Hi, I'm Ashley and I'm Terrified of Crohn's.

[ashj068]

Guess you could call me a big baby, but for some reason I'm absolutely terrified of this disease. Probably has something to do with the way I was "diagnosed."

I'm 22 now, diagnosed at 15. I went months without being able to keep food down, as soon as I'd eat it would come back up. I slept all day at school in the nurses office. Dropped to 72 pounds. My hair was falling out. And all the doctors told me and my parents was that I had an eating disorder. They wanted to send me away to some rehab clinic. :ymad:

Finally they took me into the hospital to do a scope and see what was wrong. I was told it would be a 2 hour procedure and I'd have a little tiny scar. I woke up 8+ hours later with a massive stapled up incision right down the middle. I have Crohn's. Apparently my insides were so infected, I would have died within days if that surgery didn't happen. I was in ICU for 2 weeks and then inpatient for another 3. Long story short this was the worst time of my life.

Over the last 2 years I've been in the hospital 3 times with what I'm assuming is a flare up. I'd suddenly get a lot of pain, very distended and then vomiting. All they really did was give me some pain meds and fluids.

Now something different is happening, I have slight pain which is really just more nagging and the last week or so I've had blood in my poo...Which is freaking me out. I haven't seen a doctor since my surgery and I don't currently have health insurance and basically, I'm freaking out. So thats my book. More than anything I stumbled upon this forum and thought it was a place to vent so to speak. For some reason I feel like I can't talk to people about this. Guess its the "disease" stigma. Not sure. I'm ashamed of having Crohn's I guess and also in denial. So stupid.

 

[GutlessWonder86]

Hi Ashley, I'm a crohnie too. Diagnosed at age 12. 1st major surgery w/total colectomy permanent ileostomy at age 17 to save my life. Many ER visits and hospitalizations over the years.

As for not having insurance, all hospitals and doctors offices have government forms (aka uncompensated care forms) for people who don't have insurance. All you have to do is contact the billing office and request the form and provide what is asked: proof of ID, proof of residence, a W2 from last year, and whatever else as requirements change yearly. I use to do medical billing so this is how I know this.

Then based upon a sliding fee scale from the income information you provided, you would either be required to pay 1/4, 1/2, 3/4, the entire bill, or none of it. It is good for an entire year and then as long as you have no insurance, you would just have to reapply again next year. If you have just basic insurance that pays hardly anything, some hospitals and some MD offices have charity care programs (you have to ask if they have them) where people have to meet a certain criteria and then they have to pay just a small fee.

So if you are really hurting and bleeding, please don't stay home. Go to the ER so they can give you something for it. I feel for you. It stinks being a Crohnie. Seriously, see your GI as well. Their billing office can assist you as well.

Know that you are not alone. Hugs to you Ashley. ~Gutless Wonderwoman

 

[kiny]

Hey,

I've had blood quite a few times, and a blood "erruption" which caused me to faint. It's scary because it's, you know, blood.

But not everytime you see blood means that you're bleeding, sometimes it's just colon tissue mixed with a tiny bit of blood and it looks far worse than it is. When you see red blood, you should really worry though.

I avoid normal painkillers like the plague atm, because they slow down your stomach, which will cause constipation, which will make things so much worse. Use Bentyl or something else instead if you're able.

 

[Pirate]

Hi Ashley, welcome to the forum. I'm sorry to hear that things aren't going good.

We all know what your feeling, we've all been terrified at one time or another. It comes with the disease. Even after 25 years I still get afraid when things start "acting" up. We just learn to understand our body and become educated enough to determine what our insides are telling us.

Bright blood could be many things, but most common is a leasion or small tear which usually lasts one or two bowel movements. If it is a constant happening with every BM than you need to get it checked out.

If it is the dark Coffee colored stool than you have blood loss further up your intestinal trac that could be caused by a few thing. The most common being inflamation or leasion

In any case it really needs to be checked out.

I hope things get better and remember, we're here anytime you need to vent, talk or just get information.

 

[ameslouise]

Hi Ashley and welcome!

We have all been scared of our diagnosis. Glad you have found us - you are not alone!

First, what exactly did they do in your surgery? How much did they remove?
Second, what meds are you on, if any?
Third, you need to see your doc!

At the very least, you need to maintain a relationship with your doctor so you have someone to talk to when things start to act up.

Is there any way you can get on your parents health insurance? I'm not sure what the rules are and if the new health care act is in effect, part of which allows adult kids to remain on their parents health insurance until age 26.

If not, there are many pharmaceutical treatments that offer assistance, Humira and Remicade are two of the "heavy hitters" the both offer assistance. And for the short term, prednisone is super cheap and works really quickly.

I really think you need to contact your doc right away. You don't want to be in another situation where you wake up and find your have had to have surgery! Don't put it off!

Good luck - Amy

PS Talking about it gets easier as you get adjusted to your diagnosis. YOu can talk about ANYTHING here, and you should be able to talk about anything to your doctor as well.

 

[Jennjenn]

Hi welcome

As others have said I would definitely try to get that checked out. If you do not have insurance possibly you can go on Medicaid or like Amy said possibly stay on your parents health insurance. If you do go to the ER or the hospital, a lot of them have indigent programs to help you out on the costs depending on the hospital.

 

[Catherina]

I only see 'April' as the date of your post and hope that you have already been to a doctor. Find one you trust and DON't let things just go on. Try and find out what happened or what you ate the days before you have problems with your gut. Accept what you have and get to know it (I mean get to know what Crohn's is for you). Stress and worrying is making things worse (also aggrevates your new partner Crohn's). By the way, you're missing out on a very positive issue of Crohn's. Due to the regular check-ups and colonoscopies it's very difficult for the Big C to surprise us. Get to a doctor asap girl - it's the only thing to do!