I have had this problem for a long time. 7 years at least.I thought that it went away a year ago when I found out I had a fibroid tumor the size of a football in my uterus.which had been there for a long time and had surgery to remove all of my female parts plus appendectomy and opemdectomy and it went away for a while.I thought that was just that but it wasnt it came back with a vehgeance and brutal.3 days in the bathroom cramps so bad I cant stand up and everyone thinks I am faking it.How can I function when I have diarrhea 8 to 10 times a day. I cant sleep because it seems to be worse at nite.I feel feverish when the flare ups come sometimes 3 to 5 days in a row.everyone wants to know why I wont leave the house.How do you make people understand when you are too embarassed to talk about it? I need some help from someone that knows its an auto immune disease that I cant control?Please help this sucks
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I found out i have crohns disease
- Thread starter kathleen.dumas
- Start date
Hello. I am sorry to hear what you are going through 
I understand that you wee diagnosed with Crohns ? Are you getting any treatment for it ?
It sounds you are flaring badly
Maybe if you provide some more details the community here will be able to guide you better.
Anyway:
1. The MOST important thing is that you feel better. Everything else is negligible now.
2. People say what people say. I know it can hurt, but I learned that it's just the way it goes. People I am the most confortable with are those who get that there are many situations in life, and that if you are home it means something.
I hope you have some relief soon. Keep us updated.
I understand that you wee diagnosed with Crohns ? Are you getting any treatment for it ?
It sounds you are flaring badly
Maybe if you provide some more details the community here will be able to guide you better.
Anyway:
1. The MOST important thing is that you feel better. Everything else is negligible now.
2. People say what people say. I know it can hurt, but I learned that it's just the way it goes. People I am the most confortable with are those who get that there are many situations in life, and that if you are home it means something.
I hope you have some relief soon. Keep us updated.
Kathleen.dumas
Welcome to the forum While I am sorry you have been feeling so poorly, I am glad that you have finally gotten a diagnosis and hopefully have started some medication. It takes a while to get working and heal but meds can make you feel like a normal person again.
My son has crohn's and I am often astounded at how uncaring and unsympathetic people can be. They truly don't understand how difficult this disease is and that even if you are feeling well, the meds/appointments and tests carry a heavy burden. I at first talked/cried to everyone about my son's disease. The responses I got made me wish I had never told anyone. So when we moved about a year later I was in a better place and wasn't so emotional and decided not to tell anyone about his condition. There are a few friends I have shared details with and they pray for him and listen to me when I am worried, and of course the school nurse and counselor know. But I pretty much don't expect people to understand. I have learned to deal with it by getting support from a few people who really understand. There are lots of people out there who have dealt with similar issues and have compassion, you just need to seek them out.
When I need to explain my son's health to someone who I know won't understand I simply say, "My son is on a chemotherapy medication which lowers his immune system and often his illness makes him feel sick. Sometimes he just isn't feeling up to doing normal things." If they ask if he has cancer, I tell them "no, he has an auto-immune disorder" and leave it at that. For some reason people hear "chemotherapy medication" and they sort of respect the seriousness of the illness. And everyone knows chemo drugs can make you sick. He isn't sick from his meds, but for people who aren't really interested and aren't going to take the time to understand and care, I don't really feel a need to get into the whole thing.
I have also found, and this is after almost 3 years of dealing with this, that for my own sanity (and his) I can't be constantly talking and worrying about his crohn's. He will have this disease for the rest of his life and at some point I just have to deal with it. I don't mean that to sound harsh, it was truly something that was an issue I felt I needed to work thru. It may not be an issue for you at all. It is easier to let go when people you care about acknowledge your having a hard time and sympathize.
worriedboy is right, you will find some deeper more meaningful friendships as a result.
Hope you are feeling well soon
Welcome to the forum
While I am sorry you have been feeling so poorly, I am glad that you have finally gotten a diagnosis and hopefully have started some medication. It takes a while to get working and heal but meds can make you feel like a normal person again.My son has crohn's and I am often astounded at how uncaring and unsympathetic people can be. They truly don't understand how difficult this disease is and that even if you are feeling well, the meds/appointments and tests carry a heavy burden. I at first talked/cried to everyone about my son's disease. The responses I got made me wish I had never told anyone. So when we moved about a year later I was in a better place and wasn't so emotional and decided not to tell anyone about his condition. There are a few friends I have shared details with and they pray for him and listen to me when I am worried, and of course the school nurse and counselor know. But I pretty much don't expect people to understand. I have learned to deal with it by getting support from a few people who really understand. There are lots of people out there who have dealt with similar issues and have compassion, you just need to seek them out.
When I need to explain my son's health to someone who I know won't understand I simply say, "My son is on a chemotherapy medication which lowers his immune system and often his illness makes him feel sick. Sometimes he just isn't feeling up to doing normal things." If they ask if he has cancer, I tell them "no, he has an auto-immune disorder" and leave it at that. For some reason people hear "chemotherapy medication" and they sort of respect the seriousness of the illness. And everyone knows chemo drugs can make you sick. He isn't sick from his meds, but for people who aren't really interested and aren't going to take the time to understand and care, I don't really feel a need to get into the whole thing.
I have also found, and this is after almost 3 years of dealing with this, that for my own sanity (and his) I can't be constantly talking and worrying about his crohn's. He will have this disease for the rest of his life and at some point I just have to deal with it. I don't mean that to sound harsh, it was truly something that was an issue I felt I needed to work thru. It may not be an issue for you at all. It is easier to let go when people you care about acknowledge your having a hard time and sympathize.
worriedboy is right, you will find some deeper more meaningful friendships as a result.
Hope you are feeling well soon
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