administrators of boards, can, of course, view any information in a member's profile, whether or not it is displayed publicly, so that helps a little, to access age patterns.

Thinking about it, during the last 2 or 3 years, I believe that most of our new members have been in the 30-something and 40-something range, with at least as many new members under the age of 30, as there are over 40. We have a surprising number of members who were diagnosed in their 20s, and some of them had symptoms for many years, before they were diagnosed. We have far more members who were under the age of 10, at the time of diagnosis, (or, more accurately, more mothers who registered because they had a child diagnosed with MC, under the age of 10), than we have members over the age of 70, for example.

I believe that the gender bias is skewed, also. IMO, men are not as likely to seek out an internet discussion board for support, as women are, (especially for an issue that involves discussing diarrhea). Believe it or not, I have had a fair number of new members e-mail me with questions, because they felt too embarrassed to post those questions on a public forum. Most of them were male, of course, and most of them never posted. I don't believe that men are even as likely to seek out medical help, for an issue that involves diarrhea. I can assure you that I wasn't in any hurry to see my doc about it, and when the GI doc didn't find anything wrong with me, after running me through all the tests - that was it, I was outta there, and I never went back, nor did I seek out another GI doc, to "try again". I was determined to either figure out what was wrong, on my own, or die trying, and I'm pretty sure that's a common attitude, among many males. Fortunately, it only took me a little over a year, to figure it out, but guys like me, are not recorded in the statistics. Since I didn't know what was wrong with me, I didn't have a name for it, and you can't find information on MC, if you don't know what it's called. Because of that, I didn't find the original board, where all the wonderful people who are among the founding members, here, were hanging out, until I had already achieved remission. When I happened to find them, though, I was so impressed by their knowledge, and their kind and sincere attitude toward support, that after lurking for a couple of weeks, I finally got up the nerve to join. That's more than you wanted to know, I'm sure, but it gives you an idea of the mindset I had, which is probably somewhat typical of many of those of my gender, (though I certainly don't pretend to qualify to speak for all of them).

MC is a disease of virtually any age, and if a gender bias exists, it's far less female-biased, than the statistics suggest, (due to inaccurate sampling methods). According to the apparent trend in new member registrations on this board, someone diagnosed with MC, (these days), is significantly more likely to be under the age of 40, than over that age. The bottom line is, IMO, the "official" medical profile assigned to MC, is so far off base, that it's ludicrous. That's just my opinion, though, and I'm certainly no doctor, so they're free to continue to misrepresent it, as they wish.

Tex

[ant]

Tex,

That's just my opinion, though, and I'm certainly no doctor, so they're free to continue to misrepresent it, as they wish. Laughing

What a wonderful turn of phrase! You write as sharp as a raiser hidden in soft putty. I love it.

That is fascinating about men being reticent to post. As a chap, I noticed there seemed to be more females than males on the board and put it down to "the profile" of MC. But then I could see the "older age profile" looked out of whack, especially the number of new member joining who are under 50. So, as you say, the official medical "profile" is probably a load of ludicrous


It would be funny except for the suffering caused to men, women and children of all aged who are not diagnosed. And, of course, if more people were correctly diagnosed, MC might not be an "orphan" illness. I know I am flogging a but just feel like having a good rant today - D came back this morning (I think it was was some accidental soy).

I know it is easy to transfer frustration and find scapegoats. So let me check myself. There are many wonderful, caring doctors and other medical professionals. There are doctors who have saved my life more than once.

BUT, it does seem that the academic end of the profession needs a kick up the arse. Or maybe, the incentives for truly successful cures need to be reset? Maybe we should pay those who find and champion real cures in the medical field the sort of money that bankers and movie stars get? Actually, all in the medical profession needs to be well rewarded for care and the pursuit of cure. OK, end of rant.

Anyway, here is a call to the chaps out there..... You do not have to be all touchy feely to show yourself on this board, there is plenty of debate here too ....and when all is said and done, surely it is far more embarrassing to poop than post.

All best, Ant