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Hi everyone!! My name is Jessica and have been finally been able to put a name to what I am feeling about one week ago. I had a sigmoidoscopy done in November 2011 because I could not get rid of the nausea and watery D that I had for about 2 months. On top of the procedure I had stool samples taken and blood. I have always had stomach problems and was tired of everyone shrugging it off saying "it is your nerves or anxiety", "it is just stress". I needed to find the answer so I could get help! After all those tests and procedures, I got a phone call saying that everything was ok. You can only then imagine the discouraging feeling I had, all I kept thinking was, "Well, maybe everyone is right, maybe my anxiety or stress is making me this sick". I started drinking some shakes that were high in protein and had probiotics and got better. I got off the shakes (because I hated the taste) and was doing fine for some time. However, in November of 2012, it came back. I thought it was stress related since I was getting married in December. But no, it didn't go away! On my honeymoon it was just a nightmare, I did not want to leave the hotel most of the time. Just horrible! It was February and still felt sick, I called my GI back and made an appointment. I was not letting him brush me off this time, I was determined to make him understand. When I arrive, I was weighed and noticed I had lost 15 pounds since December, I was astonished and it just re-affirmed that everything was NOT fine. I go in to see the dr and first thing he says is, "I am so glad to see you, I don't know why you have no come back especially since a nurse informed you that your biopsy showed abnormalities and I needed to see you. Here is a pen and paper and I want you and your husband to become experts in this rare condition that you have called, lymphocytic colitis". I was so relieved but afraid when I heard this! A nurse never called me and let me know of this information, the doctor read the notes and realized that I was right and the nurse did not contact me.
He went into great description about this disease and let me know how it is not curable but treatable. I am currently taking Immodium and align and it seems to be helping me for right now. I still am getting some nausea and stomach pains though. While doing the research I saw that it is more common in women that are of the ages of 45 and up. I am 27 years old, and now have answers to all my stomach problems, lymphocytic colitis.
I was also relieved to find this forum. I am looking forward to reading and speaking with all of you on something that no one really understands.
Welcome to the board. First of all, I'm appalled that your doctor would not even bother to go to the trouble to look you up, after he found that you had LC, and you didn't schedule a followup appointment. How can GI specialists be that inconsiderate? I use the plural form, because failure to be concerned about the welfare of patients who have this disease seems to be a common problem in that specialty, judging by the posts we see from new members here.
Secondly, LC (or CC, or MC) is not a rare disease — it's just rare in the minds of GI specialists who have misunderstood it for decades. It's actually a very common disease, much more common than celiac disease, Crohn's disease, or ulcerative colitis. The disease can develop at any age, and we have members of all ages — our youngest was two and a half years old when she was diagnosed.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Welcome Jessica ! So glad you found this forum because we all have been where you have and many of us have gotten our lives back because of the great information here. Imodium will help you feel better, but it won't help you heal in the long run.
If you read as much as you can on here, you will quickly see that diet plays a major role in healing your intestines and feeling better. There are foods that CAUSE inflammation ( the four main ones are gluten, dairy, soy, and eggs) and then there are those that "irritate" or "aggravate" an already inflamed gut ( raw fruits and veggies, citrus, tomato...). If you have the resources, there is a lab you can check out that you can get a stool sample tested to and find out for sure what you are reacting to. It's called Enterolab. If not, an elimination diet will work also. For now, it might be a good idea to at least take out gluten and all RAW fruits and veggies.
Tex has written a book that is a great source of information. It's in the upper right hand corner of this page. Just click on it and you will be sent to Amazon.
Jessica, I'm so glad you found us. I was just recently diagnosed too. I understand your feeling of relief to finally have an answer. I,too,knew something was very wrong during my last flare. I also lost 15 pounds, which is unusual for me. Congratulations on your wedding. Maybe you and your hubby can take a second honeymoon sometime?
Leni
Diagnosed with lymphocytic colitis and IgA deficiency on 1/21/13.
Welcome Jessica! I am so sorry that you are part of us, just because it means that you have the disease, but I am glad that you found this site because it is so helpful to know that you are not alone. I was diagnosed in December after 7 1/2 months of chronic diarrhea, pain, and cramping. I am sure that I was well on my way to having CC when I was your age but spent years having flares and being told it was IBS. This time around, it was so unbearable that I sought a new gastroenterologist.
I don't have any advice for you except that you will find that there are many people here who have had all kinds of experience with this disease and can help you a lot. They also give a lot more hope for having a normal life--more than a lot of doctors will!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Hi Jessica,
Welcome to the group. I'm glad you are here as others have said. I have the 'runs' for over 2 years before I was diagnosed. It's a horrible thing. I'm glad that you finally have your diagnosis.
As Leah said, Tex's book is very good. I have read it and have highlighted throughout the book the important things I wanted to go back and review later again. Also wrote my own notes in the book.
Immodium only really stayed off the back stuff for a few hours but it never did any more. Pepto Bismo the same thing. I tried probiotics but didn't seem to do anything.
Many people here have found out that they are sensitive to many different foods. I don't know yet if I am or not. I HAVE ordered the stool lab test that one of the other members above talked about and am waiting for the kit to come so I can do it. Meanwhile I'm on a cortosteroid (?) drug called Budesonide which took affect the very day I started taking it. Some people don't have quite the quick reaction I did as it does vary per person. It's not a drug that we can stay on forever. It appears from what you said, that your treatment now is helping which is good.
I found that it helped to look through the forum and get some good information, ask some questions, then read Tex's book. You'll find everyone here ready to be of help.
Even though I don't know really yet what foods could be affecting me, I am trying to eat a blander diet, stay away from carbonated drinks, artificial sweeteners, "hard" veggies and fruits and things like that. I eat the canned veggies which seem to be easier on the digestion.
Again, welcome, happy reading and ask all the questions you can!
I'm new here too. Glad you found this site. There are so many knowledgeable people here who are very generous with their help.
I am feeling so much better than a month ago, no prescriptions, but take some pepto and immodium occasionally. It took a couple of weeks after getting off gluten, dairy and soy before I noticed a difference. I am pretty much regular now, waiting for my Enterolab tests to come back. Am very careful about what I eat. Homemade chicken soup is always on hand, as well as softly cooked vegetables. I am able to introduce a new food occasionally. Some work and others not so much. I've learned to read labels very carefully!
Tex's book is a great reference.
I know you will find this site to be a big help with any questions. Welcome!
You will learn a lot from this forum! I joined in August wondering why I was still having D after giving up gluten and dairy. That's when I learned about the irritants....no bean, no nuts, no raw veggies, fruits, etc. Low fiber! I gave those up and got on Pepto and now med free for over a month. Pepto helped with the little nausea I had. It's my miracle drug...but it doesn't work for everyone. Most have gone on Entocort and you can stay on that one a lot longer than the Pepto.
Congrats on your wedding but so sorry to hear you were flaring on your honeymoon. I had tummy issues shortly after I got married but headaches were my main issue. My neurologist at the time told me I had some kind of adjustment disorder or GAD and put me on Elavil. So stress plays a big role in this disease unfortunately. The less stress we have the better.
Good luck on your diet changes! It's all about the diet. I took Pepto because I lost 15 lbs as well and totally freaked as I was skinny to begin with. Now the diet seems to have kicked in and I no longer need the meds. My doctor told me Pepto was more of a healing drug. I don't know whether or not to believe that but it seems to have worked for me and I definitely don't feel it has delayed any healing.
Keep us updated!
BTW....sounds like some of our Newbies are seeing improvement....this is good to hear!!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Welcome Jessica,
First of all, I am appalled by the malpractice(?) of your GI doctor and his practice!! Once you are in a doctor's care, you are their responsibility!!! Imagine if it was cancerous changes in your biopsy that they failed to follow up on?? If you are not in the mood to report him (if you think he's otherwise good for something), you should at least use his guilt and attention to get the additional tests you may need. I also have LC, diagnosed at age 35. One regret I have is not being fully tested for celiac disease before I started the GF diet. Granted, most poeple with MC don't develop full-blown celiac, so it rarely shows up on bloodwork, but you should get it anyway, along with celiac gene testing. I have the HLADQ2 celiac gene, and have been told to assume I have celiac disease and eat accordingly. I've also learned that HLADQ2 is the primary gene that presisposes to other autoimmune diseases, and whamo, I have one now, and I'm trying to do everything in my power to prevent any new ones while treating the one I have.
Another test you might ask your doctor for is a breath test for SIBO (Small intestine bacterial overgrowth), especially since you have some upper GI symptoms (nausea, etc).
Anyway, I don't mean to scare you, just want to suggest you get as many questions answered as you can now. Eventually diet will be your primary treatment, and hopefully you won't need to see your GI anymore.
Zizzle wrote:First of all, I am appalled by the malpractice(?) of your GI doctor and his practice!!
That's the exact same word that I used in my first post in this thread, and then I decided that some people might judge it as an unnecessarily harsh term, so I edited it back out. I'm guessing that he wouldn't have had such a cavalier attitude if the diagnosis had been Crohn's disease, UC, or cancer. I believe the basic problem is summed up by my contention that physicians (and particularly gastroenterologists) simply don't give MC the respect it deserves.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Zizzle wrote:First of all, I am appalled by the malpractice(?) of your GI doctor and his practice!!
That's the exact same word that I used in my first post in this thread, and then I decided that some people might judge it as an unnecessarily harsh term, so I edited it back out. I'm guessing that he wouldn't have had such a cavalier attitude if the diagnosis had been Crohn's disease, UC, or cancer. I believe the basic problem is summed up by my contention that physicians (and particularly gastroenterologists) simply don't give MC the respect it deserves.
Tex
Maybe if they went through what we do, they would learn fast huh?
For some reason, gastroenterologists seem to be immune to MC. The only one I'm aware of who will admit to having the disease is Dr. Fine, and he immediately began to research it and then he developed the EnteroLab tests. All the other GI specialists who have MC probably consider it to be a rare disease, so they have never even bothered to get biopsied. They probably believe that they have "IBS".
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
tex wrote:For some reason, gastroenterologists seem to be immune to MC. The only one I'm aware of who will admit to having the disease is Dr. Fine, and he immediately began to research it and then he developed the EnteroLab tests. All the other GI specialists who have MC probably consider it to be a rare disease, so they have never even bothered to get biopsied. They probably believe that they have "IBS".
Tex
It just appears the 'care' isn't there. When my GI called and asked how I was doing on the Budesonide and I said it was working great, he immediately started talking about cutting me back and didn't miss a beat...didn't ask if I had any side affects, how the stool was formed, if I was cramping, ...it was just like a canned response to get me off as quickly as he could but mentioned "of course there are no guarantees that this won't happen again".
OH well. I tried to tell him.....won't be going back.
It was February and still felt sick, I called my GI back and made an appointment. I was not letting him brush me off this time, I was determined to make him understand. When I arrive, I was weighed and noticed I had lost 15 pounds since December, I was astonished and it just re-affirmed that everything was NOT fine. I go in to see the dr and first thing he says is, "I am so glad to see you, I don't know why you have no come back especially since a nurse informed you that your biopsy showed abnormalities and I needed to see you. Here is a pen and paper and I want you and your husband to become experts in this rare condition that you have called, lymphocytic colitis". I was so relieved but afraid when I heard this! A nurse never called me and let me know of this information, the doctor read the notes and realized that I was right and the nurse did not contact me. 
If you are not in the mood to report him (if you think he's otherwise good for something), you should at least use his guilt and attention to get the additional tests you may need. I also have LC, diagnosed at age 35. One regret I have is not being fully tested for celiac disease before I started the GF diet. Granted, most poeple with MC don't develop full-blown celiac, so it rarely shows up on bloodwork, but you should get it anyway, along with celiac gene testing. I have the HLADQ2 celiac gene, and have been told to assume I have celiac disease and eat accordingly. I've also learned that HLADQ2 is the primary gene that presisposes to other autoimmune diseases, and whamo, I have one now, and I'm trying to do everything in my power to prevent any new ones while treating the one I have.
That's the exact same word that I used in my first post in this thread, and then I decided that some people might judge it as an unnecessarily harsh term, so I edited it back out. I'm guessing that he wouldn't have had such a cavalier attitude if the diagnosis had been Crohn's disease, UC, or cancer. I believe the basic problem is summed up by my contention that physicians (and particularly gastroenterologists) simply don't give MC the respect it deserves.
