Just found this site

[seabare]

While searching onine, I am so happy to have found this site. I was truly looking for something other than the cut and dried info. as on the Mayo Clinic's site.

I have been diagnosed and treated for IBS for over 16 years with a variety of drugs with varying effectiveness. Over the Thanksgiving holiday I suddenly got much worse, even though I did not do the Thanksgiving gorge that many do.

I won't go into detail as to my symptoms, as it is apparent you all know them well. Suffice it to say that some days I can't leave the house or the couch and holding a job (if I could get one) is impossible. I used to be a suit, briefcase and heels corporate person and now I can't even work a min. wage job because I can't promise to be there...........

I have had 3 colonoscopies and several flex sigs but of course they have seemed normal.

I have not yet been confirmed with MC, but based on everything I have read and researched so far, I'm 99.99% sure this will be my diagnosis. I am waiting for my new gastro to order yet another colonoscopy (last was in 2003). I can't believe I'm saying I'm really looking forward to the procedure, just so I can finally get some help. My reg. PP just prescribes more pills........

This whole condition has affected not only me, but my whole family, friends and everyone around me. It is so discouraging and depressing to feel that I may never have my health back. I am middle-aged, but feel 90 somedays and sometimes I just sit down and cry. I guess one of the worst parts is living with something those around me cannot understand. They can't get that I'm too sick to take my son trick or treating or feel so ill I can't drive the car to pick up my medications for nausea, et.

I'm hoping with all the little energy I have left that this forum may be the support I need. Thank you all for creating this place that I can talk to others who really know what I'm feeling.

Robin

[JLH]

Robin, we are so happy you found us. This is the best place in the world for information and support. You are no longer alone.

I presume your next colonoscopy will have biopsies taken because that is the only way to diagnose MC.

Please read as much as you can starting with the information for newbies. It's overwhelming, I know, but you will learn how to control your symptoms.

As our guru, Tex, says, you can get your life back.

[tex]

Hi Robin,

Welcome to our internet family. I'm sorry to hear that you've been suffering for so long without even so much as a diagnosis, let alone a respectable treatment. As Joan mentioned, please make sure that your upcoming colonoscopy includes a good representative set of biopsy samples, taken from various parts of the colon, so that the inflammation will be not be overlooked, this time. A pathologist will need to examine the slides made from the biopsy samples, under a microscope, in order to detect the inflammatory markers that define MC.

It's sad that no one understands this disease, unless they have it, but unfortunately that is quite true, as you have discovered. It's also sad that so many patients are misdiagnosed with IBS. Personally, I'm still not convinced that IBS even exists - IBS is a default diagnosis, IOW, if a doctor can't figure out what's wrong, then he or she diagnoses the patient with "IBS". What that doctor is really saying with an IBS diagnosis is, "I don't have the foggiest idea what's wrong with you, so we'll call it IBS".

If you are following a high-fiber diet, as is usually recommended for IBS, the first thing you need to do is to drop the fiber, and minimize it as much as possible, in your diet. Fiber is definitely contraindicated with MC.

Again, welcome aboard, and please feel free to ask any questions that come to mind.

Tex (Wayne)

[ant]

Dear Robin,

to the PP family!. Here you will find support and understanding. Draw strength from the rest of us. You might like to check out www.enterolab.com. which I am sure you have read about on this site.

Wishing you all the very best on your journey back to remission, Ant

[Rosie]

How awful to have been ill with digestive problems for 16 years, getting worse all the time. But I'm so glad you found the Forum!

When I first started with the severe D last year, I didn't even know MC existed. All I had heard about was IBD, so I first started out trying the IBD rememdies.....soluble fiber, peppermint oil, etc, and they just made things worse. A colonoscopy finally provided the diagnosis of LC, and I found this web site. I had been getting so frustrated, but once here I learned that I could get the information I needed to take charge of my illness. I can't emphasize enough the power of getting tested at Enterolab for the common food sensitivities of gluten, dairy, soy, egg and yeast. Even though it was disappointing to find out that I was gluten, dairy and soy intolerant, knowing what I needed to do was very empowering. I eliminated those offending items, and started feeling soooooo much better within a few weeks. Now 7 months along I have my energy back, and can do whatever I want without worry of an accident. And other health issues such as asthma and muscle cramps have improved a lot too. It's amazing how MC ca affect the entire body. I will admit that I miss some of the foods I've had to eliminate, but feeling back to normal makes it so worth it.

It's not an easy journey, and I as well as others have had our setbacks. You have to be a Sherlock Holmes sometimes to figure out all the landmines out there. For example, I recently had some digestive problems and traced it back to a new brand of tea, very yummy, Tazo Vanilla Apricot White Tea. Something in the "natural flavorings" that I react to.......

You are just starting your journey back to health, and with the fatigue that comes with this illness, learning about your illness and reading all the information can be overwhelming. But stick with it, because you want to get your health back.....and you will with the tools available here and the support and inspiration of those who have gone before you and achieved healing.

Rosie

[JoAnn]

Hi Robin, welcome aboard. Just know I felt as hopeless as you did a little over a year ago until I found this board. They put me on the right path to health, healing, and hope. If you follow Tex's advice and all the other wonderful people that contribute here you will be amazed at what can happen. It is a journey and things don't happen overnight, but good changes do happen. Good luck to you as you find your way to health and healing, JoAnn

[starfire]

Welcome to our family, Robin. I hope you will use the site to research the knowledge others have gained by experience, trial and error over the years. There are some very helpful and knowledgable people here. Don't ever be afraid to ask questions.

Shirley

[Polly]

Robin!

You have had such a rough time - no wonder you are wiped out and discouraged. But I am here to tell you, like the others here, that MC, if that is what you have, can be managed sucessfully. And that you WILL get your life (and energy) back.

We all have big ears and strong shoulders here, so feel free to rant , rave, and vent all you want. We are here for you. And nothing is too embarassing or gross to talk about. We are the experts in by necessity!

The MAIN thing is to be sure that your doc does multiple biopsies during the colonscopy, since that is the ONLY way to diagnose MC for sure. Remind the doc even up to the minute they put you under for the procedure! (Squeaky wheel gets the oil, right?).

Hang in there. We'll be anxious to hear the results of your colonscopy.

Love,

Polly

[Bifcus16]

Hi Robin,

Welcome! Sorry you need to join us, but pleased to meet you all the same.

Have you had a chance yet to think about how you would like to deal with things? The colonoscopy and biopsy will still show MC even if you have started dealing with it via diet and/or medication. It takes a while to heal, sadly.

Do hassle your GI to take biopsy sample from as far up as he can go, as well as lower down - the MC tends to lurk in the upper reaches, rather than the exit end where they often take biopsies (when they do them at all).

[seabare]

Thank you, thank you to everyone who wrote! I was in tears and overwhelmed at your response to my first post. Good thing you're all there as my husband doesn't know what to do with me when I cry--which thankfully isn't all that often.

It is so encouraging to feel that there are people out there caring about me although we've never met. Just having someone who understands just how debilitating this condition is, is a comfort I haven't known. All the years of "IBS" and their website(s) still didn't prepare me for your words of comfort.

Just in today's mail I received copies of my gastro medical records 1994-2003. Copies also went to new gastro dr. I had never seen these before. I am now even more frustrated.

The original colonoscopy from 1994 stated there was "substantial" inflammation, "almost hemorrhagic appearance" and this comment: "IMPRESSION: With the appearance of her colon, I would wonder really whether she does not have a picture very similar to another patient of mine who ended up having a lymphocytic type of colitis. This looks more like it is an autoimmune phenomenon."

They had me on Asacol at the outset, but my meds were changed along the way........there is a later note stating that apparently the Asacol stopped working. Then went along with IBS meds and didn't pursue LC. Two years later still notes Donnatal and Levbid--marginal response--those later stopped and only given hyoscyamine and hydrocodone by pcp since 2003.

Anyway, I will now continue to follow all your excellent advice and read all your research on MC and hope this new, younger gastro will go back to initial eval, with new colonoscopy & can put me on the right track.

Thanks again,

Robin

[tex]

Robin,

Thanks for the update. That sounds encouraging.

That initial evaluation sure sounds like LC - they just didn't understand what to do about it, back in those days.

Tex

[wonderwoman]

I too am so happy I found this site just 3 days ago. I agree, they are so encouraging and knowledgeable about this condition. I have learned so much by reading the posts and from their personal replies to my saga and questions. I got a diagnosis Feb 11 of Collagenous Colitis and even though the doctor claims diet does not effect it, I know it does. With a close watch of what I eat, I can see an improvement already. Hang in there. Charlotte

[JLH]

MC=LC and CC (Microscopic Colitis = Lymphocytic Colitis & Collagenous Colitis)


WTG, Charlotte, I'm so happy you are listening to the PP.

[seabare]

Thanks, Tex,

It would seem that perhaps the intricacies of diagnostics weren't well known to practiioners many years ago although it would appear one of my Drs thought that LC might be a possibility.

Thanks for everyone's kind words.

[Gabes-Apg]

hi there Robin,

You have found the right place for removing confusion and doubt about the symptoms, to obtain vast information that will allow you to get management on your body and feel human again!

The process of being a prisioner to your toilet with chronic diarrhea, getting diagnosis, and figuring out the diet/med regime that wil work best for you ,is overwhelming and exhausting, there is no lying about it. It takes time, some days are diamonds and some days are stone. once there is more diamond days than stone ones it gets way way easier

I was diagnosed late Dec 09, thanks to the wealth of info on here, and the wonderful people of this family to answer my questions, i have got reasonable control on the D demon.

It is your body... most doctors will prescribe meds based on the best result protocol documented in journals etc.
if you read back through the forums here, i got the understanding that self management is the key, I kept a food/med/reaction diary and in short time figured out what was working and what didnt.

Good luck....and hope you feel better soon