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Crohn's complications and flareups

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Crohn's Disease
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Posted 3/20/2011 6:19 PM (GMT 0)
Hi,
New member here!
I was diagnosed with severe Crohn's Disease in the terminal ileum during March, 2007. Since then, I have taken every known prescribed medication from my GI doctor and we have found that Humira works best for my case. The unfortunate part is that my insurance provider found a way to discard me as customer and now I have no access to the drug.
I have had numerous "flare-up's" over the past year and the disease has really taken over my life. I am dealing with the following:
1. Anal Fissures (surgery performed)
2. Anal Fistula (surgery performed)
3. Abdominal pain waking me in my sleep
4. Extreme fatigue
5. Fever's of 101
6. Flu like symptoms every 3 weeks (body aches, sweating, joint pain, fever)
7. Yellow mucus diarrhea which started about 2 months ago, (it was always just diarrhea in general before then).
The toughest part in the past was the diarrhea but I have grown to accept the problem. Currently, the hard part is the flu like symptoms and fatigue because is becoming very repetitive. The symptoms do only last 18-24 hours but they are severe. The doctor told me on Friday that an ER visit is recommended but I have decided to wait and see what my CAT scan will show, (which is scheduled for tomorrow morning).
Are there any members out there who have had similar issues? If so, what was your outcome? I know most of what I'm dealing with is Crohn's in general.
I'm sure I will find comfort in hearing your stories, (especially if they relate to mine).
Thank you in advance!
Posted 3/20/2011 8:33 PM (GMT 0)
I wish you the best. Remicade was taking me to the poor farm and then I found out about something called Remistart.
Posted 3/20/2011 9:16 PM (GMT 0)
Chrony, I feel your pain in terms of having soooo many symptoms from my chron's that just aren't getting better on the meds I am on. I know not having insurance can be a big pain in the keister, so my advice would be to research why they dropped you. If they did it because of your illness, then you can go after them. One good thing that came from the revamping of the health care system is that insurance companies cannot drop you for preexisting conditions. You can also try getting another insurance carrier as they cannot legally bar you from getting coverage. Just some ideas. Thankfully, my husband is an active duty Marine, so my meds are fully covered by his insurance, otherwise, we would be in a whole lot of hurt right now because I am on Pentasa, Methotrexate, and now Remicade (and none of them are working for me right now! Sniff.). Good luck and I hope you can get the coverage you need soon! Also, you may want to look into social security benefits- if your disease is serious enough (make sure you have all that beautiful documentation), you may be able to get some benefits that would also include medical coverage. Sending prayers your way.

LeeAnne
Posted 3/20/2011 10:12 PM (GMT 0)
Crohny, hello and welcome, it seems you've had your fair share!! As for the fatigue, I'm afraid I have
nothing to offer, except to tell you you're not alone. I struggle everyday with it. I have so much I wanna
do, but no energy to do it with. It really is a pain. Sorry I can't help, but on the whole you should find this
forum a great help!!
Posted 3/21/2011 12:33 AM (GMT 0)
Welcome! Just curious if they have tested for c-difficile infection?
Posted 3/21/2011 2:04 AM (GMT 0)
Chrony,

I'm also a noob here, but these people are awesome. I don't post much, but I do read.

Here's a tidbit that can help if you think you want to apply for Social Security disability. My wife is looking into it, too, since her fatigue is such that she finds it next to impossible to work and try to get better. http://www.disabilitykey.com You want to be successful your first time through the process and I believe the goal of the site is to help you navigate and prepare for that.

heatmiser, is there any anecdotal evidence regarding C. Difficile and UC/CD diseases? As in, how many people may be diagnosed with UC/CD who really had C. Difficile infections?

--J

Post Edited (Jorel) : 3/20/2011 8:09:29 PM (GMT-6)

Posted 3/21/2011 4:41 AM (GMT 0)
I second that there may be a secondary infection , possibly c dif or something else, some type of overgrowth in addition to the cd. U can talk to you doc about cipro and flagyl or other antibiotic. Also, look into probiotics, that might help.
Best wishes.
Posted 3/21/2011 5:59 AM (GMT 0)
Thank you for the responses.

It looks as if my CD has gotten out of control. Tomorrow I will have an abdomen/pelvis CT scan to hopefully give some verification, (and I say hopefully because every treatment & test is on a "cash basis" for me right now!).

Being 38 years old and without insurance is a frightening feeling, (especially with CD). I have only been without insurance since December, 2010. Long story short, it looks as if my carrier dropped me over a change of address issue canceling my premium as well as being $50 late one month due to the issue. I have tried to fight them over the phone but have had no luck as of yet. They were looking for a way to drop me and found one!

As most of you with CD know, life with the disease can be depressing. I find my condition to be getting worse & worse. I really enjoy what I do for a living and if my CD continues on a downward swing, my career could be compromised a bit. After having the anal fistula surgery combined with Crohn's can be very scary at times. When you combine diarrhea and a weaker rectum following surgery, getting to the bathroom has to happen quick!

For those of you who have issues similar to mine as well as more severe, I certainly feel for you. I will say though, it is certainly comforting having people to discuss it with.

Thanks again!
Posted 3/23/2011 4:18 AM (GMT 0)
As for the insurance, have you looked into coverage through your state? My cobra ran out at the end of november '10, I got insurance through Illinois CHIP. It cost a few bucks, less than cobra by about 200/month. That coverage is for people in our crowd with preexisting conditions. Might be worth a look. If you need help finding it, I'll try to spare a few and help ya look into it.
Posted 3/23/2011 3:39 PM (GMT 0)
If you take Humira and your insurance does not cover it, Abbott has a program called My humira that may assist you for as little as $5.00 for three month supply. it is a process you have to go through, but in the end it is worth it.
Posted 3/23/2011 3:57 PM (GMT 0)
Flyers2001 is right, contact the drug-rep directly, sometimes they have promotions that they can set you up with on a semi-permanent basis. As for the other symptoms, I'm sorry. Early on in my journey I dealt with D by living off pepto bismal tablets: ate them like candy. Just be careful not to swing the other way and get constipated!

Best of luck-ZZ
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