Just Found Out I Could Have Been "Diagnosed" 2 1/2

shewhowalksonland · Post by **shewhowalksonland** » Wed May 20, 2009 1:04 am

Hello everyone!

My name is Kate. This is my first post. I started having pain 3 1/2 years ago and heard every theoretical diagnosis from Endometriosis to IBS (with "there is nothing wrong with you, just take some Imodium" in between.)

2 1/2 years ago I was referred to a GI doctor (the one who told me to take the Imodium) who, after much I'm ashamed to say

crying, gave into my requests for more testing. My colonoscopy came up positive for Microscopic Colitis. The doctor told me it didn't really mean anything. I went on with pain meds and tried removing many things from my diet (but never longer then a month, and my family practitioner tested me for ever food allergy and of course all blood test came up negative).

A little over a year ago I went to a new GI doc for a second opinion. He put me on Asacol, Librium and Hyoscyamine. I made sure he had every test and made note of the MC (I was still under the impression that meant I had diarrhea). For the next year we played with my dosages and I ended up in the ER 4 times in extreme pain. The pain got so bad I went on disability last month to get on top of it.

I went in to my GI's office to request 2 more weeks of time off from work. When he filled out the paper work he wrote at the bottom "Microscopic Colitis" and left to see the next patient. I asked an assistant what that meant specifically and she told me it was a form of IBD.

So I am reeling a bit... a little

and a little embarrassed I didn't look harder into MC the first time I heard the term. I am very glad to find a place where I can talk about this. Just by scanning all the forums I can this is a good place for that. I am ready to remove foods from my diet again (starting with Wheat Gluten, Citrus and Tomatoes...) and take more control over my pain!

Thanks For listening to my VERY long tale!!

Kate (aka, shewhowalksonland)

starfire · Post by **starfire** » Wed May 20, 2009 5:06 am

Welcome, Kate!!!

You have had a most unfortunate experience with doctors who knew nothing about MC. I'm very sorry. The Dr. who said "it doesn't mean anything" apparently had no experience with MC in other patients and especially experience with it personally. It is a VERY big deal and even though it might not be "life threatening" it most certainly is "life altering" and that is no small thing.

Please continue to read. There is a lot of good information on this site. Please don't be shy about asking questions either.

Again, Welcome..........
Shirley

MaggieRedwings · Post by **MaggieRedwings** » Wed May 20, 2009 5:23 am

Welcome Kate,

So sorry for the reason you have landed here but I must say you have picked the best community for support, understanding and knowledge.

I am by no means surprised at your GI's reaction since most know little to nothing about the disease and less on how to treat it. You have been down a very hard road but from my experience and it has been a long one to get to a good place, I feel eliminating from diet is a great step to take.

By the way, "she who walks on land" is a wonderful name. Amazingly, my name many, many years ago was "she who walks with nature."

Maggie

shewhowalksonland · Post by **shewhowalksonland** » Wed May 20, 2009 5:23 am

Thanks! Happy to be here!

shewhowalksonland · Post by **shewhowalksonland** » Wed May 20, 2009 6:05 am

Thanks Guys!

I am happy to be here!

Post by **tex** » Wed May 20, 2009 9:50 am

Hi Kate,

Welcome aboard! I'm sorry to hear that your doctors have wasted so much of your time, but that seems to be an experience that many of us here, share. Yes, as you have found, MC can be just as debilitating as the other, (more widely known, and better understood), IBDs. For some reason or other, when they think of IBDs, most GI docs seem to view MC as if it were the proverbial "red-headed stepchild", (and the red-headed part even fits, since, like celiac disease, because of the gluten connection, the disease seems to have roots that go back to Ireland, and the surrounding areas). As Rodney Dangerfield would have said, (if he ever told a joke about MC), "it gets no respect".

Fortunately, you can get your life back, but most of us have found that we have to take control of our own treatment, in order to do that. Most GI docs consider MC to be "just a little diarrhea" - it's a shame that they can't experience the "thrill" of having to deal with the disease themselves, while trying to carry on a normal life.

I hope you can find the solutions you seek, here, and please feel free to ask any questions that come to mind.

Tex (Wayne)

jodibelle352 · Post by **jodibelle352** » Wed May 20, 2009 3:45 pm

KATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You're in the right place Sweety. Everyone hear has been there and done that so we truly understand what is happening and can help you through hard flares.

You have nothing to be embarrassed about. I thought to myself "Poor Girl" to have to deal with this as long as you have had to is so very wrong!!!!!!!!!!!!!!! I myself went several months before dx and that was utter hell for me and how you've handled this for so many years without a GI that seems to not know anything about MC, CC, LD or any IBD's. I would seriously be looking for another GI
:lookwayoutwindow:

Maybe your Family Physician could help you find someone who you can relate to. You never should have been left to fight as long as you have.

:cherubangel:

Love and God Bless:
Jodi

Gloria · Post by **Gloria** » Wed May 20, 2009 6:22 pm

Welcome Kate!!!

You're already one step ahead of the game because you have recognized the need to change your diet and have done so in the past.

I would also suggest that you keep a food/elimination diary so that you can begin to see a relationship between what you've eaten and the problems you have. The diary has been very helpful to me as I try to stabilize my MC.

I'm sure you're reading a great deal - there's a lot of excellent information on this site. Ask away - we don't get "grossed out" over questions and have a wide range of experiences to help you along the way.

Gloria

kat123456 · Post by **kat123456** » Wed May 20, 2009 9:20 pm

I beg to differ that MC is not life threatening. When I ended up in the ER a couple weeks ago, I was extremely dehydrated, tachycardic and had a fever of 100 or so for more than a week prior from the dehydration. I had severe diarrhea for 9+ weeks before that and had lost 9 pounds in the previous 10 days. I think that was pretty life-threatening. If they hadn't caught it and the diarrhea had continued without my visit to the ER, the tachycardia would have caught up with me... you can fill in the rest...

K

starfire wrote:Welcome, Kate!!!

You have had a most unfortunate experience with doctors who knew nothing about MC. I'm very sorry. The Dr. who said "it doesn't mean anything" apparently had no experience with MC in other patients and especially experience with it personally. It is a VERY big deal and even though it might not be "life threatening" it most certainly is "life altering" and that is no small thing.

Please continue to read. There is a lot of good information on this site. Please don't be shy about asking questions either.

Again, Welcome..........
Shirley

Post by **tex** » Wed May 20, 2009 11:31 pm

Yes, it's certainly possible to die from the complications of MC, and I'm sorry that you had to go through such a dangerous experience, but in Shirley's defense, I have to point out that I doubt that you would be able to find a GI doc who would rate MC as a life threatening disease. She was merely repeating part of the "official" medical description of MC. If you do a survey of the literature describing MC, you will see one theme that is repeated over and over. The words may vary, but the general theme is always the same, and it's generally some form of this, for example:

CONCLUSIONS: CC and LC share a similar clinical picture and have a benign course with . . .

Which is taken from this research article:

http://www.ncbi.nlm.nih.gov/pubmed/12591052

Dehydration is a very serious condition, and it can indeed be life threatening. With the secretory diarrhea that MC often causes, dehydration can occur surprisingly fast, and anyone with MC needs to be acutely aware of that risk, at all times. However, the same risk exists with any disease that causes diarrhea and/or vomiting - even simple traveler's diarrhea. The difference is that it can happen sooner, with MC. From a medical standpoint, however, the disease itself is not considered to be life threatening - it is considered to be a "nuisance" disease. That's not my opinion, (and I'm sure it's not Shirley's opinion) - it's the opinion of the medical community. Obviously, it's possible to die from complications of virtually any other disease that is normally considered to be benign, for that matter, if something causes the body chemistry to become dangerously out of balance.

I'm very sorry that your doctor took so long to provide you with a diagnosis. At the very least, he or she should have warned you of the dangers of dehydration. According to the medical community, dehydration is life threatening - MC is not.

That said, no one here would argue that if you did not have MC, you would not have been in that life threatening situation, so we certainly see your point, and we definitely sympathize with you. There are several other things that I disagree with, concerning the medical description of MC, but this post is already too long, so I won't get into that, just now.

Tex

starfire · Post by **starfire** » Thu May 21, 2009 6:16 am

I apologize Kate. It was a poor choice of words. I was in the hospital once in the beginning with dehydration also. I didn't mean to upset you.

Shirley

grannyh · Post by **grannyh** » Thu May 21, 2009 8:33 am

Hyoscyamine landed me in the ER! I tummy puffed up like a basketball and I was in so much pain! Massive D and threw up all the time as well.

Not life threatening.. who is he kidding. One time the family doc threw me in the hospital faster than you can say poop:) I was there for something else but when he took my blood pressure he took my husband out of the room and told him to get me into ER or I would die! That was before I had a good GI doc. The GI doc at the time said it was all in my head and I needed to see a shrink.. he is also the one who put me on Hyoscyamine and when it didn't work decided it was all in my head.

Entocort has given me my life back. I have no idea what the long term effects of entocort may be but then I am old..LOL I do know that my current GI doc says that even on a full dose of 9 mg (3 pills a day) I am only absorbing about 10% of that. I am down to one pill a day.. after three years.

Asacol made me sick as a dog.. almost as bad as Hyoscyamine.

Hope you are able to find some relief soon. This is a great place to come to for hope.. sure helped me when I thought there was none!
grannyh

Pat · Post by **Pat** » Thu May 21, 2009 1:15 pm

Welcome, Kate!

Sorry you had to find us. I too had a bad GI that told me IBS even after colonoscopy. Why he didn't tell me MC like the pathology report said I'll never know. 7 years later ---- I found out MC, that was 2 1/2 years ago. I tried meds thinking they would "fix" me but no. Now I am doing meds and diet and I am better, but not well. I seem to be a multi intolerant person so don't go by me. I hope you are not multi intolerant and can "fix" this with a simple dietary change and maybe some meds if necessary.

Pat