I have Crohn's disease recently diagnosed

[greenbriar]

only my doctor has been careful to only list Iletitis (sp) so as not to create paperwork to mark me as a pre-existing condition candidate...as a result, it is hard to get the pain meds I need sometimes


this bill will help me and not stigmatize me

[emulatorloo]

1. That is wonderful news. I am happy to hear you will get the medication you need now.

[timeforpeace]

67. "my doctor has been careful to only list Iletitis" Careful lest insurance fraud or malpractice is

alleged as a consequence of that action. Anyway, good luck, you seems beset by more ills than any ten people.

[Muttocracy]

2. Glad to hear it. My grandmother had pre-existing conditions and my mom grew up w/o insurance

as a result. Both my grandmother and mother have had a number of health problems as a result.

[HughMoran]

3. Great to hear

My boss can't change insurance due to pre-existing condition - it sucks!

[whathehell]

4. Good for you...I have Crohns as well...It hasn't been that much of a problem

I just take eight bullet sized tablets of Sulphasalizene a day...Hope yours doesn't cause you much trouble either.

[greenbriar]

5. I spent several days in July in the hospital and Monday/Tues this week

and have been in severe pain all week

infact, I have taken 4 lortabs since 8 pm with minimal relief and I can't take anymore or I will run out before I can refil

I am posting while propping a heating pad on my back


it is very painful

I take 20 pills a day to "contain" the disease and then 4-6 pain meds a day on bad days

I will welcome not worring about having a pre-existing condition

[whathehell]

13. I'm sorry to hear how awful it is for you...I must have a very "light" case.

[Daphne08]

47. My oldest son suffers from Crohn's as did my uncle.

I understand how difficult it can be.

[artfan]

6. Crohn's sucks

As I write this I am suffering from my nightly cramps but at least I have good medical. My remicade treatments are a big help but there is no way I could afford them without insurance. I have a cousin who lose his house, business etc. because he has it too but the crohn's made his insurance increasingly expensive and one thing led to another.

[greenbriar]

7. which is why my gastro doc didn't want to list "crohn's" and

why it is hard to get the pain meds to control it

Now we can say Crohn's and become more agressive

[Ms. Toad]

55. Actually, not listing it isn't very helpful.

For a couple of reasons:

The questions on the insurance forms are generally broad enough to catch the mis-diagnosis. You have to answer the questions (they aren't based on medical records) and they generally include the range of diagnosed with, treated for, evaluated for, should have been (any of the preceding). If you don't answer honestly, your insurance can be yanked not because of a pre-existing condition - but for providing false information.

The questions always include what medications you are taking. Based on the numbers of pills you are taking, I'm guessing you are taking either sulfasalazine or mesalamine - which any insurance company will realize is treatment for either crohns or ulcerative colitis.

If you currently have coverage you are entitled under the current to continue that coverage indefinitely. If your employment ends, you run out COBRA as long as it lasts, then convert to an individal policy under HIPAA. It will cost a fortune, but coverage is available. I can pretty much guarantee that with a diagnosis of ileitis, taking the meds you are taking, you will not be able to get insurance outside of a high risk pool anyway.

And, finally, as you have discovered - it makes it difficult to get adequate treatment.

I support the bill passed because it will make insurance more available to people with chronic illnesses - but would encourage you to talk to your doctor about accurately recording your diagnosis so that you can get proper treatment now. Given the diagnosis s/he is using, and the medication you are on, it really won't make a difference.

[Name removed]

56. Deleted message

Message removed by moderator. Click here to review the message board rules.

[endless october]

8. i was diagnosed with ulcerative colitis.

my doctor was forced to write it down as something else, as UC could have made me uninsurable.

[WillYourVoteBCounted]

9. did you know that ADHD is considered a pre-existing condition

to some insurance cos.

Or "high risk".

Ironically for policies that wouldn't have covered ADHD care or medicine anyway.

[Mythbuster]

10. Yuck! I hate to hear you have Crohn's

I know all about the stigma you're talking about. I have Progressive MS, and that makes me pre-existing everything, "we don't cover that" etc, etc. I pray this is the honest beginning to resolving our current horrid system. Be Well.

[pansypoo53219]

11. have you heard of hook worm as an option?

they just did a story on it on this on Radio lab-NPR.

[Hekate]

12. Helminths, not hookworms. I read about this while my hubby's ulcerative colitis was raging...

He would have tried it, believe me, but our internist pooh-poohed it. That was before he finally went to a gastroenterologist who put him on a whole lot of other stuff that worked instead.

Hekate



http://gut.bmj.com/cgi/content/extract/57/8/1182

[pansypoo53219]

21. well, screw the AMA.

i'm will to try. i can be dewormed if it doesn't work.

[Hekate]

24. Be sure you know what you're doing, is all. Look up Helminths online for the medical reports.

Some parasites you really don't want to mess with, after all. Best of luck with your gut.

Hekate

[lonestarnot]

14. I'm sorry you have that rotten disease Greenbriar. You have a good doc.

I'm root'n for the bill just for you!

[REP]

15. Regional ileitis is an archaic term for Crohn's

That is the old name for it, since it often occurs in the terminal ileum, but can affect any part of the GI tract.

[greenbriar]

18. Interesting

we wondered how the doctor could do this and try to make it non pre-existing

[Ms. Toad]

57. Can't really.

Another term is crohns ileitus - designating the portion of the GI that crohns has impacted (since it can hit anywhere).

My daughter's ulcerative colitis often just shows up as colitis (not to avoid pre-existing conditions, which she clearly has).

[Garbo 2004]

16. While this bill is far from perfect, it's my sincere hope that the final results

will be of vast benefit to so many of us in such situations. And another step toward universal health care.

Your doctor (he or she) is a "mensch."

[greenbriar]

17. what is a mensch?

not familiar with that term.


thank you all for the well thoughts

[BlancheSplanchnik]

20. Mensch is Yiddish

it means a "a good man", or good, decent soul. Kind of saying someone is a good egg.

[SharonAnn]

44. I t means even more than "a good man". A moral, righteous, responsible man.

[BlancheSplanchnik]

49. yes!

Oy vey, I knew I didn't quite have it right!

[Tommy_Carcetti]

19. Recommended.

I just wish more people here would see the forest through the ideological trees.

[greenbriar]

22. thanks

yes, but if we do, then the sky is falling crowd just come out with insults

[Ms. Toad]

58. I've been getting landed on a lot recently, too. n/t

[BlancheSplanchnik]

23. My heart goes o ut to you!

I believe there will be many improvements to this bill---as it is now is a foot in the door. As disgusted as I am about the insult to women, I believe that was "accepted" only to shut the fuckbrains up and get the damned thing in the door.

ANYWAY, I grew up with Ulcerative Colitis. Blood at age 7, finally emergency surgery, total ileostomy at 19. More surgery later. Back then, there was catastrophic insurance and my parents were the paranoid sort, thank god, and able to get it.

I wish the Inflammatory Bowel Diseases were as important as other more "glamorous" illnesses, so that research monies were commensurate with the numbers of people affected, and so that there were more efforts at public education. The suffering is horrendous and the emotional cost and cruelty of the uninformed is almost as bad. It's taken a lifetime of concerted effort to overcome the traumas.

[greenbriar]

29. not to mention the lack of social activity because of fear of "losing control"

of things

also the depression

[BlancheSplanchnik]

30. mm hmmm

I know! I pretty much grew up in a bathroom. I don't know much aabout what a "normal" childhood/adolescence/young adulthood is like.

But it did hone my compassion.

here's a webiste, might be helpful. It's a supportive and informative community

www.ibdsucks.com

[greenbriar]

31. thank you

can I ask, did you have to have a colostomy ?

How does one function with that?

[BlancheSplanchnik]

32. I have an ileostomy

got a bag at age 19. that was fun. Not.

patient care was awful too at that time -- 1977; I wasn't told that I was going to end up with a bag, but frankly I was so sick that the shock of it didn't dawn on me until later. A staff psychiatrist looked in on me once about 2 weeks after surgery, but took my initial euphoria at being suddenly pain free for a healthy adjustment, and never came back.

Luckily, I was able to get an internal procedure, which was experimental at the time, done. I had been so sick that they needed to put off removing some diseased intestine until later, so a second surgery was a given. In the interim, I found out about the Koch Pouch, though I don't think it's done anymore. I knew that I had to have it done, because I couldn't live with a bag. However, unfortunately, surgery of any kind is not advised for Crohn's patients.

With a bag, well, it sucked; yes it was a far sight better than active end-stage U.C., but after enough time to get healthy again, the grossness, the frequent leaks, and other humiliations got pretty unbearable. Of course, at the age of 19...well...

[wiggs]

25. Glad the bill will help. If you don't mind me asking, how was the diagnosis made?

What test? CD is one of the conditions that matches symptoms I've been having...working on it with my doc, but taking care of some other stuff first.

Without insurance, just figuring out what's going on would have cost thousands of dollars. Fortunately, I'm covered.

[greenbriar]

27. I went to 3 different gastro docs, bugged the piss out of my pcp doc

had 3 colonoscopys and 2 endoscopy


ended up with pancreatitis and antoher scope and cat scans and x-rays

[happy2bhere]

26. I am glad this legislation will help you

I think it might help more people, especially poor people, than many DUers realize.

I was just reading about Elizabeth Kucinich and how she began eating a vegan diet as a child when her mom was diagnosed with Crohn's disease...

"Even as a teenager in England, she played hooky to lobby for her favorite organizations. And she shared this: "I was quite a heavy child." Really? "Yes," said Kucinich. "I was quite picked on by children at school. Tall, overweight, ginger......"

How'd she lose the weight? Her whole family went vegan after her mother learned she had Crohn's disease, the inflammatory bowel condition, and managed it by cutting out meat and dairy products. And yes, we'll probably hear more about this -- childhood obesity and nutrition will be part of her work at PCRM."
http://voices.washingtonpost.com/reliable-source/2009/1...

[greenbriar]

28. thank you for the link

wonder if I should go Vegan? I will be seeing my gastro doctor in 3 weeks or sooner if this flare up doesn't end. I am going to talk about this with him.

[BlancheSplanchnik]

35. you might find discussion about it

on ibdsucks.com

worth a look......

[AllieB]

37. Some people cut out dairy and it seems to help.

I cut out grains-was allergic-no more running to the bathroom! Crohn's can be triggered by food allergies. My friend has it and she's allergic to nuts and certain fruits (and she had very bad bleeding).

[mstinamotorcity]

33. Lost my brother

to Crohn's Disease. That was ten years ago science and meds have gotten a lot better since then. Wishing you all the best and sending up my strongest faith based signal for your good health.Peace and Love!!!!!

[greenbriar]

36. can I ask what was the cause of death? Crohn's or complications

I feel so bad and have all week that I just know they are missing something

[mstinamotorcity]

39. Yes you may

It was mostly the complications. They had started removing parts of his anatomy bit by bit finally well you know the rest. Listen i don't have all the numbers i used to when he was alive but i will check with my mom and see if i can get you some numbers. It took us a long time to figure out what my brother had. But they believe we had a genetic link because my father and four of his brothers died before they forty. my brother was two days shy of his thirty third birthday i just counted the years i did not know it had been that long.My mistake it has been fourteen years since he has been with us. Time has once again caught me off guard. Give me a little time and i might can get you my moms email address with her permission,if she accepts she will be more than happy to answer all your questions.And if you ever need a friend mstinamotorcity is available. Peace and love

[greenbriar]

43. thank you very much

and hey, welcome to DU

[mstinamotorcity]

48. You are are very welcome

Thanks glad to be back. Its 5:35 in the morning and i am on my way to work(lucky to still be working)will call my mom this morning in between shifts. She is a real panilla under the pillow(real square) she was in church all day. Missed everybody while i was gone. But make no mistake i am back an talking s--t.Peace and Love to DU

[mstinamotorcity]

50. Got that email address

email me with a return mstinamtrcty@hot mail

[greenbriar]

51. will do

thanks

[Ms. Toad]

59. That's part of the reason they don't generally

recommend surgery for crohns - it moves. Once you removed the diseased bit, it often moves somewhere else in the GI system.

[Ms. Toad]

60. Do join one of the online support groups

they are a really wonderful source of both information and support.

I don't know anything about ibdsucks, but I spent a lot of time on (and discovered the trigger for my daughter's flares from) alt.support.crohns-colitis

[Horse with no Name]

34. My Doctor tried that with my asthma

labeled it "Reactive Airway Disease".
However, there are only so many episodes of being hospitalized with status asthmaticus BEFORE the insurance companies catch on.

[greenbriar]

38. I know

I wondered about this last hospital stay this week and how it would be handled. I guess we will find out when the bill comes

[Horse with no Name]

40. If you don't have a pathology report diagnosing you

definitively with CD, chances are you will slide on through.
Good luck and hope you feel better.

[greenbriar]

41. as far as I know CD has only been talked around

with the understanding that it was what I was dealing with

[Number23]

42. Thanks for this perspective. It seems in line with what alot of DUers with preexisting

conditions and serious health problems are saying. That means a lot to me.

[greenbriar]

45. have spent this weekend doing a lot of research. Did you know the QB from the Jags

has Crohns


I am curious to know how many more celebs do

maybe they can bring awareness

[condoleeza]

46. The Potty People is a good resource

http://www.perskyfarms.com/phpBB2/index.php

I have both LC and CC, two forms of Microsopic Colitis, recently diagnosed after 3 years of being sick and major weight loss. Doing what I can to avoid steroids by using non-prescription meds and diet changes that I have learned about through my research and working with my Naturopath. So far what I've tried seems to be helping (knock on wood). I know that Crohns is different, even though the symptoms are often similar. Very frustrating to deal with.

You might find some interesting information, or links to good information on the above site. I have recently ordered the tests from Enterolab.com and hope to find out definitively about genetic markers and food issues, most specifically celiac. It will be a long road to health, I am sure. I hope you are able to stay off the insurance "pre-existing condition" list, but I fear it is only a matter of time. I was diagnosed via biopsy so guess I am already screwed. What I have is 9-1 a "women's disease", so...little research on a cure has been done, only research on drugs you will have to use for life. What incentive is there to CURE anything??? NONE.

[greenbriar]

52. what are the steroids people are talking about I take Asacol and Dycicyclomine..sp

and recently my husband got some probiotics for me to try

[sketchy]

53. There is an approach that uses probiotics with diet to treat Crohn's, celiac

disease and colitis. It's called the Specific Carbohydrate Diet. Have you looked into it at all? I can attest to the fact that it can work -- it did for me -- IF you're careful not to eat certain prohibited foods (grains, refined sugar, starch among them). Elaine Gottschall who wrote Breaking the Vicious Cycle began researching the diet in an effort to help her young daughter avoid having her colon removed. The diet did help her daughter, and she devoted her life (she died several years ago) to spreading info about the diet. Here's the website that explains the basics:

www.BreakingTheViciousCycle.info

Best of luck!

[sketchy]

54. kick n/t

[Ms. Toad]

61. Prednisolone, generally, is the first line

My daughter was on it for 15 days with a 50 day taper just after her diagnosis. It took a year for her to recover.

It is a miracle drug, and absolutely the right thing for her at the time - but we will do almost anything we can to avoid needing to use it again. It is also the drug from hell.

I have no personal experience with it, but I have heard good things about VSL#3 http://www.crohns.net/page/C/PROD/Probiotic/VSL3000 (My daughter hasn't needed it until recently, and is currently in a drug trial that prevents trying new treatments until May)

[greenbriar]

62. what does prednisone do? VSL is what hubby just orderd and got for me

I have taken it since Friday

waiting and hoping it works

[Ms. Toad]

63. Prednisone cures everything.

Almost literally.

The miracle: It shuts down inflammatory responses (which is at the core of IBD). It is also given for pain (I had a cortisone (a relative) injection in my back for a back injury, my spouse took prednisolone for a week for excruciating shoulder pain of indeterminate origin, people commonly take it for asthma). For all those things it provides faster relief than anything else, and is about the only thing that works in some instances.

The hell: It huts down your body's adrenal glands - so if you take it for more than a short course you have to gradually taper off so they can wake back up slowly or you can die. For a 15 day course, our daughter's taper was 50 days. It has a number of unpleasant side effects - it can make you ravenous (my daughter packed an additional 20 lbs on her 40 lb frame in about 2 weeks), it accentuates whatever you are feeling - the highs are way high, and the lows are the bottom of the barrel (after my daughter was off pred for a while, she tried to climb out of the window of our car at 40 mph because she was mad that I had picked her up from the babysitter; the only solution we found to get past the extremes was to just stop dead and hold her tight so she couldn't move until it passed), hair growth in odd places (her forehead, all the way down to her eyebrows), it is immunosuppressive so you need to be careful you don't acquire other infections, if you are diabetic expect extremely high blood sugars (my spouse's spiked from under 100 to over 300) - and it can actually cause diabetes in people susceptible. The emotional side effects don't disappear immediately when the taper is done - our daughter's took a little over a year to disappear (she started in June 1994, and had her last steroid blow-up around Halloween in 1995.) They have gotten more sophisticated in dosing since then, but the basic principles (particularly for long term use when you take the same dose every day for a fixed period (rather than a taper pack, which starts the taper the first day) - as is often needed in IBD) remain the same.

My daughter's doctor told us none of the side effects when he put her on it - and she experienced nearly every one that could be observed without medical tests. I wish he had, so we had had a choice. BUT, given the choice - since our "baby" was a clingy little girl who was about to head to kindergarten in diapers because she couldn't trust anyone other than her moms to get her to a bathroom in time, we would still have chosen to put her on steroids. Second BUT - we would do almost anything to prevent a second round.

As to VSL, what I have heard is that you need to give it a month or so to know if it is working. It populates the gut with healthy bacteria that promote good digestion/food processing. Like eating strong greek yogurt, for example, but the good bacteria in VSL#3 is targeted specifically to what is needed for folks with IBD.

[greenbriar]

64. Thank you so much for the information

I am ready to try almost anything, but prednisone scares me.

I am going to give the VSL at least 2 months worth to see if I can notice any changes.

I currently take anywhere from 4-6 low dose hydrocodone for the pain. It is not enough but my doctor is a pansy and really doesn't' understand the pain I have.

Put it this way, if he had to live with this pain, he would be offering me an unlimited supply. I do not take them to get high, I take them to be able to function. Tonight we went to the grocery store and after 30 minutes, I was writhing in pain

[sketchy]

65. I know that pain. (It's way up there on that 1 to 10 scale)

An overnight in the ER with an intestinal blockage started my Crohn's "journey" in late 2002. (I had been sick for a couple of years, but that started me on an intensive research spree on the Internet.) Believe it or not, changing my diet took care of the problem, and quickly too, so I didn't have the years and years of suffering many people do. A few comments up on this thread I recommended you look into the book and website "Breaking the Vicious Cycle," by Elaine Gottschall.

Here's another great site that explains this whole diet thing better than I could:

http://www.nomorecrohns.com /

[mdmc]

66. --