I have had LC for a little over three years. For the most part my LC has been in remission for the past 7 or 8 months.
As incredible as it may seem (to some on this site) I did not have to give up gluten, soy or dairy in order to get to where I am now. Nor did I have to take steroids or prescription medication.
I think it is dishonest to give all new members the impression that they have to jump on the same band-wagon, in order to get control of their LC. There are too many doctors here without their MD's.
Apparently if you do not agree with some members on this forum, then your "assumptions".....isn't that how you put it JLH?.... are not welcomed here.
Also, I am sick and tired of constantly seeing the Gastroenterology field being demonized on this forum.
Yes, I know it can be depressing to have LC, but please stop attacking GI's because they can't offer you a cure. This constant berating of GI's has turned me off to this site.
For anyone new to this site, you are led to believe that there is ONLY one GI in the entire USA (or World) who knows anything about MC.
He gets free advertisement almost daily on here. I wonder why? I thought this site was to discuss LC and not physicians.
JLH, rather than "rude" I would prefer to use the words "narrow-minded". You really should talk with people who have LC; who respect their GI's expertise; and manage their illness without having to give up gluten, soy or dairy. There are quite a lot of us out there who fit this category. Sorry!
Issy
Too Many Doctors Here
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Too Many Doctors Here
IssyW123
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Issy thank you for your honest post, and I agree with you that we have to be careful in assuming that we all should fit into one category of treatment or another. Everyone is different and our bodies will require unique treatments that make sense for our biology and lifestyle(s).
If any of my posts regarding my first GI came across as demonizing I sincerely apologize, but I did not have a good experience with my first GI doctor, but did find another GI doctor in the area that is excellent and is treating this MC disease (and Crohns) with concern and the appropriate treatments.
My first GI was from India and well rather intelligent, did not think MC (LC or CC) was a legitimate condition and during appointments was rather rude. I am grateful that I did find a better individual that as a GI is working to better my health, using the hard work, dedication and training that he has committed himself to serving his fellow citizens.
I do not believe that any honest doctor deserves any form of general criticism, but I do understand that having a disease that we did not ask for and feel that we do not deserve, can make some people scared and somewhat reactionary. We should all remember that this does not give us right to put down the hard work and dedication of the doctors, nurses and support personnel in the medical field.
Issy thank you for reminding us of this fact. I for one feel fortunate that I have an excellent PCP and GI working to better my health and feel secure in the fact that they have dedicated their lives to working to the betterment of those that they can treat.
Over the past 20 years I have had the eye opening opportunity to travel extensively and have repeatably witnessed people who would give anything to have the care available that we take for granted. We complain about the decisions our doctors make and the availability and / or cost of medications; it may not be 'perfect' but at least we have theses services available to us.
I wish you the best Issy and hope that you will continue to contribute to this site
Thanks again Issy
--Joe
If any of my posts regarding my first GI came across as demonizing I sincerely apologize, but I did not have a good experience with my first GI doctor, but did find another GI doctor in the area that is excellent and is treating this MC disease (and Crohns) with concern and the appropriate treatments.
My first GI was from India and well rather intelligent, did not think MC (LC or CC) was a legitimate condition and during appointments was rather rude. I am grateful that I did find a better individual that as a GI is working to better my health, using the hard work, dedication and training that he has committed himself to serving his fellow citizens.
I do not believe that any honest doctor deserves any form of general criticism, but I do understand that having a disease that we did not ask for and feel that we do not deserve, can make some people scared and somewhat reactionary. We should all remember that this does not give us right to put down the hard work and dedication of the doctors, nurses and support personnel in the medical field.
Issy thank you for reminding us of this fact. I for one feel fortunate that I have an excellent PCP and GI working to better my health and feel secure in the fact that they have dedicated their lives to working to the betterment of those that they can treat.
Over the past 20 years I have had the eye opening opportunity to travel extensively and have repeatably witnessed people who would give anything to have the care available that we take for granted. We complain about the decisions our doctors make and the availability and / or cost of medications; it may not be 'perfect' but at least we have theses services available to us.
I wish you the best Issy and hope that you will continue to contribute to this site
Thanks again Issy
--Joe
Issy,
I haven't followed your threads . . .what exactly did you and your doctor do to get you into remission 8 months ago that did not involve drugs or diet?? As a dietitian I am at a loss to think what that could possibly be. Please share what you know so you can help others.
The vast majority of us KNOW we are gluten intolerant and beleive me, we don't like that. I have been on/off gluten, dairy and soy at various points in the last year and I know, despite what any doctor tells me, I am sensitive and I respond to restrictions. I have also never used medication. Dr. Fine, BTW, also acknowleges that not everyone with MC is gluten sensitive but
the vast majority are (around 2/3 I think is what he states).
I think people search for answers on the internet when they are at a loss for what else to do. If their doctor had the magic answer and symptoms disappeared (as in your case), they would not need to search for answers themselves. But OUR doctors did not provide answers and we found what works from people on this site. I am happy that you were able to find relief without making any changes, but that's simply not true for many of us . . . and we don't want to mislead people either. I have never felt anything but support and understanding on this site.
It's true many of us are frustrated with our doctors - in my case I don't blame my doctors for their lack of knowledge because I understand that MC and gluten intolerance aren't well understood at present (I didn't know about it wither until it happened to me). But I do fault them for being insensitive and arrogant. When I say I feel better off of gluten, and I am a trained nutrition professional, I expect them to respect and beleive me. In fact, I expect everyone to beleive me . . it's my body and no one knows it like I do.
Wishing you continued good health,
Mary Beth
I haven't followed your threads . . .what exactly did you and your doctor do to get you into remission 8 months ago that did not involve drugs or diet?? As a dietitian I am at a loss to think what that could possibly be. Please share what you know so you can help others.
The vast majority of us KNOW we are gluten intolerant and beleive me, we don't like that. I have been on/off gluten, dairy and soy at various points in the last year and I know, despite what any doctor tells me, I am sensitive and I respond to restrictions. I have also never used medication. Dr. Fine, BTW, also acknowleges that not everyone with MC is gluten sensitive but
the vast majority are (around 2/3 I think is what he states).
I think people search for answers on the internet when they are at a loss for what else to do. If their doctor had the magic answer and symptoms disappeared (as in your case), they would not need to search for answers themselves. But OUR doctors did not provide answers and we found what works from people on this site. I am happy that you were able to find relief without making any changes, but that's simply not true for many of us . . . and we don't want to mislead people either. I have never felt anything but support and understanding on this site.
It's true many of us are frustrated with our doctors - in my case I don't blame my doctors for their lack of knowledge because I understand that MC and gluten intolerance aren't well understood at present (I didn't know about it wither until it happened to me). But I do fault them for being insensitive and arrogant. When I say I feel better off of gluten, and I am a trained nutrition professional, I expect them to respect and beleive me. In fact, I expect everyone to beleive me . . it's my body and no one knows it like I do.
Wishing you continued good health,
Mary Beth
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
I will have to say that my current GI is quite aware of gluten sensitivities and is working directly with my insurance company to have the Enterolab testing covered. So far i am not sure if i am gluten sensitive, but I do know that I am sensitive to dairy products and onions; soy seems OK. I did have a celiac sprue test in February and that came back negative.
I am sure that the fact that we all respond differently makes this diagnosis and treatment more complicated
--Joe
I am sure that the fact that we all respond differently makes this diagnosis and treatment more complicated
--Joe
Hi Issy,
Well done for achieving remission without any meds or diet changes. Half your luck!! (or is that an Aussie saying?)
I had to drop dairy to resolve my LC, and the doctors at that point weren't much help (they were telling me to just eat yoghurt!). But later I visited and wrote about a cool GI.
Sadly, many of the people here stay because they have trouble resolving their problems. An awful lot of visitors here have tried the diet or meds and had success. So of course, a lot of the folk here haven't had good experiences with their docs.
So tell us, did your doc have some suggestions that worked for you? Can you share them so others can see if they work for them?
Lyn
Well done for achieving remission without any meds or diet changes. Half your luck!! (or is that an Aussie saying?)
I had to drop dairy to resolve my LC, and the doctors at that point weren't much help (they were telling me to just eat yoghurt!). But later I visited and wrote about a cool GI.
Sadly, many of the people here stay because they have trouble resolving their problems. An awful lot of visitors here have tried the diet or meds and had success. So of course, a lot of the folk here haven't had good experiences with their docs.
So tell us, did your doc have some suggestions that worked for you? Can you share them so others can see if they work for them?
Lyn
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Issy,
I am not sure how you achieved remission so please do explain.
I also do not feel that there are many doctors here other than Polly who is an MD and another member. We all have different ways of dealing with this disease and after 10 years of living with it - good and bad days - diet is the only method that has worked for me.
Not to take the negative road but, I have never met a GI in the 10 years I have had this disease that considers it something they know anything about and are just willing to dispense meds to whisk one away. I did have a good GI - for a while - who felt I had to research the disease since he knew little about it in his 18 years of practicing. I researched, felt better on diet and he turned it away like it was hogwash. His 14 asacol pills a day did nothing for me. Then on to Entocort that had very adverse side effects for me.
Many of us like I, have been tested and found to be intolerant to foods like gluten, dairy and soy with others and have taken the route to better health by giving them up. I feel very happy for you that you have not had to do this. You are a very lucky person.
I do hope you stay here with an open mind and realize that there are many paths to recovery and we do not press any of those on anyone.
Maggie
I am not sure how you achieved remission so please do explain.
I also do not feel that there are many doctors here other than Polly who is an MD and another member. We all have different ways of dealing with this disease and after 10 years of living with it - good and bad days - diet is the only method that has worked for me.
Not to take the negative road but, I have never met a GI in the 10 years I have had this disease that considers it something they know anything about and are just willing to dispense meds to whisk one away. I did have a good GI - for a while - who felt I had to research the disease since he knew little about it in his 18 years of practicing. I researched, felt better on diet and he turned it away like it was hogwash. His 14 asacol pills a day did nothing for me. Then on to Entocort that had very adverse side effects for me.
Many of us like I, have been tested and found to be intolerant to foods like gluten, dairy and soy with others and have taken the route to better health by giving them up. I feel very happy for you that you have not had to do this. You are a very lucky person.
I do hope you stay here with an open mind and realize that there are many paths to recovery and we do not press any of those on anyone.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hello Issy, I don't agree with your expression that there are "to many doctors here without a MD" here. I am 100% sure I know more about MC than my GI does. He only sees three patients a year with this disease (I asked him and this is what he told me). And it is not surprising I know more about this disease than him. He is an extremely busy man with lots of patients with lots of different disease. And MC, for him, is one of the more rare diseases. So I don't blame him at all, not knowing all the details, like I do know (thanks to this place). He did the exams he needed to do and prescribed the right medications. Also he admitted that according to other research there maybe a link between gluten and MC. And he was quite open to my approach to deal with MC (enterelab testing and diet). So we are not all negative about our GI here.
IMO, in general your health is both your doctor and your own concern. You can expect things from your doctor, the right exams of find out what the problem is, prescribing the right medication and give you some information about the disease. But you can't expect everything for a doctor. People also have a personal responsibility when it comes to their health. Thanks to internet it is quite easy to gather information on the disease you have. IMO, but this is personal point of view, it is even a patient's duty to find out more about the disease he or she is suffering from and than make together with your doctor a plan to recover of course with respect for each other expertise and knowledge.
Sometimes the messages here, how some talk or think about doctors, I don't always agree either it they come up with statements of medicine in general But if you are in the middle of a flare up and you have the idea nobody (read doctors) is listening to do or you have the feeling you don't get the right treatment, I would get upset and frustrated too. Before I was dx I wasn't active here on this board, but believe I wasn't so positive about the medical profession too than. I was ill, no idea what was wrong, was put on a waiting list and just see and wait. How could they do something like that??
Although you are doing great with no medication and diet, I (still relative new here) are extremely happy with the information on diet and enterolab testing. But yes we also must consider the possibility that some don't need a diet to achieve recovery.
IMO, in general your health is both your doctor and your own concern. You can expect things from your doctor, the right exams of find out what the problem is, prescribing the right medication and give you some information about the disease. But you can't expect everything for a doctor. People also have a personal responsibility when it comes to their health. Thanks to internet it is quite easy to gather information on the disease you have. IMO, but this is personal point of view, it is even a patient's duty to find out more about the disease he or she is suffering from and than make together with your doctor a plan to recover of course with respect for each other expertise and knowledge.
Sometimes the messages here, how some talk or think about doctors, I don't always agree either it they come up with statements of medicine in general But if you are in the middle of a flare up and you have the idea nobody (read doctors) is listening to do or you have the feeling you don't get the right treatment, I would get upset and frustrated too. Before I was dx I wasn't active here on this board, but believe I wasn't so positive about the medical profession too than. I was ill, no idea what was wrong, was put on a waiting list and just see and wait. How could they do something like that??
Although you are doing great with no medication and diet, I (still relative new here) are extremely happy with the information on diet and enterolab testing. But yes we also must consider the possibility that some don't need a diet to achieve recovery.
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RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Mary Beth, I think your post hit the nail on the head. We would not be here if our MC symptoms had been successfully treated by our GI doctor. In some cases that "fault' can be attributed to the doctor, for a number of reasons, but, maybe those of us who are here are the "difficult" ones. I have read that the pepto trial resolves 85% of patients with MC. And other treatments have resolved high percentages of the symptoms. None of these worked for me so I decided to find alternatives on the internet.
As we all can attest to, the longer this terrible disease persists the more desperate we become for solutions. The advice I received here enabled me to get my life back. I owe a huge debt to the members of this board. I was one of the lucky ones, using diet and Entocort worked for me. Others are not so fortunate and are still searching for answers.
I hope this thread does not discourage anyone from giving advice to our members. Your experience and opinions do help and are important. Most posts contain the words: most or usually or YMMV or some other words to that effect, so that we know that this is not the one and only path to travel toward remission.
It makes me sad when one of our members criticizes this board. We are all here to help. Thats it.
To everyone.... continued success on the road to remission!!!!
Hotrod
As we all can attest to, the longer this terrible disease persists the more desperate we become for solutions. The advice I received here enabled me to get my life back. I owe a huge debt to the members of this board. I was one of the lucky ones, using diet and Entocort worked for me. Others are not so fortunate and are still searching for answers.
I hope this thread does not discourage anyone from giving advice to our members. Your experience and opinions do help and are important. Most posts contain the words: most or usually or YMMV or some other words to that effect, so that we know that this is not the one and only path to travel toward remission.
It makes me sad when one of our members criticizes this board. We are all here to help. Thats it.
To everyone.... continued success on the road to remission!!!!
Hotrod
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Olivia-Micro-Colitis
- Adélie Penguin
- Posts: 119
- Joined: Fri Mar 26, 2010 8:51 pm
- Location: Fallbrook, Ca
wow
you know your post made me angry at first Issy then just sad... I have a BAD GI doc! Is it his fault yes and no. I'm in the military and i don't just get to pick a GI doc like most people. My Doc is never available, doesn't know much about MC and i'm the ONLY MC patient he HAS and HAS EVER treated. When you are in the hospital every week like me and your doc just shrugs his shoulders cause he doesn't know then come talk to me. I do respect your honestly so here's my honestly...you have to keep an open mind. good for you not having meds or special diets. Well aLOT of us do have to take meds and special diets. Because of MC i CANT have milk i'll start throwing up and having D. I have NOT responded to medications. I haven't been in Remission for 8 months. I think you are being a prude by saying you havent had to do anything and you are in remission then judge us for trying to find ways for us to get into remission. this board is to pass on things that have helped ourselves and if something helped you i see it as rude that you'd be apart of this board and not share when you criticize others. Everyone with MC is different. Some things like GF diets work for some and doesn't for others. So what! If they tell me to try it, hell i thought it was a good try to see if i could get into remission. And for your comments you are the narrow minded one. you can't even open your eyes and see that everyone isn't perfect like you. And you know what else i'm glad they "advertise" a good GI doc because when i get done serving MY country hopefully i can seek out a Good GI doc that will give me the time of Day! By the way LC and physicians do go hand in hand. This board is to discuss all aspects of MC including doctors. its sad, i feel sorry for you. you may be the one in remission but when your flare does come back i hope everyone else in this board is still willing to help you out after the things you've said. FYI i'm not gluten sensitive i'm not on a "special" diet and that doesn't work for me either neither does a GF diet, but to get into remission it was worth a shot. Speaking of shots, if you were a human pin cushion like some of us one here you'd be willing to try "other routes" to get into remission. And as for never taking meds or diets, which i doubt is true because you had to of done something that worked for you as you tell us you've been in remission i see you as a hypocrite. Something worked for you maybe the only way you did it was trial and error. As for getting mad at our GIs because they can't offer a cure is stupid. Those of us who are "angry" with our GIs could be for different reasons not bc they can't give us a cure. If anything you are categorizing people which is so stupid. You act as if you are so much better than everyone because you didn't need meds or diets. and I for one don't appreciate you trying to rub that in my face and you trying to look down on those who have CLEARLY helped many members on this board. So i hope you take your negativity elsewhere.
-Olivia
United States Marine Corps
-Olivia
United States Marine Corps