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Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
hello
My name is Carol. I have collagenous colitis. Only recently diagnosed, It seems like I have been sick forever, nobody could tell me what was wrong, some even made me feel like it was all in my head, sooo very frustrating. It seems there is not much information on cc, so very glad to find this site,
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi carol and welcome to the group.
Your brief history sounds quite familiar as many of us have gone through the same thing. For me I had 10+ years of not feeling well with aches, pains, fatigue and occasional D
In April 2009 I was finally diagnosed with CC and Crohns. Once I had adjusted my diet to eliminate gluten, soy and severly limit dairy I felt quote a bit better. With the Crohns I am also taking meds to keep that in check
You certainly have found the right group and now that you know what your dealing with, making adjustments to your diet will allow you to feel better and take back your life.
Joe
Your brief history sounds quite familiar as many of us have gone through the same thing. For me I had 10+ years of not feeling well with aches, pains, fatigue and occasional D
In April 2009 I was finally diagnosed with CC and Crohns. Once I had adjusted my diet to eliminate gluten, soy and severly limit dairy I felt quote a bit better. With the Crohns I am also taking meds to keep that in check
You certainly have found the right group and now that you know what your dealing with, making adjustments to your diet will allow you to feel better and take back your life.
Joe
Joe
history
I had been living off of vitamins and gatorade, trying to elimatinate various types of food from my diet for weeks and months with no relief, I tried various over the counter meds to control the frequent trips to the bathroom. I have isolated myself in many ways, only leaving the house when absolutely necessary, which is difficult as I have a full time job and 3 children with various activities, I would avoid eating if I had to go anywhere. Even when going out with friends, the first thing I would do was scope the joint for a bathroom, pretty sad. My body finally gave and I wasnt absorbing any nutrients, severly dehydrated, frequent headaches and agonizing pain. I felt like a horrible parent and have become unreliable at work, this definately leaves me feeling depressed, not to mention the weightloss, paleness, and dark circles under my eyes, I even had somebody tell me I looked like a crackhead...I just cried, as I cannot even tolerate the mildest forms of most meds. I get asked If I am pregnant at times due to the bloating, that the dr couldnt explain. They tried me on Apriso and Lialda, and I take Entocort now. They tried to wean me off it and the results have been debilitating. I started back on it just a couple days ago, and am still readjusting, there has got to be a better way, definately more cost effective as my co-pays for entocort are 300 a month, looking for discounts or alternatives. Wow, thats all pretty criptic...sorry for carrying on....
Carol - I know exactly how you feel! I was diagnosed about 2 months ago. I have been gluten free for a month and have, just within the last couple of weeks, gone dairy, egg, and soy free. I had the Enterolab testing done, which showed I have the gene for celiac, really high antibodies to gluten, and also was producing antibodies to dairy, soy and eggs. I have just recently started back on Entocort.
This site has the most wonderful caring people!! If you have any questions, there is always someone (usually many) who have answers.
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
As our guru, Tex, has said, "You can get your life back." Read as much as you can on this site, starting with the info for newbies. Also, check out www.enterolab.com Most, but not all of us, have gluten intolerance, some have dairy and soy intolerance.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
thanks
Joan
Thanks, I have done quite a bit of reading today and have been impressed and grateful to find so much information all in one place. More info than I had been able to find in months. I have been taking notes and checking on some sites and just finding Entocort at a reduced price is the greatest at this point. All the diet stuff I am going to have fun with. I read alot of what you cant eat, so I went to the recipes to try to find out what I actually can still eat. I will look into entero lab for sure, as I have tried to isolate certain foods and was unsucessful.
Thanks, I have done quite a bit of reading today and have been impressed and grateful to find so much information all in one place. More info than I had been able to find in months. I have been taking notes and checking on some sites and just finding Entocort at a reduced price is the greatest at this point. All the diet stuff I am going to have fun with. I read alot of what you cant eat, so I went to the recipes to try to find out what I actually can still eat. I will look into entero lab for sure, as I have tried to isolate certain foods and was unsucessful.
If you want to change the world, you must start at home.
WELCOME CAROL!! 
You have had a rough road. Hopefully you'll be able to order Entocort overseas and get back on track with your treatment. Most of us find that we also have to modify our diet in addition to taking medication. This is a frustrating condition, but you can get your life back.
Keep reading - as Skunk Ape noted, there is a lot of information and experience on the board. We are here to help you, so ask any questions you may have.
Gloria
You have had a rough road. Hopefully you'll be able to order Entocort overseas and get back on track with your treatment. Most of us find that we also have to modify our diet in addition to taking medication. This is a frustrating condition, but you can get your life back.
Keep reading - as Skunk Ape noted, there is a lot of information and experience on the board. We are here to help you, so ask any questions you may have.
Gloria
You never know what you can do until you have to do it.
Hi Carol,
Welcome to our internet family. We consider ourselves a family, because no one seems to truly understand this disease, and how debilitating it can be, unless they actually have it.
I hope that you can find the information here, that you need to get your health back on track.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. We consider ourselves a family, because no one seems to truly understand this disease, and how debilitating it can be, unless they actually have it.
I hope that you can find the information here, that you need to get your health back on track.
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.
Welcome Carol (and skunk ape)!
My LC developed 2 years after the birth of my second child (2 years ago). I totally understand the pregnant look - I looked 4-6 months pregnant at all times and had given up hope of wearing fitted clothing ever again (despite being thin everywhere else). Never wanting to leave the house was tough. I got my life back after getting my Enterolab results and realizing I was gluten and dairy intolerant. I also have the HLA-DQ2 celiac gene which is shared by 39% of the general population (especially those of Northern European, Italian and Spanish roots). All foods seemed to make me sick - fatty, spicy, alcohol, lactose, too much fiber, etc. Little did I know it was the least harmful seeming ingredient was causing all my trouble - the gluten in wheat, barley and rye. Within a week of eliminating gluten, dairy and most soy, the bloating disappeared, the D frequency reduced by 80%, and my energy level noticeably improved. I wasn't "cured" but I got my life back. Now my symptoms are manageable and only get worse when I accidentally eat forbidden ingredients (usually from restaurant food). I only use Pepto Bismol occasionally when I have mini-flareups.
I'm sure the thought of such a limited diet is overwhelming, but you get used to it. I admit I went throught he stages of grief with it, but I would never go back. I feel so much better. Even old aches and pains are gone. Going GF has also never been easier. New foods are popping up every day and restaurants are doing a much better job of training their chefs and servers about food allergy and intolerance. As a working mother, I don't have much time to experiment in the kitchen like many here do. I often rely on bananas, plain potato chips and an assortment of fruit and nut bars to get me through the day (and dark chocolate) when I'm on the run. I drink coconut milk (which my whole family has converted to), eat sorbet, and make simple, tasty meals consisting of a meat, vegetables, potatoes or rice. Easy most of the time, and no one's complaining (OK, hubby complains when I don't buy bread and make rice pasta - he's Italian and really notices the difference). The kids don't care.
I recently convinced my MIL to go GF, despite having negative blood results for celiac. She had classic symtoms, just like me. I honestly thought she couldn't do it, that she would slip up all the time, but she's 2 weeks in and feeling great. She also comments that she's meeting tons of people that are also GF, and she had no idea. She seems motivated and commited to the diet now.
Incidentally, this disease also makes me worry for my kids. I know they inherited gluten-sensitivity genes from me, and until now, they were overdosing on gluten containing foods like all American kids do. We now have GF dinners and I try to limit regular pasta, cakes, cookies, pretzels, pizza, etc to reasonable amounts. They always ask if I can eat cartain things, asking if they contain gluten. They are only 6 and 4, and it's so cute to see their concern and compassion. When they go to birthday parties, they get excited for cake time but they always leave their cake or cupcakes uneaten. They just lick the frosting. I wonder if their bodies already know it doesn't agree with them... So I hope the healthier diet prevents or delays the triggering of their gluten-sensitive genes, and the other related diseases that come along with them, like diabetes. We'll see.
Glad to have you both aboard.
My LC developed 2 years after the birth of my second child (2 years ago). I totally understand the pregnant look - I looked 4-6 months pregnant at all times and had given up hope of wearing fitted clothing ever again (despite being thin everywhere else). Never wanting to leave the house was tough. I got my life back after getting my Enterolab results and realizing I was gluten and dairy intolerant. I also have the HLA-DQ2 celiac gene which is shared by 39% of the general population (especially those of Northern European, Italian and Spanish roots). All foods seemed to make me sick - fatty, spicy, alcohol, lactose, too much fiber, etc. Little did I know it was the least harmful seeming ingredient was causing all my trouble - the gluten in wheat, barley and rye. Within a week of eliminating gluten, dairy and most soy, the bloating disappeared, the D frequency reduced by 80%, and my energy level noticeably improved. I wasn't "cured" but I got my life back. Now my symptoms are manageable and only get worse when I accidentally eat forbidden ingredients (usually from restaurant food). I only use Pepto Bismol occasionally when I have mini-flareups.
I'm sure the thought of such a limited diet is overwhelming, but you get used to it. I admit I went throught he stages of grief with it, but I would never go back. I feel so much better. Even old aches and pains are gone. Going GF has also never been easier. New foods are popping up every day and restaurants are doing a much better job of training their chefs and servers about food allergy and intolerance. As a working mother, I don't have much time to experiment in the kitchen like many here do. I often rely on bananas, plain potato chips and an assortment of fruit and nut bars to get me through the day (and dark chocolate) when I'm on the run. I drink coconut milk (which my whole family has converted to), eat sorbet, and make simple, tasty meals consisting of a meat, vegetables, potatoes or rice. Easy most of the time, and no one's complaining (OK, hubby complains when I don't buy bread and make rice pasta - he's Italian and really notices the difference). The kids don't care.
I recently convinced my MIL to go GF, despite having negative blood results for celiac. She had classic symtoms, just like me. I honestly thought she couldn't do it, that she would slip up all the time, but she's 2 weeks in and feeling great. She also comments that she's meeting tons of people that are also GF, and she had no idea. She seems motivated and commited to the diet now.
Incidentally, this disease also makes me worry for my kids. I know they inherited gluten-sensitivity genes from me, and until now, they were overdosing on gluten containing foods like all American kids do. We now have GF dinners and I try to limit regular pasta, cakes, cookies, pretzels, pizza, etc to reasonable amounts. They always ask if I can eat cartain things, asking if they contain gluten. They are only 6 and 4, and it's so cute to see their concern and compassion. When they go to birthday parties, they get excited for cake time but they always leave their cake or cupcakes uneaten. They just lick the frosting. I wonder if their bodies already know it doesn't agree with them... So I hope the healthier diet prevents or delays the triggering of their gluten-sensitive genes, and the other related diseases that come along with them, like diabetes. We'll see.
Glad to have you both aboard.
replies
Skunk Ape, Nice to meet you, wish it could be better circumstances, but anyhow, yes, lots of info, the good thing is you can break it down into small chunks and come back at anytime, and its all there waiting for you. Its difficult for most to be open with strangers, but when you share a common issue, its definately better to know you are not alone and if you need support you can find some. I have had some really hard times with this illness and have been hard pressed to find someone who can understand. "Invisible" illnesses are the worst, when it comes to others understanding why you are not feeling well.
Gloria, yes, when I called to refill my prescription and they told me the price went up, I literally cried. After trying other meds and having the symptoms so bad, I was afraid if I couldnt get the meds I was going to end up in the hospital. I get severely dehydrated, and my electrolyles go outta wack. I cannot believe the huge difference in prices and will be putting in my order. I need the money to feed my kids, need to save where ever possible, It is seriously a horrible feeling to have to choose between the light bill and meds.
Tex, Thank you for allowing me to join your family, I have enjoyed reading your post, and I appreciate your views. I am feeling much better emotionally today, just finding so many resources all in one place. I havent been coping really well, the last few days and I do feel part of the burden has been lifted. So, On to brighter days!!
Gloria, yes, when I called to refill my prescription and they told me the price went up, I literally cried. After trying other meds and having the symptoms so bad, I was afraid if I couldnt get the meds I was going to end up in the hospital. I get severely dehydrated, and my electrolyles go outta wack. I cannot believe the huge difference in prices and will be putting in my order. I need the money to feed my kids, need to save where ever possible, It is seriously a horrible feeling to have to choose between the light bill and meds.
Tex, Thank you for allowing me to join your family, I have enjoyed reading your post, and I appreciate your views. I am feeling much better emotionally today, just finding so many resources all in one place. I havent been coping really well, the last few days and I do feel part of the burden has been lifted. So, On to brighter days!!
If you want to change the world, you must start at home.
Zizzle
Genetics, so bittersweet, My 14 yr old son has been diagnosed with high blood pressure and high cholesterol, which my father has and his father has. The doctors said my son would have gotten it anyhow, but by controling diet and exercise now, he may have less issues later in life. He also had adult migraines starting at 8 years old. He plays sports, football, wrestling and golf. It was rough to find out my most active kid, would have this, but for the most part he has traded in his doritos for grapes and stays away from the soda. And he does get alot of nutritional advice from his coaches. My daughter,17, inherited scoliosis, had an operation at 11, she still enjoys many activities, band instead of sports and drama classes, and my youngest son has a discoid meniscus,(deformity in the knee)he had surgery in feb. He is doing wonderful now, scaring me on the trampoline, and rollerblades.
So you just dont know what you are going to get, making the best of it and informing yourself and them is the best any of us can do. I have always tried to feed them well balanced meals and limits on all "junk food", and started them in sports young. I have learned alot through these experiences, and grown so much with the children, and I know "some of our best laid plans, slip right thru our hands". and sometimes the alternative to our plans, is better than anything we ever could have dreamed.
I do know that the ways we cope with stress and adjustment, are great teachers to our children, and my kids are the greatest blessing to me, and they believe anything is possible and they offer hugs when I am having a bad day, I only feel bad that at the moment I cannot be stronger for them. I tried to hide my condition, I was embarassed, but they knew, and they told me I wasnt much fun anymore, and they missed all the things we used to do, coming in after work some days I sit and pretty much pass out in a chair, exhausted and starving. They like to cook, and often surprise me by having dinner ready when I come in from work, otherwise I would prob snack on the first thing I could cram in my mouth,,,,
Anyways, enough of my rambling, no matter what our kids go thru, as parents, we rise to the occasion, kiss the boo-boo's, offer them encouragement, and if we believe in all we tell them, we learn a new lesson each time we help them overcome.
Carol
So you just dont know what you are going to get, making the best of it and informing yourself and them is the best any of us can do. I have always tried to feed them well balanced meals and limits on all "junk food", and started them in sports young. I have learned alot through these experiences, and grown so much with the children, and I know "some of our best laid plans, slip right thru our hands". and sometimes the alternative to our plans, is better than anything we ever could have dreamed.
I do know that the ways we cope with stress and adjustment, are great teachers to our children, and my kids are the greatest blessing to me, and they believe anything is possible and they offer hugs when I am having a bad day, I only feel bad that at the moment I cannot be stronger for them. I tried to hide my condition, I was embarassed, but they knew, and they told me I wasnt much fun anymore, and they missed all the things we used to do, coming in after work some days I sit and pretty much pass out in a chair, exhausted and starving. They like to cook, and often surprise me by having dinner ready when I come in from work, otherwise I would prob snack on the first thing I could cram in my mouth,,,,
Anyways, enough of my rambling, no matter what our kids go thru, as parents, we rise to the occasion, kiss the boo-boo's, offer them encouragement, and if we believe in all we tell them, we learn a new lesson each time we help them overcome.
Carol
If you want to change the world, you must start at home.
Carol,
Welcome! I'm sorry you had to feel so awful for so long before you found us. Most of us know that fatigue, dehydration, embarrassment, and fear about what could possibly be going on, not to mention the emotional distress you describe.
Your kids sound just wonderful. How great that you have allies in the kitchen already (and you can put them to good use as you experiment with diet changes!).
Your signature quote is very inspiring along those lines. You will find your way, and I truly hope you're feeling better soon,
Sara
Welcome! I'm sorry you had to feel so awful for so long before you found us. Most of us know that fatigue, dehydration, embarrassment, and fear about what could possibly be going on, not to mention the emotional distress you describe.
Your kids sound just wonderful. How great that you have allies in the kitchen already (and you can put them to good use as you experiment with diet changes!).
Your signature quote is very inspiring along those lines. You will find your way, and I truly hope you're feeling better soon,
Sara
Carol,
What a thoughtful, inspiring post! You sound like you have both feet on the ground and know how to place your priorities. If that's the case, you'll likely be successful in managing your MC. It takes dedication, determination, and sacrifice to achieve remission. You seem to have instilled that in your children; no doubt you have those qualties also.
Gloria
What a thoughtful, inspiring post! You sound like you have both feet on the ground and know how to place your priorities. If that's the case, you'll likely be successful in managing your MC. It takes dedication, determination, and sacrifice to achieve remission. You seem to have instilled that in your children; no doubt you have those qualties also.
Gloria
You never know what you can do until you have to do it.