• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

I just wanted to be like everyone else

I have been struggling with crohns since I was 16, so 11 years now. You would think I would have it down by now.. ha.

Ever since I got diagnosed I had a problem with accepting it. I was in denial so when I would start feeling better I'd go off my meds and pretend that I was just as healthy as everyone else- doing, eating, drinking- just as everyone around me did. I bet you can only imagine how ridiculous college was. Such a struggle- I didn't care. I was sooo stubborn to be and to do what all my friends were doing. Because of this, I'm 27 with an ostomy. I almost died. I am still hoping that one day I can be reconnected but because I am so unhealthy the doctors say that they might have to make it permanent because it will enhance my quality of life. I'm on cimza, flagyl and cipro. I feel like crap all the time.
I love bartending, I love singing and creating music in bands... the culture that I am used to doesn't really jive with the "healthy" lifestyle. I am trying to change. It's just hard because I feel like no one understands, which is probably why I try to act and be like everyone else's "normal". People don't understand the social stigma as well as the lack of energy. I want to do everything.. I just can't and it sucks. Peoples' judgements have always effected me. If there is anyone out there with the same mental struggles because of all the physical stuff, it would be nice to know I'm not alone. When I look back, I feel maybe that's why I acted so recklessly.

fistulizing perianal crohn's, ostomy, abscesses, anemia, nausea, fatigue, setons, etc.
 

KWalker

Moderator
Welcome to the forum! Crohn's can be quite the journey and while many of us have lived with crohns for a long time, it can surprise us at any time. I'm sorry to hear you're having difficulty but we have a great support forum here with lots of members with ostomies as well. You are definitely not alone with the mental struggles. Not anybody can deal with crohns so every day you fight with crohns you grow that much stronger.

Hang in there and please feel free to have a look around the different sections on here :)
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, cgsings!

I'm sorry you've had such a tough time with Crohn's. It can definitely be a battle! I'm very glad to hear you're starting to focus more on your health. That's the first step!

Are you considered to be in remission? Have you told your GI you still feel so unwell? How long have you been on those medications?

:hug: I hope you feel better soon!
 
I have not been in remission for a Loooooong time. Nausea is caused by the anti-biotics. I have setons in because of my fistulas and abesses. They don't seem to want to heal. This is the first time I've reached out to others that might be like me. I have a really strong pain threshold... it's the fact that I push myself too hard that always gets the best of me (which is why health always tends to go to the way side). I know I need to change my life if I want to have the kind of future that I want. I am looking forward to anything that helps. I hope this does :) My mentality definitely needs a make-over.
 
Shoot I know what it's like to push and dig and tell friends you are ok..

I'm not even sure of what OK is anymore, but I'll say it if asked.

Is is possible to try a different type of antibiotic?Gah I know how pissed off I get at myself when I have food infront of me and feel to ill to eat it. But I think it's a good attitude to push one's self, not saying you should in your current condition but in general. The issue is knowing when to say "hey friends, I'm not really ok and I need to go home and sleep" or whatever the case.

I hope you can heal up soon! Hopefully by the end of the week you will feel a bit better!
 

Jim (POPS)

Jim (Pops)
Location
Antioch, Ca
cgsings, I can totaly relate to what you are saying. I have played music all my life and toured with a band all over the USA for 8 years. I stopped playing "ON STAGE" in 2007 because I begain to not feel well and started lossing LBS. I didn't know what was going on but I could see life as I knew it fadding away. In 2011 I went to the Dr. and they did a colonoscopy and said that my colon looked good but they need to take my apendix out. I went to the hospital for the operation and woke up with a resection and was told I had crohns, 7 days later I went septic and they had to operate again and I ended up with a ostomy bag. Hell, I didn't sigh up for that, I thought. I was about to go on tour as a band manager to Iceland and now that was out of the question. I had to sell my Production Co and Sound Co. and ended up just sitting around while ALL my friends were on the road having a great time. Well, I was in remmision for the 9 months I had the bag, but as soon as I got it reversed the crohns can back. I was making plans to hit the road while I had the bag waiting for the reversal. Crohns is not our fiend but we have to live with it. I still play guitar and recored songs in the studio, but I would like to do so much more. Lets face it, I'm now 62 years old and I might not be able to hit the road again. I guess what I'm trying to say is, the crohns can mess with my life but it will NEVER take the rock-n-roll out of me, nothing could ever do that. I just started taking Imuran and I'm hoping that it will help so I can get on with life. You have a long life ahead of you and you WILL find remision and start feeling better soon, as I hope I will. So,,,,, until then we have to adapt to life as we know it, yes that is hard but it is alot easyer and better to do that. Think of it as a "REST" and then you will get on with things. Take care of yourself so you can achieve remission and when you do you will enjoy it alot more. So keep that ROCK attitude, you will be using it alot soon. I really know what you are going through. Take care.
 
I can also relate to what you're saying. It sucks to be in your twenties or any age and feel unhealthy and older than your years. It's especially hard when friends and other people are out living it up and that's what you'd like to do. I'm new to Crohn's and am struggling a lot too. I have confidence one day it won't be so mentally challenging. If you'd ever like to message me, feel free. It'd be nice to talk to someone who is going through the same things. Good luck to you : )
 
Top