We have quite a few newbies

[JLH]

I think they need some fun.............

http://www.dailymotion.com/video/x14xho ... g_creation

[MaggieRedwings]

Welcome to all the newbies I may have missed and welcome to the family. Sorry for the reasons you are here but at least you have landed in the best family and most informative one in the cyber world.

Love, Maggie

[katinchatt]

I've not had to opportunity to read most of what's on this site, but HAVE to find the time. Just diagnosed this week with Collagenous Colitis. Very frustrating as I was sent home with the "9 Pepto Pills a day" and no follow up. <<< ??>>>
I'm thankful however that my Dr. was aggressive and did biopsies during the scope. In so many words, trial and error seem to be the prognosis. Needless to say I'm trying to educate myself since my Doc had nothing to say about it what-so-ever.
I've almost gotten used to staying at home, in the bathroom, but something I hadn't noticed until recently is how depressed I've become. Is this normal? When I first went to see him with terrible 20x a day diarrhea he prescribed Lomotil & Librax. Could they cause my depression? I thought Librax had an ever so slight anti-depressant reaction. The Pepto is working "somewhat". I still suffer a lot, almost hourly during the night.
Most likely a combo of EVERYTHING right now as I am fighting hard to get my strength back enough to join in on my life I've missed out on for the past 4 months. I've lost 23 lbs. due to the fact that Ginger Ale and Broth have been my staple foods for so long.
Thanks for being here!
Kat

[JLH]

Kat. I predict that your life is about to change with the help of your new cyber family on this board. We are so glad you found us. The help on this site is incredible. Just wait until you meet Tex. He knows more about MC than the GI docs do.

You'll read stories of Potty People who have gone into remission on diet alone. I went gluten free as soon as I found this site. I did really well for a while but then started having problems again. I tested and found that I had develped a sensitivity to soy. There is some form of soy in almost everything it seems to me.

Believe me, you'll get more help and support here than from your doctors. Fire away with your questions.

[Courtney]

Hi Kat,

Welcome! I'm a new member of this online family, too, and I can guarantee you've come to the right place. There is so much information here that really is just not available anywhere else, because it's from people who have gone/are going through the same thing you are and understand it better than the perhaps slow-to-catch-on medical community.

I have struggled with depression during my issues with MC, too. I am not familiar with the meds you were taking so I don't know if they cause depression, but it might be something to check out with your pharmacist. Of course, staying home and feeling chained to the bathroom is depressing in itself because it requires so many lifestyle changes, and let's face it, is no fun and terribly isolating. Also, if you've lost a significant amount of weight (as I also did, although not as much as you have) chances are that the nutrients your brain needs to function properly are not getting there, so that could also make you feel depressed. Depression and Chronic Illness often do go together, so if you think your depression might be something you need to check up on, I encourage you to do so.

I find it really surprising that your GI did not want to schedule a follow-up. If I were you, I would schedule one anyway, since it often takes awhile to get an appointment and you might have other questions or concerns (although I recommend this site for that ). I might try to find another GI, though, since this one doesn't seem too concerned about your situation.

There is so much information here that will help you as you try to figure out the best approach to treating your MC. Looking forward to seeing you around.

Courtney

[tex]

Hi Kat,

Welcome to our internet family. Your experiences so far have been very typical of what most of us have been through with this disease. Yes, depression is most definitely a part of the disease, (if "D" at all hours of the day and night don't depress you, nothing will). The sad fact is that most GI docs know very little about treating CC. Since CC, LC, and several other forms of this disease all have the same symptoms, and the same treatment, we usually simply refer to all of them as MC, (microscopic colitis).

I had the same reaction as Courtney, regarding the lack of a follow up. ?????? Apparently he is trying to tell you that he has done all that he can, and doesn't know what else to do, so I agree with her - you will probably need to find another GI doc, (at least you will need one if you want to treat your symptoms with meds).

You will soon discover, (if you haven't already), that no one understands MC, unless they actually have it. Because of that, (and the fact that most of the doctors don't have the foggiest idea of how to properly treat it), we created this website to share experiences, so that we could learn what worked, and what didn't work, to allow each of us to develop our own customized treatment program. No single treatment plan works for everyone - we are all different in our symptoms, and in our response to treatment. We have found that MC cannot be cured, but the symptoms can definitely be controlled. There are basically three ways to control your symptoms:

1. certain medications
2. diet
3. a combination of meds and diet

The Pepto-Bismol treatment was developed a few years ago by Dr. Kenneth Fine, (founder of Enterolab - who is a GI doctor who has MC, himself). It will often bring remission, but unless the patient is on a Gluten-Free, (GF), diet, a relapse of symptoms will usually occur, after the treatment is stopped. The treatment is safe for only about eight weeks - after that, there is a risk of a toxic buildup of bismuth in the patient's body. Because of the relapse issue, and the risk of a toxic buildup, Dr. Fine no long recommends the Pepto treatment. Instead he recommends the diet by itself, since it is much safer, (and much more reliable, in the long run). Information in medical circles often travels slowly, so many GI docs are just now beginning to use that treatment. However, since most GI docs refuse to believe that diet can control the symptoms of MC, they fail to mention that part of the treatment to their patients. Consequently, when the treatment is completed, the patient will relapse, the GI will scratch his or her head, and prescribe a more powerful med.

If you want to control your symptoms with meds, at present, Entocort seems to be the most practical choice, since it is successful in bringing remission in about 60 to 70 % of patients, with minimal risk of side effects. After remission is achieved, you would need to continue using either the same med, (at a reduced dosage), or another med, for the rest of your life, to maintain remission. Be aware that most doctors will probably insist that eight weeks of Entocort will "cure" MC, but as you will discover, that is not the case. After the treatment is ended, and the effects of the drug wear off, you will relapse, unless you are on the diet, or you are taking another "maintenance" med.

MC is a miserable, life-altering disease, but as you will discover by reading here, it can definitely be controlled, and you can definitely get your life back, and feel just as good as you ever did, once you fine tune your treatment program.

Again, welcome aboard, and please don't hesitate to ask any questions that come to mind.

Tex

P S It is unlikely that either Lomotil or Librax would cause depression. Lomitil slows down motility, by means of an opiate effect, and Librax is an antispasmotic, often prescribed for IBS, and yes, if anything, it should counter depression, rather than to cause it.

[JJ]

Welcome Kat!

This is a fabulous place for info and support....so glad you found us!

[G'ma Mary]

Hi Kat;

Welcome to our "family". As you will find, we are open to any questions you may have as well as to listening to your frustrations and anything else you wish to share with us. As others have told you, this is definitely the place for information. I have a GI who I refer others to and who I really like a lot, yet this site is where I get info on this disease - not him!

Once again - WELCOME!!!

G'ma Mary

[katinchatt]

Thanks EVERYONE for the warm welcome!
I see that it won't happen over night, however I feel much better already. I have a few other issues that my Doc doesn't seem interested in but I believe may be aggravating the issue. Just prior to my attacks, 5 mo. ago, a nodule was found on my Thyroid w/ultrasound. I have a fairly high platelet count and when at my "D" peak 20+ day, the glands in my groin are so swollen and painful I can barely walk. Perhaps this is all related. . . ?? Perhaps I need new Doc . . .??

The Gluten factor is very new to me, but I'm anxious to seek and destroy what ever it is that's doing it to me. I do know I want to begin with reducing the Librax, as it adds to my already lethargic state of being at the moment.

Thanks again everyone & if anyone is there and can confirm that chocolate is gluten free, I'd be forever grateful,
Kat ~ East Tennessee

[JLH]

There are micro mini chocolate chips by a company that is called Enjoy Life. They are dairy, soy and gluten free but they still seem to cause me a problem.

Have you told your doctor about the swelling in your groin? Lymph nodes?

This seems like a time for Tex......

[Courtney]

Hi Kat,

I don't know about thyroid nodules, but I do that I and many members have thyroid disorders of one form or another. My understanding of that is that autoimmune issues, like MC and thyroid disorders, tend to like to hang out. If you have one, you're more likely to have another one. You will probably want to get your thyroid hormone levels checked, if you haven't already, and definitely keep an eye on it. You mentioned you're feeling lethargic, which could be due to the meds or the D, but it's also a symptom of a thyroid disorder. (Grrr, you are so right about docs not wanting to see that the various parts of our bodies are connected. Most of them only want to look at whatever is their specialty. )

Now for the important stuff : You have to check on chocolate. Some of it is GF, but some of it is not. I have celiac, so I have to be extra careful about gluten. Pure cocoa is GF. Most candy bars (Snickers, etc) may not contain gluten in the ingredients, but the machines they're made on are often dusted with some sort of flour, so they are not safe for celiacs. I'm not sure how closely people who have MC but not celiac follow those sorts of rules. Anyone?

There are plenty of GF chocolates out there, though. I love the Enjoy Life brand chocolate chips. I eat them for dessert Many grocery stores, not just specialty stores, now have GF products, which often include chocolate. Also, one thing I've learned is, if it doesn't say it's GF, you can go to the company website and they often have a list of products that are.

One thing to be aware of, though, is that many chocolates contain soy or soy derivatives, and many people with MC are intolerant to soy, as well. Don't worry, though! There's still plenty of chocolate you can eat, and it's usually high quality stuff

Glad you're beginning to feel better.

Courtney

[Gloria]

Welcome Kat!

I'm so sorry to read about your struggles with MC. I agree with everything that's been written. I haven't had depression with this disease, but I've been discouraged many times.

I also love chocolate and in the course of the past year I've given it up several weeks in an attempt to determine my food intolerances. The biggest problem chocolate presents for me is that almost all of it is made with soy lethicin, and I am intolerant to soy. The Enjoy Life chocolate chips are available at Whole Foods. As mentioned, they are free of the most common intolerances. Like Courtney, I eat them as a snack. I'm going to be melting some and making small molded squares of it so that I can feel like I'm eating a candy bar again. I have some candy molds from Wilton that I can use.

As Tex mentioned, a good starting place to achieve remission is to give up all gluten. I would also recommend that you begin keeping a food diary, also noting the type and times of BMs you have. Hopefully, you'll begin to see a pattern and be able to pinpoint which foods are causing you distress.

Note that I reacted pretty badly to the Pepto Bismol, so I'm not an advocate of it. I treated my MC symptoms with Entocort, which allowed me to live a normal life while determining what foods were problematic. I've recently stopped using Entocort and am in remission through diet alone. I'm convinced that diet is the path to remission, though for many of us, medication must be used until we "figure it out."

We are here to help you. I've been able to achieve remission solely because of the support and information that I received on this site. I'm sure you will find the answers you need here, too.

Gloria

[tex]

Kat,

Courtney is correct, of course, about the high incidence of thyroid problems among people with MC. Based on a poll that we did a few months ago, 60% of members who responded have diagnosed thyroid problems, whereas for the general population, the corresponding number is usually listed as somewhere between 7 and 8%. That means that we are about eight times as likely to have thyroid problems, as someone who does not have MC.

In some cases, nodules on thyroid glands can actually produce thyroid hormone, and when they do, the process does not result in proper feedback to the pituitary gland, which means that the TSH, (Thyroid Stimulating Hormone), level is not a true indication of the body's demand for thyroid hormone, which results in an overproduction of thyroid hormone, (the same as hyperthyroidism). IOW, yes, it certainly can affect other issues that you are having. If you are referring to your GI doc, as Courtney said, the thyroid problem would be "off the radar" for most GI docs.

The high platelet count is probably connected with the inflammation in your intestines caused by the MC, but it could also be due to other issues. I'm not sure which glands you are referring to, but if the swelling and pain is due to cysts, that would not be related to MC. As Joan suggested, it would be a good idea to mention that to your doctor, (not your GI, of course). Are you sure the swelling is in glands, and not your intestines? Bloating, pain, and swollen intestines, are common with MC.

Regarding the question that Courtney raised about whether people with MC are as sensitive to gluten as celiacs, the answer is: "yes, in most cases". I think that there is probably a range of sensitivity, (but that is probably true of celiacs, also). Some of us, seem to be even more sensitive than the average celiac, while others have a slightly higher threshold, (IOW, it takes more than minute amounts to trigger a reaction for some of us). However, the classic blood tests used to diagnose celiac disease, are useless for detecting the type of gluten sensitivity that we have. We always show a negative result to those tests. The only tests that are able to accurately detect gluten sensitivity for people with MC, are stool tests, (which makes sense, since the antibodies are produced in the intestines, not in the blood).

I believe that Gloria is a good example of someone who is more sensitive to gluten than the average celiac, and she's also sensitive to many other foods, (many more than most of us), so for her to be able to achieve remission, and maintain it without meds, is pretty sound proof that the diet works, (provided that it is fine tuned to meet the needs of each individual).

Tex

[JLH]

Check out www.enterolab.com and Dr. Fine's other sites. The EL tests are great if you can afford them. However, you can figure out your intolerences on your own.

[G'ma Mary]

Courtney

I wanted to respond to your question about chocolate.

I have found that I am one of the "lucky" ones - gluten seems to be the only intolerance I have. When I first went GF, I was SO strict with it, both at home and away from home. After 3 months of this, I found myself to be symptom free. I remained extremely strict, but, as I heal, I find that I no longer have to worry as much as previously.

Early on, I would eat only those chocolates that were proven to be gluten free and processed on "safe" equipment. Today, I remain extremely strict at home (I live alone, so it is easy for me to maintain a strictly GF kitchen!) When I eat out, I find that I tell servers how strict I must be, but I no longer (usually) have symptoms from eating away from home. I know I've been exposed to contaminants away from home, but I almost never have a reaction any longer.

I also know that I now eat main-stream candy bars that have no gluten in their ingredient list. I have never associated a reaction with having eaten these, but I would not want to promise they are safe for everyone reading this.

I do buy "safe" chocolate chips and do a lot of my own baking - I happen to be one of those people who enjoys cooking.

If you search on celiac.com, you will find safe and unsafe lists. I just looked for you because I thought I'd seen a candy list there in the past, but I didn't find it today. In any event, I highly recommend the safe/unsafe lists they have there. I printed those and carried them in a notebook every time I did grocery shopping when I first began this diet. Those lists were lifesavers! I still carry the lists in my car for reference at any time I have a question.

Hope some of this is helpful.
G'ma Mary