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Crohn's is my enemy

crohn's is my enemy

I have had crohn's for 3 years now and it has completely taken over my life. I know people say "you have crohn's, crohn's doesn't have you" but in my case and probably a lot of you's it just doesn't feel that way at all. I have tried everything to live as normal as i could...taking my meds, going to doctor appointments and when i thought everything was going great, I ended up in the hospital again for 2 days. The doctor let me go home as an out-patient but now i have to go for surgery in 2 weeks. I had the disease near my appendix but it turns out that i have it in three other places as well and have 2 fistulas that are so painful I don't bother doing anything all day. I miss my friends and being with my children all the time. I have friend's who don't understand at all and tell me i'm faking all the time. I guess people can't really understand because they can't see it but it's still pretty annoying. Thank God For my awesome and supportive husband who has been there for me since the beginning. Well thanks for letting me vent...i love this forum because i know that everyone on here will understand and for the first time i feel like i'm not talking to the wall..or won't have people telling me to quit feeling sorry for myself Thanks


Hiya Linder
and welcome

Yes we can all relate to that!
But I hope you find comfort here with us, we'll look after you!
And remember always, you don't have to justify yourself to anyone, it's their problem not yours.
lotsa luv
Joan xxx


Your Story Forum Monitor
Hi Linder and welcome! Yes, it is certainly difficult to be positive when you are feeling so ill. I hear ya. But try to think of the good things in your life such as your husband and children. Also, try to think positive about your upcoming surgery - perhaps it will give you years of remission like many others. Hang in there!


Naples, Florida
Hi Linder and welcome. I'm so glad you found your way to our community AND that you have a supportive husband, that is fantastic! I wish you all the best in your surgery. You may also want to check out our surgery support forum which may be of some assistance.

Take care~

Hi Linder, I have also had crohns for 3years and like you I feel it has taken over my life, I seem to do very little these days as I always feel so sick and worn out. Also, friends etc tell me I look well and I think don't quite believe how bad I feel but I do look OK on the outside. Glad you have a supportive husband. Currently taking pred and 6MP. Shirleyb
HI Shirley......Your comment " friends tell me I look well".....my sister in law said the same thing to me on several occasions lately. Frustrating isn't it? I certainly don't go around chatting about my illness, as a matter of fact I don't even mention it unless I'm asked, but I am getting a bit more tired and the blood thingy happens a bit more often. But DANG, I look good!!! LOL
Judith is right, you kind of have to laugh at them for saying something so stupid or insensitive. Of course, I have done the same to others - "What's wrong?? You look awful today!" that doesn't go over to well either.

Crohn's is taking over my life again right now, too. Sometimes you just have to give in to it and fight the good fight. There will be other times when you can grin and bear it and look even better!!! ( I hope that comes across tongue in cheek)
Just got out of the hospital for sepsis. I laughed in the nurse's face when she said, "You don't look like you have sepsis!"

The first time I saw my doc, before I was diagnosed, he said, "I don't think you have Crohn's."

When I asked why, he answered, "You don't look sick enough."

Gee all that because I put my make-up on before I leave the house. I must do a damn good job~
Hi Linder,
I know it is easy to say but try not to let the lack of knowledge by others get to you. My son was diagnosed as a teenager. He was athletic and "looked" healthy most of the time. He was having a bad flare and couldn't do anything. People said very nasty things because they saw me mowing the lawn and doing a lot of work that he normally did. I did not feel obligated to explain to them. Some people will always be judgemental and narrow minded.
I am glad you are here, where once again you don't have to explain yourself! I am also glad you have a supportive husband. Crohn's is a tricky disease and it is so personal. Hang in there. It may help to keep a journal to help find patterns or as a way release emotions.
Keep you in my thoughts!
Yea, they didn't think I looked sick enough either when I told them I had to be off work for a while. I am too medically fragile to have surgery - but hey! I don't look sick!
How awful that your friends say you're faking it! Well, you know who your friends are!
sounds like your husband more than makes up for it though :)

I hope you feel better soon! Nothing worse than being held back by Crohn's no matter how much we try not to be

Hi Linder,
i have had crohn's for 21 years now was! in remission for 15 years but recently got a flare up a week ago and i am on predisone. The pain is real like yourself many people don't understand if you can't see it it's not there,but thats wrong, people who are your friends should understand that! i recently was suspose to go on a camping trip , but i had to cancel it. but, i wife and her family is still going. That's alright for them, they will all be drinking, having sausages around the fire.but, by me going i will be in torture, because you can't eat, you can barely sleep, you can't lie down when you want to. Everybody is in your trailer you can't feel comfortable. so, what is point in going. i am frustated now. but, that's it. i will be going the next camping trip crohn's or not. but, do understand where your coming from if people can't see it . they don't believe it. but, only you and your husband knows and that is all that counts. keep you head held high and may you take flight. My thoughts are with you.