New and looking for support

[KatieLu]

Hello everyone.
This is the first time I have ever sought a support group for my Crohn's although I have been diagnosed for a couple of years now. The truth is I know the power of support groups because I deal with other disorders and have found hope through them.
I don't know much about this disease, and I think I'm a little scared to find out what the future may hold for me. I worry that I won't be able to handle it. I'm scared of getting too sick to do the things I want to do. My fiance is amazingly supportive but sometimes I worry that I will burden him with my health problems.
I think I joined this forum in order to explore my feelings about having this disease. I have a tendency to stuff my feelings down inside but I know that it isnt healthy.
I would really just like to hear from other people. Have you felt like a burden? Do you feel scared you'll be too sick to accomplish your dreams? Are you worried about getting strapped with a poop bag? Im just scared.
Thanks
Katie

 

[Jennifer]

No I've never felt like a burden although I know some have/do. Its part of who I am and I didn't chose it so there's no reason to have such negative thoughts as they only get you down. I have worried that maybe I'd be too sick to accomplish what I wanted yet I finished grad school just like I planned ever since high school and eventually I will teach as planned. I used to fear a stoma but not anymore after becoming a member of this forum. There is a stoma subforum here if you'd like to check it out and read other people's experiences. Keep up with your doctor visits and tests and meds (if you need/take them) and you'll have very little to fear. What medication/s are you currently taking? Are you currently in a flare or are you in remission?

Welcome to the forum!

 

[Samboi]

Welcome KatieLu.
I've never felt like a burden. I've had CD for 20 years and I have personally found CD to be more of an annoyance than a burden. I love adventure travel, and these days I accept I can no longer go away for months at a time. So I just break countries in to parts and do them in smaller chunks. Last trip - spent two weeks riding a motor bike from Hanoi to Hoi An in Vietnam. I had more medicine than clothes in my backpack - but meh - I like to travel light.
I have recently acquired a bag - looks like I'll have it for about 9-12 months. My only hassle with the bag is actually waiting for the skin around the stoma to heal. Once that's sorted - I'll be back to business as usual. Getting sick every now and then just ensures that I embrace even more of life when I am well.

 

[ekay03]

Hi KatieLu and :welcome: I have felt like a burden at times. My family assures me that I am not. I used t be worried about having to get a stoma (poop bag) That was when I was in my early thirties and much more vain. It is good that you joined the forum. You can let all your feelings out here and what you say in the crohns forum, stays in the crohns forum The best advise I can give you is to have good medical care. If you are on top of the disease and are in remission you should be able to follow your dreams

 

[Aims]

Hi Katie, I am feeling exactly as you as described, i was diagnosed yesterday after 9 years of pain and knowing myself what it was but no Dr being able to find it until recently having a bad flare and suffering terribly. Now that I know I am scared too, don't want to be a burden and yes worried about the future as I am seeing my mother in law suffer terribly with Chrones also. I took myself off of wheat and dairy, but now I am having trouble keeping food down, so cutting out more food, really don't want medication if I don't have too. My husband is great and I have two small boys, but I don't want them to know mums not well, but it's so hard when I struggle to get out of bed! I know this will ease soon, but what will the future hold?? I totally get the way you feel !!
Cheers
Amy

 

[KatieLu]

Thank you everyone for responding. I was so relieved to see that people acctually read my post.
Aims- You really helped, its good to know Im not alone in the way that I feel about it. I guess I just don't have enough acceptance about it yet. I too suffered for many years until I finally got diagnosed after emergency surgery for a bowel obstruction. Good luck with your journey!