Recently Diagnosed

Hello, I am new here. I am a 25 year old full time college student and work part time. I started having really bad abdominal cramps a few months ago and it got so bad one night I ended up in the ER. found out after having a colonoscopy that I have mild crohns. I do not have health insurance and that is what is the scariest part of this. I have already gotten about 5,000 dollars in medical bills that I have no way of paying for. I applied for health insurance but was denied coverage because my records show that I have abdominal pain with no known cause (the doctor was nice enough to not diagnose with crohns right away). I started taking Asacol last week and so far I havent had any pain, but every time I feel anything I get scared that it is coming back. The doctor also gave me free Asacol to last about a month, but then I have to pay for it. Does anyone know of any way to find insurance to cover all this?
Also, when you have a flare up of Crohns, what can you do to stop the pain? My doctor said I would most likely have to come back in and maybe be put on steroids. Are there certain foods I should avoid?
I have been very positive about this, especially when I was told that it was mild and not at the severe stage yet. But after recieving medical bill after medical bill, I am starting to get stressed.

Hi there ,
The Asacol may take a few weeks to really kick in . I have found this a great help .The pain and cramps etc.. dont go away ,as you eat you will probably feel these more as the you possibly have inflamation in your gut. You will have to reduce the size of your meals and start making a food diary to help eliminate trigger foods ,ie fried food , curries, and probably vegatables .These vary for everybody but you will soon find out which to avoid. Being positive is very important and do stay active as this helps digestion.
there are many forums on this site where you may find many people in similar situations, it will help to discuss the issues .
Good luck.

Can you find out if you qualify for Medicaid? http://dch.georgia.gov/00/channel_title/0,2094,31446711_31945377,00.html Apply anyway, you may qualify since you do have Crohn's no matter how mild.

Talk to the people at your college (there should be a health clinic or something similar). They may have a program for students who need health care.

Go to you local Social Services office (you can call to make an appointment) and ask them what programs are available to you. http://www.socialwelfareservices.org/Georgia/Savannah_31415_social_and_welfare_services.php

Check out the free health clinics in your area (all of this was found through a google search): http://www.freemedicalsearch.org/nearby_cities.php?city=sevannah&st=GA&submit=Search+by+city

Even though we're in the US, we aren't totally screwed. There's always a way to find coverage it just takes time and getting through some red tape. Just keep in mind that your health, well being and life are important and fight for your right for coverage even if you have to go through Social Security and be considered disabled to get coverage (I receive SSI and with that comes free health care).

You're fortunate to be considered "mild" but that doesn't mean it can't slide into the severe scale. Your condition was caught early on and can get worse if left untreated. Even with mild cases courses of medication to rid you of your flare are necessary and maintenance medication between flares to keep you in remission may be necessary. Its up to you and your GI to discuss this.

Also, many drug companies offer either free or reduced price medications for people who are uninsured. It's well worth the time to call the drug company and see if they have a patient aid program. And talk to your doctor, they may be able to prescribe something that is lower cost and/or with a company that does have a patient aid program.

Good luck to you!

Suzanne

Thank you all for you help. I am applying for Medicaid, even though I do not think I meet any requirements (not being pregnant or having dependents and all that) but I am giving it a shot. Applied for two other health insurance companies and got denied. I think that the Asacol has helped, I downloaded a crohns diary so I can keep track of foods that may trigger the pain. I am scheduled for another colonoscopy in a few months to see if my inflammation is getting worse. fingers crossed I can find insurance or some source of extra income before then. I have heard that you should not take advil or ibuprofen for the pain...is this right?

I was told no on the ibuprofen, which sucks as I popped that stuff like m&ms. I'm not supposed to take tylenol because of the medication I'm on for the leukemia and now can't take ibuprofen. My oncologist has said tylenol, given the circumstances, is ok but if it messes with my liver at all, I can't take it. Just in a wait and see mode.

I am sorry to hear about the leukemia. is the leukemia somehow related/caused by crohns diease? I know the doc told me that they believe CD is an attack of your immune system on your digestive tract. I am still learning alot about all this. and yes I used to pop advil all the time! I took tylenol this morning because I was cramping pretty bad and so far I havent had any problems.

Ya switch to Tylenol but if you find that it stops working then you should probably see someone from pain management or talk to your GP about pain if you GI refuses to prescribe proper pain medication.

Oh i wanted to ask, I saw that you have been in remission for 13 years. Does this mean you have no symptoms of CD? or do you have occasional flare ups? I havent been thoroughly told what happens throughout the course of the disease.

Km8367 said:

I am sorry to hear about the leukemia. is the leukemia somehow related/caused by crohns diease? I know the doc told me that they believe CD is an attack of your immune system on your digestive tract. I am still learning alot about all this. and yes I used to pop advil all the time! I took tylenol this morning because I was cramping pretty bad and so far I havent had any problems.

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I've had leukemia for 15 years and was just dx with Crohn's in February. For years, we thought my tummy troubles were caused by the chemo but it seems there's a different cause. My immune system is pretty wracked out so who knows what's related at this point. Ah well, life is what it is sometimes.

SuzInVa said:

I've had leukemia for 15 years and was just dx with Crohn's in February. For years, we thought my tummy troubles were caused by the chemo but it seems there's a different cause. My immune system is pretty wracked out so who knows what's related at this point. Ah well, life is what it is sometimes.

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Wow... Well I wish you the best of luck and recovery. Sending you some positive energy
This forum has definitely been a great help for me even though Ive only been here for a few days now.

People debate on here on what they consider to be a "flare." While in remission, the majority of the time you have no symptoms and your inflammation markers in your blood work will show normal to slightly above normal amounts of inflammation (the blood work shows inflammation throughout the body and I also have arthritis so the blood work picks that up making the markers go higher). That doesn't mean you may never have issues, the point is that the disease is under control rather than out of control. I keep it under control with maintenance medication (just 6MP 75mg at the moment). This drug suppresses the immune system which in turn suppresses the disease. There are times where I have diarrhea when I'm sick with a cold, flu, during my period, suffering from anxiety (I have panic disorder and agoraphobia) or could be caused by what I eat (everyone even without IBD has trigger foods that give them diarrhea but the diarrhea goes away after the food has passed through your digestive tract). Basically flares come in mild, moderate or severe and not every flare is the same. You're either in a flare or you're not. If I get pain and diarrhea from something I ate, I don't say that I'm flaring, I just admit that eating that made me sick and wait for it to go away which it always does. An actual flare needs to be treated with medication along with diet to help get it under control. They don't usually just come and go. I think people use the term "flare" far more often than is needed.

My flares in the past before my resection left me practically bedridden and I was usually hospitalized because I would bleed a lot and wouldn't absorb anything I ate or drank (had to have an IV). I've had 3 major flares with small blips of remission in between. My flares would usually last up to a year or more. My bowel resection was a forced remission but with less bowel I do have diarrhea more often than the average person (plus they removed my cecum and ileocecal valve which can increase your chances of having diarrhea). Having a resection can cause its own complications in the future such as narrowing from scar tissue which can cause partial and full blockages. Not to mention having surgery increases your chances of needing it again and again in the future. In a way, it was a wonderful thing but I have no idea how much longer I have until I have to go through it all again (if I have to that is, fingers crossed).

Sorry for the long post. You may notice that I tend to ramble at times. Yes 13 years means no flares in between.

Well I say that is awesome for 13 years of remission! I guess I was considering flares to come and go and didnt realize they could last as long as a year. I cannot imagine having those pains and not being able to absorb nutrients for food for that long. You are one tough person! My fingers are crossed for you as well that you will not need surgery again!

Well I wasn't in the hospital the entire time. My longest stay was almost 3 months. The rest of the time was dealing with the symptoms at home and being on a strict diet with lots of medication.

Crabby good point about the use of "flare" . it has taken me a year or so to know which is food related and which is inflamation .Inflamation is very different and can ground you for weeks or longer and can only be treated by correct specific drugs. Another important point that my doctor told me is that if you are in 'Flare " then it will show up in your blood tests rather than just an upset stomach because of something you ate . The problem being that if you have IBD you most likely re act to all or most food so this could be why it is difficult for doctors to diagnose as they are most likely going to say its a reaction to food ( IBS).

Been there and here

Hi,

I was in the exact same boat 8 years ago when I was 23. Going to Armstrong here in Savannah. Ended up with $250,000 in unpaid medical six months after dx due to unpaid surgery cost i had to file bamkruptcy on. There is hope! I know this is a very screwed up time for you. It seems like with all the bills there's no way you can either afford to continue college or have time because now you need a great paying job with great insurance.

All the advice given is spot on. Just remember that there is always a way. Also, when applying for SSI (which I was never approved for) they almost always deny you the first time. The second time, get a SSI lawyer. They help a lot and usually accept payment from money you are awarded and no payment if you aren't. All I can say is stay positive. Also, since you are under 26, if your parents have insurance then by law that poliy has to cover you to 26 if you are in school and if they add you to the policy, especially. Check at your college too, I know AASU offers basic insurance for students of some form. It may jus be for accidents occurring at the school though, I can't remember.

If you need or want to talk with someone in the area who has been through this and is currently going through a relapse (was fine for 5 years) feel free to e-mail me. rs3858@gmail.com