On to the Next One...

I had a colonoscopy on June 19th.  They put me through the ringer to get it scheduled - it took more than two months and a LOT of fighting with doctors, hospitals and insurance.   I'm literally exhausted over the way medical treatments are handled for sick patients in America.  It breaks my heart.  I'm so thankful that at least I'm well enough to work.  Sure, some days I really have to grin and bear it, and my job allows me to take all the bathroom breaks I need because I'm not tied to a sales floor or something.  I know that I'm a lucky one.  But it stinks.  I literally had a nightmare the other day that I was supposed to have an appointment with my old GI.  I had to go to the bathroom so I "missed my appointment" because I was down the hall and wasn't in the waiting room when they called me and the next available appointment wasn't until January.  I know that's a nightmare, but it's honestly not that far from the truth. My appointment to go over my results with my GI isn't until August 14th, two months after my colonoscopy.  Because our medical system is so broken.  As an existing, sick patient, I can't get in to see my doctor to get my results for two months after a procedure!  It's ridiculous.  It makes me very angry.

My primary care doctor was able to get me my colonoscopy results.  That's right....I can't get the results from the doctor who ordered the colonoscopy (and I've called her three times and emailed three times asking for them).  Obviously, my primary care doctor and her office can't give me specifics on the results, but I've had this rotten disease long enough to know what it means.  The gist is that my disease is still active throughout my entire colon.  Not a big surprise.  There is some pretty significant scar tissue in my colon too, from the constant inflammation for over a year.  I stopped the Humira in March of 2017, so I'm pretty much thinking the inflammation stems back from around then.

In the meantime, I also had to fight with my doctor's office to get on a new medicine.  The Entyvio clearly doesn't seem to be working after a year.  My next step is Simponi.  It's not as commonly used for bowel disease, but I'm at the point where I'm willing to try anything.  So it was another round of phone calls with doctors, insurance and specialty pharmacies to get it delivered.  She prescribed it on June 11th.  I finally got the medicine today.

Simponi costs $3,900 for the first month (three shots).  After the first month, you only take one shot, so it's 1/3 the cost.  That's after it's been run through insurance and all that jazz.  Our health care system is so broken.  Thank god for drug company assistance programs.  But they don't make sense to me, why doesn't the company just make the drug cost less?

I just really hope that this is the answer to get me out of this ulcerative colitis and uveitis hell I've been living in for the past year.  This is another Anti-TNF medicine, so there is still the possibility of lupus again.  I'm honestly terrified.  But I'm willing to treat the lupus if it means I won't go blind.  Living with a chronic illness is sometimes choosing the lesser of two evils.  Given my eyes or my colon, I'd get rid of my colon.  Given drug induced lupus or my eyes, I'd take lupus.

Wish me luck.

An Ode to Prednisone

Today was my first day off of oral prednisone since September.  Prednisone is a steroid that is often used to treat inflammatory disorders.  Typically, when I'm on a course of prednisone, it's for a week or two.  While four months is by no means the longest course of prednisone, it was long for me.  Prednisone is a great drug because it works quickly.  It also is a scary drug with bad side effects - muscle cramping, insomnia, etc.  One of the side effects is that it can affect your bones.  This is a huge concern for me, because I already have had osteopenia bone problems in the past. 

The biggest thing with being on the prednisone is that it can delay the healing of open wounds.  When I had my surgery, I was still on a pretty high dose, and had been taking it for about a month for my eyes.  When you're on prednisone, you can't just stop taking it, your body needs to slowly taper off of it.  This is because the prednisone can affect your adrenal glands, so you need to give them a chance to "catch up" as you taper.  Additionally, because we're still afraid of my eyes, I had to taper extra slowly, because the uveitis has a tendency to come back if you taper too quickly.  So I've been trying to get off of the prednisone since the day of my surgery, October 29th.  If I were a normal patient, I probably would of been able to get off of the prednisone in just two or three weeks...instead, it's taken me 10 weeks. 

The prednisone was treating my arthritis.  And I also haven't been able to take the methotrexate to treat my arthritis and my eyes while I'm healing, because that too can inhibit healing.  My left ankle has flared up bad.  It's swollen and puffy.  Walking on uneven packed down snow is incredibly hard.  My doctor had me start wearing an ankle brace.  Keep in mind that normal people can take over the counter pain killers, like Advil, but I can't.  It hasn't been fun.

The prednisone was also treating my ulcerative colitis.  We're not sure what's gonna happen now that I'm off of it.  Hopefully the Entyvio has kicked in, but we still don't know if it works, partly because it takes 4 to 6 months to know if it works, and partly because I've been sick since the first week I was on it.

I had my drains out just before Christmas, eight weeks after my surgery.  My wounds are about the size of quarters.  The last two weeks since they came out, I've had a lot of pain and discomfort.  I've spent the holidays in bed.  Not that it's different than the last few months...I've spent practically every moment that I'm not at work in bed. 

I'm still on steroid eyedrops.  I'll be on those for at least another few months.  Like I said, you have to taper very slowly or the uveitis could come back.  While my eyes have no active inflammation, my vision is still not where it should be and we still don't know that it will come back.  And I can't get a new glasses prescription until I'm off the drops for a while.  I'd like to say you get used to life being blurry, but honestly, you don't.

But even when this is all over.  I'll still have ulcerative colitis.  I'll still have uveitis.  I'll still have arthritis.  It doesn't go away.  I want it all to go away.  Years of being trapped in a body that hates itself has started to wear on me.  It sucks, because people really worry the first few weeks after something happens....after a little while, most stop checking in.  It's understandable, people get busy, people have their own lives. I'm super independent and I hate asking anyone for help, but man does that approach get super lonely sometimes.  It's hard to feel so alone, especially over the holidays.

But today, getting off the prednisone feels like a big step today.  I hope it was. 

Awareness Week 2017

December 1st thru 7th is Crohns and Colitis Awareness Week.  Crohns and Colitis Awareness Week was created by US Senate Resolution 199 in 2011.  Crohn's and Ulcerative Colitis are two inflammatory bowel diseases that attack the digestive system.  Crohn's disease can impact anywhere along the digestive tract from mouth to anus, and UC impacts the large intestine.  Additionally, in many patients, IBD affects joins, skin, bones, kidneys, liver and eyes.  These are auto-immune disorders - basically the body decides to attack healthy tissues.

I have Ulcerative Colitis.  But I might have Crohn's Disease.  We're really not sure.  I've had some fancy expensive test that is supposed to tell you which you have, and it said UC, but the test is still experimental, so even those results are inconclusive.  I've had some erosion in my small intestine, which would be indicative of Crohn's.   My latest incident with the abscess also points itself towards Crohn's Disease.  Either way, I have Inflammatory Bowel Disease, and my treatment wouldn't change too much with a different diagnosis, so we haven't worried too much about what we call it.

In the last year, I have had a lot of extra-intestinal issues all connected to my UC.  I suffered from drug-induced lupus, a kidney infection, severe muscular problems in my back, a severe flare of uveitis, and a huge rectal abscess that led to my first IBD related surgery and a three day stay in the hospital.

Here's an infographic about my IBD.  I liked the one on the UK website better than the US one hahaaaa.

It's been a month since my surgery.  I'm not really in the mood to talk about living with UC during awareness week.  I've been sharing a lot more than usual because of the issues I've been having lately.  And people for the most part are pretty nice about it.  But there's so much more I wish I could share, that I wish I could say.  I've thought about making an anonymous twitter account, so that I can share all the gory details...because  sometimes you need to share the nitty gritty gross details.  I think it's important that people know that this disease is horrible and embarrassing and demeaning at times and I'm thankful for my friends who let me tell them those details!

I've been obsessed with Selena Gomez and her story lately.  As someone who suffered from lupus for much of the past year...I love the fact that she's willing to talk about it.  That she's able to say "yeah, I almost died" because of this is great and empowering.  I like that better than the commercials with celebrities such as an NFL player with IBD in them...because sometimes people see those commercials and they think "ok, yeah, it's a disease, but you can have it and play professional football and be fine".  For most of this year, I couldn't run to cross the street, let alone across a football field....I'd give anything just to be healthy enough for a nice bike ride.  But a life with an autoimmune disease is not always rainbows and sunshine and sometimes it just really sucks.

I go back to the eye doctor and to the surgeon this week to follow up and see how things are healing on both ends of my body.  Next week, I have some more bloodwork done, and then follow up with the rheumatologist.  So many doctors appointments.  2017 is going to be remembered as the year of the doctors appointments.  Blah.