I am new to this website and I am soooo glad that I found it. I have had problems with my bowels for as long as I can remember. I had a colonoscopy about 6 years ago but they did not do any biopsies so they just said that it must be IBS. I also have really bad fibromyalgia and some osteoarthritis. As time has passed, my bowels have progressively gotten worse. I finally had another colonoscopy WITH biopsies back in May of this year and it was determined that I have lymphocytic colitis. I was relieved to at least get a diagnosis. However, I have been on Entocort since May with no signs of improvement. They did a gallbladder ultrasound and determined that I had significant stones and ended up removing my gallbladder in September of this year. Of course that has just made the constant D even worse. I have also been having panic attacks and they are now checking my heart. After wearing a holter monitor for the weekend last month, they determined that I have tachycardia and wenckebach. The doctor also said that I have a heart murmur. I just did a stress test and Echocardiogram this week and I am awaiting the results. I have been taking the Entocort religiously and I have also been on Welchol which did not work, they switched me from the Welchol to Lotronex and Cholestyramine which also have not been helping at all. I am very careful of what I eat because of the D getting even worse after eating. It is bad enough even when I don't eat!! I have not been able to return to work since September and I am afraid that I am going to loose my job. At this point the doctor's have assured me that if that happens they will back me up in filing for disability. I just hate to do that but may end up having to try. I feel like a prisoner in my own home. I have even had to reschedule doctor's appointments because of having difficulty making it to the doctor's office because of the D. I have been dealing with this problem for so long that I just feel as if I am getting nowhere and spending every dime I have on these very expensive medications. My insurance is pretty good, but the prescription part I have to pay for in advance and then get reimbursed after meeting my deductible and my out-of-pocket is $800 before it pays 100%.
I am just really glad that I have found this website because it has so much great information and now I do not feel alone. I was getting to the point that I thought that it was just me. Hopefully, the doctors will be able to find the right balance of medications and get me on track but according to them it may take quite some time.
Has anyone else had this problem with not being able to get any relief?
New here and at my wits end!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Danagrantham
- Posts: 5
- Joined: Thu Nov 12, 2009 10:51 pm
- Location: Alabama
you'll find more help on this site from Tex, Dr. Polly and the PP than from almost any doctor. I speak from experience. Please start by reading the information for newbies and at www.enterolab.com
It's overwhelming to be sure but you can get your life back.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
BTW, I am controlling my LC by diet alone! I learned about that from the PP not my doc. I am teaching my doc and feel she should be paying me. 
Most doctors will poo poo (pun intended) diet for Microscopic Colitis (LC and CC) but they are WRONG. The diet is NOT fun but it works.
Most doctors will poo poo (pun intended) diet for Microscopic Colitis (LC and CC) but they are WRONG. The diet is NOT fun but it works.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Dana,
Welcome to our internet family. I'm sorry to hear of all the problems that you've developed, and I'm also very sorry that your doctors haven't been able to provide you with any relief from the D. Hopefully, we can help you to to get your life back, because most of us have been where you are, at one time. And yes, we have many members for whom Entocort, (or any medication), will not bring remission, without diet changes. As Joan pointed out, It's very likely that your doctors have told you that diet has nothing to do with LC, but many of us here remain in remission by diet alone, while others require a maintenance dose of Entocort, (usually 3mg per day, or every other day), in addition to diet restrictions. This disease cannot be cured, but the symptoms can certainly be controlled well enough that with reasonable care in watching your diet, you can lead an otherwise normal life.
Due to changes that went into effect on the first of January, this year, you do indeed qualify for disability, if you should wish to pursue that course.
Most of us here are sensitive to gluten, (the primary protein in wheat, rye, barley, and oats), and casein, (the primary protein in all dairy products), so we have to avoid all traces of them, in order to achieve remission, and remain in remission. About half us are also sensitive to soy protein, and a few are sensitive to egg whites, and yeast. Even fewer are sensitive to corn and sorghum derivatives. The food intolerances that we have, appear to be dependent on the types of genes that we have. IOW, some of us have only 2 or 3 sensitivities, while some have many.
You will also find that eliminating gluten and casein from your diet, will help your fibromyalgia and osteoarthritis symptoms, as your intestines heal from the damage caused by them, (gluten and casein).
Most of us have experienced the embarrassing "accidents" that are always a risk if we go out in public, before we are in remission. No one truly understands this disease, unless they have it, so that's why we consider ourselves a family. Here, we can discuss what needs to be discussed, without feeling embarrassed, and without wondering if anyone understands, because we all understand.
MC can be a very humbling disease, so we're not bashful here, when it comes to discussing the symptoms that we have to live with, and the things that we have to do in order to deal with them, while trying to maintain our sanity, and our dignity, on our journey back to health. Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry to hear of all the problems that you've developed, and I'm also very sorry that your doctors haven't been able to provide you with any relief from the D. Hopefully, we can help you to to get your life back, because most of us have been where you are, at one time. And yes, we have many members for whom Entocort, (or any medication), will not bring remission, without diet changes. As Joan pointed out, It's very likely that your doctors have told you that diet has nothing to do with LC, but many of us here remain in remission by diet alone, while others require a maintenance dose of Entocort, (usually 3mg per day, or every other day), in addition to diet restrictions. This disease cannot be cured, but the symptoms can certainly be controlled well enough that with reasonable care in watching your diet, you can lead an otherwise normal life.
Due to changes that went into effect on the first of January, this year, you do indeed qualify for disability, if you should wish to pursue that course.
Most of us here are sensitive to gluten, (the primary protein in wheat, rye, barley, and oats), and casein, (the primary protein in all dairy products), so we have to avoid all traces of them, in order to achieve remission, and remain in remission. About half us are also sensitive to soy protein, and a few are sensitive to egg whites, and yeast. Even fewer are sensitive to corn and sorghum derivatives. The food intolerances that we have, appear to be dependent on the types of genes that we have. IOW, some of us have only 2 or 3 sensitivities, while some have many.
You will also find that eliminating gluten and casein from your diet, will help your fibromyalgia and osteoarthritis symptoms, as your intestines heal from the damage caused by them, (gluten and casein).
Most of us have experienced the embarrassing "accidents" that are always a risk if we go out in public, before we are in remission. No one truly understands this disease, unless they have it, so that's why we consider ourselves a family. Here, we can discuss what needs to be discussed, without feeling embarrassed, and without wondering if anyone understands, because we all understand.
MC can be a very humbling disease, so we're not bashful here, when it comes to discussing the symptoms that we have to live with, and the things that we have to do in order to deal with them, while trying to maintain our sanity, and our dignity, on our journey back to health. 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
Dana,
Welcome to the best place for folks like us. I am sorry you have been ill for such a long time.
Read as much as you can. Many of the folks here have been living with MC for years.
I am new too so I will let the experts give the advice.
Just wanted to say, I am so glad you are here.
Connie
Welcome to the best place for folks like us. I am sorry you have been ill for such a long time.
Read as much as you can. Many of the folks here have been living with MC for years.
I am new too so I will let the experts give the advice.
Just wanted to say, I am so glad you are here.
Connie
Amen to that, Joan!I am teaching my doc and feel she should be paying me.
I too control my LC mostly by diet (gf and df) and with Pentasa to heal my gut. I've gone from desperation and losing weight to stability and a more normal life. I'm just starting (carefully and slowly) to travel a little. Such a big change to diet is a lot of effort but it works.
Sure I miss wheat bread, raw veggies, broccoli, sprouts, and yogurt and all the other stuff I've had to give up, but based on what I've learned in the last 6 months, I see a day when I might have many of them again. And if I have to be gf for the rest of my life, so be it - beats living in the bathroom.
As for a gf df and avoiding-soy diet, I don't starve. I make everything from scratch pretty much. Today? Muffins and grain flake cereal for breakfast. For lunch it's carrot and ginger soup, turkey meatloaf, side veggies, gravy; dessert is pumpkin pie and date slice. Supper is chicken in mushroom sauce, rice pasta, side veggies, and more pie or slice. All gf df sf and all real food; it's taken time to master but I'm getting there.
Maxine
Your food sounds wonderful, Maxine.
I am so thankful that I have a doctor who actually listens. She didn't start out that way. She put up such a fuss for writing a script for EnteroLab testing at first. She even fussed with the EL nurse. I really wanted to change doctors...........
Things should get better for all of us when Dr. Fine gets published.
I am so thankful that I have a doctor who actually listens. She didn't start out that way. She put up such a fuss for writing a script for EnteroLab testing at first. She even fussed with the EL nurse. I really wanted to change doctors...........
Things should get better for all of us when Dr. Fine gets published.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
How sad that you have been undiagnosed with MC for so many years. But the good news is that you have a diagnosis and can determine your plan of action to get your life under control again. Unfortunately there aren't any "magic bullets", we all have to find our own way. When I first came here, I was hoping that there was some sort of medication that I could take and not have to worry about diet restrictions. Unfortunately, that's not how it works. We have to take control of our own health, something that doesn't always come easily when we are brought up to depend on doctors to tell us what to do.
Diet is crucial in taking control. I too have been controlling my symptoms with diet alone. As has been said here many times, virtually everyone with MC is sensitive to gluten. Many of us have been tested for the major possible food sensitivites at Enterolab www.enterolab.com . They test a stool sample for gluten, dairy, soy, egg and yeast sensitivities. It's a very sensitive and reliable test that has allowed many of us to begin the road to healing by knowing what we should eliminate to start with. The gluten and dairy tests are $99 each, and you can get the combined soy, egg and yeast panel for $199. Unfortunately most insurance won't cover these tests. The good thing about being tested is that it provides the motivation to be careful about eliminating all the sources of sensitivities.
As Tex mentioned, I was amazed at how a number of other health problems got so much better once I tackeled my diet. My asthma improved dramatically. And the fatigue that seemed so overwhelming lifted after a while. The diet restrictions can be dealt with, but it can be hard at the start when you are tired and depressed and don't have much energy.
Rosie
Diet is crucial in taking control. I too have been controlling my symptoms with diet alone. As has been said here many times, virtually everyone with MC is sensitive to gluten. Many of us have been tested for the major possible food sensitivites at Enterolab www.enterolab.com . They test a stool sample for gluten, dairy, soy, egg and yeast sensitivities. It's a very sensitive and reliable test that has allowed many of us to begin the road to healing by knowing what we should eliminate to start with. The gluten and dairy tests are $99 each, and you can get the combined soy, egg and yeast panel for $199. Unfortunately most insurance won't cover these tests. The good thing about being tested is that it provides the motivation to be careful about eliminating all the sources of sensitivities.
As Tex mentioned, I was amazed at how a number of other health problems got so much better once I tackeled my diet. My asthma improved dramatically. And the fatigue that seemed so overwhelming lifted after a while. The diet restrictions can be dealt with, but it can be hard at the start when you are tired and depressed and don't have much energy.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
I've solved that for me by cooking larger amounts and having plenty of meals in the fridge or freezer I can reheat in the microwave. Some days I don't even feel like making even that effort but I know that for me, if I don't eat I'll be more tired and more irritable and depressed; and I'll get a migraine headache. When I feel eating is too much effort, I have a mug of soup. There's something very comforting in curling up on the sofa with a blanket, with a mug of soup, and the cat.The diet restrictions can be dealt with, but it can be hard at the start when you are tired and depressed and don't have much energy.
Ingredients are cheaper in bulk anyway, and if I'm making the effort to do meatballs in sauce for 2, it might as well be for 6 or 8, and save the rest. I also cook more veggies than I need for the meal, at least those veggies that can reheat without losing their shape and taste. Carrots, squash, and sweet potato work especially well. If I don't do this, it's easy to just eat the main dish and not bother with veggies. Not good! if they're there already cooked, just needing a reheat, I eat them.
This works really well for me as I tend to have spurts of energy then drag-my-butt- around tiredness where even watching tv is too much effort.
Dee: if you read this, the pumpkin pie from your recipe was awesome! I don't have pumpkin spice so I ground cloves, and added cinnamon, anise, and nutmeg. My SIL was so taken with it, she took 2 slices away with her for family. Thanks!
Maxine
Dear Danagrantham,
Just wanted to add my welcome from Hong Kong.
This family is spread across the world, but at the same time is so close because, as others have said, we are all bound by the same symptoms, hopes and fears. Above all we help each other to get our lives back together, by science, by behavior, by lifestyle tips, by understanding.
All the best, Ant
Just wanted to add my welcome from Hong Kong.
This family is spread across the world, but at the same time is so close because, as others have said, we are all bound by the same symptoms, hopes and fears. Above all we help each other to get our lives back together, by science, by behavior, by lifestyle tips, by understanding.All the best, Ant
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Danagrantham
- Posts: 5
- Joined: Thu Nov 12, 2009 10:51 pm
- Location: Alabama
Dana, you mention panic attacks. I noticed that your age is 47, and I wanted to share with you that my hot flashes when they first started with menopause in my 40's felt very much like a panic attack. I would feel dizzy, my heart would pound, and it affected my brain so that I couldn't concentrate to hold a conversation. At first they scared me because I didn't recognize them for what they were. It must run in my family, because my sister gets ones like this too. The hot flashes are known to be associated with a "cortisol rush", so no wonder. Many women just feel hot and don't have other symptoms, but some, like me, have it worse. As I've gotten older the hot flashes aren't as severe, but I still get some "brain fuzziness" when it happens. I don't know if you are starting menopause, or if you get the traditional hot flashes and your "panic attacks" are something different, but I just wanted to bring this up.
Rosie
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
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Danagrantham
- Posts: 5
- Joined: Thu Nov 12, 2009 10:51 pm
- Location: Alabama
Rosie,
I had a complete hysterectomy in 2000 and have had hot flashes since then. I take Premarin to help control them. I have never had the panic attack symptoms with my hot flashes before. I honestly feel that my panic attacks are associated with the stress of the possibility of losing my job!! The company that I work for merged with another company as of July 1st of this year and they expected me to be a big part of the transition. However, I have not been able to help as much as they want me to. I have been working from home since September 11th and being able to scrape by with my bills. However, they are now shifting a lot of my work to my replacement and my hours have been cut dramatically. This worries me considerably which is why I am considering social security disability. I did pick up long-term disability through the new merged company on July 1st but they said that because I was diagnosed before July 1st that I cannot receive the long-term disability.
I also take Cymbalta and my doctor has raised the dosage from 60 mg to 90 mg per day. I still have the panic attacks though. I just worry that I will not be approved for disability and then I don't know what to do in order to pay the bills. I cannot get unemployment because I am unable to work in this condition.
Dana
I had a complete hysterectomy in 2000 and have had hot flashes since then. I take Premarin to help control them. I have never had the panic attack symptoms with my hot flashes before. I honestly feel that my panic attacks are associated with the stress of the possibility of losing my job!! The company that I work for merged with another company as of July 1st of this year and they expected me to be a big part of the transition. However, I have not been able to help as much as they want me to. I have been working from home since September 11th and being able to scrape by with my bills. However, they are now shifting a lot of my work to my replacement and my hours have been cut dramatically. This worries me considerably which is why I am considering social security disability. I did pick up long-term disability through the new merged company on July 1st but they said that because I was diagnosed before July 1st that I cannot receive the long-term disability.
I also take Cymbalta and my doctor has raised the dosage from 60 mg to 90 mg per day. I still have the panic attacks though. I just worry that I will not be approved for disability and then I don't know what to do in order to pay the bills. I cannot get unemployment because I am unable to work in this condition.Dana