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.

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. 

Insurance, Quacks and Preparing for Followups

I got a bill for bloodwork last month.  The actual bloodwork was done in April.  It was the last test my former Gastroenterologist ordered for me.  The test was to see how much of the Humira was in my system and if I had developed antibodies to the Humira.  My insurance denied the test at first, saying I had to go to a different lab to have the bloodwork done.  My doctor's office told me to go there and said it'd be covered at the other place.  Anyways this is the test that came back, my doctor interpreted as I needed to go back on Humira despite it making me so sick with the drug-induced lupus.  So then, nearly five months later, I get a bill in the mail from the blood lab.  What they didn't explain to me is that insurance was only covering $21 of the cost...I'd have to pay $533 out of pocket.  This is why insurance companies are the real enemy.  I'm sorry, but you should have just denied the claim.  I would have been completely happy without having that blood test, since the results literally told me nothing that was useful medically.

This week, I successfully negotiated the cost down.  I'll be paying $133.  It took multiple calls to both my insurance company and to the lab.  It's exhausting.  And that's still not cheap.  And that $400 will be going to hospital bills.  It's disgusting.  Just another day for those with chronic illness.

Have you ever joined a facebook group about a disease or condition? It's a terrifying world (let's face it fb groups are all kind of terrifying places at times). It amazes me the misinformation that exists out there on the internet.  People sharing their horror stories.  Sure, I know most people don't join a message board or group to say "hey, I had this issue one time and everything healed up fine, and I never had any problems again".  But it's scary the information out there and how wrong some of it can be and how traumatic it is to ask a question and have people immediately share their horror story. Someone told me that my abscess will 100% turn into a fistula so I might as well accept that I'm going to be dealing with this for years and be miserable like they have.  It's troubling.  A girl followed me on instagram and has been sending me messages claiming her UC was cured by diet, trying to sell me her food coaching consulting services.  There is no cure for IBD. Maybe she has no active disease and maybe she'll be lucky and it won't come back.  But I too have had times of remission.  I had times of no medicine even...a few years of it actually.  And then it came back.

Modern snake oil salesmen abound in the internet age.  It's a concept that has always fascinated me.  I own an antique bottle of Dr. Pierce's Golden Prescription....a snake oil that was produced here in Buffalo right on Main Street Downtown.  Now people tell you that you can send in your saliva and it will tell you what foods you should eat, people tell you about your leaky gut syndrome, your gluten intolerance.  And yes, I know there are real conditions, but believe me when I tell you that my disease is not caused by food.  Since I was 15, I have tried so many different diets...I've tried gluten free, I've tried sugar free.  Heck, I gave up dairy for five years because I was told I was lactose intolerant, still had stomach issues, and ended up with osteopenia (the beginning stages of osteoporosis) from not having calcium while I was growing.  I know that people want to help when they make these recommendations.  But I'm the girl sitting researching in a copy of Physicians Desk Reference, reading scholarly scientific articles and actually researching my disease.  When you're to ask me if I've tried these vitamins or giving up dairy, or smoking some weed, you make me feel like you think I'm choosing to be sick.  I'd never chose this life.  I long for health.  I'm an active person.  My entire life revolves primarily around active transportation.  And I was able to ride my bike exactly twice this entire summer.  You have no idea how hard it has been for me to feel trapped in a body that doesn't do what I want it to do.  I'm not complaining, I just don't think people realize that when you suggest I "just try this" as if that will cure me, it feels incredibly insulting.

I started back at work last week.  Worked a few hours a day to get out of the house and back onto somewhat of a schedule.  I'm back basically fully this week.  I still get tired fairly quickly and I'm still pretty much stuck in my apartment when I'm not at work.  I can't really be away from a bathroom stocked with my supplies.  I had to miss the BN360 Kick Off Party last week, where I was being honored as one of Buffalo Niagara Spotlight Young Professionals.  I had to cancel a speaking gig I had scheduled for Monday to speak to a new group.  There's an exhibit opening at the History Museum this week and I won't be able to attend any of the festivities.  I've had to miss two meetings of a discussion group I'm a part of at the TR Site.

I hate feeling like I'm missing out on things.  But I keep reminding myself that if I had to drive to work, I wouldn't even be able to work, since I'm still not cleared to drive, so I'm lucky in that regard.  All I can do is what I can do.  And right now, that's work and then go home and sleep.  And sometimes sit at the Public Espresso counter (have I mentioned how much I have loved them thru these two months of illness...having friends located snugly inside my building has been a lifesaver!!  Check out their new space that opened today, you will love it!)

I've been having pretty weird headaches...but part of me wonders if that's just from my eyes.  My eyes are pretty close to being back to their normal, but it's just off enough that it's annoying, so I wonder if that's what's causing the headaches.  As someone with inflammatory bowel disease, I can't take NSAIDs (over the counter painkillers like Motrin, Advil, Aleve, etc)...so headaches are annoying.  I usually treat them with caffeine, but I'm not using caffeine right now because I have to keep an eye on things that affect my bowels post-surgery.  I haven't taken any of prescription painkillers since Thursday, so I'm hoping not to take any more of those.  I'm also experiencing some pretty significant arthritis in my left ankle again.  I think it's from tapering the steroids, so I went back up a notch this those this week and we'll try again next week.  I have steroid chipmunk cheeks these days, and my already normally super round face looks ridiculous.  People say they can't tell, but I can tell and it drives me crazy.

I follow up with my surgeon on Friday.  I also have my next Entyvio infusion that day, so it's a big day for me.  I had my now regularly scheduled bloodwork done today.  I have to go monthly to monitor things.  I'm looking forward to seeing those results.  I also see my GI next Tuesday so I'm looking forward to touching base with her to see what she thinks about my abscess.  It could be a sign I have Crohns Disease and not UC, so I'm interested to get her views on that.  At some point, I have to followup with my primary care doctor.  I can not stress enough how important it is to have a primary care doctor you trust and who will stand up for you. She fought to get me diagnosed in ways that other doctors failed me.   I look forward to filling her in on the last few months and everything that's happened!  Nurses from her office have called me since surgery just to check in in my recovery and whatnot, which I really appreciate.

So yeah, that's where I'm at this week. Just another week in the life with a chronic illness(es).

Entyvio Day One

I decided I wanted to blog about my experience with Entyvio.  I need to talk about my disease more.  I suffered so much this past year in silence, and that's not being a good advocate.

Today, I started on Entyvio.  It's a biologic medicine, so it actually changes your immune system to work towards lessening the inflammation in your body.  Humira, the drug I used to take,  is an Anti-TNF, meaning that it blocks the body's response to "tumor necrosis factor", which I believe is a type of protein.  Another common drug for those with crohns and colitis is Remicade, which is another Anti-TNF.  Entyvio works a littJle differently, by blocking lymphocyctes (white blood cells) from entering the gut by binding to the cell.  These medicines are complex, and whenever I research them, I'm always thankful I took that Human Biology class at Geneseo (shoutout to my roommate Liz for drawing pictures of the body systems with me while studying!)

Whereas Humira is self-administered, Entyvio is not.  I liked the convenience of being able to give myself a shot for the Humira.  Some people have trouble with giving themselves the shots.  Needles have never bothered me...I think as a result of my mother being a Type I Diabetic; I'd watched her give herself insulin shots and test her blood multiple times a day since I was born.  Entyvio is administered via an infusion at an infusion center.  The most convenient center for me is at Dent Tower, which is thankfully in the neighborhood where I grew up, less than a half mile from my parents house.  These things are important to consider when dealing with a chronic illness and not owning a car.  Luckily, I had my mom's car today, so I didn't have to worry about feeling sick on a bus after the infusion in case I had a bad reaction.

I was really nervous leading up to the infusion.  I drank about 100 ounces of water yesterday, since I'd read a lot of people say that being extra hydrated made it better.  I started to worry they wouldn't be able to find a vein.  Every time I get bloodwork or need an IV, everyone complains about my "rolly veins" and I end up with bruises and multiple stick sites.  What if they couldn't find a vein, and I couldn't get the drug?  What if I had a bad reaction?  What if I develop serious side effects?  Why did Humira work for more than two years and then suddenly give me drug-induced lupus?  What if something similar happens again?  How long would it take to work?  What if it doesn't work?  My colon has been acting up pretty badly, what if it takes a few months to work and I have to live like this for a while?  I barely slept last night.  I drank cup after cup of chamomile tea, trying to calm my nerves.  My hands started shaking to the point where I had to stop using my favorite mug because I was afraid I would drop it and it would break.

I got to the infusion center this morning, they quickly checked me in.  The nurses and staff there were all very nice.  The nurse who set up my IV told me that she'd had a lot of patients tolerate the drug very well, which helped to ease my troubled mind.  She took my temperature and blood pressure.  She was able to get a vein on the second try, on the inside of my forearm.  I had asked my friends for musical suggestions, and my friend suggested The Beatles, since it would be familiar and calming.  So with Ringo, John, Paul and George keeping me company, I got my infusion.  It takes about 40 minutes, they run the drug through the IV and then they flush it out with some fluids to make sure you get all of the medicine.

It's been about 8 hours and I feel alright so far.  I was pretty tired right after, but I think it was more from the stress and not sleeping, rather than from the drug.  I go back in two weeks for the second one.  The way Entyvio works with scheduling is first infusion, two weeks, four weeks and then every eight weeks after that.  I'll write more after my next infusion or update if anything changes between then and now.

Doctors and Lupus and Transfusions, Oh My.

I last wrote here in December.  I had tried to make a Rheumatologist appointment in October...the first time they could see me was February 24th, because doctor's offices make it so difficult to be seen by a specialist.  On March 14th, I was diagnosed with Drug-Induced Lupus.  The Humira I had been injecting was acting like poison in my body.  I had symptoms of this for more than six months.  In fact, when I first saw my primary care doctor in September, we had thought it could be possibly lupus.  Dermatologist and Gastroenterologist insisted it was not from the Humira, so I kept injecting myself with poison.  The pain got worse and worse.  I couldn't open things with my hands, I couldn't walk up the two steps onto the bus without assistance from the bus driver.  I lived in constant pain.  I can't take over the counter pain-killers, because they destroy my stomach and cause significant bleeding in my colon.

My Gastroenterologist told me he'd never heard of Drug-Induced Lupus from Humira.  He insisted on more tests to see if I had developed antibodies to the Humira and to check the Humira levels in my system.

The Rheumatologist gave me a steroid shot to treat the lupus.  My body reacted poorly.  I got really sick with a horrible pain in my back.  I couldn't stand up straight.  The pain took my breath away.  I went to Immediate Care, where they diagnosed me with a bad kidney infection.  Two days later, I ended up in the emergency room after literally collapsing in pain in the lobby of my apartment.  Doctors there continued to diagnose me with a kidney infection, gave me some fluids and sent me home with stronger antibiotics.  Spent the next week on the couch with a heating pad, drinking my body weight in fluids and watching Veronica Mars.  My Primary Care Doctor got the reports from Immediate Care and the ER, realized that none of the cultures developed anything so I did NOT have an infection.  She rushed me to imaging to make sure I didn't have a pulmonary embolism (blood clot in the lungs) and ran some more tests.  For a month, I could barely walk, stand up straight, or breathe.  My theory is that it was all from the steroid shot and the lupus.  My Rheumatologist would not treat my pain, or even take my pain seriously as I sobbed in their office.  They told me to follow up with the Gastro and to come back in October.

I was prescribed a week of oral steroids and physical therapy by my Primary Care Doc.  The steroids allowed me to feel perfect during my trip to NYC.  I was able to walk more than 6 miles a day, which sounds like nothing for someone as active as I typically am, but I honestly at the time, I could hardly walk the half mile to my office.  After the oral steroids ran out, the pain and stiffness came back.  Over the last two months of PT, I have relearned to use, stretch and strengthen my muscles.  I go twice a week to PT, and do the exercises/stretches three times a day.  It's the most diligent I have ever been with a workout regimen.  I'm so thankful that after losing a full month of my life due to pain in April, I can finally move properly again for the most part.

In May, the Gastroenterologist emailed me with "good news" that my Humira levels were low so I could go back on Humira but needed to switch from once a month to twice a month.  I immediately started looking for a new Gastroenterologist.  Again, it's so hard to get an appointment as a new patient, which is a disgusting part of our medical system.  I refused to believe that going back on Humira was an option.  I needed a second opinion.

From March until July, my digestive system has been completely untreated.  The only good news to me was that as the Humira got out of my system, the ulcerative colitis symptoms began to reappear.  It made me feel good to feel bad, since at least the Humira had been treating the ulcerative colitis, so even if I had all these problems, at least I could hold on to that fact.  As the rest of my body has healed, my colon has begun to flare...reminding me that yes, you do have this disease in your gut, you do not have a normal digestive system.

The lupus symptoms have slowly improved as the Humira has gotten out of my system.  It takes at least 3 to 5 months for it to really leave your body completely, and I was on it for almost three years.  My feet and knees no longer ache in pain when I walk.  My hair has begun to grow back..it's weird to get excited about things like maybe shaving your legs.  I honestly had no leg hair at all....baby smooth legs for months.  But I had bald spots on my scalp, and every new hair is a chance that I won't have to start wearing wigs.  My head itches as I can feel the new hairs poking through my scalp.  It's the best itchy feeling I've ever felt in my life.   I still have stiffness in my fingers and wrists, but hopefully it will continue to improve.

I saw the new Gastro last week.  She seems nice.  She will not put me back on Humira, and believes I did indeed have Drug-Induced Lupus.  She wants me to start on a new drug, Entyvio.  She gave me oral steroids to hold me over in the meantime, which I'm already so thankful for.  Anyone who has lived with symptoms knows what a relief it can be to treat them.  I'm a little scared about the Entyvio.  It's the kind of medicine that you have to go to a transfusion center and get injected via an IV.  It will start with one transfusion, then two weeks later, than four weeks later, than six weeks, then hopefully every eight weeks.  Cross your fingers my insurance approval coverage of this and that it doesn't cost too much.  I've already spent more than $3,500 out of pocket on medical expenses in 2017 alone.

I'm scared to start on another biologic, but also excited to maybe feel normal again.  I'm scared of all the millions of side effects that come from these medicines.  I'm scared that they'll have trouble getting veins to actually do the transfusion and I'll have to get a port.  I'm scared that the medicine won't work.  I'm scared that I'll get another scary side effect.  But I'm hopeful as well. Hopeful that maybe I'll get another few years of relief.  The Humira, for all the issues I've had this past year, it did give me two full years of feeling great.  Hopeful that maybe my colon will someday stop being an issue because maybe we'll find a cure.  Hopeful that maybe someday we'll have better health care in this country, that years of fighting doctors and insurance and drug companies will some day be a thing of the past.

As most of you know, I hate writing about this kind of stuff.  I am an extremely positive person, I hate admitting that I have anything wrong with me.  I refuse to let it hold me back.  This past year has challenged me in ways I'm still trying to figure out.  My health struggles have just been a part of the emotional burden I've been holding on to this year.  But it's all welling up inside of me, making me stronger, and making me better suited to stand up for all the things I believe in, to keep fighting the good fight.   I'm thankful to you, whoever you may be, for reading this, for listening to me, for putting up with me, and for supporting me in some way.  And to my close friends who listen to me complain all the time, you know I'd be lost without you!!