New Here. Where to begin?

[Snake]

I'm a walking medical curiosity. I was diagnosed with Crohn's Disease about 9 years ago but I had it much earlier than that. I tried to make believe I wasn't sick. Then I passed out at my home and woke up in the hospital two days later. I was so malnourished my body stopped functioning. Since then, I take it seriously and have been under treatment ever since.

I first tried the basic sulfa drugs - and found out I'm allergic to them (I had seizures) - so we escalated to Remicade with Methotrexate.

Then, about three years ago I found out I have a rare form of incurable Leukemia on top of the Crohn's. Yay me.

My red blood cells are misshapen and too small. This would not be an issue if I was otherwise healthy - my body would just overproduce them. However since I have Crohn's in my small intestine, I can't absorb enough nutrients to make enough red blood cells - leaving me perpetually anemic.

I get iron infusions and inject vitamin B12 and Testosterone. I also get IV hydration every two weeks.

I'm depressed. I'm weak. I'm lost. I feel like I'm dying. But mostly I feel alone. Nobody understands it. They say "But you look normal..." or they give me some advice like "stop eating gluten - my cousin stopped eating gluten and cured his Crohn's disease..."

Uh...sure he did.

I'm financially wiped out. I barely get through each day. I'm self employed (for 30 years) so I have to buy my own insurance and now with Obamacare I have to fight for every thing.

I'm exhausted. I'm tired of fighting. I'm tired of letting down my family. I can't perform music anymore (I used to perform with several Grammy Award winners). I have no motivation.

I'm on Pristiq so I'm a zombie. I have anxiety and take Xanax. I can't sleep so I take xanax and Temazapam and Trazadone. My memory is damaged.

Yet, I'm an over achiever - people have no idea what I'm going through. They think I'm at the top of the world. I'm living a lie.

There is so much I want to do but this fatigue is all consuming. I don't know why I'm here. Sorry for the rant.

This is me. I'm a mess.

 

[Trysha]

Hello Snake and welcome to the forum.
You are certainly having a hard time and you have my sincere support.
Crohns is not a pleasant diagnosis but usually can be brought under control with the modern array of drugs we have available
It's even worse for you to be hit with a leukaemia...what a double whammy.!!
It must be very hard living with illness in a country where financial support appears to be lacking for these necessary but overpriced drugs needed for treatment of IBD,.and leukaemia
Sometimes help is available from the drug companies...have you been able to ask them?
Your doctors may be able to help you there.
The forum is here for you and is a good place to rant and let off steam..you can say whatever you wish to and will receive a sympathetic ear from members with similar problems...so rant away
Feel better soon
Hugs and best wishes
Trysha

 

[ronroush7]

Welcome. I am sorry for all you are going threat. Come here anytime you want. It is a great support group.

 

[caretothepeople]

It's great that you're reaching out and that you found yourself here. Crohn's can be an emotional roller coaster, filled with so many emotional and mental ups and downs. Having support can be critical to managing not only the stress, but feeling better and caring for your health.

A therapist or counselor can help with coping mechanisms to deal with the negative thoughts and feelings of doubt, perfectionism, etc. There are many who specialize in working with people who have chronic health conditions. Psychology Today is one place to start.

Finding a support group can be helpful too since it's often relieving to talk to other people "who get it", who understand what it's like to live with an invisible illness. CCFA has links on their website: http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/

 

[jterry]

waiting results

i have had crown's for about 3 years now and doctor have been treating me as if I'm not ill and it hurt I'm was kick out by my family house i was even told i was lying about my illness and all my doctor aren't really helping they keep sending me home with a different result i have seen every type of specials that you can think about i haven't been able to work . my life has gone down the drain

 

[ronroush7]

i have had crown's for about 3 years now and doctor have been treating me as if I'm not ill and it hurt I'm was kick out by my family house i was even told i was lying about my illness and all my doctor aren't really helping they keep sending me home with a different result i have seen every type of specials that you can think about i haven't been able to work . my life has gone down the drain

Sending support

 

[Snake]

Thanks, all. I'll be participating here when I can. Right now, I'm bushed. More to come. Not just ranting - hoping I can help share my knowledge and empathy. I swear, I'm a PHD in my own narrow condition.

I joined because I feel very misunderstood - by doctors, friends, business associates - everyone. It will be nice to meet some people that can truly understand what this disease does.

I'd also like to talk about how we can advocate for special consideration with regard to insurance. It's getting harder and harder to find policies that cover Remicade (or other pricey biologicals). Whether Obamacare stands or not - those with incurable illness need consideration.

We should not have to fight for our medications or die in abject poverty because of illness. People with IBD that require biological drugs are at great risk of being pushed off the cliff - in the US and other places (Canada too).

 

[ronroush7]

Thanks, all. I'll be participating here when I can. Right now, I'm bushed. More to come. Not just ranting - hoping I can help share my knowledge and empathy. I swear, I'm a PHD in my own narrow condition.

I joined because I feel very misunderstood - by doctors, friends, business associates - everyone. It will be nice to meet some people that can truly understand what this disease does.

I'd also like to talk about how we can advocate for special consideration with regard to insurance. It's getting harder and harder to find policies that cover Remicade (or other pricey biologicals). Whether Obamacare stands or not - those with incurable illness need consideration.

We should not have to fight for our medications or die in abject poverty because of illness. People with IBD that require biological drugs are at great risk of being pushed off the cliff - in the US and other places (Canada too).

Amen

 

[dave13]

Not to fuel the fire,but....in my itemized bill:Infliximab/Remicade is $15,000+ for each infusion.

 

[sfabry74]

HI all, I am new to this and also looking for where to begin. I have tried many things with many doctors and am, to be honest, frustrated. I am also a nurse, so I am now attempting to take my own medical knowledge and see what I can find on my own to treat myself and see if that makes a difference. I have recently started LDN, but was a bit overly enthusiastic and stopped my Humira at the same time. Unfortunately, the LDN takes too long to start working so I did have to restart the Humira, but right now I am "OK-ish"....not great but not horrible. My husband smokes pot recreationally but I have been very hesitant to try it because I am an RN and it would not be good to have that in my system in the event of a random drug test and it isn't even legal in our state, medical or otherwise. However, he broke me down a few weeks ago when I was particularly sick and I did try it over a long weekend when I was off work for a week and a half, and I felt really good - for a couple days anyway...so now I am curious about that, oils, whatever, but again, it is a double edge sword as I am in a field where that could cost me my career, so I am just doing research at this stage. So, that is me....hi all!!

 

[ronroush7]

Not to fuel the fire,but....in my itemized bill:Infliximab/Remicade is $15,000+ for each infusion.

Is Remistart an option for you?