Crohn’s…Again?

by on Thursday, August 5, 2010 16:21
This entry is filed under: Crohn's

Hi all! So for those of you who have followed my story for the past few months you know there have been many ups and downs.  New theories emerged, the one most perplexing and possibly exciting one being that perhaps I didn’t actually have Crohn’s disease-maybe just a horrible case of pouchitis due to poor pouch function.  Several tests later, and another Prometheus test result just confirmed Crohn’s.  I heard this back in 2006 for the first time, after several post-surgical complications and made my peace with it.  So, to be told that I “might” not have it was sort of annoying, sort of exciting, but I guess in reality, I knew that my luck was just not that good!  So back to Crohn’s disease and back to my perspective that it really doesn’t matter what I have as long as it can be treated.  Treatment, however, brings a whole new scope of problems.  Turns out now that since this is (once again) permanent, and not yet curable, that I have some decisions to make.  I am on tons of meds-weekly Humira shots being one of them, and lots of antibiotics.  I take Xifaxan and am currently taking Augmentin for a sinus infection.  Gosh, it makes me feel SO much better.  Unfortunately, I can’t pump myself THIS full of antibiotics on a regular occasion, so I have some thinking to do…I’ve been going to physical therapy to try to get my pelvic floor muscles to relax so I can poo properly.  If this doesn’t work and things don’t improve (I’ve had mild to moderate inflammation despite being on all these drugs), it’s time to say ta ta to the pouch and HELLOOOO to an ileostomy again.  Don’t mind to go this route if it would help, but my surgeon suggested basically amputating the pouch to do an end ileo and I’m not thrilled at the prospect of losing what little guts I have left.  As you also are possibly aware, I was fired from my job because I was absent a lot at the first of the year due to my ongoing health issues.  Thankfully, I am getting unemployment benefits right now and have my health coverage through COBRA, but neither of those will last forever, so I need a plan.  My mom keeps suggesting disability.  Part of me agrees with her-most of the time I am too tired to do much of anything, but then I think, “but maybe I can get a work from home job!”  I’ve been applying for stuff, but I really need something flexible, and not many of those exist in this economy. Le sigh. What to do?  I don’t want to feel like I am “giving up” on a “normal” life, and it’s just not my style to not work for my earnings, but I guess I need to be realistic.  I just feel defeated when I consider that option. Should I  just bite the bullet and apply for disability?  Most importantly, I have to have health insurance and I don’t think I can find a full-time job that will provide that and allow me the sick leave which I will likely need.What would you do?

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7 Responses to “Crohn’s…Again?”

  1. avatar

    Erin says:

    August 6th, 2010 at 10:31 am

    Lizz, it’s your old fellow Crohnie friend from KY! Sorry to hear you have been going through so much. I’ve heard that it’s pretty hard to get approved for disability when you are our age, but if you have had that much trouble, I’d say go for it. I know someone who gets disability but is also permitted to work part-time (there is a salary limit), so maybe that would be an option for you. Being in HR, I can tell you that the job market is very tough right now and I don’t know that you could find something allowing you what you need right now. But, it wouldn’t hurt to look while you decide whether to apply for disability and while you battle the fight that usually follows. I tried to email you but the old address I had didn’t work anymore. Email me if you want to chat. Take care!

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  2. avatar

    Jackie Z. says:

    August 8th, 2010 at 6:30 am

    Lizz. Wow lady. Ok first matter, after a few years of doing treatment for my MS, my neuro said something along the lines of “you probably have MS”. This totally messed with my mind, I was upset, I was frustrated because I felt like if there was small chance it wasn’t that, then I should not have been shooting myself up with drugs. Blah blah. Long story short, He later retracted it, and sadly enough it was easier to just accept that I had it all a long, as opposed to accepting that I didn’t have it, got wrongly diagnosed and was spending up to 30K a year on meds for no reason.

    As for the job hunt, I too am newly fired and living of the government. My insurance dropped me shortly after…ah life is complicated these days. If you find a work from home job send it my way. I do, do some freelancing from home but not enough to live on. I can’t find another job right now because I A) live in Michigan, and B) have 2 surgeries coming up back to back. No one would hire me now even if I wanted to.

    As for the ileo…if you choose to do this, it would be permanent right? I’ve got some thoughts about this, but its a lot to type just in the comments of the website. So if you’d like feel free to email me jackiezimmerman {at} gmail {dot} com. Or facebook me or something…I’m unemployed so chances are…I’ll get you message asap.

    Good luck Lizz. I think that its most important in times of mega suck, to remember that there is always someone out there whos has it worse. Which is shitty, but honestly, it helps me sometimes. When I get down about rockin 2 diseases, or having the bag, or flaring while I have the bag…I find things like a woman who has a colostomy bag and a urostomoy bag….and then I stop my bitching. I’m just saying, as long as you can keep your head up, keep a straight mind, I think you can handle whatever this life throws at you.

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  3. avatar

    Jackie Z. says:

    August 8th, 2010 at 6:33 am

    Oh wait…one of my major points..I forgot. Disability. Honestly I think it may be a blow to the ego to apply, but I say do it. The reality is you will most likely get denied, and will have to fight their ruling anyway, so you should start now while future things are perhaps a bit unsure. I know a lot of people who have a applied (for non IBD things) and always get denied and have to appeal many times. Its a really tough process. So if you’re considering it…do it…and potentially start looking for a good lawyer.

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  4. avatar

    Eric says:

    August 17th, 2010 at 8:41 pm

    Oh Lizz, I’m sorry. Coincidentally, I started working from home right when my UC became hospital worthy. I forget what you do, but is there any “work from home” option? If so, I have lots of tips and experience at that. I also have “work from the hospital” advice. All my best.

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  5. avatar

    Lizz says:

    August 18th, 2010 at 4:12 pm

    Eric, I would LOVE to hear about some work from home options. Unfortunately, I sometimes think I can’t even do that with any consistency. I felt great last week while on Augmentin for a sinus infection (also taking Xifaxan for CD). It always makes my tummy feel better and slow down too, but just finished it a few days ago and am already so tired again-for absolutely no reason, except for the inflammation I guess is going on. My stomach is crampy and so loud again. My surgeon basically said, “Well, that’s good that it makes you feel better, but you can’t stay on Augmentin all of the time.” I have definitely felt worse. I haven’t had any bleeding in about a month, but I am really tired of just feeling “blah” all the time. I sleep most of my life and when I get out and do basic errands or do stuff with my friends, I am just exhausted after.

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    avatar

    Eric Reply:

    I feel your frustration with energy. Even now, 654 days after my third surgery, I don’t have the same amount of energy I once had. I blame it on not being able to absorb enough vitamins. One idea off the top of my head: blogging? You seem to contribute a lot to this site. This site does make money right now, we are just barely in the “black”. We cover our operating costs. Anything you know about and like to write about that people would read every day, multiple times a day?

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  6. avatar

    DOUG says:

    September 15th, 2010 at 5:17 pm

    I lost my job for the same reason in 1989. Decided to start my own business from home. (close to the toilet) Now, I’m part of the 2% richest Americans. I’d suggest taking the disability to get you started, you deserve it. Also, look into wrongful termination suit against your former employer…but its a slim chance, they protect the mildly deaf but not people like us…Keep smiling, stay positive, it will get better for you. Never give up and when you’re feeling better start any business from home that interests you and see what happens. Don’t fall for the usual scams though….It worked for me.

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