Introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Introduction
Hello to all of you! My name is Leann and I was diagnosed with lymphocytic colitis in May of 2012. At that time I had had symptoms for about 3 months and was relieved to find out I wasn't dying of pancreatic cancer. I had lost a significant amount of weight but strangely, when I was diagnosed, my symptoms cleared up, without any meds or dietary changes. Unfortunately my symptoms returned in December 2012. I waited a week or two, thinking it may just be a bug, but when things didn't clear up, I called my GI dr. She acted like I was an alarmist and called my symptoms a "nuisance". I told her that I could continue working and not eating or eat and have to stay home....At this point I had lost about 10 pounds. She prescribed budesonide which I began taking as prescribed. I also started a gluten free diet. Well it has been almost 4 weeks and although I am not having frequent diarrhea (it was about 12-`15 times per day), I cant honestly say it is that much better.. not "normal" anyway. I have stuck to the diet which wasn't has hard as I thought it would be and cut out all soy and most dairy products as well. I feel very discouraged and down. I think my family is sick of me feeling sick, sick of my "special diet", and sick of my grumpy self. How long before I know if the budesonide is working? What else should I be doing or not doing? I get the impression from my Dr. that she is winging it. Any suggestions would be appreciated. Also forgive me if I don't post this right. I have never been on a board like this before and I am not very computer savy.
Hi Leann,
Welcome to the board. Your GI doc seems to have the same attitude that a lot of GI specialists have about this disease. It's a shame that they can't enjoy the privilege of trying to live with it for a few months. They would quickly experience an attitude adjustment, at the very least.
With both budesonide and diet changes, you should be seeing significant improvement after 4 weeks. The problem is that for many of us, budesonide will not control the symptoms without strict diet changes, and for some individuals, budesonide is not effective. In those cases, we have to be even more careful with our diet, in order to achieve remission.
Most of us are sensitive to the protein in all dairy products (casein), and avoiding "most dairy products" is an exercise in futility. We are very sensitive to the foods that cause us to react, so we have to strictly avoid them, 100 %, all of the time. There is also the possibility that you may be sensitive to additional foods, such as eggs. While we are recovering, most of us have to minimize fiber and sugar in the diet, also, and all artificial sweeteners are also off limits for virtually all of us.
Are you taking any other medications? MC can be caused by many drugs, including (but not limited to) antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, bisphosphonates, statins, beta blockers, and the list goes on. Even hormonal supplements, such as contraceptives can prevent remission in many cases. If we are taking one or more of these drugs, and we are sensitive to it/them, they will trump any treatment efforts, including budesonide and/or diet changes.
Your impression of your doctor is probably accurate, but at least she was willing to prescribe the budesonide in an effort to help. This is a life-altering disease, and as such, it causes a depressed, discouraged, lonely frame of mind. Virtually all of us understand how you feel, because we've been there ourselves. It takes dedication and perseverance, and a lot of detective work tracking down our food sensitivities, in order to gain control over the disease. But it's doable, and until some miraculous breakthrough treatment comes along, it's the only way we have to get our life back, so that makes our treatment program an extremely important part of our life, at least until we are able to reach remission.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Your GI doc seems to have the same attitude that a lot of GI specialists have about this disease. It's a shame that they can't enjoy the privilege of trying to live with it for a few months. They would quickly experience an attitude adjustment, at the very least.
With both budesonide and diet changes, you should be seeing significant improvement after 4 weeks. The problem is that for many of us, budesonide will not control the symptoms without strict diet changes, and for some individuals, budesonide is not effective. In those cases, we have to be even more careful with our diet, in order to achieve remission.
Most of us are sensitive to the protein in all dairy products (casein), and avoiding "most dairy products" is an exercise in futility. We are very sensitive to the foods that cause us to react, so we have to strictly avoid them, 100 %, all of the time. There is also the possibility that you may be sensitive to additional foods, such as eggs. While we are recovering, most of us have to minimize fiber and sugar in the diet, also, and all artificial sweeteners are also off limits for virtually all of us.
Are you taking any other medications? MC can be caused by many drugs, including (but not limited to) antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, bisphosphonates, statins, beta blockers, and the list goes on. Even hormonal supplements, such as contraceptives can prevent remission in many cases. If we are taking one or more of these drugs, and we are sensitive to it/them, they will trump any treatment efforts, including budesonide and/or diet changes.
Your impression of your doctor is probably accurate, but at least she was willing to prescribe the budesonide in an effort to help. This is a life-altering disease, and as such, it causes a depressed, discouraged, lonely frame of mind. Virtually all of us understand how you feel, because we've been there ourselves. It takes dedication and perseverance, and a lot of detective work tracking down our food sensitivities, in order to gain control over the disease. But it's doable, and until some miraculous breakthrough treatment comes along, it's the only way we have to get our life back, so that makes our treatment program an extremely important part of our life, at least until we are able to reach remission.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Oh Leann, I am so sorry that the budesonide isn't working quickly for you! I think more and more people are having trouble getting control of MC with budesonide and diet. I am one of those.
Here is one quick and easy thing to try. A lot of people find that Zyrtec or Claritin can help decrease bathroom episodes and consistency. There is some sort of histamine association with MC that can benefit from an antihistamine. Be aware that all cetirizine tablets -zyrtec, have lactose in them. I take the liquid form for kids bc it doesn't contain lactose. Some people are very happy with Claritin, but it didn't work for me.
Just know that gluten and dairy take about two weeks to clear your system. Tex is right, as inconvenient and frustrating it may be to your family, you probably should try no dairy products for at least two weeks. I am sure they want more for you to be not sick than for you to eat normal food!! "Coconut, almond, and rice milks are good alternatives to try, you just pretty much have to skip the cheese
I haven't found any good substitutions for that!
Hope that is helpful, and please continue to ask questions and post comments. We are all here for that reason, to support and be supported!
Susie
Here is one quick and easy thing to try. A lot of people find that Zyrtec or Claritin can help decrease bathroom episodes and consistency. There is some sort of histamine association with MC that can benefit from an antihistamine. Be aware that all cetirizine tablets -zyrtec, have lactose in them. I take the liquid form for kids bc it doesn't contain lactose. Some people are very happy with Claritin, but it didn't work for me.
Just know that gluten and dairy take about two weeks to clear your system. Tex is right, as inconvenient and frustrating it may be to your family, you probably should try no dairy products for at least two weeks. I am sure they want more for you to be not sick than for you to eat normal food!! "Coconut, almond, and rice milks are good alternatives to try, you just pretty much have to skip the cheese
I haven't found any good substitutions for that!Hope that is helpful, and please continue to ask questions and post comments. We are all here for that reason, to support and be supported!
Susie
Thank you for your quick replies!! You are right, I am sure, I will stop all dairy. I have almost eliminated all raw fruits and veggies, eating only very cooked and soft ones. I will check my other medications (an antidepressant I have only just started thanks to the MC)....I will try the Zyrtec. And I will stop eggs too. Good Lord what am I going to eat? Has anyone tried any natural supplements, essential oils, etc.... acupuncture? I have been trying to cut back on stress as I am sure this effects everything. I just can't tell you how nice it is to talk and hear from people who can relate to this wonderful "Issue".
-
wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
introduction
Leann,
You may need to ditch that GI specialist---I am on my 5th ;-
When I was diagnosed I got both Lialda and budesonide. Lialda stopped my symptoms in conjunction with budesonide. I was weaned off budesonide and stayed with lialda (an anti-inflammatory that prescribed for celiacs but works great for LC).
You may bring it up to your doc.
Hope you feel better soon.
Monique
You may need to ditch that GI specialist---I am on my 5th ;-
When I was diagnosed I got both Lialda and budesonide. Lialda stopped my symptoms in conjunction with budesonide. I was weaned off budesonide and stayed with lialda (an anti-inflammatory that prescribed for celiacs but works great for LC).
You may bring it up to your doc.
Hope you feel better soon.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Leann
As far as I can tell, there are many people on this board who use acupuncture and find it very helpful--I know that I do! I am enrolling in a Mindfulness Meditation class in March and do a lot of my own meditating. When I am not in a flare, I exercise for 30 minutes each day. I have been in a flare since last May and I think that I am finally able to at least do some walking. There are many ways, many methods of de-stressing that we all use.
If you haven't already, get Tex's book on Microscopic Colitis. It is very informative. A great reference.
I wish you well. Don't panic or feel overwhelmed by this, as it is a disease that is workable--its all in figuring out what works. There are a lot of people much better at puzzling these things out than I am--I never did like puzzles and haven't got a lot of patience. I have a friend who has Crohn's and when she was explaining the importance of the diet to me, I said to her, "I did not sign up for this! I wonder who thought this was a good idea?" As soon as it came out of my mouth I realized that at least I did not have Crohn's and that I was being pretty ungrateful. Thankfully she merely laughed at me and said, "None of us signs up for this!"
As far as I can tell, there are many people on this board who use acupuncture and find it very helpful--I know that I do! I am enrolling in a Mindfulness Meditation class in March and do a lot of my own meditating. When I am not in a flare, I exercise for 30 minutes each day. I have been in a flare since last May and I think that I am finally able to at least do some walking. There are many ways, many methods of de-stressing that we all use.
If you haven't already, get Tex's book on Microscopic Colitis. It is very informative. A great reference.
I wish you well. Don't panic or feel overwhelmed by this, as it is a disease that is workable--its all in figuring out what works. There are a lot of people much better at puzzling these things out than I am--I never did like puzzles and haven't got a lot of patience. I have a friend who has Crohn's and when she was explaining the importance of the diet to me, I said to her, "I did not sign up for this! I wonder who thought this was a good idea?" As soon as it came out of my mouth I realized that at least I did not have Crohn's and that I was being pretty ungrateful. Thankfully she merely laughed at me and said, "None of us signs up for this!"
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Welcome Leann. We all know how you are feeling. Even after a year and mostly good days, I still get depressed on certain days because I can't eat with everyone else and just be "normal". I think my hormones have something to do with that :)
It's too bad that the Entocort isn't working for you and that the diet changes haven't given you results either. It does take a lot of time. For me, it took about 6 months to get to a good place.
If you have the money, you might want to do the tests that Enterolab has to offer. They will give you sure results as to what foods you are intolerant to. Check out the web site and see if it's something that you want to do. It takes a lot of the guess work or detective work out.
Eggs are definitely something you may want to try to get rid of. Are you staying away from beans and legumes? For me, I still react to tomato products and peppers ( even cooked) also. We are all different when it comes to the "other" foods ( besides the big four) we are sensitive to.
If Entocort doesn't work for you, then you might want to look into the Pepto Bismul Program. It works wonders for some people.
Don't give up . I know it's frustrating and exhausting, but you CAN figure this out.
Good luck and keep us posted.
Leah
It's too bad that the Entocort isn't working for you and that the diet changes haven't given you results either. It does take a lot of time. For me, it took about 6 months to get to a good place.
If you have the money, you might want to do the tests that Enterolab has to offer. They will give you sure results as to what foods you are intolerant to. Check out the web site and see if it's something that you want to do. It takes a lot of the guess work or detective work out.
Eggs are definitely something you may want to try to get rid of. Are you staying away from beans and legumes? For me, I still react to tomato products and peppers ( even cooked) also. We are all different when it comes to the "other" foods ( besides the big four) we are sensitive to.
If Entocort doesn't work for you, then you might want to look into the Pepto Bismul Program. It works wonders for some people.
Don't give up . I know it's frustrating and exhausting, but you CAN figure this out.
Good luck and keep us posted.
Leah
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Leann
welcome (actually seeing as it is Australia day, G'day)
the truths of MC can be overwhelming at first. stop take a few breathes it will get easier and less overwhelming
if you do a search on the word accupuncture within the forum, you will see numerous discussions there are quite a few that have used it (I am one of them)
and other natural therapies
the MC long story summarised to bullet points
- there is no magic pill, quick fix or short cut or guaranteed solution
- what works for one, may not work so well for another so you have to figure out what works best for you this applies to medications, foods, lifestyle, what time you eat etc
- treatments like accupuncture can not cure MC, but it can do alot of good to reduce inflammation, get your digestion system and organs functioning properly, increase energy
- stress is one of the known major triggers. A MC'er in remission can go into full blown flare due to a stressful event.
- only about 1 in 20ish have a good doctor or good GI. these people have gained success by 'Self Management' being; informed decisions using the wealth of knowledge on this forum, the support of these amazing generous people
- based on the few hundred people here, main triggers are things like Gluten, Dairy, Soy next level of triggers are things like eggs,
- depending on how inflammed your gut is, healing can take anything from a month to 3 months, to a year or more...
you dont have to be computer savy to benefit from this forum!
take your time reading etc, use the search function and if you need to ask questions, we dont mind if it has been asked 100 times before.....
welcome (actually seeing as it is Australia day, G'day)
the truths of MC can be overwhelming at first. stop take a few breathes it will get easier and less overwhelming
if you do a search on the word accupuncture within the forum, you will see numerous discussions there are quite a few that have used it (I am one of them)
and other natural therapies
the MC long story summarised to bullet points
- there is no magic pill, quick fix or short cut or guaranteed solution
- what works for one, may not work so well for another so you have to figure out what works best for you this applies to medications, foods, lifestyle, what time you eat etc
- treatments like accupuncture can not cure MC, but it can do alot of good to reduce inflammation, get your digestion system and organs functioning properly, increase energy
- stress is one of the known major triggers. A MC'er in remission can go into full blown flare due to a stressful event.
- only about 1 in 20ish have a good doctor or good GI. these people have gained success by 'Self Management' being; informed decisions using the wealth of knowledge on this forum, the support of these amazing generous people
- based on the few hundred people here, main triggers are things like Gluten, Dairy, Soy next level of triggers are things like eggs,
- depending on how inflammed your gut is, healing can take anything from a month to 3 months, to a year or more...
you dont have to be computer savy to benefit from this forum!
take your time reading etc, use the search function and if you need to ask questions, we dont mind if it has been asked 100 times before.....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks to all of you!!!
I have renewed my focus on my diet, started taking pepto along with the steroids (I hope this is ok), and am starting to work on the stress issue. Hopefully within a couple of months I can cut back on some hours at work as this is one of my major stressors. I think more than anything it helps to be able to talk about all these problems and issues with people who understand. I am pretty sure my husband and friends have heard more than they ever wanted to know about my digestion! It is just amazing to me that will all the people who seem to suffer with MC that there isn't more research being done. Thanks again everyone!
I have renewed my focus on my diet, started taking pepto along with the steroids (I hope this is ok), and am starting to work on the stress issue. Hopefully within a couple of months I can cut back on some hours at work as this is one of my major stressors. I think more than anything it helps to be able to talk about all these problems and issues with people who understand. I am pretty sure my husband and friends have heard more than they ever wanted to know about my digestion! It is just amazing to me that will all the people who seem to suffer with MC that there isn't more research being done. Thanks again everyone!