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We all have a story living with a chronic illness or having someone you care about with a disease. How has the illness effected your life? How do you cope with your symptoms, difficult docs, being misunderstood, not being able to work?
Your words matter!
We all have a story living with a chronic illness or having someone you care about with a disease. How has the illness effected your life? How do you cope with your symptoms, difficult docs, being misunderstood, not being able to work?
Your words matter!
Your Digestive Disease - Support and Understanding.... do they care?
everydayizagift posted:
When it comes down to Chronic Diseases, Crohn's Colitis and all those intestinal diseases (FYI: there are many chronic illnesses that are not limited to digestive disorders) that the doctors say there is no cure and the exact cause of the disease is unknown. Haha It figures we would be the lucky ones to get the mystery disease - Clueless cause and no cure..Great!
I do want to say that despite the disadvantages of these diseases, I am grateful and thankful for everyday. Know that someone out there has it worse than you.I try to always stay positive
WONDERING..????
I am curious to know what support you get, if any, from your family and friends. Where do you find comfort when you're in need?
Some people have super supportive and compassionate family and friends that listen, they educate themselves to understand their loved one better, and they give encouragement when times are tough.
If you are one of those people that do have support as I just mentioned, you are BLESSED! knowing that someone cares enough to ask you questions about the disease and how it effects your daily life is awesome. Having a friend research the disease in order to get a glimpse into your life and to become knowledgeable about what you will be experiencing, is a true gift and you are cared for. There are loads of ways to show someone you are interested, care and will be there. Just the simplicity of having a friend listen when you have a need to vent can bring healing without even realizing.
Any form of support is special.
My story - I have been sick on and off since 08' trying to get my Crohn's under control. At present, my family doesn't understand me and they have their own conclusions about me, my disease and how I live my life. They can't grasp why I'm not better and think that I should be by now. Sadly, my family doesn't make an effort to learn more about Crohn's. When I try to explain something to them that they don't have correct, either about the disease or my life (I have had to make modifications here and there for health purposes) It is like my words
go in 1 ear and out the other. It's very disappointing and leaves me feeling unloved and rejected.
I could write many things about the lack of support from family & friends, but why ponder on it? It will not help me or you to relive the terrible comments and beliefs that these people believe to be true; very false they are. I must let it go.
Do you feel misunderstood, disregarded & not supported by the ones you love?
***Here's my suggestions that I found effective for me and worth sharing with you***
*Accept that some people just will not understand your illness; they do not live your life. Even if people try to put themselves in your shoes, its impossible to grasp the reality of wearing your shoes 24/7.
*Don't give up on people that refuse to understand you or have no interest in educating themselves. Some people struggle with coping and accepting painful situations. Knowing more may be too traumatic at that time. Shutting off or out is a defense mechanism. Give them small amounts and go with your intuition. You will know if they simply just don't care. This is painful, try to accept and limit what you tell this individual in the future.
* Accept support from the people that care and share similar challenges in life. These people will grasp and appreciate you the most because they too are going through a comparable situation. It's refreshing to know you are not alone. You'll learn things from each other!
* Refer people to a good educational source. CCFA.org - Community Forums should be humbling. For some, reading what another person wrote that was similar in context to your situation, brings validity to the reader who was doubtful or skeptical.
*Join forums and community support groups.. like this one. Thank God for the internet. The abundance of info/support/knowledge is at our finger tips. Take advantage
POST YOUR STORY AND SUPPORT SUGGESTIONS THAT WORK FOR YOU! LOVE TO READ THEM!!
I do want to say that despite the disadvantages of these diseases, I am grateful and thankful for everyday. Know that someone out there has it worse than you.I try to always stay positive
WONDERING..????
I am curious to know what support you get, if any, from your family and friends. Where do you find comfort when you're in need?
Some people have super supportive and compassionate family and friends that listen, they educate themselves to understand their loved one better, and they give encouragement when times are tough.
If you are one of those people that do have support as I just mentioned, you are BLESSED! knowing that someone cares enough to ask you questions about the disease and how it effects your daily life is awesome. Having a friend research the disease in order to get a glimpse into your life and to become knowledgeable about what you will be experiencing, is a true gift and you are cared for. There are loads of ways to show someone you are interested, care and will be there. Just the simplicity of having a friend listen when you have a need to vent can bring healing without even realizing.
Any form of support is special.
My story - I have been sick on and off since 08' trying to get my Crohn's under control. At present, my family doesn't understand me and they have their own conclusions about me, my disease and how I live my life. They can't grasp why I'm not better and think that I should be by now. Sadly, my family doesn't make an effort to learn more about Crohn's. When I try to explain something to them that they don't have correct, either about the disease or my life (I have had to make modifications here and there for health purposes) It is like my words
go in 1 ear and out the other. It's very disappointing and leaves me feeling unloved and rejected.
I could write many things about the lack of support from family & friends, but why ponder on it? It will not help me or you to relive the terrible comments and beliefs that these people believe to be true; very false they are. I must let it go.
Do you feel misunderstood, disregarded & not supported by the ones you love?
***Here's my suggestions that I found effective for me and worth sharing with you***
*Accept that some people just will not understand your illness; they do not live your life. Even if people try to put themselves in your shoes, its impossible to grasp the reality of wearing your shoes 24/7.
*Don't give up on people that refuse to understand you or have no interest in educating themselves. Some people struggle with coping and accepting painful situations. Knowing more may be too traumatic at that time. Shutting off or out is a defense mechanism. Give them small amounts and go with your intuition. You will know if they simply just don't care. This is painful, try to accept and limit what you tell this individual in the future.
* Accept support from the people that care and share similar challenges in life. These people will grasp and appreciate you the most because they too are going through a comparable situation. It's refreshing to know you are not alone. You'll learn things from each other!
* Refer people to a good educational source. CCFA.org - Community Forums should be humbling. For some, reading what another person wrote that was similar in context to your situation, brings validity to the reader who was doubtful or skeptical.
*Join forums and community support groups.. like this one. Thank God for the internet. The abundance of info/support/knowledge is at our finger tips. Take advantage
POST YOUR STORY AND SUPPORT SUGGESTIONS THAT WORK FOR YOU! LOVE TO READ THEM!!
4 Replies |Watch This Discussion | Report This| Share this:Your Digestive Disease - Support and Understanding.... do they care?When it comes down to Chronic Diseases, Crohn's Colitis and all those intestinal diseases (FYI: there are many chronic illnesses that are not limited to digestive disorders) that the doctors say there is no cure and the exact cause of the disease is unknown. Haha It figures we would be the lucky ones to get the mystery disease - Clueless cause and no cure..Great! <br />I do want to say that despite the disadvantages of these diseases, I am grateful and thankful for everyday. Know that someone out there has it worse than you.I try to always stay positive <br /><b><br /></b><br /><b>WONDERING..????</b><br />I am curious to know what support you get, if any, from your family and friends. Where do you find comfort when you're in need? <br /><br />Some people have super supportive and compassionate family and friends that listen, they educate themselves to understand their loved one better, and they give encouragement when times are tough.<br />If you are one of those people that do have support as I just mentioned, you are BLESSED! knowing that someone cares enough to ask you questions about the disease and how it effects your daily life is awesome. Having a friend research the disease in order to get a glimpse into your life and to become knowledgeable about what you will be experiencing, is a true gift and you are cared for. There are loads of ways to show someone you are interested, care and will be there. Just the simplicity of having a friend listen when you have a need to vent can bring healing without even realizing. <br /><br /><i><b>Any form of support is special.</b></i> <br /><br />My story - I have been sick on and off since 08' trying to get my Crohn's under control. At present, my family doesn't understand me and they have their own conclusions about me, my disease and how I live my life. They can't grasp why I'm not better and think that I should be by now. Sadly, my family doesn't make an effort to learn more about Crohn's. When I try to explain something to them that they don't have correct, either about the disease or my life (I have had to make modifications here and there for health purposes) It is like my words<br />go in 1 ear and out the other. It's very disappointing and leaves me feeling unloved and rejected. <br /><br />I could write many things about the lack of support from family & friends, but why ponder on it? It will not help me or you to relive the terrible comments and beliefs that these people believe to be true; very false they are. I must let it go.<br /><br /><b>Do you feel misunderstood, disregarded & not supported by the ones you love? </b> <i> </i><br /><i><b>***Here's my suggestions that I found effective for me and worth sharing with you***</b></i><br /><br />*Accept that some people just will not understand your illness; they do not live your life. Even if people try to put themselves in your shoes, its impossible to grasp the reality of wearing your shoes 24/7.<br /><br />*Don't give up on people that refuse to understand you or have no interest in educating themselves. Some people struggle with coping and accepting painful situations. Knowing more may be too traumatic at that time. Shutting off or out is a defense mechanism. Give them small amounts and go with your intuition. You will know if they simply just don't care. This is painful, try to accept and limit what you tell this individual in the future.<br /><br />* Accept support from the people that care and share similar challenges in life. These people will grasp and appreciate you the most because they too are going through a comparable situation. It's refreshing to know you are not alone. You'll learn things from each other!<br /><br />* Refer people to a good educational source. CCFA.org - Community Forums should be humbling. For some, reading what another person wrote that was similar in context to your situation, brings validity to the reader who was doubtful or skeptical. <br /><br />*Join forums and community support groups.. like this one. Thank God for the internet. The abundance of info/support/knowledge is at our finger tips. Take advantage<br /> <br /><u><b>POST YOUR STORY AND SUPPORT SUGGESTIONS THAT WORK FOR YOU! LOVE TO READ THEM!!</b></u>
Magsjeanea responded:
Hi,
Just wanted to let you know that someone is reading your discussions. I am very lucky to have a hubby and children who understand what I have been going through. My daughter is a nurse, I am a medically retired nurse, so she had full understanding. What is nice is that most people who find out I have Crohn's always have a story to tell about how they know someone, adult or teenager, who has this dreadful disease. I count myself as very lucky. I always had some kind of gastro problems most of my life but my colonoscopies always came back normal or showed a redundant colon with just one or two enlarged diverticuli. Then 18 months after a normal scope I started the most unbelievable flare and 6months later diagnosed with Crohn's, Erosive Esophagitis, Hiatal Hernia, Gastric Ulcer and 4 lesions in my colon. WOW, TALK ABOUT FEELING LIKE I WAS SHOT! I had been having problems with diarrhea for several years and couldn't be too far from the bathroom. Since I was little always had what they called a "nervous stomach". I was finally, thank God, in remission 6 months after diagnosis. Now I find it difficult to tell other people I am in remission knowing that they are in flare. I was told that I wasn't in touch with anyone cause I was in remission. Ain't that somethin'. I still have to take all the meds, I get worried if I have a bout of diarrhea or get a pain in my abdomen! I still have to go to the doctor every 4 months and also plan where the bathrooms are if I make a trip.
Sorry to be rambling. My only purpose of writing was to let you know someone was listening. Hope all goes well with you.
Just wanted to let you know that someone is reading your discussions. I am very lucky to have a hubby and children who understand what I have been going through. My daughter is a nurse, I am a medically retired nurse, so she had full understanding. What is nice is that most people who find out I have Crohn's always have a story to tell about how they know someone, adult or teenager, who has this dreadful disease. I count myself as very lucky. I always had some kind of gastro problems most of my life but my colonoscopies always came back normal or showed a redundant colon with just one or two enlarged diverticuli. Then 18 months after a normal scope I started the most unbelievable flare and 6months later diagnosed with Crohn's, Erosive Esophagitis, Hiatal Hernia, Gastric Ulcer and 4 lesions in my colon. WOW, TALK ABOUT FEELING LIKE I WAS SHOT! I had been having problems with diarrhea for several years and couldn't be too far from the bathroom. Since I was little always had what they called a "nervous stomach". I was finally, thank God, in remission 6 months after diagnosis. Now I find it difficult to tell other people I am in remission knowing that they are in flare. I was told that I wasn't in touch with anyone cause I was in remission. Ain't that somethin'. I still have to take all the meds, I get worried if I have a bout of diarrhea or get a pain in my abdomen! I still have to go to the doctor every 4 months and also plan where the bathrooms are if I make a trip.
Sorry to be rambling. My only purpose of writing was to let you know someone was listening. Hope all goes well with you.
Report This| Share this:Your Digestive Disease - Support and Understanding.... do they care?Hi, <br />Just wanted to let you know that someone is reading your discussions. I am very lucky to have a hubby and children who understand what I have been going through. My daughter is a nurse, I am a medically retired nurse, so she had full understanding. What is nice is that most people who find out I have Crohn's always have a story to tell about how they know someone, adult or teenager, who has this dreadful disease. I count myself as very lucky. I always had some kind of gastro problems most of my life but my colonoscopies always came back normal or showed a redundant colon with just one or two enlarged diverticuli. Then 18 months after a normal scope I started the most unbelievable flare and 6months later diagnosed with Crohn's, Erosive Esophagitis, Hiatal Hernia, Gastric Ulcer and 4 lesions in my colon. WOW, TALK ABOUT FEELING LIKE I WAS SHOT! I had been having problems with diarrhea for several years and couldn't be too far from the bathroom. Since I was little always had what they called a "nervous stomach". I was finally, thank God, in remission 6 months after diagnosis. Now I find it difficult to tell other people I am in remission knowing that they are in flare. I was told that I wasn't in touch with anyone cause I was in remission. Ain't that somethin'. I still have to take all the meds, I get worried if I have a bout of diarrhea or get a pain in my abdomen! I still have to go to the doctor every 4 months and also plan where the bathrooms are if I make a trip. <br />Sorry to be rambling. My only purpose of writing was to let you know someone was listening. Hope all goes well with you.
everydayizagift replied to Magsjeanea's response:
Thank you Magsjeanea for writing to let me know that.
I appreciate you and your mindfulness
Are you prescribed anything for your diarrhea? For a lot of people with Crohn's, having the runs and frequent visits to the bathroom is one of the symptoms that about 90% of the people with this disease suffer with. There are meds to help. I take Lomotil and it slows down my gut, so I'm able to have a life and leave my house. I just wanted to let you know that incase you didn't know.
I appreciate you and your mindfulness
Are you prescribed anything for your diarrhea? For a lot of people with Crohn's, having the runs and frequent visits to the bathroom is one of the symptoms that about 90% of the people with this disease suffer with. There are meds to help. I take Lomotil and it slows down my gut, so I'm able to have a life and leave my house. I just wanted to let you know that incase you didn't know.
Report This| Share this:Your Digestive Disease - Support and Understanding.... do they care?Thank you Magsjeanea for writing to let me know that. <br /><br />I appreciate you and your mindfulness <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"><br /><br />Are you prescribed anything for your diarrhea? For a lot of people with Crohn's, having the runs and frequent visits to the bathroom is one of the symptoms that about 90% of the people with this disease suffer with. There are meds to help. I take Lomotil and it slows down my gut, so I'm able to have a life and leave my house. I just wanted to let you know that incase you didn't know.
Magsjeanea replied to everydayizagift's response:
I am one of the lucky ones, I have been in remission for the past 3 years. The one thing that I do have is constipation instead of diarrhea. That is not quite as bad but can still be very painful. I still have not gained my weight back since the flare because I feel so full all of the time I don't eat the way I used to. It is sometimes hard to tell someone I am in remission because they then think I am cured. They just don't understand. Maybe one day more people will be more educated, google is definately making a big difference. Hope all goes well with you.
Love Goes There,
Mag's Jeaneau
Report This| Share this:Your Digestive Disease - Support and Understanding.... do they care?I am one of the lucky ones, I have been in remission for the past 3 years. The one thing that I do have is constipation instead of diarrhea. That is not quite as bad but can still be very painful. I still have not gained my weight back since the flare because I feel so full all of the time I don't eat the way I used to. It is sometimes hard to tell someone I am in remission because they then think I am cured. They just don't understand. Maybe one day more people will be more educated, google is definately making a big difference. Hope all goes well with you.
everydayizagift replied to Magsjeanea's response:
Hope you are still feeling well!!! That is truly wonderful that you've been in remission for 3 years. Praise God! Whatever you are doing, keep doing it because it's working for you.
Yes, there must be more awareness and education about IBD and IBS... actually, more awareness about all chronic illnesses. People have a very difficult time wrapping their brains around these types of diseases.
Take care & be well
Check out my Community - That Girl's Support Lounge - Intestinal Disorders and Diseases The WebMD? Community
Yes, there must be more awareness and education about IBD and IBS... actually, more awareness about all chronic illnesses. People have a very difficult time wrapping their brains around these types of diseases.
Take care & be well
Check out my Community - That Girl's Support Lounge - Intestinal Disorders and Diseases The WebMD? Community
Report This| Share this:Your Digestive Disease - Support and Understanding.... do they care?Hope you are still feeling well!!! That is truly wonderful that you've been in remission for 3 years. Praise God! Whatever you are doing, keep doing it because it's working for you. <br /><br />Yes, there must be more awareness and education about IBD and IBS... actually, more awareness about all chronic illnesses. People have a very difficult time wrapping their brains around these types of diseases. <br /><br />Take care & be well <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
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