When you can't see the pain
Updated: Jun 13, 2021
(Nick and I—2012)
Where to start?
Well, I guess at the beginning. No—not my birth (lol)—but the beginning of when I was diagnosed.
My wedding was on June 16th, 2012. I had my first colonoscopy 2 weeks before that and my symptoms of Crohn’s had become very apparent 6 months prior to that. I got my official diagnosis days before my wedding.
How was I told my diagnosis? I went into the specialist, was brought into a room by myself and waited for the specialist to come in. When she did she said I had Crohn’s disease, handed me a pamphlet and left.
That is a lot to wrap your head around at any age, but for me, it was a lot at 21. I went to work the next day, and when I told my boss the diagnosis (he didn’t ask, I shared) he was very kind, told me he suffered from something similar, and allowed me to go home (as I was crying and clearly not in a good place to be at work).
Why was I crying? It wasn’t because I had a life-altering disease. It wasn’t because I had to alter my eating habits and manage stress levels. No, it wasn’t those things because I didn’t know those things. I wasn’t told those things. I was handed a pamphlet and told to look up the information.
After I got back from my honeymoon, I was put on medication. But since I live in the great country that I do, my medication cost $300 a month. Even with my steller health insurance. And now I was paying that money I didn’t have every month to feel like absolute garbage.
I got so incredibly sick and weak. I was so bad on some days that my husband had to literally carry me to the bathroom. That would be after I would attempt to crawl and even that was too difficult. Thinking about those days now makes me tear up. I was 22 at that point and could be outpaced by a 90-year-old.
I ended up going off the medication a little less than a year after starting it because I couldn’t afford it anymore. My husband was upset that I stopped, but he fully believes in my body my choice. So with the suggestion of some extended family, I loaded up on taking vitamins for my many vitamin deficiencies.
Life was hard for years. Zero energy but was working a very high-energy job, so the (at least) ten hours I did there every day always knocked me on my ass. I still had days/ weeks where my body felt like I had been hit with a truck. I had muscle spasms, and everything I ate made me sick. But it was my life at that time, and I assumed that was what it would be like forever.
Fast forward to 2017—that summer was the worst summer of my life. At the beginning of June that year, we lost a dear friend of ours in a motorcycle accident. Shortly after my stepdad was diagnosed with stage 4 esophageal cancer. To say I was stressed would be putting it mildly.
I also had started a new position at my work earlier that year and was still catching on to the new role. I was so happy to be out of the very physically demanding job I had before, but the new one was mentally demanding, and it just added to my stress level.
(Quinten and I—2017)
In 2017, just like in 2012 where I had to be carried to the bathroom, I again was feeling so weak and in pain, I couldn’t even sit in an office chair.
Being the ‘can’t show weakness’ human that I always was before, I never called in. Nope, instead, I showed up to work, shut my door and put my laptop on the floor. I would curl up into a ball so that my stomach didn’t feel like my intestines were being ripped out and had a heater right next to me to help with the chills. (My co-worker knew my state and would check on me throughout the day and get me anything I needed. She is an amazing human and I don’t know what I would have done without her).
That summer, I was hospitalized with an abscess on my colon. I was in there for almost a week and was told I would be getting a colostomy bag. I was devastated. At that point, I was given a new specialist, who was very angry I wasn’t taking anything to treat my Crohn’s (though it hadn’t been that bad up until the stress and in my opinion—other meds that weren’t verified between dentists and doctor and I believe it messed with my system). Regardless, that specialist talked at me at all points and did nothing but dismiss any of my concerns or thoughts on treatment options.
I was put on Remicade and Imuran and thankfully did not have to get that colostomy bag.
Again, everything was good. I went to infusions every 8 weeks. And still, even with great insurance, the medical bills added up. But this time, my husband and I agreed we needed to suck it up and figure out paying for it so that it didn’t happen again.
(My bonus mom, Tammy, and I—2019)
Fast forward again to 2019. I had gone off the Remicade and Imuran the previous year because we had decided we wanted to have one more baby. My specialist was livid that I wouldn’t take the medication through the pregnancy, but he couldn’t provide me with proof that it wouldn’t harm the child, so I went off of it.
Again, all was good until about two months after he was born. I will say, that hospitalization was the worst thing for me personally. I had been sick for about three weeks before that. I had a few different ER trips and hadn’t slept for more than 45 minutes at a time because I couldn’t stay out of the bathroom. I was too tired and sick to take care of either of my sons (I am so lucky to have my husband and my sister—she lives with us and takes care of my kids while we are at work). She was there with me during my maternity leave too, and if she wouldn’t have been, I don’t know what we would have done.
I was hospitalized for seven days. I was heavily drugged for five of them. I didn’t eat anything besides jolly ranchers, ice pops, and chicken broth six of the days. The positive side was that my skin looked amazing lol. The negative side—well, let’s list it.
My husband was beyond stressed with a newborn, a four-year-old, work, a sick wife, and well, life stress in general. So with him being stressed, he wasn’t very nurturing. He was very short on the phone, so I stopped calling. He was short when he came to the hospital with my newborn, so much so, that I asked him not to come back. I was told once again, I would be getting a colostomy bag, and they literally couldn’t figure out what was making me so sick (besides that it was Crohns related). And the same specialist from before, well, he told me I should have stayed on the medication like he said (insert eye roll emoji).
Now hate on the doctor all you want, I sure do. But not on the husband. Things did just go downhill from there for us, but that is a whole other blog post. Don’t judge the caretakers of people with diseases like mine until you have walked in their shoes (something I had to learn too).
Anyway, I dumped my specialist very quickly after that and got a consultation with a new one. And let me tell you—you know in the movies when a woman walks in and they slow down time and bright lights beam behind them to show you they're someone to be amazed by? This woman should have had that entrance.
I hate thinking how everything I had gone through could have been avoided if she had just been my specialist all those years before. In our visit, she asked me to explain what I knew about MY disease. The disease I had had for almost ten years. And I had nothing. I knew nothing. She was very saddened by that.
Guys, she literally grabbed out a piece of paper and did her best drawing of intestines and colon. Then she broke down everything for me and how Crohn’s disease works and then showed me why mine is/was so severe. She listened to each one of my questions and gave me thorough answers. She was happy I hadn’t taken the medication while pregnant and said she agreed with how I had handled things. And her nurse? Also, an amazing woman who deserves bright lights and a slow-down entrance because when I got put on new medication she looked up all the assistance programs for me and filed all the paperwork. This made it so my $3000 medication cost me $0.
My Crohn's is very severe (again, it doesn't seem like it to me or others because I haven't had any surgery's to remove anything and I do not have a colostomy bag), but my insides are essentially nothing but scared tissue. The medication itself is harmful as well, as it puts me at a greater risk of three different kinds of cancers. I have specialists for two of those for regular check up's, and one of them is more of a "just hope we catch in time" type game.
But with ALL of that being said, I’m happy to report I’m healthy (as healthy as one can be when your own body is trying to attack itself—lol). I have regular check up’s with my amazing specialist and I continue to see the amazing people at my infusion center.
The biggest piece of advice I have for ANYONE dealing with medical-related issues, especially when you have to have a specialist, please continue to look for one until you have the right fit. It may seem like a hassle, but you need to have someone who doesn’t talk at you, but to you in a manner that you understand.
If you made it this far, thanks for reading and letting me share my story. I also wanted to add, anxiety goes hand in hand with diseases like this, but I will talk more about that in future posts.