It's been a while since I've gone into Katie and her medical issues. I'm not quite sure how much everyone really understands about what is wrong with her and the treatments that she undergoes to retain a sort of normalcy in her life. So, in the hopes of bringing a better understanding to others, here goes.....
If you want to see when it all began, you can go back to this post that explains it all. This has been our life since August 2014.
In 2014, Katie was diagnosed with:
- celiac disease (a digestive and autoimmune disorder that results in damage to the lining of the small intestine when foods with gluten are eaten)
and decidedly worse,
- Crohn's disease (an inflammatory bowel disease (IBD) which causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. The inflammation caused by Crohn's often spreads deep into the layers of the affected bowel tissue and can be both painful and debilitating and sometimes may lead to life-threatening complications).
You can read more about Crohn's disease (and it's sister, Ulcerative Colitis) at this link: http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-disease/
In Spring 2015, things got a bit more interesting.
Katie's symptoms were taking a turn for the worse. She was put on a course of steroids to lessen inflammation and an immunomodulator called Azathioprine to try to stop her immune system from freaking out. As soon as she finished her course of steroids, her symptoms actually got worse. She stopped eating and ended up in the hospital. You can visit this post for more information on that.
We had to make some big decisions at that point to get Katie healthy enough to get out of the hospital. Things were NOT looking good. She was not eating, she had a super high fever (103+), the doctors figured out that she was having an allergic reaction to the meds she was currently on, and she was having diarrhea every 30 minutes that really wasn't diarrhea at all, it was blood and green pus.
Failing at our attempt to get a feeding tube up her nose and down her throat so we could go to an all liquid diet, we had to go the medication route. We had two choices. Humira (adalimumab) or Remicade (infliximab). Both of these medications are known as "biologics". Biologics are proteins that block the action of specific molecules in the body that are involved in causing inflammation. Biologics are delivered via injection or taken intravenously.
Both medications have the same potential side effects: hives, redness, chest pressure, itching and swelling, pain, bruising, headache, coughing, rash, nausea, stomach pain etc. And both medications have this other, more scary, warning: "There have been reports of serious infections associated, including tuberculosis (TB) and other infections such as viruses, fungi and other bacteria that have spread throughout the body. On rare occasions certain types of cancer, including lymphoma, have been reported."
Yes. Cancer.
Now this is where you have to weigh the risks of the medications with the risks associated with letting your IBD flare uncontrollably and quality of life.
Using an anti-TNF/biologic along with an immunomodulator would increase her risk of developing cancer to 6 per 10,000 treated patients. See a handy graphic below........
Of the two options, Katie chose Remicade. She receives this medication via an IV infusion. Humira, the other option, was an injection we would give her every two weeks. She wanted less overall "pokies", so chose the infusion route. She just as easily could have chosen Humira.
The medication worked wonders and she was out of the hospital and recovering as soon as she received it.
It's been almost 3 years now that Katie has been on Remicade. And, so far, so good. The medication keeps her symptoms under control and it has become our normal.
We have had to increase the amount of Remicade and the frequency she receives infusions to keep the medication levels high enough to combat the symptoms.
Katie also takes a bunch of medications and vitamins each week.
Methotrexate is also known as a "chemotherapy drug". It's used for the same reason in people taking chemo for cancer. Methotrexate has it's own nasty side effects - flu-like symptoms, headache, hair loss, dizziness, drowsiness, upset stomach, reduces absorption of folic acid, can cause liver damage.
Methotrexate, since its job is to suppress Katie's immune system from attacking the Remicade proteins, suppresses her ENTIRE immune system and makes her susceptible to all sorts of sicknesses floating around. Colds, flu, pink eye, everything.
But, it's the stomach related side-effects that cause the most distress to Katie. Methotrexate decreases her appetite and makes her feel generally yucky. To combat this, she takes a drug that decreases nausea and vomiting called Ondansetron (Zofran).
She takes the Zofran 30 minutes prior to the Methotrexate. She takes the Methotrexate at night, right before bed, so that she can sleep through any remaining side effects. If she feels really yucky, she'll take another Zofran the morning after.
Everyday, she takes two vitamins. Folic Acid to combat the loss that is incurred by the Methotrexate and Vitamin D3 to combat nutritional loss due to any remaining inflammation from Crohn's disease.
For more information on the medications that she takes, you can visit this link: http://www.crohnscolitisfoundation.org/resources/types-of-medications.html. It explains all the different options people with IBD can try to alleviate their symptoms.
If you want in-depth info about specific meds - what they do and what their side effects are - you can visit here: http://ibdmedicationguide.org/browse
At every IV infusion, vials of blood are taken for testing. The blood is tested for all sorts of things, but mostly to monitor any potential side effects the medications are having on her.
And now comes the part where we walk you through an IV infusion.
Infusions have become a part of life. In the beginning, it was stressful. If they couldn't find a vein first try, Katie would get stressed. She was also a "screamer". If they had to search at all for a vein once the needle was in, she would scream bloody murder. As the years have gone by, she's realized that she needs to relax and breath in order to help the nurses find her veins and she remains quite calm...even when I'm freaking out on the inside.
Each IV infusion takes about 4-5 hours to complete. The Remicade must start off on a slow drip to decrease the chance that her body will have an immune response (also known as an allergic reaction) to it. As the infusion goes on, the drip can get faster and faster.
We usually pick a Saturday so that Katie doesn't miss any school. It was also requested that Katie pick the earliest appointment on infusion days as her veins do NOT like to cooperate sometimes. If she's sick and partially dehydrated it makes it even worse.
The day prior, she begins to up her intake of fluids.
The morning of, we try to put some breakfast in her (she doesn't routinely eat breakfast) and we keep her arms as warm as we possibly can.
Here she is watching a show before we leave.
Her appointment was at 9am in Seattle on this particular morning.
It takes us about 30 minutes to get to the hospital.
We leave an hour prior to her appointment time.
As soon as we arrive at the hospital, we put on some LMX numbing cream in the car.
The numbing cream numbs the areas that might have the IV put in them.
Because we never know when Katie's veins will behave, we put the cream on six places. Every time.
We put it where a typical IV would be (the elbow-pit), on the back of her hand and on the side of her wrist on both arms.
Better to be over prepared than under.
We wrap each place that has the cream with Press N' Seal wrap to keep the cream in place.
It takes 20 minutes for it to numb up.
We check in and head to the infusion center.
We get a room, they take her temp and blood pressure.
Next task is to put heating packs on all of the pre-numbed areas.
In this picture, you can see the Press n' Seal wrap.
(I think she's trying to take her own pulse. She was being silly)
While her potential IV sites warm up, she's given some pre-medications, Tylenol and loratadine (aka Claritin). These medications are given to lessen the potential effect of any allergic reactions.
There's a bit of wait for the cream and pre-meds to take effect.
And, then, it's time to get down to business.
The first attempt on this day was a failure.
Our favorite nurse, Jean, came in to help out for the second attempt.
Here she is in mid-poke.
Katie's veins like to squiggle and hide.
After all the "pokes", Katie can now tell if they have hit her vein or not.
She can tell just by feel if they have gone through it or if they've hit it.
It's weird.
Sometimes things have to get a bit unconventional.
In this case, Nurse Jean found a vein but it wouldn't draw back using a syringe. She was having trouble filling vials to send for blood testing.
She didn't want to mess up the vein for the IV.....
......so, she let gravity do the work by letting the blood drip into the vial.
Katie was only too willing to help by holding the next vial.
After 3 years of infusions, she is not squeamish in the least.
Katie and Nurse Jean made quite a mess this time around.
There was blood that had dripped on the pillow they were using and since they had to try two times to find a vein, that meant twice the amount of needle related junk.
IV was in and ready to go.
Katie always prefers to have the IV placed in her hand.
She says the elbow-pit "feels weird" and having it put in the side of her wrist is painful, even with the numbing cream. The nurses use the side of wrist only as a last ditch effort.
With the blood for testing drawn, the IV line is attached and flushed, and it is time for the last pre-medication.
This is methylprednisolone. A steroid. Another prevention against a reaction to the Remicade.
As soon as the methylpred is done, it's time for the Remicade to start.
This is it below.
It drains from the bag above into the long tube.
As I said before, the drip has to start off slow.
The rate is increased every 15 minutes about 5 times, until the last fast-drip that lasts 30 minutes.
The nurses also come in every 30 minutes to check vital signs and monitor for reaction.
Usually, Katie spends this time playing video games on her DS or watching Tinkerbell movies on our DVD player.
Today, she must've been tired, and she was a little sick.
She was watching a movie, but then fell asleep.
Finally, the infusion was over.
Out comes the IV.
This is what the IV looks like when it's out.
Katie is fascinated by the "little straw" that goes into her vein and delivers the medicine.
All bandaged up.
Just a little leftover blood on her knuckle from when they were filling the vials for blood testing.
After the IV is out, she has to wait 30 minutes to, again, make sure there's no allergic reactions to the Remicade.
At 30 minutes, we get the all clear and we can go home.
The rest of that day, she feels pretty wiped.
You can actually see the medication as it goes to work on her.
Throughout the infusion process, she loses the color in her face.
She becomes very pale and sickly looking.
I call it, jokingly (for her sake), Zombie Katie.
It's hard to tell from the pictures that there is a marked change in her appearance.
So, there you have it. All the details.
Medications weren't our first choice.
But, she's been good now for three years.
There is a chance, at some point, that the Remicade will stop working.
Then we'd have to move to another treatment option or another medication.
Humira would probably be the next go-to, depending.
But, for right now, we're good.
Katie is responding well to treatment.
Her life is pretty "normal" for a girl with a chronic disease and that's more than we could ask for.
