Hello Everyone!
I would like to introduce myself and hopefully get to know you all better. My name is Jill & I was diagnosed with CC last week, and my head is still spinning. I could really use some guidance from folks who are in the same boat as I with this disease. I will try to keep this as short & sweet as possible!
I was referred to my gastro last month for a bout of nasty diarrhea for weeks that simply wouldn’t go away. I had an endoscopy and colonoscopy and the biopsies revealed the CC. I have been prescribed Entecort, 9mg once a day, and I follow up with the gastro middle of next month. During the course of this illness I have dropped 11 pounds in 6 weeks.
I am frustrated at the lack of info on this disease. I have a few questions/concerns that I would really appreciate some help with:
1—The diarrhea is much better, I’m not going 20+ a day as I was when this all started. However, I still have surprise moments where it suddenly hits and I have to bolt for the bathroom. Is this going to be normal from now on? (or is that just too general of a question?!)
2—I am having a positively awful time with food. I have some appetite, but after I eat the stomach pains are just awful. I have been taking Bentyl like candy seeking relief. I find it’s easier to simply not eat, but I know I can’t continue on like that.
I am a runner and the lack of energy from food is really affecting my performance. I want to eat and get stronger, but it’s just so hard for me right now. I’m limiting myself to very bland things, i.e. baby food, cream of rice, plain broiled chicken, instant breakfast shakes made with rice milk.
I’m lucky to get 1200 calories a day in. I lost a lot of weight (100+ pounds) 5 years ago and have always been diligent in healthy eating habits. I love fruits and veggies and I simply cannot eat them now, they cause too much distress. Is it beneficial to watch my gluten & dairy intake? (I know I have a problem with dairy-I have been using rice milk with no trouble). I usually have a Carnation Instant Breakfast for lunch…is this good, or do you think this also contains gluten?
I’m trying to be so careful about what I do eat, but again, I am so new to all of this.
I find I am really battling some serious depression since my diagnosis. I wonder if I am ever going to feel “good” again. There are days lately where I feel like a zombie just going thru the motions. I also wonder if I am ever going to be able to eat “normal food” ever again.
I have a goal of running a ½ marathon this fall, and I really wonder if I am going to feel well enough to do it.
I guess I just needed to vent some of the frustration I am currently experiencing—I am very thankful it’s nothing more serious, but it’s still been challenging for me to come to terms with all this. I admit, this diagnosis wasn’t a total shock-I also have Hashimoto’s disease and Asthma, so it only figures that I have another auto-immune condition to throw into the mix.
I’m so glad that I found this group—just reading some of the posts has given me some hope!
Thanks for listening, and for any suggestions you may have!
~Jill
Hello-Another Newbie here!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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jillian357
- Adélie Penguin
- Posts: 112
- Joined: Sun May 04, 2008 2:23 pm
- Location: Ohio
- Contact:
Hi Jill,
Welcome to our online family. We consider ourselves a family, because we have found that no one truly understands this disease unless they actually have it, and if is so "comforting" to be able to talk with others who really understand how you are feeling. Some of us, who have found our way back to health together, and who have been online friends for so long, share experiences that we don't even tell our real families, because they wouldn't understand. Many/most GI docs do not understand MC, and they will insist that diet has nothing to do with it. It's pretty easy to prove them wrong, but they are rarely willing to listen to a patient who contradicts their position on that, or anything else, for that matter.
To briefly address some of your questions, yes, though we are all somewhat different in the way MC affects us, most of us have experienced the same symptoms that you have. CC and LC, (we usually just refer to either of them as MC), are life-altering diseases, just like any other inflammatory bowel disease, but by comparing notes and using trial and error, we are able to find solutions that work for us, so that we can lead pretty much normal lives. MC cannot be cured, but it can definitely be controlled. As you have probably noticed by reading here, some of us use meds, some of us use diet, and some use a combination. As a rule, a combination of treatments gives faster results, and in the most severe cases, seems to be necessary.
You are already fine-tuning your diet in the right direction. Carnation Instant Breakfast was my breakfast for many years, but I had to give it up after my symptoms started. The casein that it contains is the problem. Of course, until your gut heals, you may also be lactose intolerant, but the lactose intolerance will probably eventually go away - the casein intolerance seems to be permanent, for many of us, and, of course, all dairy products contain casein. Gluten is usually the worst offender, for all but a very few who are not gluten sensitive. We seem to be just as sensitive to gluten as celiacs, although a celiac blood test shows negative results, for most of us. We use stool testing by Enterolab, in Dallas, to determine our food sensitivities, since stool testing is much more sensitive than the serum tests. Of course, you can determine your food sensitivities by trial and error, and save the cost of the tests. You appear to already have a pretty good handle on which foods affect you.
You are correct - until your gut heals, bland food is best, with a minimum amount of fiber. Just about all fruits and many vegetables cause problems for many of us, while we are healing. Most of us find that we can tolerate well-cooked veggies such as squash, green beans, broccoli, etc., but definitely not lettuce, peppers, eggplant, and a multitude of others. Healing can take one to three years, for some of us, but as we heal, most of us are able to add many foods back into out diets, though not all of them.
We have another member who runs half marathons, Karen, who no longer posts, now that she has been in remission for so long. Her symptoms matched yours, and now she is symptom free, and has always controlled her MC by diet alone. She was also soy intolerant, and the final piece of the puzzle that allowed her to achieve remission, was discovering that the "soy-free" chocolate that she was eating every day, actually contained soy, (contrary to the label). It turned out that the European label included soy, while the American label did not mention it. Sometimes you have to be a detective, in order to find relief. You might be interested in reading her old posts. You should be able to find them by doing a search on this board, by author, for her username, moremuscle.
You really need to eat more, as nutrient absorption can be very poor until you can get the diarrhea under control, and, of course, dehydration is always a threat. For almost three years, I lived on a diet of meat, (mostly well-cooked pork), potatoes, a little rice, and occasional well-cooked green beans, or broccoli, while my gut was healing. Now, I can eat virtually anything except gluten, but I avoid dairy products, because they seem to cause arthritis symptoms. Dairy products no longer make me sick, though. Many runners and other athletes use whey products, but they are best avoided, at least until you get your symptoms under control, and then you can experiment with them, if you wish.
Please feel free to ask anything, and again, welcome to the board.
Tex
Welcome to our online family. We consider ourselves a family, because we have found that no one truly understands this disease unless they actually have it, and if is so "comforting" to be able to talk with others who really understand how you are feeling. Some of us, who have found our way back to health together, and who have been online friends for so long, share experiences that we don't even tell our real families, because they wouldn't understand. Many/most GI docs do not understand MC, and they will insist that diet has nothing to do with it. It's pretty easy to prove them wrong, but they are rarely willing to listen to a patient who contradicts their position on that, or anything else, for that matter.
To briefly address some of your questions, yes, though we are all somewhat different in the way MC affects us, most of us have experienced the same symptoms that you have. CC and LC, (we usually just refer to either of them as MC), are life-altering diseases, just like any other inflammatory bowel disease, but by comparing notes and using trial and error, we are able to find solutions that work for us, so that we can lead pretty much normal lives. MC cannot be cured, but it can definitely be controlled. As you have probably noticed by reading here, some of us use meds, some of us use diet, and some use a combination. As a rule, a combination of treatments gives faster results, and in the most severe cases, seems to be necessary.
You are already fine-tuning your diet in the right direction. Carnation Instant Breakfast was my breakfast for many years, but I had to give it up after my symptoms started. The casein that it contains is the problem. Of course, until your gut heals, you may also be lactose intolerant, but the lactose intolerance will probably eventually go away - the casein intolerance seems to be permanent, for many of us, and, of course, all dairy products contain casein. Gluten is usually the worst offender, for all but a very few who are not gluten sensitive. We seem to be just as sensitive to gluten as celiacs, although a celiac blood test shows negative results, for most of us. We use stool testing by Enterolab, in Dallas, to determine our food sensitivities, since stool testing is much more sensitive than the serum tests. Of course, you can determine your food sensitivities by trial and error, and save the cost of the tests. You appear to already have a pretty good handle on which foods affect you.
You are correct - until your gut heals, bland food is best, with a minimum amount of fiber. Just about all fruits and many vegetables cause problems for many of us, while we are healing. Most of us find that we can tolerate well-cooked veggies such as squash, green beans, broccoli, etc., but definitely not lettuce, peppers, eggplant, and a multitude of others. Healing can take one to three years, for some of us, but as we heal, most of us are able to add many foods back into out diets, though not all of them.
We have another member who runs half marathons, Karen, who no longer posts, now that she has been in remission for so long. Her symptoms matched yours, and now she is symptom free, and has always controlled her MC by diet alone. She was also soy intolerant, and the final piece of the puzzle that allowed her to achieve remission, was discovering that the "soy-free" chocolate that she was eating every day, actually contained soy, (contrary to the label). It turned out that the European label included soy, while the American label did not mention it. Sometimes you have to be a detective, in order to find relief. You might be interested in reading her old posts. You should be able to find them by doing a search on this board, by author, for her username, moremuscle.
You really need to eat more, as nutrient absorption can be very poor until you can get the diarrhea under control, and, of course, dehydration is always a threat. For almost three years, I lived on a diet of meat, (mostly well-cooked pork), potatoes, a little rice, and occasional well-cooked green beans, or broccoli, while my gut was healing. Now, I can eat virtually anything except gluten, but I avoid dairy products, because they seem to cause arthritis symptoms. Dairy products no longer make me sick, though. Many runners and other athletes use whey products, but they are best avoided, at least until you get your symptoms under control, and then you can experiment with them, if you wish.
Please feel free to ask anything, and again, welcome to the board.
Tex
Welcome Jill! 
I'm glad you found us. This is a great group for support and info. I have been a member for several years, and have chosen to control my CC with Entocort. Other here are controlling it with diet. I'm sure others will be along soon to greet you.
I am also "Jill", but usually go by JJ on the Board.
Take care kiddo....hang in there....we have all been in the same boat!
JJ
I'm glad you found us. This is a great group for support and info. I have been a member for several years, and have chosen to control my CC with Entocort. Other here are controlling it with diet. I'm sure others will be along soon to greet you.I am also "Jill", but usually go by JJ on the Board.
Take care kiddo....hang in there....we have all been in the same boat!
JJ
Jill So sorry that you needed to find this board but very glad you did since you did need it.
Tex has been pretty through and you'll pick up a LOT of info just reading the different topics on the site. I believe Entocort is a great treatment for most people. You do need to give it some time to enable your healing process.
I was on Entocort (actually started with Prednisone) but I am maintaining with Asacol (not everyone tolerates this but there are other choices).
I think you are probably doing the best thing right now. Give it some time and see what it does for you. Just my opinion.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Jill and welcome.
It sounds as if your medical care is very good and on the ball with your treatment plan Entocort has been a life saver for me! I also have CC and was on Predisone for 6 weeks once stopped the 'D' returned, since January this year I have been on Entocort, although it did take around 5 weeks before I started to feel human again, it really has turned my fear and negative approach around and now I feel quite positive. My energy levels are returning and I am able to eat most foods now without the short transit time, I even manage salads and fresh fruit which is wonderful
I think one key thing I have learnt is to stay positive and focus on all the wonderful things you will be able to do again once the MC is in remission.
It sounds as if your medical care is very good and on the ball with your treatment plan Entocort has been a life saver for me! I also have CC and was on Predisone for 6 weeks once stopped the 'D' returned, since January this year I have been on Entocort, although it did take around 5 weeks before I started to feel human again, it really has turned my fear and negative approach around and now I feel quite positive. My energy levels are returning and I am able to eat most foods now without the short transit time, I even manage salads and fresh fruit which is wonderful
I think one key thing I have learnt is to stay positive and focus on all the wonderful things you will be able to do again once the MC is in remission.Jill,
I forgot to address your question about the "super-urgency" that accompanies MC - no, this will not always be a part of your normal routine. After you get your symptoms under control, your routine will be pretty much back like it was before the symptoms began. The "super-urgency" and "accidents" phase that most of us go through, will be history, as long as you maintain control either by diet, or by taking a maintenance dose of a med that works for you.
Also, as Mini so eloquently pointed out, all the "brain fog" and depression will gradually disappear, as you fine tune your treatment, and your body has a chance to heal.
Tex
I forgot to address your question about the "super-urgency" that accompanies MC - no, this will not always be a part of your normal routine. After you get your symptoms under control, your routine will be pretty much back like it was before the symptoms began. The "super-urgency" and "accidents" phase that most of us go through, will be history, as long as you maintain control either by diet, or by taking a maintenance dose of a med that works for you.
Also, as Mini so eloquently pointed out, all the "brain fog" and depression will gradually disappear, as you fine tune your treatment, and your body has a chance to heal.
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.
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jillian357
- Adélie Penguin
- Posts: 112
- Joined: Sun May 04, 2008 2:23 pm
- Location: Ohio
- Contact:
Thank you all SO much for the warm welcome, it is very much appreciated.
I have alot to learn...and I definitely think I need to dig deeper into the gluten intolerance theory, sounds like it would only serve to benefit my health.
I don't feel quite so hopeless as I did earlier, and I thank you all very much. I look forward to getting to know you all better!
Thanks again!
Jill
I have alot to learn...and I definitely think I need to dig deeper into the gluten intolerance theory, sounds like it would only serve to benefit my health.
I don't feel quite so hopeless as I did earlier, and I thank you all very much. I look forward to getting to know you all better!
Thanks again!
Jill
WELCOME Jill!! I have been here since jan. 08 when i was diagnosed...feeling very much like you...it is indeed a life changing disease and enormouly frustrating to try and figure it all out!! it has been interesting and fun for me to go back and read previous posts form the "old hands at this" on the board and learned so much as i did. you will feel very welcomed indeed by the end of the day!! and...you will be glad you found us and we will be glad to have you on board!!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Hi Jill
Welcome!! I began having MC problems about 16 months ago. It took about 3-4 weeks for me to see improvement after taking Entocort, but what a relief it was and is! I'm still working on determining exactly what foods are bothering me, but I've greatly benefited from the advice and experience of the members on this board.
You've come to the right place; there is a wealth of information here. I'm still reading earlier postings and continue to learn from them. Feel free to ask any questions - chances are someone here can answer them for you.
Gloria
Welcome!! I began having MC problems about 16 months ago. It took about 3-4 weeks for me to see improvement after taking Entocort, but what a relief it was and is! I'm still working on determining exactly what foods are bothering me, but I've greatly benefited from the advice and experience of the members on this board.
You've come to the right place; there is a wealth of information here. I'm still reading earlier postings and continue to learn from them. Feel free to ask any questions - chances are someone here can answer them for you.
Gloria
You never know what you can do until you have to do it.
Hi Jillian and
So glad you joined us. Just wanted to reiterate what Tex said about Karen (moremuscle), another member here. She is a runner too and when first diagnosed felt depressed like you do. However, she really took the bull by the horns and went into remission quickly. I believe the reason she did was because she jumped immediately to the hunter-gatherer diet. She did not waste time eliminating foods one by one. She made a decision to go "cold turkey" with the paleo (caveman) diet and saw results much more quickly than I did.
I also enjoy running but have not done the distances you do. My longest race was 10 miles. I was able to run even in the early stages of MC. Fortunately, I have a nearby trail that goes 20 miles through woods. So, I always took Kleenex along so I could duck behind a tree if necessary. I also have a treadmill, so I could use that on days when it was impossible to leave the house because of the diarrhea.
I am now on the paleo diet and it works beautifully for me. If you want to learn more, check out the book "The Paleo Diet" by Loren Cordain, PhD. It is chock full of the latest scientific thinking (over 400 references to studies) and also has menu suggestions.
Also, I'm sure Karen wouldn't mind if you sent her a PM. Send it to "moremuscle" here at this website.
Good luck and please keep us posted on your progress. I'll keep my fingers crossed for the half-marathon.
Love,
Polly
So glad you joined us. Just wanted to reiterate what Tex said about Karen (moremuscle), another member here. She is a runner too and when first diagnosed felt depressed like you do. However, she really took the bull by the horns and went into remission quickly. I believe the reason she did was because she jumped immediately to the hunter-gatherer diet. She did not waste time eliminating foods one by one. She made a decision to go "cold turkey" with the paleo (caveman) diet and saw results much more quickly than I did.
I also enjoy running but have not done the distances you do. My longest race was 10 miles. I was able to run even in the early stages of MC. Fortunately, I have a nearby trail that goes 20 miles through woods. So, I always took Kleenex along so I could duck behind a tree if necessary. I also have a treadmill, so I could use that on days when it was impossible to leave the house because of the diarrhea.
I am now on the paleo diet and it works beautifully for me. If you want to learn more, check out the book "The Paleo Diet" by Loren Cordain, PhD. It is chock full of the latest scientific thinking (over 400 references to studies) and also has menu suggestions.
Also, I'm sure Karen wouldn't mind if you sent her a PM. Send it to "moremuscle" here at this website.
Good luck and please keep us posted on your progress. I'll keep my fingers crossed for the half-marathon.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Jill and welcome. I don't post very often but I wanted to come on here and reply to you. I was diagnosed about 3 years ago. I had symptoms for over a year before I was ever diagnosed, at was at the point of going 15 times a day. I also had severe side pains. My GI put me on Asacol. I took the Asacol for about a year and ahalf. It did help some. I was down to about 4 timmes a day and most of the pain was gone. I still really struggled with the fact that this wasn't going to get better.
I want to mention that I am also a runner. I actually am a walker trying to convert to running but I have completed 2 full marathons and 5 half marathons.
My running partner heard some inforamtion on Celiac. I started doing some of my own research on it and cut gluten out of my diet. I coul dnot believe the difference. As I started to talk to my family about this I learned my grandmother also doesn't tolerate gluten. I made another appointment with my GI (put gluten back in my diet so I could be tested) and had the Celiac test. He informed me I did not have the antibodies for it so he couldn't diagnosis it. He said if it worked then I could discontinue my Asacol (I had already done that) and if i had no more symptoms I didn't need to see him again. That was about 8 months ago and for the most part I'm symptom free.
I started my walking/running about a year before my symptoms. I completed many races and fought through all of the symptoms. Iwas very fortunate that most races days my stomach behaved. There were many morning on just a regular walk that I ran into Starbucks because I couldn't wait 5 minutes until I got home and there were a few times I had accidents. I just made sure my running partner knew I had these problems and tried to stay close to the bathroom.
There is hope to move past this. I wish you all the luck in your 1/2. If you ever need advice I will give all I have to offer. You can email me by clicking on the "email" button at the bottom of this message.
I want to mention that I am also a runner. I actually am a walker trying to convert to running but I have completed 2 full marathons and 5 half marathons.
My running partner heard some inforamtion on Celiac. I started doing some of my own research on it and cut gluten out of my diet. I coul dnot believe the difference. As I started to talk to my family about this I learned my grandmother also doesn't tolerate gluten. I made another appointment with my GI (put gluten back in my diet so I could be tested) and had the Celiac test. He informed me I did not have the antibodies for it so he couldn't diagnosis it. He said if it worked then I could discontinue my Asacol (I had already done that) and if i had no more symptoms I didn't need to see him again. That was about 8 months ago and for the most part I'm symptom free.
I started my walking/running about a year before my symptoms. I completed many races and fought through all of the symptoms. Iwas very fortunate that most races days my stomach behaved. There were many morning on just a regular walk that I ran into Starbucks because I couldn't wait 5 minutes until I got home and there were a few times I had accidents. I just made sure my running partner knew I had these problems and tried to stay close to the bathroom.
There is hope to move past this. I wish you all the luck in your 1/2. If you ever need advice I will give all I have to offer. You can email me by clicking on the "email" button at the bottom of this message.
Hi Jen,
I hope you will forgive me, but I edited your post to remove your e-mail address. Spammers have "spambots" that constantly scan discussion boards and websites for e-mail addresses to add to their collection, and to sell to other spammers. However, those "bots" cannot see, (nor can they access), e-mail addresses, nor any other information in our members' profiles. In fact, even new members cannot see that information at first. If they click on an e-mail button, they will be re-directed, and the actual e-mail address will remain hidden. If Jill clicks on your "e-mail" button, though, it will work for her, and she will indeed be able to send you an e-mail.
Remember, anything that we post on the board, can be seen by the whole world. During what we consider to be emergencies, some of us have posted e-mail addresses, and even phone numbers, in order to try to help someone who might not be able to think clearlfy enough to even try to find the information otherwise, but posting that information routinely, is definitely not a good practice. I have been known to post my contact information, for example, but I have an excellent spam filter, and I think every spammer in the world already has my address, anyway. LOL.
Anyway, the point is, the "PM" and "email" buttons on this board, are a secure way to communicate with anyone on the board, while keeping your contact information out of the hands of the rest of the world.
Thanks for posting - that's excellent information. We have quite a few members who are runners.
Tex
I hope you will forgive me, but I edited your post to remove your e-mail address. Spammers have "spambots" that constantly scan discussion boards and websites for e-mail addresses to add to their collection, and to sell to other spammers. However, those "bots" cannot see, (nor can they access), e-mail addresses, nor any other information in our members' profiles. In fact, even new members cannot see that information at first. If they click on an e-mail button, they will be re-directed, and the actual e-mail address will remain hidden. If Jill clicks on your "e-mail" button, though, it will work for her, and she will indeed be able to send you an e-mail.
Remember, anything that we post on the board, can be seen by the whole world. During what we consider to be emergencies, some of us have posted e-mail addresses, and even phone numbers, in order to try to help someone who might not be able to think clearlfy enough to even try to find the information otherwise, but posting that information routinely, is definitely not a good practice. I have been known to post my contact information, for example, but I have an excellent spam filter, and I think every spammer in the world already has my address, anyway. LOL.
Anyway, the point is, the "PM" and "email" buttons on this board, are a secure way to communicate with anyone on the board, while keeping your contact information out of the hands of the rest of the world.
Thanks for posting - that's excellent information. We have quite a few members who are runners.
Tex