Hello all,
I'm a brand new member of the forum (just discovered it today). You can call me Farren or Faer for short (easier to spell anyways!).
I was diagnosed with Collagenous Colitis back in April this year, and I can't help but be a little relieved. I've had a whole range of gastrologically exciting symptoms since 2000, when I managed to get salmonella from eating in a cafe in Italy. Since then, I've had any test you can imagine (some of them twice), and only this March did they give me a colonoscopy.
They had originally diagnosed me with IBS, and probably avoided a full colonoscopy because of my age. I'm 28; as from what I've read, most sufferers from MC are older than that. But I've always been an old soul, so I suppose this is fitting.
Ever since I have had these problems, I've developed a habit of blaming myself. If my stomach ached, it was because I ate something I shouldn't have. If I had a hemmorhoid, it was because I wasn't getting enough fibre. If I was tired or lethargic, I wasn't drinking enough water or getting enough exercise. It's taken me a long, long time to recognize that the guilt I was attaching to everything was not only not helping, but was slowly building a serious problem of self-doubt. It's still automatic for me to blame myself for my disease, but at least now I try to catch myself.
At the suggestion of a nurse friend of mine, I thought I'd see if there were any 'help groups' out there. Sure enough, I found you guys. I'm hoping that at least here, I can find support that this disease I'm dealing with is not the direct result of my own actions. I'm sick of being sick, and it helps to hear others who have been where I am.
Thanks for reading!
Farren
A New Member's Short Introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Farren,
Welcome to our internet family. Yes, it definitely helps to seek out others with the disease, because no one truly understand the disease unless they have it. There are probably significantly more members here who are older than you, rather than younger, but not necessarily because the disease only affects older people. Doctors can't diagnose the disease without taking biopsies during a colonoscopy or sigmoidoscopy, and since they have traditionally been reluctant to request colonoscopy exams, and/or biopsy samples for younger people, it has been rather difficult for them to find the disease in younger people.
Fortunately that is changing, as they slowly become more aware of the disease, and now that they are beginning to do the proper diagnostic procedures on younger patients, the average age of our new members is much younger than it used to be, just a few years ago. Our youngest member was 2 and a half years of age, when she was diagnosed.
If you don't mind me asking, what treatment program are you following, and are you in remission? We learn from each other here, because we are all different in our symptoms, and our responses to various treatment methods, so each of us has to custom tailor our own personal treatment program, in order to get optimum results.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Yes, it definitely helps to seek out others with the disease, because no one truly understand the disease unless they have it. There are probably significantly more members here who are older than you, rather than younger, but not necessarily because the disease only affects older people. Doctors can't diagnose the disease without taking biopsies during a colonoscopy or sigmoidoscopy, and since they have traditionally been reluctant to request colonoscopy exams, and/or biopsy samples for younger people, it has been rather difficult for them to find the disease in younger people.
Fortunately that is changing, as they slowly become more aware of the disease, and now that they are beginning to do the proper diagnostic procedures on younger patients, the average age of our new members is much younger than it used to be, just a few years ago. Our youngest member was 2 and a half years of age, when she was diagnosed.If you don't mind me asking, what treatment program are you following, and are you in remission? We learn from each other here, because we are all different in our symptoms, and our responses to various treatment methods, so each of us has to custom tailor our own personal treatment program, in order to get optimum results.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
Hi Farren.
Welcome to our forum. Please have a good read through, especially the section for newbies. http://www.perskyfarms.com/phpBB2/viewforum.php?f=12
Do you get diarrhea or constipation as well as the sore gut?
Lyn
Welcome to our forum. Please have a good read through, especially the section for newbies. http://www.perskyfarms.com/phpBB2/viewforum.php?f=12
Do you get diarrhea or constipation as well as the sore gut?
Lyn
Thanks for the welcome, tex!
As for treatment, I'm still in testing, apparently. After my diagnosis in April, I was put on Entocort followed by an 8 week Bismuth run. The steroids helped, but made me wicked moody, so the follow-up treatment was another run of Entocort, dosage lessened. After four weeks, however, the treatment stopped being as effective. In response, my GI has decided to rule out any other players, so I've had a CT Scan and will soon be having another full round of bloodwork. In the meanwhile, I've been told to take Immodium and see if that helps with the 'urgency'.
My response, however, has been to eat less - to the point that I have lost 10 lbs. since the beginning of November. As I'm not a very large person to begin with, it's not good.
I've never heard the term of 'remission' being applied to what I have (not since I discovered the board, anyway!), but I don't think I've been in remission for a long, long while, if ever.
Lyn,
Thanks for the welcome! I've been through the 'newbies' section, and have decided to get crazy and venture into the rest of the forum. I'm a diarrhea sufferer, as well as chronic (near constant) gut pain.
As for treatment, I'm still in testing, apparently. After my diagnosis in April, I was put on Entocort followed by an 8 week Bismuth run. The steroids helped, but made me wicked moody, so the follow-up treatment was another run of Entocort, dosage lessened. After four weeks, however, the treatment stopped being as effective. In response, my GI has decided to rule out any other players, so I've had a CT Scan and will soon be having another full round of bloodwork. In the meanwhile, I've been told to take Immodium and see if that helps with the 'urgency'.
My response, however, has been to eat less - to the point that I have lost 10 lbs. since the beginning of November. As I'm not a very large person to begin with, it's not good.
I've never heard the term of 'remission' being applied to what I have (not since I discovered the board, anyway!), but I don't think I've been in remission for a long, long while, if ever.
Lyn,
Thanks for the welcome! I've been through the 'newbies' section, and have decided to get crazy and venture into the rest of the forum. I'm a diarrhea sufferer, as well as chronic (near constant) gut pain.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Gday from australia Farren
like you when i was first diagnosed the GI specialist told me it was an older persons condition, i was soon put straight by Tex in one of my first posts on this site .....
I am now 12 months post diagnosis and 11 months post chronic symptoms.... MC is a mind and body type thing, there are various direct symptoms and indirect symptoms.
my advice is that there is no right way or wrong way with MC, there is your way...
the key to success is figuring out what works best for you. we all have different triggers, different reactions, and different treatments.
good luck absorbing all the information that has been collated here,
take care
like you when i was first diagnosed the GI specialist told me it was an older persons condition, i was soon put straight by Tex in one of my first posts on this site .....
I am now 12 months post diagnosis and 11 months post chronic symptoms.... MC is a mind and body type thing, there are various direct symptoms and indirect symptoms.
my advice is that there is no right way or wrong way with MC, there is your way...
the key to success is figuring out what works best for you. we all have different triggers, different reactions, and different treatments.
good luck absorbing all the information that has been collated here,
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
WELCOME to our forum , Farren!
I am glad that you found it, thought not glad to hear that you have this awful disease. I am from Canada, too, located in a small town in South Eastern BC, Creston.
If you have been blaming yourself for the way you 've been feeling since 2000, I BET you were relieved to have a diagnoses, even if it was CC! Part of the reason you might have been blaming yourself is because that way it allowed you to feel you had some control over your illness. And you do ( have control), or you can.. that is the good news. I am sure you 've read how many people on here have found that their MC symptoms are caused by ingesting gluten; that something else may have triggered the disease, and caused us to start reacting when we never did before, but the sympoms are directly related to eating gluten and for some, other foods we are intolerant of. So it is possible that you will be able to control the D., once you figure out what those foods are for you, by not ingesting them. I was pretty skeptical of that when I first came on here, but it has been true for me too. Many of us have had a stool testing done by a lab called Enterolab to find out quickly what those foods are for us.
Are you managing to control your symptoms with the immodium and pepto? I survived 13 years after I was diagnosed, just by toughing it out when I could be at home, and using both of those when I had to go out, or to work, but I know it's no fun. They didn't prescribe Entocort back then. I am so glad to hear that they put you on Entocort right away.
I hope you can find some answers here and I wish you well in your journey to getting well. Please ask us any ( anmd I mean any... nothing is too gross) questions you may have. There are many wonderful, knowledgeable and helpful people on here.
Best Regards,
Linda
I am glad that you found it, thought not glad to hear that you have this awful disease. I am from Canada, too, located in a small town in South Eastern BC, Creston.
If you have been blaming yourself for the way you 've been feeling since 2000, I BET you were relieved to have a diagnoses, even if it was CC! Part of the reason you might have been blaming yourself is because that way it allowed you to feel you had some control over your illness. And you do ( have control), or you can.. that is the good news. I am sure you 've read how many people on here have found that their MC symptoms are caused by ingesting gluten; that something else may have triggered the disease, and caused us to start reacting when we never did before, but the sympoms are directly related to eating gluten and for some, other foods we are intolerant of. So it is possible that you will be able to control the D., once you figure out what those foods are for you, by not ingesting them. I was pretty skeptical of that when I first came on here, but it has been true for me too. Many of us have had a stool testing done by a lab called Enterolab to find out quickly what those foods are for us.
Are you managing to control your symptoms with the immodium and pepto? I survived 13 years after I was diagnosed, just by toughing it out when I could be at home, and using both of those when I had to go out, or to work, but I know it's no fun. They didn't prescribe Entocort back then. I am so glad to hear that they put you on Entocort right away.
I hope you can find some answers here and I wish you well in your journey to getting well. Please ask us any ( anmd I mean any... nothing is too gross) questions you may have. There are many wonderful, knowledgeable and helpful people on here.
Best Regards,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Hey, welcome to the thread, I have nothing to add to what has already been said, just thought I would pop on as proof of a younger person; i was diagnosed with MC (LC) in August this year, when I was 22. I am one of the youngest people I know who has this though/
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Welcome, Farren. I'm sorry you have MC, but glad you found this forum. You'll get lots of good information and encouragement here.
I myself have found that eating coconut helps control my diarrhea. Not everyone has this experience, but I thought I'd mention it. I eat a couple of tablespoons of dried flaked coconut every morning.
Eliminating gluten seems to be the key, though. I'd encourage you to do that. It seems hard to give up food that we are used to, but once you get over the emotional hump, it is doable. There are lots of other good things to eat. I started out my gluten-free life (since October) by eating other things, like rice, corn tortillas, etc. rather than trying to find gluten-free breads and pastas.
Anyway, welcome, and Merry Christmas!
I myself have found that eating coconut helps control my diarrhea. Not everyone has this experience, but I thought I'd mention it. I eat a couple of tablespoons of dried flaked coconut every morning.
Eliminating gluten seems to be the key, though. I'd encourage you to do that. It seems hard to give up food that we are used to, but once you get over the emotional hump, it is doable. There are lots of other good things to eat. I started out my gluten-free life (since October) by eating other things, like rice, corn tortillas, etc. rather than trying to find gluten-free breads and pastas.
Anyway, welcome, and Merry Christmas!
Martha
Welcome Farren!
I am 36 and was diagnosed with LC last year. It also started for me with a GI infection while traveling overseas. In my case it was Guatemala, and unfortunately I never got a diagnosis of the bacteria involved. I had mild IBS for 9 years before the onset of major D last year. I declined meds and tried Bismuth myself without much relief. It wasn't until I got food sensitivity testing through Enterolab (.com) and discovered I'm gluten and dairy intolerant that I found relief. Within 10 days on the GF/DF diet, I went from 6-8D/day to 1-2. Simply amazing. It's taken 6 months to feel somewhat close to remission, and eating forbidden foods always sets me back temporarily, but I do have my life back. There is hope if you are willing to work hard and follow a strict diet.
Have you been tested for celiac disease yet? I would pursue that before starting a gluten free diet. In my case I believe the GI infection and/or pregnancies "triggered" my gluten sensitivity gene. Enterolab offers a cheek swab test for your genetic predisposition to gluten intolerance, but your doctor can order a blood test as well. Up to 30% of people with celiac disease also have MC.
I am 36 and was diagnosed with LC last year. It also started for me with a GI infection while traveling overseas. In my case it was Guatemala, and unfortunately I never got a diagnosis of the bacteria involved. I had mild IBS for 9 years before the onset of major D last year. I declined meds and tried Bismuth myself without much relief. It wasn't until I got food sensitivity testing through Enterolab (.com) and discovered I'm gluten and dairy intolerant that I found relief. Within 10 days on the GF/DF diet, I went from 6-8D/day to 1-2. Simply amazing. It's taken 6 months to feel somewhat close to remission, and eating forbidden foods always sets me back temporarily, but I do have my life back. There is hope if you are willing to work hard and follow a strict diet.
Have you been tested for celiac disease yet? I would pursue that before starting a gluten free diet. In my case I believe the GI infection and/or pregnancies "triggered" my gluten sensitivity gene. Enterolab offers a cheek swab test for your genetic predisposition to gluten intolerance, but your doctor can order a blood test as well. Up to 30% of people with celiac disease also have MC.
Welcome Welcome!
I just found this board a few weeks ago. I am 49, but as we looked over my symptoms and misdiagnosis - I probably had this since I was a child - obviously in those days, this was unheard of, or at least not common.
I agree that you should ask to be tested for celiac disease as well as gluten intolerance. Some folks just finding eating GF helps them.
You will find lots of wonderful support here - this is the place to be - it's wonderful to be around folks who truly understand what you are going thru and aren't afraid to discuss "those embarrassing things".
Good luck in your endeavors - you can do this and make the best of what you are dealing with!
You are not alone!
Theresa in ME
I just found this board a few weeks ago. I am 49, but as we looked over my symptoms and misdiagnosis - I probably had this since I was a child - obviously in those days, this was unheard of, or at least not common.
I agree that you should ask to be tested for celiac disease as well as gluten intolerance. Some folks just finding eating GF helps them.
You will find lots of wonderful support here - this is the place to be - it's wonderful to be around folks who truly understand what you are going thru and aren't afraid to discuss "those embarrassing things".
Good luck in your endeavors - you can do this and make the best of what you are dealing with!
You are not alone!
Theresa in ME
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Farren,
I probably do not have much to add to what has already been said but can definitely tell you that this is not an older person's disease. It has no restrictions as to what age, gender or race you are - it still gets you.
Based upon my experience as well as others here, diet seems to be what works for us and for some a diet and med combination.
Keep reading and feel free to ask whatever questions you have. More than likely you will get good advice.
Maggie
I probably do not have much to add to what has already been said but can definitely tell you that this is not an older person's disease. It has no restrictions as to what age, gender or race you are - it still gets you.
Based upon my experience as well as others here, diet seems to be what works for us and for some a diet and med combination.
Keep reading and feel free to ask whatever questions you have. More than likely you will get good advice.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Yikes, hi everyone! I haven't checked since my last reply - apologies!
Thank you all for the support. natythingycolbery, it's good to know that I'm not the only young'un out there. Linda in BC (yay, another canuck!) I must admit that I'd never taken immodium before my GI suggested/prescribed it a month ago. I really don't like taking pills for symptoms, and try the natural way (diet, etc.) first. But it's been so bad lately that I thought it couldn't hurt. Well, it can. It causes me to end up rupturing hemorrhoids and being in more uncomfortable pain that just feeling urgent all the time. But usually, I can work around it. I have to stop sometimes in public places and just sit, or crouch down, and wait for waves of horribleness to pass, but it used to be worse to work through - you know what type of embarrassing incidents I'm referring to, I'm sure.
As for gluten, I've been down that road already actually. At the very beginning of this, I saw a naturopath who made me feel horrible about myself. I still remember how hard it was to try and stick to a gluten-free, sugar-free, dairy-free, taste-free diet - and quite honestly? I'd rather cheat occasionally and feel terrible than be without it all the time. I like good food too much. I'm also too busy most of the time to make anything from scratch (or even assemble things). I do try to avoid gluten when I can, but I've learned that if it's between a sandwich and not eating - I should choose the sandwich. I have a bad habit of skipping meals.
Zizzle, I actually just took a celiac test, but I haven't really heard the results back and may actually have to take it again. Turns out that due to me having my samples taken while getting over a cold, a high white cell count freaked out my GI. So to avoid misinterpretation, more tests. Oh goodie - another half day off of work for medical stuff.
Again, thank you all for the advice and support. I know that I'm probably in the "find an excuse" phase and am perfectly annoying, I'm hoping that I will be able to process everything you say after a while and thank you sincerely for it all.
Thank you all for the support. natythingycolbery, it's good to know that I'm not the only young'un out there. Linda in BC (yay, another canuck!) I must admit that I'd never taken immodium before my GI suggested/prescribed it a month ago. I really don't like taking pills for symptoms, and try the natural way (diet, etc.) first. But it's been so bad lately that I thought it couldn't hurt. Well, it can. It causes me to end up rupturing hemorrhoids and being in more uncomfortable pain that just feeling urgent all the time. But usually, I can work around it. I have to stop sometimes in public places and just sit, or crouch down, and wait for waves of horribleness to pass, but it used to be worse to work through - you know what type of embarrassing incidents I'm referring to, I'm sure.
As for gluten, I've been down that road already actually. At the very beginning of this, I saw a naturopath who made me feel horrible about myself. I still remember how hard it was to try and stick to a gluten-free, sugar-free, dairy-free, taste-free diet - and quite honestly? I'd rather cheat occasionally and feel terrible than be without it all the time. I like good food too much. I'm also too busy most of the time to make anything from scratch (or even assemble things). I do try to avoid gluten when I can, but I've learned that if it's between a sandwich and not eating - I should choose the sandwich. I have a bad habit of skipping meals.
Zizzle, I actually just took a celiac test, but I haven't really heard the results back and may actually have to take it again. Turns out that due to me having my samples taken while getting over a cold, a high white cell count freaked out my GI. So to avoid misinterpretation, more tests. Oh goodie - another half day off of work for medical stuff.
Again, thank you all for the advice and support. I know that I'm probably in the "find an excuse" phase and am perfectly annoying, I'm hoping that I will be able to process everything you say after a while and thank you sincerely for it all.
Hi Farren,
Greetings from Stratford ON! (was Markham ON until a few months ago)
I too think I've have had MC (LC) for many years, but blamed it on the food, nerves, stress, anything but a disease. Gradually my range of foods got smaller and smaller as I cut out things that seemed to give me bellyache, bubbly bum, and the dreaded D. I was known for having a sensitive stomach. A series of severe stresses pushed me into full blown LC, diagnosed after an endoscopy and colonoscopy.
It's been 18 months now, and I honestly don't know what would have done without this family of sufferers. Through them I tried going gf then df, and bingo! Periods of remission. Life! Going out to restaurants (carefully!) and even travel. I still get sooooo tired, depression about things comes and goes, but I try and be positive, such as I am now a size 8/10 from a 12/14, having been less than 100 lbs at my worst times.
Yes it's really hard living with a limited diet, and having to watch every move I make. Cooking ranges from being interesting (in the may you live in interesting times way) to a real chore, but I have learned what I can eat, what causes trouble, and I eat very well really. Like many others here I have my 'flare up' standby meals, easy to prepare and digest, and make ahead items for when I drag my sorry ass around and can't be bothered with anything, let alone cooking.
One of the many great things about this forum is there is no topic you cannot ask about, from pee to poop, and you can pop in just for a hug.
Welcome, you are part of the family.
Greetings from Stratford ON! (was Markham ON until a few months ago)
I too think I've have had MC (LC) for many years, but blamed it on the food, nerves, stress, anything but a disease. Gradually my range of foods got smaller and smaller as I cut out things that seemed to give me bellyache, bubbly bum, and the dreaded D. I was known for having a sensitive stomach. A series of severe stresses pushed me into full blown LC, diagnosed after an endoscopy and colonoscopy.
It's been 18 months now, and I honestly don't know what would have done without this family of sufferers. Through them I tried going gf then df, and bingo! Periods of remission. Life! Going out to restaurants (carefully!) and even travel. I still get sooooo tired, depression about things comes and goes, but I try and be positive, such as I am now a size 8/10 from a 12/14, having been less than 100 lbs at my worst times.
Yes it's really hard living with a limited diet, and having to watch every move I make. Cooking ranges from being interesting (in the may you live in interesting times way) to a real chore, but I have learned what I can eat, what causes trouble, and I eat very well really. Like many others here I have my 'flare up' standby meals, easy to prepare and digest, and make ahead items for when I drag my sorry ass around and can't be bothered with anything, let alone cooking.
One of the many great things about this forum is there is no topic you cannot ask about, from pee to poop, and you can pop in just for a hug.
Welcome, you are part of the family.
Maxine
Hi Farren,
Can't really add to what others have suggested except to encurage you to explore diet triggers. We focus alot on diet here and you will find much valuable info by going through some old threads.
Welcome aboard.
Mary Beth
Can't really add to what others have suggested except to encurage you to explore diet triggers. We focus alot on diet here and you will find much valuable info by going through some old threads.
Welcome aboard.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hi Farren,
You mentioned a bout of food poisoning was your heralding event. So was mine. I am convinced of that. To this day, I can no longer eat rotisserie chicken (that is what did me in).
I love your comment about being told to eat more fiber for your hemorrhoids, etc. If I had a nickel for every time I heard that garbage... At my last GI appointment, I told my doc to never offer fiber again. He laughed and agreed. I have always felt that fiber was aggressive to my system. No one listened.
Anyways, welcome aboard. We are happy to be here to help you get better.
Rich
You mentioned a bout of food poisoning was your heralding event. So was mine. I am convinced of that. To this day, I can no longer eat rotisserie chicken (that is what did me in).
I love your comment about being told to eat more fiber for your hemorrhoids, etc. If I had a nickel for every time I heard that garbage... At my last GI appointment, I told my doc to never offer fiber again. He laughed and agreed. I have always felt that fiber was aggressive to my system. No one listened.
Anyways, welcome aboard. We are happy to be here to help you get better.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men