living with crohn's disease
By garfieldusa
@garfieldusa (11)
United States
March 8, 2007 11:15am CST
I was diagnosed with Crohn's disease about 9 years ago. You would think that I would have adjusted to it by now but it is so difficult. Even now my husband just does not get that I am sick even though I look fine on the outside. My family is the same way. They say things like "You look great, you must be feeling better." I am good at looking like I feel alright after all these years when inside I am in pain constantly and afraid to go anywhere because I can't enjoy myself. I feel lonely.
4 people like this
4 responses
@revdauphinee (5703)
• United States
8 Mar 07
I also suffer from this it is hard and people do not seem to want to understand just haw bad it is you have my sympathy friend!
@garfieldusa (11)
• United States
8 Mar 07
thanks for your response. It's always good to know that I am not the only one. But I am very sorry that you have to suffer with this disease. Are you married?
2 people like this
@RhodaK (177)
• United States
21 May 07
I am a 43 year old mother of 4. My 11 year old daughter was just diagnosed with Crohn's in late February of this year. She has been hospitalized 3 times, had and endoscopy and colonoscopy, the test with the tube that snakes into your small intestine, and countless blood workups. I do, kind of, know what you mean about feeling well. People will see her now after 3 months and comment on how good she looks and how they can tell she is getting better. She is in pain everyday and usually is running a low-grade fever. She has no energy and is weak and worn out 99.9% of the time, but they say she must be doing ok if she can participate at school. Even my husband's family is so in the dark about it it makes me sick. I am the one who is hearing and monitoring all her aches and pains. I had a nurse even tell me that adolesant girls have many reasons for stomach pains!!!!
@buenavida (9985)
• Sweden
22 May 07
I am not sure if this problem could be cured but it would at least not hurt to take Acidophilus Plus, it would help to keep the right bacteria in the small and large intestine and this would help to keep the immune system better.
You could see the links in my profile about health care - you will find the A+ capsules among the food supplements.
@kitty1234 (1476)
• United States
25 Jun 07
I was diagnosed 20 years ago, I know how you feel, I can only say after I had the surgury I have been in remission for at least 6 years. The constant pain and sick feeling has a way of bringing you down, but we have all learned we need to be strong because everyone thinks its some kind of imaginary illness. If you are still in a lot of pain you may need to have your medications adjusted. Good Luck and keep the faith!!!
@Angel3yes (455)
• United States
4 Jul 08
I know what you mean about feeling lonely because it seemed like when I was first diagnosed everyone was so supportive but now that I've had it for a few years and it's become routine, people just think that I should suck it up and deal with it because I look fine. My parents figure that since I've finally put the weight back on and don't seem to be so deathly ill, I should be better but it just doesn't work that way. My fiancee used to be so supportive but now it's kind of an "old story" to him that I guess he's sick of hearing about. It's like the only people that understand are the ones living with the disease and there seem to be so many but so few.
