Shelly's Story

medical student. jpoucher with chronic pouchitis vs sever proctits. severe/refractory ulcerative colitis. no colon, still rollin'. former ostomate. aspirant artist. stumbling through life. join me? @UlcColitisProbz [email protected]

[shellystory]

The Doctor Ordered It... So, Where's my Humira?

This is my personal experience starting this medication. I'm not sure it is the "standard" way things happen, but I thought it was important to share my experience whether it be easy as cake or dubious as soufflé. FYI, we're going to go into some specifics here about labs I got and other nota bene I figure are useful for the reader.

[Friday, November 04]

Humira was prescribed by my doctor. Worked (side by side, face to face) with the nurse navigator Nicole to file prior authorization paperwork. Rx was submitted to "specialty pharmacy." Told I would be contacted by Humira nurse for help coordinating. Had initial labs drawn and I produced my most recent PPD documentation to avoid that hassle. Screening labs included BMP, CBC, CMP, ESR, HepB.

(NB: keep a PDF of your immunizations and other essential medical records accessible on a secure cloud network so that you can easily produce information and documentation when asked.)

[Monday, November 07]

I was Contacted by Humira nurse. Given information for Pharmacy Solutions, who was to help me figure out how my insurance would cover Humira and how much I would be paying out of pocket, in addition to other available financial aid programs for which I qualify. Called PS that afternoon to give them my insurance information. PS informed me my insurance company had not yet received the prior authorization request.

Later that day, I returned to my GI’s office to redraw my BMP as there was a lab error. (The lab didn't mark my sample as hemolyzed, so my K was falsely sky high.) My other labs were suggestive of a chronic inflammatory process or infection: WBC 13 (uln 10), ESR 25 (22), CRP 4.0 (<1.0), PLT > 500k (450k). I got to take home a stool sample kit to rule out GI infection. (All labs came back negative. GI & I agree proinflammatory markers are elevated due to my uncontrolled Crohns.)

[Thursday, November 10]

Called Insurance: prior authorization paperwork had been received and was pending. They estimated it would take two weeks for paperwork to be approved. Got the number for the prior authorization department in order to follow up on its progress.

[Friday, November 11]

PS called to inform me insurance coverage for Humira left me with an out of pocket expense of $100. They also saw that I qualified for the Humira savings card, which will cover 95% of my out of pocket cost. Humira will cost me $5.

[Tuesday, November 15]

Called Prior Authorization department of my insurance company. Drug had been approved; however, prescription had been delivered to an out of network specialty pharmacy. Told to call Briova, the specialty pharmacy approved by my insurance company.

Called B, and spoke with a person who told me my Rx was at Transcript Pharmacy. She told me in order to transfer the Rx, I needed to call the pharmacy the Rx was currently at and THEY needed to call B. This is not true. Nevertheless, I asked her for their number. She could not give it to me. At this impasse, i asked her what I could do to get my Rx to the "right" pharmacy. She suggested I call my doctors office.

I called Nicole, the nurse navigator and patron saint of frustrating insurance paperwork, at my doctors office. She was able to give me the number for Transcript pharmacy and suggested to keep trying to move the current Rx before we started over submitting a brand new Rx.

I called Transcript. They, correctly, informed me B needed to call THEM to move the Rx.

(NB: When transferring any Rx, you call the NEW pharmacy. That pharmacist will call the old pharmacy to have the Rx transferred.)

I called B back and spoke to a different agent, explaining that I needed a pharmacist at B to call and get the Humira transferred.

He asked innocently, "when were you planning on starting the Humira?"

"Tomorrow would be nice. Yesterday would have been better." Was what I wanted to say. More politely I responded: "As soon as possible."

He said he would mark the note priority as STAT for the B pharmacist to call T. He told me I should hear back from them within the next few days. if I haven't heard anything by Thursday, I should call them back.

"How will I reach you?" Feeling a little desperate that I was about to end up back in Insurance purgatory.

"Well, there are many representatives and I can't guarantee you'll be able to speak to me again." I giggled. "Let me be more specific... how do I reach one of your people."

He laughed and gave me the number I could call.

[Thursday, November 17]

I called Briova, my prescription had been received. I asked how quickly I could start, and the representative on the phone replied: “Let me see…. tomorrow?” We decided on starting Monday, November 21.

[Monday, November 21]

My heart raced every time I heard a truck drive by the house as I waited for my Humira to be dropped off. The drug is a "specialty" medication shipped directly from the "specialty" pharmacy, so they sent it right to my door. By about 4pm, a big brown box appeared at the door. Inside that box was a styrofoam box. Inside that box was my Humira starter kit and a red sharps container. I checked all of the pens as I was instructed to: amount, color, viscosity. I left four on the counter to thaw and put the other two in the back of the refrigerator. In my Humira notebook, I copied down the batch number for each pen and circled the locations I planned for each shot.

After a 30 minute thaw, it was time. I brought all four pens, alcohol pads, and sharps container to my bed. I handed my mom a pen and I took another. We prepped two spots: one on my right thigh and the other on the left side of my stomach. As I let the alcohol dry, I looked up at my mom holding the pen. And then I chickened out. The thought of her stabbing me with the Humira pen was scarier than doing all four shots myself, no matter how painful four shots would be. I took the second pen from her and turned all my attention to my right thigh. I pinched up a meaty part of thigh and...

POP!

...triggered the pen. Burning pain rushed into my leg as I struggled to hold the pen's needle against my leg to allow all of the medication to be injected...

1...

2...

3...

4... My hand began to shake.

5...

6...

7...

8... I could feel my eyes crossing.

9...

10... It was over.

I immediately threw the pen into the sharps container and let out a sigh of relief. It wasn't as bad as I thought it would be. Not to say it didn't hurt, but I knew I could do it.

The next three shots went much the same. POP! followed by the longest 10 seconds of my life. I found that shots in my legs were far more painful than the ones in my tummy.

I thought about my knee, which had gotten so painful from its grapefruit-sized effusion that I could no longer bend it. I thought about each painful trip to the bathroom. I thought about the fatigue and isolation in dealing with Crohns out of control. And then I prayed it would work.

[Tuesday, November 22]

My knee was 70% smaller! Approximately. I could walk again. I was still hesitant to put weight on it after months of pain, but it felt so good! My tummy hadn't changed but I was sure we were on the right track.

[Thursday, November 24]

I'm pain free. My knees are practically identical again, fluid free. My trips to the bathroom became less frequent and painless. Finally, I get to exercise some control over my life.

[shellysnacks]

Hydrangeas in Ohio City, #CLE. So happy to be home, but can’t keep but feeling like I left a little bit of me behind in #Cleveland. Or maybe I’ve got a bit of #Ohio to carry in my heart. #ohioisforlovers #ohioisforhealing #ibd #pouchitis #jpouch (at Cleveland, Ohio)

[shellysnacks]

Goooooooood morning, folks! Off to my final physical therapy session & feeling really good! Only got up twice last night (good for me) and have been feeling pretty great! #IBD #selfie #fotd #pouchitis #cleveland #cle #clevelandclinic #jpouch #ulcerativecolitis (at University Circle (RTA Rapid Transit station))

[shellysnacks]

An uncomfortable number of men hit on this windswept face. Looks like random people who want to make me feel violated aren’t deterred by hot pink backpacks or tie dye t-shirts. On my way to my pelvic floor PT. #stawp #cle #cleveland #spoonie #pouchitis #IBD (at University Circle (RTA Rapid Transit station))

[shellysnacks]

Today is my last day working in the hospital of my third year!!! This has been the toughest year of my life emotionally and physically. My health didn’t always totally hold up, but I made it work. There was a couple set backs, but I made it work. I experienced loads of self doubt, but I made it work. ONLY 317 days left until I’ve got my MD! #medschool #spoonie #IBD #ulcerativecolitis #jpouch #pouchitis #work

[shellysnacks]

This cat is my rock. I’ve been having a tough week and he’s wanted nothing more but to play and sit on my lap while I cry. The week started with me feeling bad and dealing with a #pouchitis that seems more aggressive than usual. My angry #Jpouch kept me from taking an exam on Tuesday. On top of that, I realized I won’t even be nominated for an honor society at school because I don’t have any peers who are familiar with my patient advocacy work. (LOL are there even med students who do more than me?) Then I had a very tough experience with a patient with a terminal diagnosis. On top of all of it, I’ve been on the general surgery service and touched a beating heart. It’s been an emotional roller coaster with many tears spilled along the way. Three weeks left in my third year of #medicalschool. If I didn’t feel so affected by the combination of academics, my own disease, and patient care, I might think I’m doing something wrong. #thestruggleisreal #thestruggleisworthit

[shellysnacks]

Tumblr struggles. #createyourownhashtags #makesiteasiertofindlostaccounts

(via shellysnacks)

[shellystory]

Change to Crohn’s

It’s probably been obvious that I’ve struggled with my health since my diagnosis with ulcerative colitis three years ago. Despite multiple treatments and surgeries, my symptoms never really seemed to completely go away. My GI and I then embarked on a year-and-one-half-long process of ruling out all the possible reasons my symptoms are so persistent. I’ve been on antibiotics for a total of 33 weeks; traveled to the Cleveland Clinic to meet with the master of these symptoms, Dr. Shen; completed nearly a month of pelvic floor physical therapy; admitted to the hospital; undergone four endoscopy procedures. All of this on top of my third year of medical school clinical rotations and, now, applying for residencies. It’s taken a toll on my grades, my social life, my family, and my sanity. Three weeks ago, my GI and I came to what seems to be the only diagnosis left: Crohn’s.

My medical journey has been really complicated, and I’m not about to sit here and wonder what we missed. I’m moving forward and concentrating things that I can control. Tomorrow, I’m starting a new drug to control my symptoms: Humira. This medication will hopefully get my symptoms under more control. In terms of school, things are more up in the air. My application is not as gleaming as I would prefer, so hearing back from programs has be correspondingly dim. It’s been a humbling, humiliating, and heart-wrenching process.  

Notwithstanding, I’m turning my face towards the sun. As I read in (listened to) a book recently, “It's not about having things handed it you or having the biggest brain. It's about following your dream and not giving up.”

[shellystory]

How Similar are Biosimilars?

If you keep up with IBD news, you might have heard of Remisima, a “biosimilar” to the well-known drug Remicade (infliximab). If you’re like me, you might have a few questions...

What is a biosimilar?

This is a drug that has the same action as a per-existing immunomodulating drug. Think of it like making a copy of a house key: If the working part of the drug is the teeth of the key and the carrying proteins is the head of they key. A biosimilar has the same teeth, but the head of the key is different. This allows the drug to be “same” enough to work the same way as the original drug, but not so similar that it is an exact copy.

How is a biosimilar different from a generic?

A biosimilar has different carrying proteins, as I explained above. This chemical difference makes it different enough from the original drug that it is not considered a generic.

Does a biosimilar work the same as the original biologic?

When the biologic Remicade came to market, it had to prove it could be effective in treating the various autoimmune disease it can be used for today. These FDA-approved uses include rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Crohn's disease, plaque psoriasis, and ulcerative colitis. In order to acquire this list, Remicade had to fund studies for patients with each of these diseases, demonstrating that the drug is an effective treatment.

When biosimilars come to market, they only need to show they (1) have the same mechanism of action as their original counterpart, and (2) are effective in treating ONE of the proven conditions of the original drug. Then, the biosimilar will inherit ALL of the FDA-approved uses for the original drug. For example, Remisima will show it works the same way as Remicade and is effective in treating, say, rheumatoid arthritis. At this time, Remisima will inherit FDA-approval from rheumatoid arthritis and all of the other indications listed above.

How much will this cost me? Will insurance companies or hospitals designate which drug (biosimilar or original) I take? Does one work better than the other?

At this moment, there is not enough information to answer these questions. These drugs will probably hit the market some time next year, at which point we will know how much they cost and how insurance companies are going to handle them.

If I failed Remicade because I formed antibodies, can I try Remisima?

We actually don’t really know the answer to this question yet. Because of the way antibodies work, there is a chance that those your body has formed will not recognize Remisima and this drug will work for you. However, this is just a theory. Time (and research) will tell whether or not Remisima is an option if you’ve got antibodies to original Remicade.

Should I switch from Remicade to Remisima? 

Short answer: talk to your doctor. There are a lot of factors that go into deciding which drug you should be on, including patient comfort, cost and drug efficacy. You should work with your doctor to make sure you’re on the drug that fits your needs and your disease the best!

Would you try a biosimilar?

[shellystory]

A New Humira?

Chances are you’re familiar with the drug, Humira, from injections on yourself to commercials on TV. But, have you heard a new formula may be hitting the market?

A citrate-free Humira formula may be hitting the American market soon. I Humira drug representative I spoke to estimated the newer formula may reach this side of the pond “by the first quarter.” That would be January to March.

Citrate (or citric acid) is a preservative originally included in the Humira to keep the drug fresh (read: working) for longer. However, this new formula leaves out the chemical. This new formula is also less bulky, requiring patients to inject a smaller amount of drug into their thigh/tummies.

I’ve heard from friends in the UK, where this drug is already available, that this formula does sting less and is generally less painful than the older formula. Considering there is less medicine to inject and the formula leaves out an acid, I definitely believe the hype!

These dates definitely aren’t definitive, and there could be a lot of bureaucracy keeping this formulation out of American patient’s hands.

Are you looking forward to this new formula?

[shellystory]

Pelvic Floor Physical Therapy

This video was taken during a PT session. The probe is in my anus. As I squeeze my pelvic floor muscles, the green oval contracts and gets smaller. When I relax, it gets larger.

The winning treatment seems to be Pelvic Floor Physical Therapy (PF PT). I’ve been off all UC meds and am managing my disease only with better pooping. Who’da thunk it?

Who is PF PT for? You’re probably familiar with PT for a hurt back or knee replacement, but there is really a branch of PT for every part of the body (and mind). PF PT focuses on the muscles of the pelvic floor, which control bowel movements, urination, and are involved in sex. I was familiar with PF PT for people who have issues holding their urine (e.g. leaks when sneezing, laughing or coughing) or for people who have issues with sex (kegels, anyone?).

For me, PF PT was to help treat my pouchitis. My doctor suspected the inflammation in my pouch may be due to incomplete or ineffective emptying. The more he explained what might be going wrong, the more I thought, “YES. That is me!” I then had a test called pouch manometry, which measured my ability to squeeze. I apparently failed this test spectacularly, so that confirmed the diagnosis for my doctor.

When I got my pouch, I immediately had issues with using the bathroom. (Things are going to get graphic here, so read at your own risk).  I couldn't leave the house for nearly a month when I first got my pouch because I had such bad sphincter control. I had daily accidents or near accidents. I worked on pouch training, but I really really struggled. The way I eventually coped was with massive amounts of anti-diarrheal medications that were focused to slow my body down. Instead of mastering my anus, I chemically stopped it. Unfortunately, the apparent repercussion of this was a persistent inflammatory process.

What is PF PT like? Every experience is probably different, dependent on your institution and therapist. I saw Jill at the Cleveland Clinic St. Vincent Charity Medical Center. She instantly made me feel comfortable and less nervous: explaining what the therapy was going to be, describing the modes by which we’d practice, and outlining our schedule.

Alright, I’ll answer your burning question now: WHAT IS IT? First, I took off my bottoms and lay down on a massage table covered with a sheet. We started with tummy massage, and Jill explained how I could loosen my strictures and scar tissue with daily kneading and pulling of my stomach. (I guess my cat was trying to help me when he’d make biscuits on my tummy!)

Then we moved south. She explained how she was going to put her fingers into my vagina and feel how my muscles reacted when I will them to squeeze and release. If I could tolerate it, we would then do the same thing with my anus. As traumatic as it sounds, I didn't feel uncomfortable. Jill explained how there were two parts to my rectal sphincter: an inner and outer sphincter. When these sphincters don't squeeze together, life gets difficult for my pouch.

After manually examining my muscles, we moved on to using the rectal probe. This was a T shaped piece of plastic covered with two strips of metal. To use it, we hooked it up to a computer, put the device into my anus, and put a sticky electrode on the outer part of my anus. The electrode and probe would work together to catch the electric impulses muscles make when they contract. If this sounds familiar, an EKG works in a very similar way. When the probe was set up, I could watch my sphincters squeeze and relax in real time. This is considered Biofeedback. Biofeedback is when we use objective visual pictures that correlate to body processes in order to help gain mastery of that process.

I did an intensive PF PT program over three weeks and retested my pouch with manometry at the end. Throughout the time I also used the UC suppository Canasa in order to help reduce inflammation. In the end, I passed the test and felt like a champ.

It has been a month and a half since my PF PT experience and I’m on my third week without Canasa. I feel amazing – better than I have in YEARS. I feel as good as my pre-diagnosis self, but now older and far wiser. I think the most important thing I learned was to trust an experienced practitioners advice. If you spend a lot of time with fellow IBDers like I do, you sometimes become jaded by failed treatments and bad patient relationships with various members of the medical community. I was VERY suspicious of PF PT being the solution to all of my problems. Admitting PF PT could help me seemed like admitting that I was actually the problem and not just my crazy immune system. I know that’s irrational, but such is life. I suspended my disbelief in this program and trusted the expertise of Dr. Shen & Jill, and the results have been fantastic! Just another reminder that I, in fact, do not know everything and it’s a good thing I don't!

[shellystory]

July 6: Cleveland Clinic Chronicles

An email to a friend explaining my treatment plan of Canasa and pelvic floor physical therapy at the Cleveland Clinic.

[shellystory]

July 5: Cleveland Clinic Chronicles

A conversation following my first appointment with Dr. Shen explaining what happened and what I learned that day. 

[shellystory]

Death.

You heard me right. Death.

Simmer down now, Charley, and keep reading.

The word cure is oft thrown around carelessly. Applied to many conditions and as a goal of many fundraising campaigns. I’m here to tell you: you can put the word cure on the shelf next to Santa Claus, the Boogeyman, and Leprechauns.

Cure isn’t just a word that's relegated to casual use. I distinctly remember learning “surgery is curative for ulcerative colitis.” I jot that phrase down in my notes and so a massive misconception about ulcerative colitis (UC) was perpetuated to another generation of doctors. To cure UC, the surgery required is a proctocolectomy, total removal of the colon and rectum. The consequence of this surgery is living with a jpouch or ileostomy bag. I’ve lived life both ways; I’m currently living with a jpouch, the subtler curative phenotype. Every day I am reminded what I gave up for my cure. Even with a perfectly functioning jpouch, every bowel movement have would be liquid and I’d visit the loo to poo an average of 6 times a day. My jpouch does not function perfectly, making my relationship with my curative surgery even more strained.

I know that every cancer journey is different, but I understand one similarity: no journey is easy. Many people’s fights leave physical as well as emotional scars. Looking at breast cancer, finding a cure has been very well publicized and funded in pop culture. The world turns pink in October for Breast Cancer Awareness month, as it should because one in eight women will develop breast cancer. But is there anything that currently exists a cure for breast cancer? And when you are finally cancer free, are you cured? One of the personal struggles I had as a medical student was performing mastectomies. While I understand they can be life-saving procedures, I would never describe them as curative. The technological advances of reconstruction are amazing and it is totally possible to give back the appearance of the full bust. However, I would imagine the very complicated relationship a woman would have with her new breasts, feeling both grateful for living but never being able to forget what she lost in the battle. Scars are an ever-present reminder of what we paid for a cure.

I recently read the book The Shining. I was struck by how often the now-sober Jack thought about how badly he could use a drink. It was a thought that could creep up at any moment and fighting that mental battle left him emotionally drained. Life “on the wagon” seems a daily struggle, although he’s no longer drinking. A true cure to alcoholism should heal these emotional scars.

When so much is lost in the process of the cure, when does the word no longer apply? I argue that the choice of the word cure was wrong from the start. We can treat our diseases, but they can never be cured. Curing a disease would mean that the scars – both emotional and physical – are no longer with us. Our diseases and what we gave for them become a part of us in a way that is haunting and beautiful. Our scars can drag us down emotional rabbit holes on bad days and propel us in directions we never imagined for our lives. However, the presence of these scars is proof enough that these diseases do not yet have true cures. I think that word should be reserved for when we no longer have to pay such a high price in order to keep living. So what cure would require no sacrifice at all? Death. I think cure is not a word that would appear in textbooks or suggested by doctors. I think we should save our curing for bacon.

[shellystory]

Cleveland Clinic Chronicles: July 4

I'm still incredibly nervous. Today we went to the Rock & Roll Hall of Fame, on the recommendation of Melissa, who works at my GI’s office and used to live in Cleveland. Every time someone asks what brought me to Cleveland, I sheepishly respond, “The Cleveland Clinic…” I wonder what they think of me when I say that. 

By the day's end, I was (am) a ball of nerves. There's so much riding on this appointment. I don't even know what to expect. All I know is I'm exhausted and this couch bed is uncomfortable. How did I get stuck on the couch bed? Is this not my trip? *Sigh*

HBD, America. 

[shellystory]

Cleveland Clinic Chronicles: July 3

I leave for Cleveland, OH, tomorrow. I’ve never been to Ohio. Not that I can remember. Sounds of my parents packing rattle through the house. My dad has been chattering about Michael Symon’s restaurants in Cleveland. I think that’s the only reason he’s coming.

July 5 at 9am, I have an appointment with Dr. Bo Shen. The world expert in IPAA or Jpouches. I’ve been hearing that name for a year now. It’s like going to meet a rock star, the president, THE Michael Symon of Jpouches.

I’m much more nervous than I expected. There is so much riding on this appointment for me: a potential new treatment, the chance for better health. But also another chance for failure. Failure at the highest level of expertise that I can find.

Doubt zips into my thoughts like a gnat on a sweaty summer day. Regardless of the hard evidence on scopes and in toilet bowls, the gnat still squeals, lies lies lies lies. Ever since my diagnosis, I've suffered with the neurosis that there is nothing wrong with me. Denial dive bombs towards my eyes as I futilely swat it away. I'm not sick, this is all in my head, whispers the gnat as it slinks by my ear. I clap my hands at nothing, applauding my own insanity.

In a perfect world, Dr. Bo Shen will be kind and empathic. He will listen to my story and answer every single one of my mothers questions that I swear I’ve answered a hundred times already. When he begins to speak, he’ll say  “Of course I can help you! The patient I saw not five minutes before you once had a similar problem. I fixed her up and she now is a trauma surgeon at Mass General and has seven majestic horses and seven sets of twins which do acrobatics atop her horses as they gallop through her summer villa.” I know this is just a fantasy, however; THE Dr. Bo Shen would never break HIPAA.

[shellystory]

Cleveland Clinic Cronicles: First a brief update

I've been lazy about informing my tumblr about the details of my health these days. In short, it's been pretty bad. I've got what is called “chronic pouchitis.” This means the pouch made of ileum is inflammed. It can be caused by a few things like drugs, infections, poor blood s upply and more autoimmune disease. We've already ruled out the more common causes and now are left to sort through the complicated diagnoses with their own ncomplicated treatments. In order to stay a “functioning” human! I've had to be on antibiotics nearly all the time: 14 days on and goal of 14 days off. The antibiotics usually make me feel better, but I quickly go back to feeling terrible without them. Hence, the goal of 14 days off antibiotics. I usually make it 10 days off, maximum, before I'm in so much pain and spending so much time in the bathroom I cannot function.

In terms of functioning, that has been literally just scraping by. Every day starts out well enough, but by about 4, my energy is totally gone. When I'm finally able to get home, all I can do is feed myself and crawl into bed. Most other students are able to put in a few hours of studying every night. Those missed hours really start to add up. I was able to complete most of the course requirements for my third year, aside from failing a few exams. Hopefully by August 2 I'll be totally caught up and officially a fourth year medical student. It's been hard getting used to failing like this. My parents asked me, “well why didn't you study!?!” I sheepishly responded that I felt sick and was too tired to get out of bed. Do I even believe myself? (More on my self doubt in tomorrow's post.)

On the horizon is my initial appointment with Dr. Shen on Tuesday. Wednesday is my pouchoscopy. Friday, I take Step 2 CS (part B of the second book in my board accreditation trilogy). It's a jam-packed week. Let's blog about it.