Living with the Invisible Disease: Treatment after Diagnosis
After the initial diagnosis, they hurry to make an appointment for an office visit to arrange the next step of the journey.
The treatment.
This is where my age of 15 came into play as a negative in this adult office like many other things.
I felt completely out of place in this Outpatient Center.
Because most kids go to the Children's Hospital for their Crohns or in general for their Inflammatory Bowel Disease. And these doctors have experience with children and what to give them as medication.
The next step though for everyone in the waiting process before you get to the medication phase is the steroids.
The purpose of these steroids is to act as an anti-inflammatory medicine. Some people have very mild Crohns disease or IBD and they just have to take steroids in order to reduce inflammation.
For others with a more severe Crohns disease, they need a more severe medication.
Whether that includes...
- Infusions
- Shots (Examples include: Stelara, Humira, and others)
- Or other medicine
And I do not enjoy shots at all.
While an infusion is essentially an IV that runs through your system. I thought it was at least a better option cause I can trust a nurse to get it in the vein.
(Or so I thought when one of the nurses taking my blood thought it was okay to miss my vein. When I told her I don't think she was in my vein she had the nerve to say, "I'm taking your blood so of course, I am." I thought in my head if I scraped my knee I wasn't hitting a vein but I am still bleeding.)
There are three known infusion medicines that deal with IBD or Crohns:
- Remicade
- Entiyvo
- Tysabi
(Warning!!!! For those with an Inflammatory Bowel Disease like Crohn's, medicines that help other people like Advil or Aleve, are strictly forbidden. If you choose to take these medications, there is a strong chance for internal bleeding!)
I have a family history with leukemia and breast cancer and even in the diagnosis stage before the colonoscopy, the doctor said you may have Leukemia, Crohn's, or Ulcerative Colitis.
Which in itself scared me a bunch.
So when he essentially told me Remicade was an infusion that had a chance of resulting in Leukemia, I was stunned and scared. If I had a chalkboard in front of me with Remicade written in chalk, I would take that chalk and draw about a million lines through it.
These medicines are scary, it felt like walking into a haunted mansion waiting for something to pop out at me. I didn't know what to do with all this information; the doctor looked at me cause I was the soon to be adult. With my uneasiness, they were supportive and understanding that we needed time.
So my dad and I decided, in all honesty, that this was our only option...
Entiyvo
This seemed like a safer option for us. I also didn't have to miss as many days of school and I wasn't going to be in the infusion chair for as long as a Remicade infusion.
30 min > 2 hours
Then they called with the best news we could've heard. (I'm being sarcastic.)
Cough, cough (Let me get my best doctors voice ready)
"I'm sorry but we can't get the Entyvio for Felisha. We forgot how young she was and the Entyvio is for adults. We would try to give it to her anyway but two things: 1. She is not 18 yet so we don't know what the medicine will do to her; and 2. The insurance won't cover it.
Do you guys have $5452.07 just sitting around?
Because I surely don't.
We were dumbfounded because we felt as though we were back at square one with all this information.
As our only other option, we decided to trust the doctors and go with the Remicade. As they kept telling us, "We will constantly screen you." and "Don't worry not everyone will get it."
My question is, do they know who they are talking to?
If we are being honest here I don't think they did. But I think they wanted me to feel safe with my only option.
Even with this news, I am lucky that I don't have Crohn's as bad as some do in the world. Some need surgery because of a hole in the bowel wall, extensive bleeding, a scar that can cause blockages, or if toxins spread through the blood because the colon is being stretched.
So every 8 weeks for 2 hours for the rest of my life I go to an infusion center for my infusions. While I'm at home I go to this outpatient center but while I'm at IUP, I'm going to the hospital to get it done.
Right before the infusions they give you steroids and mix together the infusion medicine when you get there in case you don't come. This is because of how expensive the treatments are, and it would be a waste of a lot of money to mix the medicine together and the person not come.
At this point, they take your vitals multiple times throughout the process, hook you up to the IV, and let it drip for about two hours. During this time you can do homework, watch TV, listen to music, sleep, eat, or play on your phone.
If I'm being honest with all of these appointments, I missed a lot of school that I had to make up. These infusions took up more than half the school day and the Outpatient Center is only open during my high school hours and only open Monday - Friday.
My advice for those who are going through this exact same thing is to choose the medicine you think will help you and don't let this stop you from living life.
Flares will always be a possibility and no matter what medication they give you, the foods you eat and the stress you get will affect you and your gut.
Copyrights
https://larstheyeti.tumblr.com/post/135271346045/food-poisoning
https://tvgag.com/gag/the-doctor-said-all-my-bleeding-was-internal/
http://imsomebodee.com/
http://www.dumpaday.com/funny-animals/funny-animal-pictures-of-the-day-22-pics-51/
https://chronicillnessmemes.tumblr.com/post/157844524390/stomach-vs-heart-chronicallyugh-hey-kids
https://thespooniewitch.wordpress.com/2019/03/01/when-your-labs-are-normal-but-youre-not/
https://www.youtube.com/watch?v=pCIGTeyIs0g
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