Tag Archives: chronic illness

Biologics for Crohnologics: Meet Humira

1 Feb

Trial and error. Guinea pig. Game of darts. Playing blindfolded. Pincushion. Russian roulette…. All incredibly unfair statements, but this is how treating a Crohn’s flare honestly makes me feel. Let the record know, I have an amazing doctor, and I am great hands with him.. but the reality is.. Crohn’s has a mind of its own, making it difficult to keep up with – not just for the patient, but for the doctors as well. Every patient’s illness is different, with different symptoms in different locations, which progresses at different rates on a path of its own. Also let the record show, there is no cure for this illness – so managing systems is the only thing a doctor can do you for you. There is no fixing, solving or curing going on. Just alleviating symptoms, in order or medical priority – which of course, also seems to change as a patient’s illness morphs – on its on schedule…

So.. it has become evident that my existing treatment, Remicade, has reached is expiration date. An expiration date that came way earlier than hoped… just shy of one full year. Apparently, I developed antibodies that “block” the medication from being absorbed correctly, or doing the job correctly. (I’m not in the medical field, and sometimes, I will use my own language because that is what I understand, so hang in there with me here…) Anyway, it stopped working….

My doctor had wanted to try one last “blast” of the Remicade, but after seeing me 5 minutes before the infusion, and the level of pain I was in – I decided to decline the final IV. My doctor and nurses all supported this decision and immediately went to work on plan B… Plan B, that wasn’t there a year ago for me (from my understanding). Thankfully, the year on Remicade bought me a little time for the market to introduce more options for my case. Let me specify more FDA-approved options. Don’t you dare hop on Google and search treatment for Crohn’s to prove me an idiot here – don’t forget, everyone’s illness is different so this is not prescriptive like the flu where everyone gets the same treatment regime. I’ll take a win where I can get it.

So, meet, Humira. Humira is another biologic drug, which means it targets specific parts of an overactive immune system to reduce inflammation. This one in an injection versus an IV like Remicade. This one became a good option for me (not originally ideal) because of the joint pain I have in addition to the “traditional” Crohn’s flares, fistulas and fissures. I also found out that most Crohns patients are required to start with Remicade (I do not know why).

This is one of the trainer pens they sent me (plus the actual first injection injection training with my infusion nurses)… Kinda like an epipen…

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Steps are pretty easy… ice your leg/abdomen for roughly 20 mins, take off grey #1 cap, keep flush on skin, do not move pen, take off maroon #2 cap, plunge maroon button, keep flush on your skin for at least 10 seconds, check the little mushroom key-hole. Once window is yellow and line stops moving, remove, (do not wipe blood as you’ll remove medicine), add band-aid and ice for rest of day to keep welts and allergic reactions (expected) down.

So, I packed up my cooler with 4 of these suckers and headed off to my infusion center last Friday. (You are not allowed to give yourself your first round as they apparently need to legally give you training and also monitor you for major reactions during your first shots.) I thought I was ready for an easy 10 minute visit… yea right…

My faithful infusion nurse gave me the first one after icing down my legs… oh my Lord, I was not ready for that. Now, being a Crohn’s patient, I’m used to needles, sticks, bad sticks, giving blood, IVs, bad IVs, giving myself B12 shots… yea, nothing was going to prepare me for 10 seconds of this. I know, you are thinking – Litz, its’s TEN SECONDS, MOVE ON. It was like being stung by a hive full of bees and not being able to run away from it. Then, I had to give MYSELF THREE MORE OF THESE THINGS! I’m really not one to show too much emotion in public, and being a Crohn’s patient, we generally have a fairly high tolerance for pain… but these actually took my breath away. My poor nurse wanted me to slow down, but I just wanted to PLOW through these and get them over and done with…. But at least they were done and KNOCK ON WOOD, I’ll never have to do 4 injections again!! ūüôā Since I did have some welts they needed to watch me for breathing issues for a little while, so I did win a consolation prize of some hot tea and more ice – score.

HINT TO ANYONE STARTING HUMIRA: My nurses advised me to NEVER inject in the abdomen as it will be even worse there.

Image(Top Left: My first delivery of Humira, yes it comes to you house and lives in your fridge, Top Right: My cooler packed with first 4x shots/pens, Bottom Left: Icing down the reaction, Bottom Right: hot tea consolation prize).

I don’t know yet if this will work for me, I heard it can take up to 3 months to work (lord help me if it seriously takes that long…), but I’m trying to stay optimistic that this will help me find remission. I will take shots every other week until I find out, though! Now that the first 4x are done (THANK GOD), I go down to 2x (once), and then the plan is to give myself 1x shot every other week. I’m told these will get easier – here is is to hoping!

But I’m not off the hook tomorrow completely, it is still a shot day for me ūüė¶ Its B12 day for me. This is an easy one, and one I’ve been doing for over a year now. All set up and ready to go for the morning – love these ones! Helps with energy, so maybe it’ll be a good Friday! ūüôā

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Worse than Hallelujah – honestly…

15 Jan

It’s no surprise that I’ve found myself at a loss of words lately. After my trip to the ER two nights ago, I am again, left with an overwhelming sense of uncertainty in my life. Yes, it was a productive trip in that a new, additional diagnosis was made – which honestly comes with little to no comfort behind it. Although the news was not terminal, that I had zero support system beside me to reach out and hold my hand through it left me my own yet again to push through it “realistically”. Fuck. I am so exhausted of “being realistic”, “being the champ”, “being the inspiration”, “being the strongest person you know.” Let’s be clear here. I’m no one’s champ. I’m not strong now. And if I were an inspiration, it would be for what you should NOT to do, or feel or say…

My latest trip to the ER stared… Well truth be told, it was several weeks in the making, as my doctor deflected my repeated cries for help with honestly valid answers such as “it’s side effects of the extremely high dosage of prednisone”, “we tapered you too fast”, “you are going through withdrawal” etc. I can’t fault him. I was going through so much. This amazing man who I look up to (who is usually sarcastic to get you through the really hard days) has transitioned his care-taking strategy with me by now taking me by the hands and hugged me on more than one occasion over the last few months while I simply cry and break down at every single appointment for no reason at all. ¬†Sure, it was obvious that the prednisone really was affecting me negatively. So I get his linkage and can’t even say he was deflecting my cries for help. He did encouraged me to use the pain management available to me. Telling me not to be worried about looking like an addict, I clearly needed it. But then when the call came in to him that I was bleeding, it was clear that the pills were to blame for slowing down my system a little too much… I just couldn’t win!

Anyway, my amazing dr stopped answering his cell this weekend, so I had to call the oncall DR this Saturday who was quick to simply put me on me on more prednisone. Ok. Great. He promised relief by morning. And guess what! I had relief… For the first time in almost 3 months I enjoyed my morning walk with the dog, I caffeinated up, ate and went to work decorating the craft nook and office walls!

Then the pain started to creep in and creep in some more. Shit.. Called the oncall DR again. He said to get to the ER, he had no advice. And click he was gone… Ok. Now it was time to try everything in my arsenal as the thought of the ER and another hospital¬†admittance¬†scared the living shit out me! ¬†Out came the yoga mat, and some seriously earthy crunchy music. Nope. Ouch. Ballet stretches from my 15 years at the barre… Ouch. Hot bath.. The negative energy just intensified. Added Epsom salts. Stupid idea. Polish off the Dilaudid I had left (only 4mg) with some yummy hot tea, fluffy blanket, pillows and my entire petting zoo with music. Pain just got worse as the minutes ticked by.

Ok now that was all stupid . Now I am loopy and dizzy from drugs, it’s foggy and I need to get to the ER.. My pain has only intensified in the last 3 hours, and I am now in no shape to drive. Thankfully, a local friend agrees to take me with the promise he can drop me off at the door and avoid watching me fall apart inside. ¬†Score.

Just as I expected, they immediately treated me as if I were a drug addict simply looking to score some pain meds for the night – even though I clearly had a bag packed with me ready to be admitted to the hospital. ¬†I took my begging for a bucket to throw up into it, and bleeding out of the IV they started to take blood samples. ¬†Don’t forget, they don’t actually GIVE drug addicts the drugs they so crave… So I was left with a dangling IV starter dripping blood all over me and my bed… awesome. .. I’ll spare you the real image… 3 hours later, a doctor finally comes in who seems to get it. ¬†She states that my inflammation levels are indeed all over the charts as are other markers, so an IV is finally started – drains almost immediately. ¬†Clearly I was dehydrated – couldn’t they have figured that one out by all the water I was asking for? ¬†40MG of Prednisone administered moving me up to my dreaded 60MG (I’ll get into this within a different post). ¬†Finally in comes the Dilaudid and anti-nausea meds. ¬†Neither work. ¬†They inject me 2 more times with Dilaudid… STILL NO RELIEF. You have to be kidding me. ¬†I’m trying to walk around, trying to do stretches, crying… the nurses keep¬†looking¬†at me like I’m an idiot… I’m asking for them for recommendations to make the pain go away – they said to quit moving and lay still. ¬†Oh sweet nurses, you have NO idea what this pain feels like! ¬†Finally around 2am, the DR comes in and suggests a muscle relaxer. ¬†I said OK – whatever you’ve got, I’m happy to try. ¬†RELIEF! ¬†I¬†actually¬†fell asleep sitting up! ¬†It relieved the pressure around my joints enough to actually let the pain pills do their job!

They then checked me for the flu – since I was healthy, they decided the hospital was not a safe place for me (oh yes, then came a long lecture of why in the hell I would subject¬†myself¬†to the¬†hospital¬†during a flu epidemic… excuse me, did we not just go through HOURS worth of pain management trial and error and clearly my pain had risen from a 7.5 to a 15 in a matter of those hours? ¬†Did they not see what had transpired in front of them? ¬†Anyway, we agreed to send me home with all the medication they would have kept me on for a few days in the hospital… only guess what… she didn’t give me the one that was the key to it all… Valium, the muscle relaxer… honestly…

A dramatic taxi ride home (the taxi driver refused to take me to an ATM to get him cash then¬†cussed¬†me out in some language I do not know for not having cash when we got home – mind you after he drove past my house THREE TIMES, I eventually just got out of the taxi and said goodbye and walked home). I was finally home…

Then, onto the radio comes Amy Grant’s, Better than a Hallelujah… you have GOT to be kidding me…

“We pour out of miseries, God just hears a melody, beautiful, the mess we are. ¬†The honest cries of broken hearts are better than a Hallelujah.”… Well… I guess God must just LOVE Crohn’s patients, because we sure are NOT out rejoicing. ¬†We sure do give Him some pretty awesome melodies of miseries… Hope he enjoyed this one… Because I wasn’t enjoying singing this song.

Crohn’s Disease – The ever nagging reality…

9 Nov

I’m going to put it out there. ¬†Crohn’s Disease blows.. and more than the fact I can NEVER remember how to spell the damn thing…

After 8 years, I can say I’m now¬†sufficiently¬†used to full-out running to the bathroom, pulling over on the side of the road due to pain, consistent lack of energy, always picking up a cold or flu or worse, and the first name basis with my GI doctor and surgeon. ¬† I’ve lost friendships and relationships over my illness – that too I am used to. ¬†(Hey, it isn’t my fault that I¬†legitimately¬†have to cancel plans and can go weeks or more without leaving my house, but not everyone understands.) ¬†I’ve had employers treat me poorly if I call out of work or go home early or have an emergency DR’s appointment. ¬†Never being able to ride a bike again due to surgery, etc. ¬†That is all expected with it… But I never expected to walk away from being a first time home owner because of it…

During my home inspection this weekend, the inspector found black mold in the master bathroom. ¬†Now, this would not necessarily be a deal breaker to the “normal” person. ¬†Sure, no one wants to live with it (and shouldn’t), but the “normal” person really could have had it¬†remediated¬†and moved on. ¬†Not me. ¬†I ended up physically ill from it. ¬†It is hard to tell if it was the environmental pressures in the house or just the sheer anxiety and stress felt by the situation, but I left the house wheezing and spent the greater part of the evening laying on my bathroom floor…

Now truth be told, the house had a LOT more wrong with it than just the mold. ¬†I was prepared to spend the time and money fixing the house and slowly finding the diamond in the ruff, but the mold really scared me. ¬†And for the first time in my life, I actually listened to my disease. ¬†It just isn’t a smart gamble for a Crohn’s¬†patient¬†to¬†buy¬†a home with a mold issues. ¬†The contract on the short sale has officially been canceled. ¬†I’ve said goodbye to my plans for the house.

Honestly, I’m OK with that. But I am really not OK with the fact that this disease continues to control every aspect of my life.

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