My Tale..

Hi Everyone,

All my life, I was misdiagnosed. I suffered from terrible intestinal problems that actually put me in hospital 2-3 time a year from the time I was 15. It was all written off to Gastritis, IBD and a few others. Then when I was 20, (I'm 50 now), I was diagnosed with Anklosing Spondylitis. I still was getting misdiagnosed for the gastric problems.

About 4 years ago I was hospitalized with a blockage in my intestines and had a resection done. At this point they realized I had Crohns...suddenly everything made sense. I am not doing well now. Between the Arthritis and the Crohns, I deal with pain on a daily basis and have to use the bathroom 6-7 times a day with diarrhea...also quite painful. I'm also 5'10" and can't seem to gain any weight...I weigh 125 on a good day. This makes life very difficult. I have a hard time keeping a job as I'm always running to the Men's...not good as I'm a cook. I have, now 3 times, applied for disability but they say basically that I'm not sick enough and because I lack a Doctors report they deny. I have very little money and really can't afford to be under a Doctors care...although I know I should. I take Aleve for the Arthritis and Immodium for the Crohns but still, I can't gain weight and still suffer greatly. I have serious bouts of depression which I know must be addressed but again, my finances prevent me from doing anything.

I feel, a lot, that all this isn't worth it and have a hard time getting out of bed in the morning, as normally, I have to unstiffen my body, (pain), just to run to the toilet for some more pain...I don't know where to turn.

Thank you for letting me vent here.

I'd stop taking the Aleve as it can aggravate your Crohn's which will in turn make your arthritis worse. It can be a nasty circle.

I definitely sympathize with the "too rich for benefits" predicament. It's why I'm in such crushing debt now even though I have had insurance for around a decade.

I wish I had more advice for you. You're in a spot that the United States as a country has decided to pretend doesn't exist, or that if you're in such a spot, it's your own fault. If you're unattached I seriously and with no attempt at humor recommend emigrating to a country with sane national health policies.

Welcome, Sebastian! Vent away! It can taken a while to get an official diagnosis, but I think you hold the record. I am sorry you suffered for so long, when you could have been receiving appropriate treatment.

Keep fighting for disability. Perhaps, you should contact the CCFA to see if they can hook you up with a local doctor who can help with your case. Good luck!

Hi Sebastian, welcome to the forum. Your story sounds a lot like my aunt's - she was ill for as long as she could remember, and only finally got diagnosed a couple years ago when she was around age 50. Apparently it just took that long for the scarring to finally show up on colonoscopy.

With regards to disability, you might want to contact a lawyer. Many lawyers won't charge you a dime until you get approved, and disability lawyers will know the ins and outs of the system. Good luck!

HI Sebastian, i am sorry it took so long to get diagonsised but at least you know what your dealing with, it can be controled by diet alone or by medications. Regarding your disablilty i am on disability and had a doctor's supplied documentation regarding my case. and got approved . if i were you i would diffiently go see a lawyer about your conditions. keep us posted! best wishes.

scott

Hi Sebastian and :welcome:

I'm glad you found your way here but so sorry to hear all that are going through.

Was your resection ileocaecal? If so have you tried Questran to control the diarrhoea? My daughter has short bowel syndrome as a result of surgery and has been able to control the frequency using natural psyllium husks. Questran did work for her but she found it too unpalatable hence the psyllium.

I guess the problem with your finances means you aren't on any IBD meds is that right?

Dusty. xxx