Diagnosed at 15

[Christina]

Hello! My name is Christina and I am from Arkansas. I was diagnosed with Crohn's Disease at the age of 15. I am now almost 20. I was hard for me at first, but I am doing a lot better now.
When I was first started getting sick, it took a little while to diagnose me. I think most of the problem was the doctors in my town. They aren't the best.
I started bleeding everytime I had a bowel movement. Each time it got worse and I got more and more weak. Soon I was sleeping a good portion of the day and I would get sick everytime I tried to eat something. While this was getting worse, my doctor was doing blood and stool test one after another. She "diagnosed" that I was just going through the stresses of becoming a teenager and that I would be okay.
At first I kind of took her word for it. But I didn't want to believe it. My symptoms got worse over the next week, so she decided to do MORE blood work. She still said the same thing. I even passed out in her office.
I then decided to go to a doctor in the same office. I examined me for about 10minutes and sent me straight to Arkansas Children's Hospital.
I was at ACH for 1 month. While I was there I would get better, then worse. I wasn't getting any nutrition because my body was getting rid of the food quicker than I could shovel it in. I ended up having a feeding tube.
Since I have left ACH, I have been put on many different meds. pednisone,asacol,mercaptapurine, iron, and remicade. Over many years I did get a little better, but not much. I still had blood in the stool. And I thought it was my daily meds causing it, but my doctor didn't want to take me off of them.
I have taken myself off the daily meds for the past 4months, and I haven't had any bleeding since. Hopfully I have made the right decision. I am still on Remicade. I take it every 8 weeks. I also take 4 Tums a day for the calcium.
I would love to hear what you think about my choice to take myself of the daily meds.
Thanks for listening,
Christina

 

[Sojourn]

Welcome to the forum. I don't know. We have to be careful on here about giving medical advice. I don't think anyone would support going off meds when your doctor has ordered otherwise. But some might give their personal experiences if they have done the same thing.

I haven't been on Remicade so I don't know the efficacy and support of daily meds taken with it.

 

[Kev]

Hi Christina Welcome to the forum. As for our opinion on taking yourself off your meds, I don't know how important that is. You are of age, you have reason to doubt the quality of the decisions made by your doctors. I hope that your decision works to your advantage. My only advice would be to continue seeking a doctor in whom you do have confidence. Afterall, as you've decided not to take your prescibed meds, its a waste of your time and theirs to continue seeing them. Having someone who is a trained professional in the treatment of IBD can be critical in how you make out in the future. Have you considered that it may have just been one of your daily meds that was the culprit causing the bleeding? Just my 2 cents worth. Think you'll find many on here who agree with your decision..

 

[D Bergy]

I think for most people, doing more or less what the doctor suggests is a good route. But, if it is not working and you have no other good doctor to get a second opinion from, then something has to be done.

I think it is pretty obvious that if you are doing better without the daily meds as far as bleeding is concerned, and you feel better, then I would consider that an improvement. However, the day often seems to come when it will come back for one reason or another and you may be in the same boat. Better to prepare for that day now when yo have a little time to do it properly, rather than wait for an emergency. You also should confirm that you really are improving with a doctor.

I would suggest that if you are not getting appropriate care, or you do not have confidence in your current doctor then find another one who may be able to help. Use a GI specialist and do not be afraid to go through a couple to find one you are confident in. All doctors are not created equal and some will fit your particular situation than others. At some point you will need to be checked and it would be wise to be prepared for that day and find someone who you can work with. In the end the doctor is your employee and employees can be replaced.

I am about the most skeptical of patients. Probably a doctors nightmare. But I know at some point, I need a doctor to assess my situation if nothing else. That does not mean I have to do what ever he suggests, but I certainly give everything he suggests serious consideration.

In order for calcium to absorb properly, you also need magnesium. A good multivitamin should help. You also may want to look into the diet aspect of Crohn's. There are others here that know quite a bit about it. I am sure they would be happy to help.

I hope you continue to improve.

Dan Bergman

 

[Christina]

So far I feel better everyday. But things could change very easily. That is what is wierd about this disease. One day you could be as happy and pain free as ever, and the next day you are misrable. I really think that the Remicade is the best thing that has ever happened to me.

I have a question to ask everyone:

How do you pay for your treatments of Remicade? Or many doctor visits?

Right now I am on a Remicade assistant program that is paying for my Remicade. But my bills to the day medicine clinic are $1,500 every 2 months. Luckly Arkansas Children's Hospital is paying that right now. As soon as I turn 21 I will be cut off. I can't find any insurance that will cover me without an extreme payment. Could you please help!
Thanks, Christina

 

[Kev]

Glad to hear you are doing better. As for how to pay, it's literally a case of massive debt, charity, or private insurance (if they don't exclude your illness as a pre-existing condition). Medical bills, special diets, expensive supplements, vitamins, enzymes, it all adds up. It's one of the primary reasons to try to get into a remission ASAP, aside from just wanting to get better. You need to start looking at your future options, OK

 

[Christina]

Medical Expenses

I don't understand how someone can expect me to be able to pay that kind of money. I was planning on getting married, but I have had to cancel those plans because according to all assistance programs my boyfriend and I will be making too much money. Which is crazy! My remicade cost appox. $24,000 a year. Together we would only be making $26,000. I guess they expect us to live off of $2,000 a year. I wish that medical expenses were cheaper, but that isn't going to happen. My doctor couldn't even tell any good ways to get things paid for. His options were to make payments to a hospital the rest of my life, get put on disability, or wait until I get sick enough to be hospitalized again. That way a hospital can't refuse treatment. Well anyway. Thanks for the information.

 

[shoe_fanatic708]

OMG! Do not take yourself off of your daily meds, I know from experience. I stopped taking mine for about 5 months or so (not on purpose, I forgot to take them at first, then gradually just kinda...forgot more) and then BAM! I was right back in the hospital!

You need your medicine, you really do. If you want to be healthy and feel good and be normal you need to take your medicine. I thought at first when I stopped taking mine "I feel fine, I feel better then I did when I was on it!" Well you know what? I was wrong! Your wrong! Im sorry, but its true. In the long run, you need your medicine. The Remicade is NOT enough to sustain you (trust me, I also have been on that for about a year)

So please, please go back on your regular meds. Or you'll end up back in the hospital, sick, bleeding, and just feeling all around icky. Thank you! :}

 

[shoe_fanatic708]

About the Remicade - your job should have an insurance plan, does it not?

One that pays for my Remicade - ALL OF IT - (leaving me only with the $25 doctors copays) is United Healthcare. So if its in your area - definitely, look into it.

I also get my Remicade as an Outpatient, so I dont have to pay for hospital costs or anything. I just walk in the Outpatient center of the hospital, pay the copay of $25, go back to a room and get checked over by a doctor, get the remicade, and leave. Thats it :]

 

[Christina]

I don't have insurance with my job, and I have called all insurance companies possible and all have denied me because of my Crohn's. As of right now it is not so bad because I do have a program that covers my Remicade, but not the time at the hospital to get it. I also go to the outpatient clinic in the hospital, but I am charged almost $2000 for that one day. My remicade takes from about 7:30am-5:30pm. They might feel like they need to charge me because I am there for so long. And another thing that is so bad about it is that I have to drive 90miles one way to go to a good doctor that will treat me.

 

[Kev]

Have you spoken with your doctors, the staff at the hospital or any clinics you go to? I was reluctant, but I finally forced myself to talk openly and frankly with everyone who is working on my case about my financial situation and lack of extra insurance. The result? My health worker at the GI clinic got me some meds for free, my GI was able to get my 5ASA for free, and my stomach meds, and is working on getting me a spot in any future remicade or humira programs. I was also hooked up with a local group that provides meds at cost.. that helps with the stuff no one can get for free. I also found part time work that pays enuff to keep the wolf from my door. The thing of it is, you have to ask questions, you have to tell people your situation, you have to explore any and all options to fight the IBD.

 

[Christina]

I have talked to everyone that I possably could talk to. My GI doctor is trying his best to help me with everything. I have found most things on my own though. I have found a Remicade assistance program and also programs for my daily medication. The only thing that I can't get help with is the hospital charges. I am okay right now because they are getting covered, but only until I turn 21. Since I am going to a children's hospital right now they will only accept me until 21. I have talked to good hospitals all around and most of them will only take a certain % of people without insurance. So i would be put on a long waiting list. As far as insurance companies, none of them will even consider covering me. I don't understand how people think that we can afford this.

Thanks

 

[Gypsy]

Insurance

Oh the insurance issue! It's enough to make you want to move to Canada.

I was diagnosed at 20 and I was in college at the time. I took the long road to graduating because college was awesome so I didn't finish my undergrad until I was 24, if i recall correctly. Fortunately, my dad's insurance through his employer covered me until I was 25 or successfully achieved a Bachelor's degree.

So for graduation I got an amazing Omega watch like James Bond sports from my pops and a note from his insurance carrier telling me to take a hike. Since then I have had to be fairly creative in my quest for insurance.

I am not sure if all states are the same but here in AZ if you get booted from medical insurance then there is a piece of legislation called COBRA that says you have to be offered coverage by the folks who booted you but it can be at a higher cost. I shelled out $450.00 or so a month to stay insured. They later canceled my coverage because I sent in a payment late. What can I say, I really wanted that guitar.

I stayed uncovered for a bit then discovered that my room-mate could cover me on his insurance if he put me down as his life partner. He worked for Wells Fargo at the time and the only qualification was that we:

1. share a bank account.

2. share a joint mortgage or a lease.

3. love each other.

We already had the lease. I put him as a joint member on a small savings account. And I declared my love.

Now the point I am trying t make is that you need to get group insurance provided by a corporation or association. Again I don't know if these are just AZ laws but group insurance plans cannot discriminate against pre-existing conditions like private plans can. So do one of the following:

1. marry someone with insurance that can also include you on their plan.

2. find a friend that works for an alternatively minded company and embraces the life partner status, do what I did and fulfill the requirements for coverage, they never have to actually see you kiss.

3. get a job that has a group plan. This often involves you working full time, which sucks. Some companies are really cool and let you have insurance at a part time status. I hear that Starbucks does this.

4. belong to an organization that has a group plan available. This worked for me with an association of massage therapist that I belong to. There was also a small business association here in Phoenix that had a plan available. All you had to do was pay the $50 a year fee and have a small business (or pretend to have one) and you could be eligible for their group plan which was expensive but cheaper than paying all med. costs out of pocket.

5. pray, cross your fingers, wish and write your congressman to change the US health care system. But this is the least likely possible of the 5.

good luck

 

[Kev]

Well, Gypsy, if I were you I wouldn't rush to pull up stakes and move here to Canada for health coverage. first off, although we claim to have full, free universal health care in Canada, the 'truth' is a slightly different story. We also have private coverage
from Blue Cross, Blue Shield, Mediavue, etc., etc.. That's the coverage I had before my disease cost me my job, and my group plan coverage. That plan provided me the following... free dental, prescriptions where I only paid the pharmacy fees, physio, chiro, eye glasses, eye exams, and if hospitalized, I was upgraded to a semi-private room with telephone and TV at no added cost (like, if you are really sick, you couldn't possibly survive without television and telephone).
However, the prescription service came in handy for raising my kids (kids seem to catch everything, and it always needs a prescription to fix it) and I regularaly used the chiropractic services. Then, one time I was admitted to the ER. The patient in the next cubicle was far worse off than I, but was told they had no beds to offer. He didn't have any extra coverage.. Then they came to me. I was expecting to get the same story.. sorry, no beds available. much to my surprise (and vast relief) I was placed in a semi private.. Yet we Canadians don't think we have a 2 tiered health care system. anyway, now I'm without private coverage, and all of those nice private insurance carriers I mentioned don't offer coverage for pre-existing conditions.. So, I can buy all of the insurance I want, they just won't pay anything that's related to my current condition. And that includes those nice N expensive drugs like remicade or humira. Remicade would cost me 1000's per treatment. Its something that Canadian health coverage doesn't cover.. the cost of your meds. And don't get me started on the pitfalls of moving province to province and getting your health coverage... that's a whole other beauracratic nitemare story, trust me.

Not that this is on target with Christina's intro post, just needed to get it off of my chest (once again I'm on my soapbox).. and to spread the word about the reality.

 

[Cordyceps]

its true

OMG! Do not take yourself off of your daily meds, I know from experience. I stopped taking mine for about 5 months or so (not on purpose, I forgot to take them at first, then gradually just kinda...forgot more) and then BAM! I was right back in the hospital!

You need your medicine, you really do. If you want to be healthy and feel good and be normal you need to take your medicine. I thought at first when I stopped taking mine "I feel fine, I feel better then I did when I was on it!" Well you know what? I was wrong! Your wrong! Im sorry, but its true. In the long run, you need your medicine. The Remicade is NOT enough to sustain you (trust me, I also have been on that for about a year)

So please, please go back on your regular meds. Or you'll end up back in the hospital, sick, bleeding, and just feeling all around icky. Thank you! :}

I agree. I did the same thing, they prescribed me a total of 16 pentasa 250 per day. I took it begrudgingly for a while and stopped one day thinking I would save myself by not taking the pentasa. this was years ago. I am now back on pentasa because I think I need it now. however, it's hard not be scared of the short and long term side effects of any medication.