Living with Crohns

[TytoAlba]

So after some time lurking, I decided to finally make an account. I'm right in the middle of a sort of flare right now, and feeling down.

I was diagnosed with Crohn's Disease when I was 17 years of age, which was eleven years ago. I had been bleeding profusely and was in a massive amount of pain. Was in the hospital for over a week before they finally let me out.

I've been on Remicade since the beginning, really. Works well. But due to insurance changes it was delayed a week this time and I've been feeling horrible. My GI put me back on a small Prednisone dose until I get my next Remicade infusion so...that should help a little.

I've had three colonoscopies and have been hospitalized several times. Working during that time was fun. I have reapplied for disability, and am hoping it comes through this time.

My mother isn't being too supportive right now. Has basically been getting on my case and telling me my disease is not that bad and saying in a mocking tone "Oh yeah, that disease is just like cancer!" Just....don't. I am so sick of not being believed because Crohn's is whats known as an "invisible" disability.

I have been catching colds non stop for the past month and a half, and in between that I'm flaring.

My GI tells me the Crohn's is in remission, yet I keep having mini flares (as I call them) and symptoms. I'm really starting to dislike him (for other reasons as well) but its so hard to find another doctor right now.

So...I've come here. Hoping I can find someone who knows what this is like. I'm sure I can. :yfrown:

 

[ronroush7]

I am sorry your mother is giving you such a rough time about the Crohns. My wife was slow at understanding at first. With mini flares, I would doubt you are in remission. I would consider getting a second opinion.

 

[TytoAlba]

I am sorry your mother is giving you such a rough time about the Crohns. My wife was slow at understanding at first. With mini flares, I would doubt you are in remission. I would consider getting a second opinion.

Yeah, its been a long time though, so I don't understand why she is giving me a hard time now.

I'll be talking to my GI at my next Remicade appt, which is Friday, so I'm probably going to ask him point blank if I'm in remission, and the Crohn's isn't active, then why am I still having symptoms.

 

[ronroush7]

Last year, they did a test on me called an enterography. They told me I was in remission and that the symptoms came from IBS. I kept having symptoms and so they tested me again. It turned out my Crohns was active. I hope your appointment goes well and he helps you.

 

[TytoAlba]

Thank you, I appreciate it.

 

[ronroush7]

Welcome

 

[NatCol38]

I feel your pain, have been in flare up for what seems like a year now and had to quit my job 8 months ago. Such a hard disease for others to appreciate because it is so individual and only now my better half is starting to come around but it's been a long hard road. Wish you the best of luck I agree with the others get a second opinion can't do any harm.

 

[TytoAlba]

Thank you, it really means a lot to me. I've been just really upset the past few days because it seems like so many people around me do not take Crohn's seriously.

 

[MizzSarah]

I am also in remission but I have a hard time believing that's the case. I read somewhere in pure desperation to understand why the heck I was still sick in remission---there are different types of remission. You could have normal bowel movements and have less pain---or in remission it could mean your inflammation markers have improved. Bunch of crap if you ask me.

I also get sick quite a bit. I'm on and off antibiotics weekly. Been referred to a lung specialist and allergist to ensure there is not other underlying issues. i work in schools so I figure being on certain biologics doesn't help the odds.

It's sad to hear you are not feeling understood by your family. It's a tough disease to explain to people. I can't tell you how many times I've been accused of lying about my condition. Outwardly I look like any person walking down the street but there's an invisible illness I have that's for sure.

So after some time lurking, I decided to finally make an account. I'm right in the middle of a sort of flare right now, and feeling down.

I was diagnosed with Crohn's Disease when I was 17 years of age, which was eleven years ago. I had been bleeding profusely and was in a massive amount of pain. Was in the hospital for over a week before they finally let me out.

I've been on Remicade since the beginning, really. Works well. But due to insurance changes it was delayed a week this time and I've been feeling horrible. My GI put me back on a small Prednisone dose until I get my next Remicade infusion so...that should help a little.

I've had three colonoscopies and have been hospitalized several times. Working during that time was fun. I have reapplied for disability, and am hoping it comes through this time.

My mother isn't being too supportive right now. Has basically been getting on my case and telling me my disease is not that bad and saying in a mocking tone "Oh yeah, that disease is just like cancer!" Just....don't. I am so sick of not being believed because Crohn's is whats known as an "invisible" disability.

I have been catching colds non stop for the past month and a half, and in between that I'm flaring.

My GI tells me the Crohn's is in remission, yet I keep having mini flares (as I call them) and symptoms. I'm really starting to dislike him (for other reasons as well) but its so hard to find another doctor right now.

So...I've come here. Hoping I can find someone who knows what this is like. I'm sure I can. :yfrown:

 

[TytoAlba]

I do want to say thanks to all of you for your support, it means a lot to me. My doc says he has no idea, and its probably just the stress of life causing it to act up. Because on my last colonoscopy the Crohn's was basically not doing anything. Inactive, dormant, quiet, whatever you want to call it. Getting a new doctor is out of the question right now.

 

[MizzSarah]

Stress is something they use to explain away everything. Listen to your body and keep telling them over and over again if you have to. Before I was diagnosed with Crohn's---for 7 plus years I went from doctor to doctor trying to get some answers. They said stress. They put me on anti-depressants. They even asked me, a young teen at the time if there was a chance I was lying in attempt to get my parents attention. Other doctor said it was all in my head.

Don't settle for answers from a doctor not willing to look at the bigger picture. Each of us are people with complex bodies which should be looked at with an open mind.

I do want to say thanks to all of you for your support, it means a lot to me. My doc says he has no idea, and its probably just the stress of life causing it to act up. Because on my last colonoscopy the Crohn's was basically not doing anything. Inactive, dormant, quiet, whatever you want to call it. Getting a new doctor is out of the question right now.

 

[ronroush7]

I agree with MizzSarah

 

[TytoAlba]

I was diagnosed with the Crohn's right away, so that wasn't an issue. Its just now when I'm still having symptoms off and on. Been feeling so much better since the last Remicade infusion. So If it wasn't my Crohn's acting up again, and just "stress" exacerbating it, why did the Remicade calm it again? That's probably something I should have asked.

Stress is something they use to explain away everything. Listen to your body and keep telling them over and over again if you have to. Before I was diagnosed with Crohn's---for 7 plus years I went from doctor to doctor trying to get some answers. They said stress. They put me on anti-depressants. They even asked me, a young teen at the time if there was a chance I was lying in attempt to get my parents attention. Other doctor said it was all in my head.

Don't settle for answers from a doctor not willing to look at the bigger picture. Each of us are people with complex bodies which should be looked at with an open mind.

 

[ronroush7]

I was diagnosed with the Crohn's right away, so that wasn't an issue. Its just now when I'm still having symptoms off and on. Been feeling so much better since the last Remicade infusion. So If it wasn't my Crohn's acting up again, and just "stress" exacerbating it, why did the Remicade calm it again? That's probably something I should have asked.

I am not a doctor but I would lean more towards the Crohns causing it. You know your body better than anyone else.

 

[my little penguin]

Hope things stay calm
For ds when he gets a cold or a thing minor he will have minor symptoms
We think of it this way
His body works very hard daily to stay stable with all the right meds etc...
The minute something else is going on even minor like a cold
Then the body has less resources to maintain that stability since they are being depleted by the cold .

So not flaring per say but not normal either

Glad remicade turned things around