Hi All,
The direction of the conversation on another thread, (where GrannyH mentioned the fact that when one door closes, another opens, but the hallway in between can be hell), brought a few thoughts to mind, that I'd like to share.
When I first joined the previous board, and discovered what a great group of people posted there regularly, I was already in remission. So, naturally, I thought I knew what I was doing, and I tried to convince all the newbies that the method I had used to achieve remission, was the only way to go. To my surprise, many of them chose to use a corticosteroid, instead, and I simply couldn't understand that, when the diet was obviously so much safer. After a couple of years of observing, analyzing, and soul-searching, (and with some valuable coaching by Polly, Sally, and others), it finally dawned on me that MC is a very, very unique disease, for many reasons, not the least of which is it's life-altering potential.
When we say that we are all different, we really mean it, and the truth is, regardless of what kind of lifestyle we lead in our prior life, after MC, our life will never the same. Oh sure, we may be able to get our life back, so to speak, and we may enjoy remission from symptoms, but we will never again view life in the same way that we did before MC imposed it's Draconian control over us. In some ways, adjusting to life with this disease, and then achieving remission, is like having a near-death experience - it truly does change the way that we perceive, think about, and experience life. Before MC, I took life, and most of it's little pleasures and obligations, for granted. Now, everything seems to mean so much more, and every day is a precious gift - it's almost as if my senses have been fine-tuned, and my emotions have been amplified.
MC irreversibly changes the way that we think about, and plan for, our future, also. And because we are such a diversified group, from all walks of life, there is no way that we are going to have the same ambitions, and the same priorities, after MC. We all have to develop our own individual treatment program, that fits our "modified" lifestyle, and it has to incorporate the concepts that we consider to be the most important to us, individually. In the end, we can only be happy if we feel that we are in complete control of our life, and in order to accomplish that, we must feel that we are using the best options that are available to us, (based on our personal priorities).
Once that concept dawned on me, it was like an epiphany, and suddenly I completely understood why everyone has to tailor their treatment program to fit their own priorities and ambitions, (and not mine, or anyone else's). At one time, I simply couldn't bring myself to recommend Entocort, for example, because to me, it seemed like such an illogical choice. Now, though, it seems obvious that it is probably a reasonable choice for some, (depending on their personal circumstances), and I have no problem accepting that.
When we first began to set up this discussion board, I really wondered if it would be worth the effort. I wondered if there would even be enough people searching for help for MC, to provide enough traffic for the search engines to "index" the site high enough on a "hit" list, to allow anyone to even find us on the internet. As I expected, growth has been slow, over the years, but frankly, it has exceeded my expectations, and our rate of new registrations is currently accelerating, so we are growing faster than ever.
Silly me - when we first started, I really thought that after a few years, the GI docs of the world would have learned enough about MC to be able to effectively treat it, and there might no longer be any real need for a discussion board about living with, and controlling the disease. Apparently, I was wrong. They do seem to be diagnosing the disease much more efficiently, now, though, so hopefully, they will eventually learn how to treat it, as well. Also, many of them are at least becoming more open-minded about the disease, and they are willing to listen to their patients, and that is definitely a step in the right direction.
Since researching, and trying to discover new treatment methods for MC, still doesn't appear to be a high priority item among the mainstream medical community, though, we will probably have to continue to be our own researchers, and our own "guinea pigs", for many years to come. Unless an unexpected miracle breakthrough occurs, sharing experiences on discussion boards such as this, will probably continue to be the most effective way to learn how to deal with MC, and it's life-altering side effects. That's why feedback from each and every one of us, is so valuable.
Thanks for sharing.
Tex
When One Door Closes . . .
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
When One Door Closes . . .
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.
Tex,
I (and I'm sure everyone else here) would like to Thank You! for this site and all of your words of wisdom. It's not often that you can find so much emotional, witty and scientific support all in one forum. Life post-MC is definitely different and in some odd way I think my life is better for it. It has successfully beat the workaholic out of me and I do appreciate all the little things life has to offer now, like a nice spring afternoon. It has also introduced me to this forum which I now consider part of my extended family. Heck, I discuss things here I would never discuss with my own family - they just don't want those kind of details. Again, THANK YOU for all you've done and all you do!
Karen
I (and I'm sure everyone else here) would like to Thank You! for this site and all of your words of wisdom. It's not often that you can find so much emotional, witty and scientific support all in one forum. Life post-MC is definitely different and in some odd way I think my life is better for it. It has successfully beat the workaholic out of me and I do appreciate all the little things life has to offer now, like a nice spring afternoon. It has also introduced me to this forum which I now consider part of my extended family. Heck, I discuss things here I would never discuss with my own family - they just don't want those kind of details. Again, THANK YOU for all you've done and all you do!
Karen
Connie, Karen, and Joan,
I appreciate the thanks, and the kind words, but credit for what this site offers, should go to everyone who posts here, and especially to the founding members, who devoted a lot of hard work to helping to set this site up, initially. They, and everyone else who posts here, continue to add to the knowledge base, so we are all in this together, and we are all responsible for what it stands for, and what it offers.
I just felt the need to point out how drastically the disease alters our lives and our thought processes. Like you, Karen, I used to be a workaholic. Being self-employed, I averaged 15 to 16 hour days, every day of the week, except for taking off Sunday mornings - on Sundays, I started at 1 pm, instead of 5 am. My attitude completely changed, though, when it dawned on me that I was apparently going to be sick for quite a while, and as long as I was sick, such a schedule was totally out of the question. Reality trumped ambition, and the change has been permanent. I get the impression that Connie may still be a workaholic, though.
It's interesting how so many of us feel that the disease has been a positive influence on our lives, in certain ways. I know that in my case, I wouldn't trade the world for the privilege of "meeting" the wonderful people who come here to share experiences and thoughts. We truly are a family, because we share bonds that virtually no one in the general population can even understand, much less appreciate, unless they also have the disease, (or at least a similar disease, such as another IBD). MC sucks, but strangely, I feel lucky that it picked me, because without it, I would have completely missed a realm that has become a very important part of my life.
Tex
I appreciate the thanks, and the kind words, but credit for what this site offers, should go to everyone who posts here, and especially to the founding members, who devoted a lot of hard work to helping to set this site up, initially. They, and everyone else who posts here, continue to add to the knowledge base, so we are all in this together, and we are all responsible for what it stands for, and what it offers.
I just felt the need to point out how drastically the disease alters our lives and our thought processes. Like you, Karen, I used to be a workaholic. Being self-employed, I averaged 15 to 16 hour days, every day of the week, except for taking off Sunday mornings - on Sundays, I started at 1 pm, instead of 5 am. My attitude completely changed, though, when it dawned on me that I was apparently going to be sick for quite a while, and as long as I was sick, such a schedule was totally out of the question. Reality trumped ambition, and the change has been permanent. I get the impression that Connie may still be a workaholic, though.
It's interesting how so many of us feel that the disease has been a positive influence on our lives, in certain ways. I know that in my case, I wouldn't trade the world for the privilege of "meeting" the wonderful people who come here to share experiences and thoughts. We truly are a family, because we share bonds that virtually no one in the general population can even understand, much less appreciate, unless they also have the disease, (or at least a similar disease, such as another IBD). MC sucks, but strangely, I feel lucky that it picked me, because without it, I would have completely missed a realm that has become a very important part of my life.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex
i am a bit gobsmacked! (shock horror gabe is quiet!
your honesty and willingness to share your inner thoughts and emotions with us is treasured
"Thank you" is not enough for the time, emotional support that give to this family, and to me as an individual
i am a bit gobsmacked! (shock horror gabe is quiet!
your honesty and willingness to share your inner thoughts and emotions with us is treasured
And tex, you are not silly, (far far from it) like the frustration and confusion that we sufferers feel when a treatment doesnt work, it must be the same for the doctors. Any condition that can not be fixed by meds or a pill, and has so many variables specialists will avoid, as they dont like failure!Silly me - when we first started,
"Thank you" is not enough for the time, emotional support that give to this family, and to me as an individual
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
That was beautifully said Tex...thank you for sharing that...
You are truly an amazing human being to be so caring and to give a lot of your time to this board and its members...I hope we give you back as much as you give us... Your an angel in disguise...
Im so glad you all did continue with this forum because as i said before i would not be where i am today if it was not for this amazing family here....
I also feel that i could not discuss mc issues with any of my family members or friends because they dont have a clue....they only assume i cant eat gluten...but theres more to it than that
...You guys pick up on a lot of stuff even just by a simple sentence relating to mc...
I may be lazy on the board at times but i could never see myself disapperaing from this forum not ever...I have you tex...and the members to thank for giving me courage to get on that track to recovery...the knowlege you have and excellent advice enabled me to recover more than i could imagine...maybe not remission at least not yet......but hey!! im good and appreciate my life more than before...cos i did take some things in life for granted...
That is why this family is so special, because we all understand each other and yes we are all different but we can all relate in the same way. We are the true sufferers and only the sufferers can heal each other...especially on a spiritual and emotional level...No doc has ever made me feel good this way or helped me feel positive and hopeful...
i love you all...
You are truly an amazing human being to be so caring and to give a lot of your time to this board and its members...I hope we give you back as much as you give us... Your an angel in disguise...
Im so glad you all did continue with this forum because as i said before i would not be where i am today if it was not for this amazing family here....
I also feel that i could not discuss mc issues with any of my family members or friends because they dont have a clue....they only assume i cant eat gluten...but theres more to it than that
...You guys pick up on a lot of stuff even just by a simple sentence relating to mc...I may be lazy on the board at times but i could never see myself disapperaing from this forum not ever...I have you tex...and the members to thank for giving me courage to get on that track to recovery...the knowlege you have and excellent advice enabled me to recover more than i could imagine...maybe not remission at least not yet......but hey!! im good and appreciate my life more than before...cos i did take some things in life for granted...
That is why this family is so special, because we all understand each other and yes we are all different but we can all relate in the same way. We are the true sufferers and only the sufferers can heal each other...especially on a spiritual and emotional level...No doc has ever made me feel good this way or helped me feel positive and hopeful...
i love you all...
Angy ;)
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Tex, well put and well thought out. I have to agree with the diversity part of your discussion. Being a researcher / engineer, I tend to look at things in a black white fashion; others have the ability to see the shades of gray and that has its advantages.
In my case i viewed this as a problem that needed to managed with data and research - forgetting that I am human and will need to respond emotionally to the changes in my life (more on that later). For me I saw that I was in a critical condition, losing weight, unable to eat and unable to work; that necessitated the need for steroids (Entocort). I do intend to look at diet, but I only wanted to make one change at a time in an effort to better understand this disease and learn what each change means to my body.
Tex I have thoroughly enjoyed and learned quite a bit from reading your posts. Your insight and medical knowledge is quite impressive. At this point I am reading through the multiple posts here and reading various books on the subject of diets related to celiac and, Crohns and MC (CC & LC).
I would again like to a moment to thank all on this site for your kind and generous responses. This has been a bit of a frightening week and your support has made in bearable.
--Joe
In my case i viewed this as a problem that needed to managed with data and research - forgetting that I am human and will need to respond emotionally to the changes in my life (more on that later). For me I saw that I was in a critical condition, losing weight, unable to eat and unable to work; that necessitated the need for steroids (Entocort). I do intend to look at diet, but I only wanted to make one change at a time in an effort to better understand this disease and learn what each change means to my body.
Tex I have thoroughly enjoyed and learned quite a bit from reading your posts. Your insight and medical knowledge is quite impressive. At this point I am reading through the multiple posts here and reading various books on the subject of diets related to celiac and, Crohns and MC (CC & LC).
I would again like to a moment to thank all on this site for your kind and generous responses. This has been a bit of a frightening week and your support has made in bearable.
--Joe
Thank you so much, Tex, for everything you do for us!
I probably wouldn't be alive today if it weren't for this site. I tried things suggested on this site that although didn't come near to giving me back a normal life.. kept me going until entocort came back on the market in the US.
Before this site my life was one round after another of rehydration at the emergency room.. it was exhausting, depressing and no one ... including me... knew what was wrong with me. Even after my diagnosis was made.. there was no medication other than prednisone.. which i refused to take.. to give me any relief.. had done lomotil for a year and slept most of the time I wasn't in the john:)
If there were words more profound than Thank You.. to describe this site.. and your dedication ... I would use them...
grannyh
I probably wouldn't be alive today if it weren't for this site. I tried things suggested on this site that although didn't come near to giving me back a normal life.. kept me going until entocort came back on the market in the US.
Before this site my life was one round after another of rehydration at the emergency room.. it was exhausting, depressing and no one ... including me... knew what was wrong with me. Even after my diagnosis was made.. there was no medication other than prednisone.. which i refused to take.. to give me any relief.. had done lomotil for a year and slept most of the time I wasn't in the john:)
If there were words more profound than Thank You.. to describe this site.. and your dedication ... I would use them...
grannyh
Tex, I want to add my thanks and admiration to all those expressed. What a beautiful, eloquent, compassionate post. I can't describe what a horrifying year 2008 was for me as I lost all sense of wellness and spiraled down into a hell that overtook my life. Going from one doctor to another and getting put on drug after drug that only made me worse. My salvation was finding this board and a new pcp who really cares about my quality of life. Everyone who posts on this board, but especially you have literally saved me and given me the guidance and direction to find my way. I have no doubt that I would be on disability and have no life if I had not found you and this board. I hope as my journey continues I can give back my small contribution here. I often wonder how many people are suffering with mc and don't know they have it, or where to turn. I am so grateful that when I finally discovered the main cause of my problems that you all were here. No one would have ever told me to avoid gluten and to pursue other intolerances. I can't imagine how sick I would be now. Grannyh said you deserve some sort of Nobel prize and I agree 100%. Thank you for your patience, knowledge, support, humor, and constant optimism that you so generously share.
Love JoAnn
Love JoAnn
Well, after reading all these posts, there is not much more to add. I think each and every one of these lovely people have said it more eloquently than I could...... 
I feel so fortunate to have found this site. I actually found this site years ago, but as I was in school and then started working, I didn't have time to search the board and look for help. I never forgot about it though. When I finally came to the point that enough was enough, and my PA suggested that I get back in to see a GI, I decided that it was time that I took control instead of letting MC take control of me. I searched for this site again and here I am.
I am so grateful to all of you for sharing your struggles and triumphs with MC. It is a great feeling to know that you are not alone, and have others to go to who understand what your are going through and are there for you any time you need boost.
I have learned so much from each of you, and hope I can give back in some way.
Til next time!
Rome
I feel so fortunate to have found this site. I actually found this site years ago, but as I was in school and then started working, I didn't have time to search the board and look for help. I never forgot about it though. When I finally came to the point that enough was enough, and my PA suggested that I get back in to see a GI, I decided that it was time that I took control instead of letting MC take control of me. I searched for this site again and here I am.
I am so grateful to all of you for sharing your struggles and triumphs with MC. It is a great feeling to know that you are not alone, and have others to go to who understand what your are going through and are there for you any time you need boost.
I have learned so much from each of you, and hope I can give back in some way.
Til next time!
Rome
I can do ALL THINGS through Christ who strengthens me!!!!
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Tex,
You insight, compassion, knowledge and understanding make you truly one of life's greatest pleasures for me and I am sure most of us here. What you wrote really hit home for me and I realize that this disease has slowed me down too and that it really is a modified life style we lead. Only we really understand the little things that can make life so much better for us now. You insight in so many areas is appreciated by us and as you know some of those close to us for your ideas how to make life better.
From one of the very old timers, your friendship and being part of my family is so very much appreciated.
Love, Maggie
You insight, compassion, knowledge and understanding make you truly one of life's greatest pleasures for me and I am sure most of us here. What you wrote really hit home for me and I realize that this disease has slowed me down too and that it really is a modified life style we lead. Only we really understand the little things that can make life so much better for us now. You insight in so many areas is appreciated by us and as you know some of those close to us for your ideas how to make life better.
From one of the very old timers, your friendship and being part of my family is so very much appreciated.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
what else could I add to all that has been said---- 
----your wisdom---your time devoted to all that are in need------and a FAMILY that listens and knows there is a light at the end of the tunnel~~~
And where would I be without GALAHAD!!!!!
Columbo~~~~~~
----your wisdom---your time devoted to all that are in need------and a FAMILY that listens and knows there is a light at the end of the tunnel~~~And where would I be without GALAHAD!!!!!
Columbo~~~~~~
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control