I’ve received quite a few messages recently asking for a health update and I realized I haven’t done one in a while so it is far overdue that I share what has been going on.
First and foremost, I have had so many other positive and exciting things happening in life that my attention has been on that and I’ve been in what I like to call “maintenance mode” health wise. Trying to get by day to day without making things worse but also I wouldn’t say really making things better. That is okay by me though! If most days I can function and live life happily I have come a long, long way in the past three years or so. I hate that this might jinx it but overall things have actually been pretty good.
By pretty good I mean by my standards of not in the emergency room and pretty much fully functioning. That doesn’t mean that my symptoms have gone away though and that other symptoms haven’t decided to manifest themselves unfortunately upon me. Those things still happen and are still there and I am going to share them with you. I feel weird sometimes going into detail about this stuff because I don’t want sympathy for what ailments I have. I know there are so many other worse things that I could be experiencing, I assure you I know that and I am so incredibly thankful that I can function the way I do. The reason I share is not to complain but it is to bring awareness. There are so many weird symptoms and problems I have run into over the years that are seemingly unexplainable by doctors and took my reading someone else’s experience to realize I wasn’t crazy. That is why I want to share. Hopefully by me sharing my health journey you can relate and maybe not feel like such a psycho.
So like I said overall my Crohn’s has been relatively under control. I am not in remission yet but slowly working towards it. I still go and get my Remicade every 6-8 weeks. Currently we are on an every 6 week schedule. That seems to be working well but the side effects still make me miserable at times. I do have to say though, when I started Remicade a little over a year and a half ago, I was totally unprepared to cope with the unavoidable side effects but as I’ve become a Remicade pro, I’ve gotten a better handle on managing them. CBD oil is my best friend in that regard. I take a small dose every day to help with pain, inflammation, anxiety, and a whole slew of other things that can be a separate post. But anyway, I amp it up after my infusion and when my side effects are bad. The side effect that is probably the most annoying is the joint pain. I can’t STAND it. I remember I went to geriatric yoga class at the YMCA, I’m not kidding you geriatric like right next to my grandpas retirement community, and I was in tears by the end because my wrists and knees were so swollen and in pain. From the former hot yoga enthusiast this was very abnormal for me. So this still happened but my CBD oil helps and I have a topical CBD cream that I use on my muscles and joints which is a huge relief as well. That is where we are with the Remicade situation.
I unfortunately got the news last time I was at the gastro for my infusion that I was long overdue for my colonoscopy/endoscopy so I had to go through that lovely experience last week. The prep definitely sucks but like the having diarrhea for hours on end isn’t that much of a shock to my body unfortunately so that’s not the part I really hate. It’s the fasting and pain and nausea from drinking that crap and the pain after the procedure. That is what really gets me. I do have to say an anesthesia nap is the best nap and I totally love the nurses at my gastro so they make the whole process a whole lot more enjoyable. I see them more than I see most of my friends and they all know my life story so… yeah. The colonoscopy/endoscopy situation was a success though. I still have inflammation in my ileum so they are upping my Remicade dose and my esophagus has some funky stuff going on but all in all not horrible! To go off on a tangent quickly I am an actual nightmare when I come out of anesthesia. Like actually satan. I’ve been known to cuss out doctors and demand a bedside cocktail just to name a few situations. I actually get very embarrassed because I spend like so much of my life with these people I can’t have them thinking I am the devil. This time I was actually really nice, chatted about dogs and Game of Thrones, requested a gingerale, you know, all normal sleepy people stuff. It takes me so long to get unconfused though and I was on some pain meds on top of it so things were not looking right from my perspective. When my doctor came in to give me my update I somehow thought he was saying I could go off of my medicine so I happily thanked him and said oh yay so I’m done with my medicine? Apparently from what my husband said this was directly after he said “we are going to up your medicine”. They both laughed, I was confused, my husband was embarrassed by me and then I reminded him that he practices the art of selective hearing often so he could CHILL and get off my back please. I actually didn’t remember anything my doctor said and had to get a debrief from Matt who so graciously accompanied me. This man COMPLAINED that he was hungry after it had almost been a full 48 hours since I had had a solid food. That’s like complaining that you have a tummy ache while your wife is in labor. He also made sure to make fun of me for yelling loudly how gassy I was while still waking up from my sedated slumber. Really keeping the love alive.
The real issue I’ve been having recently is with my sinuses. Now you wouldn’t think this would necessarily be impacted by Crohn’s but you know what HERE WE ARE. Your body is one big connected thing so what else can we expect. To give you some backstory I had sinus related surgery when I was 6 and then again about 7 years ago. That was the time I cussed out my doctor and told him I hated him and to get me out of there. During the recovery from that surgery I was also satan and begged my mom and step mom to take me back to the hospital because I was sure I was going to die. It seems dramatic, I know. But if you have had sinus surgery you know it is NO JOKING MATTER. I digress. So I got this surgery to remove my inflamed sinus tissue and then I got a really weird antibiotic resistant bacteria in my sinuses afterwards which was a hoot. I was alright for a few years but just recently it started to get worse again. Usually one of these surgeries is enough for one’s lifetime and I am hoping that will still be the case for me but like let’s be real, with my luck chances are I’ll be cussing out another doctor while coming out of sedation again soon. I won’t bore you with the whole story but basically my doctor wanted me to try a specific antibiotic but wasn’t really sure about it and then the side effects were nuts specifically in the gastrointestinal department so we had to nix that idea. Back to the drawing board, I just got a CT scan to see if the inflammation in my sinuses has returned.
Inflammation seems to just haunt me which is not unusual for Crohn’s sufferers or those suffering with other auto immune diseases as well. It took digging through the internet to find cases where sinus inflammation was linked to IBD and there is proof that it can be hence the whole your body is inflamed 24/7 and all that jazz. But I couldn’t find anything that was really helpful or someone saying here is what I did to make my sinuses better for good. So here I am waiting on the results of my CT scan and feeling like there is a large rhino running repeatedly across my face.
I’ll keep you all updated on what the results come back as. I am pretty certain this is linked to my Crohn’s in some way. Even if not directly, the inflammation piece is something we can’t ignore here. Hopefully I can get to the bottom of this so next time someone is frantically Googling “sinus pain and Crohn’s” maybe this pops up and you won’t feel so crazy.
I know this was a long one but, hey, it has been a while. I love hearing updates from you all too on your health journeys so please, please, please share via comments or if you don’t like putting your whole life out there on the internet like I do, drop me a message on Instagram!
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.
Welcome to my unfiltered commentary on crushing chronic illness in your 20's and everything that goes along with that.