The tenth anniversary of my diagnosis of Crohn’s disease is quickly approaching. This month, however, is right about the time it hit me. I’ve written about that before, so I won’t go into those details. What I do need to talk about is the severity of this disease and it’s complications. Every year around this time, when kids are heading back to school and loading up on vaccinations, I make a quick little facebook posts to remind my friends and family to please keep their distance if they have been sick or vaccinated.
Most of the time people respect my wishes, but a lot of times others must forget, or think I am exaggerating, or still don’t understand. So after going through this OVER and OVER for the past 10 years, I have finally decided to explain things a little more in depth here. I wont get into lot’s of scientific mumbo jumbo, because the only people who will read and understand that don’t need to hear this in the first place. Instead I am going to put things as simply as possible.
So, I know many of you have seen the commercials for medications that end in a very long list of possible side effects and complications. The ones that say “Do not start this medication if you have an infection. Serious infections resulting in death have occurred.” etc. etc. That’s the medication that I am taking to survive. The drugs available to “treat” Crohn’s just shut down your immune system and are not a cure. They have all the same side effects as chemo. So you could die from catching a common cold that progresses to pneumonia because you are immunosuppressed.
I will give you a quick break down of how these medications work before I continue. Everyone has an immune system. Let’s call it your little good guys. My good guys are very confused. They recognize healthy cells as foreign and attack them. So in order to literally keep my body from killing itself, I have to suppress my immune system. That means that I do not have the ability to fight off infection. A normal person can catch a cold, ride it out, let those white blood cells do their job, and in a few days they are fine. If I catch a cold, I don’t have any of those little good guys inside me working to fight it off, because my medication is PREVENTING THAT. So the cold can progress into an infection. Infection can lead to sepsis. And then comes death. If a normal person gets a stomach virus they would be miserable for a day or two. A stomach virus could have me hospitalized for over a week, and put me in a flare that can last well over a year. I am STILL in a flare that started over 3 years ago from food poisoning.
I am not a hypochondriac. I am not a germaphobe. I mean what I say that your cold has the potential to kill me. it HAS happened. Here is the actual list of warnings from Stelara, if you are truly interested:
Aside from infection, Crohn’s disease can become deadly in a multitude of ways. I could die from dehydration due to the chronic diarrhea. I could lose organ function due to anemia. I was VERY close to that happening last year when my hemoglobin was a 4. I had to receive 4 pints of blood. If it had dropped any lower than that I would not be here today. And I had absolutely no idea that it was so low. I could die from malnutrition because of my inability to absorb nutrients. I could list a whole lot more, but I won’t go far down this road either because I want to focus on complications caused by the medication and not the Crohn’s itself.
I’m sure by this point you are wondering “why not just stop taking immune suppressants?”. Trust me, Ive been there and tried that. And that’s another thing that could have killed me. While I thought I was doing the absolute best thing treating myself naturally and not filling myself with these awful medications, I was really hurting myself, and I am still suffering for it today. Crohn’s disease is an invisible illness. Which not only means that YOU can’t see it, but sometimes….neither can I. Even though I felt okay in the moment, what I didn’t realize was that my body was doing so much damage to itself. Then all it took was a bit of food poisoning to set the bomb off. I became so malnourished, so anemic, so inflamed. The scar tissue built up in my intestines, and fistulas formed. Crohn’s left untreated can…..lead to death. So until there is a better option, my life is dependent on this medicine that also puts my life at risk. Awesome.
One big problem is that whenever I do get sick, my body works extra hard to make more of those confused little good guys. And those little boogers wreak havoc. So not only do I have to suffer through whatever illness I have contracted, but now I am dealing with a huge Crohn’s flare. So either way, I am very likely to end up hospitalized if I get sick.
Another thing that is so important for people to understand is that vaccinations can also cause death. I KNOW this is such a controversial topic and I will never tell you what you should do with your own children or your own body. I WILL tell you that you need to keep your kids and yourself away from me or anyone else who is immunosupressed if they have recently been vaccinated. By recently I mean within a week’s time. Here is what Stelara specifically says regarding vaccinations:
“Patients being treated with STELARA® should not receive live vaccines. BCG vaccines should not be given during treatment with STELARA® or for one year prior to initiating treatment or one year following discontinuation of treatment. Caution is advised when administering live vaccines to household contacts of patients receiving STELARA® because of the potential risk for shedding from the household contact and transmission to patient.
Non-live vaccinations received during a course of STELARA® may not elicit an immune response sufficient to prevent disease.”
I am not making this up. Your. vaccines. could. kill. me.
If you know someone with an autoimmune disease, please PLEASE keep them in mind when you decide whether or not you should keep your kids home today. Even if you think it just may be allergies, say something and let US decide if we want to take that risk or not. If you see anyone wearing a mask, it is most likely that they are protecting themselves against you. Not the other way around. Don’t be afraid that those people will get you sick, but be mindful that you could do that to them.
Another thing I have to add is that every single case of Crohn’s is different. Just because you knew someone who had Crohn’s and they started taking pink drink every day and were “cured” does not mean that is the case for anyone else with Crohn’s. Crohn’s is a very serious, very debilitating invisible disease. You don’t know the beginning of what someone may be going through. And chance are, they are doing everything they can not to bring attention to it. Do you think I want people to know that I have been bleeding for 3 years, or that I have the urge to vomit every time I have a bowel movement, or that I ruined my pants because I didn’t run into the gas station bathroom fast enough? Definitely not. You ask how I am and my answer is “good”. I don’t want people to look at me differently. I want to feel normal. Just don’t compare one person’s troubles or abilities with another’s. Be understanding. Be uplifting. Be supportive. Be a friend.
I truly hate having to write about this, but people need to know and understand what the immunosupressed have to deal with. I get so tired of being thought of as a hypochondriac, or attention-seeking. I try my best to keep the attention as far away from my crohn’s as I can. The nature of this disease is embarrassing. But sometimes I have to put my comfort aside in order to raise awareness and possibly save save someone from a nasty infection, or a two week long hospital stay, or exposure to a deadly disease. It can all be avoided if people KNOW better.
Even though I am ten years into this journey, and I have forgotten what a normal pain-free body feels like, I still have faith in a God that heals. I believe that my God has the power to rid me of any disease. I know His promises, and that by His stripes I AM healed. It may be tomorrow, it may be 50 years down the road, but my healing is there. And I will continue to help and encourage others along their journey. I am thankful for every trial I have experienced because “in ALL things God works for the good of those who love Him.” (Romans 8:28) All the good things, all the hard things, all the sad things, all the unbearable things… They are all a part of His plan.