You’ve Probably Heard It All Before…

Chelsea coliitsIntro:

Dx: Proctitis 1998, Pancolitis in 2009. GI verbally called it Crohn’s in 1998 because of family history but I recently found out that he never actually put anything except “mild Proctitis” in my chart. I went without insurance from early 2000s until 2009 where ER visit for pain and bleeding and subsequent colonoscopy showed “Pancolitis most consistent with Ulcerative Colitis”.

Current Symptoms I’m Having:

I’ve been flaring badly for about a year with no insurance. ULQ sharp pain, cramps throughout, nausea, lots of blood, lots of D w/ urgency everyday. 2 ER trips and hospital stays in the last 4 months to get it temporarily under control while awaiting an appointment with the only GI in town who will see me with no insurance, no job and no money.

My Story:

After my initial flare in 1998, I was doing pretty good with no significant flaring until 2006 right after I quit smoking. My UC has not been fully controlled since then. Because of having insurance only sporadically, I’ve had to take whatever patchwork charity healthcare that I could get, which is mostly ER visits, short hospital stays, donated iron infusions because I lose so much blood, donated medications or ones that I can afford like Prednisone. I’ve tried Imuran, Colazal, Apriso, Canasa and Cimzia with no success. Prednisone usually gets me somewhat back in shape but then I can’t get off it and it wreaks all kinds of havoc on the rest of my system.

My biggest concern is having this disease

in the US with no insurance.

I have applied for Medicaid but I’m still waiting to hear back. I was let go from my last job because I couldn’t stay at my desk and out of the bathroom or the hospital or doctor office o r iron infusion room or get out of bed some days. Finding a new job is proving to be impossible for the same reasons. I applied for disability and I’ve been denied twice. I’m locked in a weird vicious circle of not being able to find a job because I can’t get the flare controlled and not being able to get the flare controlled because I can’t find a job and therefore don’t have access to insurance or doctors to get the flare controlled. I don’t know where it ends. I’m frustrated. It feels like if the Medicaid will come through and at least temporary disability until I can get well, then my life will change for the much, much better. I’m not sure how else to bridge the gap between sickness and health.

Where I’d like to be in 1 year:

In a year I’d like to have real and consistent health care based on what my mind/body’s requirements are, not simply what I can afford.

Medications:

Only Prednisone has put me even close to remission since 2006
written by Chelsea
submitted in the Colitis Venting Area

Tags: disability





10 Responses to “You’ve Probably Heard It All Before…”

  1. JamieIsLame
    JamieIsLameApril 25, 2012 at 7:41 pm #

    wow, this sucks for you, I’m sorry to hear you’re not having an easy journey with colitis.
    I’m un-insured too, however, I’m lucky that I live in such a great country (as bad as the government here is..) because in Ireland, I’m entitled to a medical card for free healthcare because I’m not working or a student because of my colitis, and even if I was, there is a scheme that means I wouldn’t have to pay more than €144 a month for all my medications, where as in the states with no insurance, you’d be looking at thousands (literally, thousands for remicade and lialda every month.) so I count my blessings for that.

    you’re really stuck, I thought about suggesting surgery, but obviously that isn’t really an option if you don’t have insurance, and you can’t get the insurance because insurance companies dont like taking your money if they know they’re gonna be giving it back to you.

    I really do feel for you right now, and although my comment is probably useless, know that there are people in the same situation, and that we are thinking of you! and I really hope that something comes along to help!

    hopefully you’ll hear back from medicaid and it’ll be good news, and you should definately apply for disability again, I applied 7 months ago and i’m still waiting to hear back, but I honestly see no reason why people like us should be denied, we’re unemployed and unemployable because of illness!

    good luck with your colitis adventures! i wish i could help you more.. but all I can really do is let you know that I’m praying for you (I know most people dont see that as helping, but colitis has made me a sucker for Jesus..)

    – Jamie

  2. Sara RingerApril 25, 2012 at 9:18 pm #

    My worst flare-up, the one that resulted in my j-pouch surgeries and six months in the hospital, was all with no health insurance. I’m so sorry you’re experiencing this. I’ll start with the honest truth first: I have a HUGE amount of medical debt. So much that it would scare you if I told you the amount. With that said I now have medicaid and it covers everything. I feel blessed that I was finally accepted. It took until I was very sick and in the hospital after my surgeries to get accepted. Have social workers at the hospital help you. They did all the work for me because I was very sick at the time and that helped a lot.

    I made the mistake of putting off a lot of treatment because I had no insurance. I was on prednisone, asocol, and mesalamine enemas that I was paying for out of pocket (the enema’s alone were over 100 dollars a week). But I couldn’t try anything else or really do much without insurance. By the time I was hospitalized I was already so so sick that I had 3 blood transfusions and we just couldn’t save my colon. I wish that I had went in sooner for treatment because I have medical debt anyway. I am filing for bankrupsy this year and I don’t feel ashamed about that. It wasn’t my fault I got sick or that I didn’t have health insurance because I was not able to work back then.

    Don’t put your health to the side. I’m so sorry and I can truly relate.

    Sara

  3. Chelsea
    ChelseaApril 25, 2012 at 10:13 pm #

    Jamie,
    No, it’s not a useless reply at all. It’s nice to know that you’re thought of when you feel hopeless and utterly alone. It means all the difference, actually. Thank you for your well wishes and prayers.

  4. Chelsea
    ChelseaApril 26, 2012 at 6:46 pm #

    Sara,
    Thank you so much for your understanding and sharing your story with me. I appreciate the sage advice about not putting off my health care just because of medical debt. I have plenty of that, myself and when you’re so sick that you’re getting blood transfusions, all of a sudden, none of those bills matter at all. I completely understand what you’re saying to me. I wish you success with your bankruptcy and a clean slate for you to start on and make a wonderful life for yourself. Best wishes.

  5. JustinApril 27, 2012 at 8:22 am #

    I feel for ya Chelsea. It seems this disease leaves just about everybody in some kind of medical debt.
    Since there’s not to much advice I can give you regarding your vicious cycle of employment/unemployment, I can at least relay to you what has helped me get well. After I got out of the hospital I was taking Asacol and Prednisone. I practice Chinese Medicine so I was uncomfortable with the idea of that to say the least. I only took the asacol for 2 weeks out of the hospital and followed the tapering of the pred as prescribed. However, since getting home I had started a Macrobiotic diet. Similar to a vegan diet, but it’s a lot of traditional Japanese food preparations. If you can’t afford medications, healing through foods is a great option for you. You have to eat anyway right? (well, right now you may not feel like it :(
    First off, if you haven’t figured this out yet, the Dr.’s “low residue diet” is a crock. Most important for you right now is: no sugar, processed foods, baked flour products, dairy, spicy food, and meat (the ammonia byproduct of meat in the intestines during a severe flare can slow healing). I would also advise against any cold or raw foods and drinks. Foods you should try and have: rice porridge will strengthen the intestines and help with the runs, lots of greens like kale/collards preferably blanched (these will help build your blood), sour kraut, cabbage (heals ulcers), peeled and sliced green apple will help stimulate the appetite and enzymes, miso soup or any soup for that matter, they are easy to digest and full of nutrients (just stay away from low quality, non-organic, high sodium canned soups). You could even just start with broth. This isn’t a weight building diet but by nourishing your organs with clean, organic, easily digestible food you will give your organs a chance to rest. Try and cook with little to no oil and use only a high quality sea salt. There is so much more to it than this but it could at least get you started. It sounds as though your stress will only feed the situation, so having nervine herbal teas like chamomile (also good for cramping), skullcap, catnip, etc. would be a good idea. Also, if it came down to it, start smoking again until you get this under control. I’ve heard of doctors who recommend 2-6 cigs a day to alleviate symptoms and that it’s particularly effective for people who use to smoke. Smoking sucks, but if it will prevent a total collapse of your system so you can get the UC under control? Just a thought.
    Good Luck!
    Justin

    • Polly
      PollyApril 30, 2012 at 2:56 pm #

      Justin,

      Thank you for writing!
      I am very interested in what you had to say. It is very similar to what my alternative medicine/holistic doctor has been telling me.

      Can you share anything else with us? What do you do to maintain remission? Are you taking any supplements? What diet do you follow?

      Thanks so much, all the best,
      Polly

  6. Chelsea
    ChelseaApril 30, 2012 at 1:19 pm #

    Thank you so much for your advice, Justin.

  7. Joy McCormickApril 30, 2012 at 1:29 pm #

    I have to ask if you’ve trying changing your diet?
    I say that because last year I changed my diet and went from major pain and flareups to no meds and painfree! It’s amazing and I’ve never better IN MY LIFE!
    The big key? I stopped eating ALL REFINED SUGARS and foods that contain them and all useless carbs.
    Was it easy? NO. Especially the first two weeks. I was a total SUGAR ADDICT. We are talking someone who ate ice cream for breakfast, and lived on sweets.
    The first two weeks I went through withdrawls, and was miserable.
    But after that, and since then, I don’t even crave sugar. And I feel so incredible, I would NEVER consider going back to the diet I had before!
    So now I eat meat, cheese, eggs, lactose free milk, and all the fruits and vegetables I want. I also eat some breads, but only those with a high fiber content. I don’t eat pasta anymore. That’s probably the one thing I miss occasionally, but deal.
    My doctor was amazed at how well I’ve done and is telling all his other UC patients it’s worth a try. He took me completely off the sulfasalazine and I am symptom free! I feel like a new person.

    The best part is it doesn’t cost anything to try (I also do not have any insurance) and it’s a lifestyle that can be lived with.
    I am not saying it will work for everyone, but you can try it, it worked for me.

  8. Chelsea
    ChelseaMay 4, 2012 at 1:00 pm #

    Hi Joy,

    Thanks for your reply. Having dealt with this for 14 years, I’ve been through a million different ways of eating. Eliminating sugar, eliminating gluten, eliminating dairy etc. Nothing has helped. Although I can’t eat roughage or things like popcorn while flaring, diet doesn’t cause my flares or remission, unfortunately.

  9. JenniferFebruary 27, 2013 at 8:32 pm #

    Hi Chelsea, so sorry to hear about what you’re going through! I’m just trying to change my insurance from major medical to one that covers brand-name drugs (since of course those are the only ones that work on me.) I am really fortunate to have a doctor who gives me a lot of samples… she gave me $5000 worth of meds for my first flare. I’m going through my second now, and was able to get some. I think I can get my insurance switched but am waiting to hear back (it’s in underwriting and I was warned that my rate might be a lot higher now that I’m not “tier 1″ healthy.)

    I don’t know if this is a remote possibility, but I live in San Francisco where there is free health coverage for anyone who lives in the city. A friend of mine was diagnosed with cancer and has had 2 surgeries… all free. She’s getting really amazing care. Amazing to the point of, “why am I paying out the nose for insurance premiums plus thousands out of pocket when I could go on the city plan.”

    Just a thought :-) It’s lovely out here, although not cheap. But easy to find a roommate.

Leave a Reply