My Crohn’s toolkit (Part 2, return from vacation)

I’m back for part two of my return from vacation trilogy and ready to share more little pearls of wisdom that I gained from all the chaos. As I mentioned in my last post, one of the main takeaways I had from three vacations in about a 2.5 month span of time is that I need to prioritize sleep and caring for my body.

Showing off my eye mask for sleeping

I ran myself into the ground trying to prepare for vacation and never got the sleep I needed to recover in between each of my trips. The additional physical and emotional stress I put on myself set my already out-of-whack immune system into overdrive and caused a number of immune reactions when I finally came back home and binged on a loaf of sourdough.

As I prepare to write this next part and share more of my personal story, I often debate how much information and what details I really want to share on this oh-so-public world wide web. But the truth is, I have found so much support and gained so much knowledge from reading other people’s experiences over the years while searching every possible term and complication of Crohn’s Disease on the Internet, that I do want my stories to help others as well. Don’t get me wrong, I have been lucky to have some really amazing gastroenterologists taking care of me on this journey, but there is a lot to be gained from hearing someone else’s story who’s going through a very similar thing; it’s always nice to know that we’re not alone.

As far as diseases go, this is not an easy one for many people who have it to actually talk about. The two forms of Inflammatory Bowel Disease, Crohn’s and Ulcerative Colitis, don’t really make for good dinner conversation and many people find it embarrassing. Most people don’t want to talk about any aspect of it, even my gastroenterologist is always so surprised that I just come right out and tell him what’s going on because he has to pry information out of his other patients!

So, let’s just get it out there. For those of you who don’t know and haven’t Googled what Crohn’s Disease is, it’s an autoimmune disease that attacks (destroys) the digestive system. Symptoms are usually uncontrollable, bloody diarrhea (and when I say uncontrollable, I really mean uncontrollable); perianal abscesses; damage to the intestinal lining; ulcers anywhere in the digestive tract (hence the bleeding); and when the ulceration becomes too severe, it can require surgery to remove parts or all of the affected areas, which may mean the need for a J-pouch or ostomy bag. A 2010 online article from the Crohn’s & Colitis Foundation states that up to 75% of Crohn’s patients will require surgery at some point. Along with those amazing symptoms and statistics, it’s usually accompanied by severe pain, cramping, bloating, and extraintestinal (not involving the intestines) manifestations like skin rashes, arthritis, inflammation in the eyes, bone loss, kidney stones, anemia, and more. Who doesn’t want to talk about all that?!

Which leads me to reason one of 8,967,542 of why I worry. OK, maybe I’m slightly exaggerating about how much I worry, but the point is, I worry a lot…and I worry a lot about Crohn’s. In my last post, I mentioned that after indulging in some sourdough, my body went haywire and I developed some minor cramping, mucus, a skin rash on my legs, and an abscess. All pretty clear signs of inflammation in the body to me. The problem with an abscess related to Crohn’s Disease is that if it ruptures inside the body, it can cause sepsis and–and severe cases–lead to death. Also, once an abscess has developed, there’s about a 50/50 chance that the abscess will later lead to the development of a fistula. Which is an abnormal tunnel that forms from your intestines to the outside of your body (or another organ) and usually requires surgery. None of which I want.

The reason I bring all this up, is to make the point about how important it is to truly care for our bodies, provide ourselves with appropriate rest and sleep, and learn to control our stress (especially over the things we can’t control or have minimal control over). Still, I totally get it that it’s easier said than done. I also want to introduce you to two of my top go-to tools for managing some of these crazy symptoms of Crohn’s.

Stress is no doubt a trigger for many people with autoimmune diseases and it definitely played a role in my most recent flare up after returning from vacation. I’ve now been making a very deliberate effort to get to bed early enough so that I can have at least 7 hours of sleep each night and feel better prepared to take on the day. I’m sure we’ve all heard it many times, but I think it’s important to reiterate that a lack of sleep weakens our immune systems, increases inflammation and cortisol levels, can prevent us from losing weight, impairs cognitive function, affects our mood, and raises blood pressure…just to name a few. Seeing how quickly I declined from the lack of sleep, amount of stress, and food sensitivity, I realized that the first and easiest thing I could do to take better care of myself was to start prioritizing sleep. It’s hard to manage a daily workout, be productive and alert, and be in a good mood when you’re constantly suffering from poor sleep.

Quick Tip: If you happen to be in a relationship where your partner stays up late and then enjoys coming to bed and watching TV for a few hours (I have no idea what this is like…), I recommend wearing an eye mask for improving your sleep. With the volume turned down low and my eye mask on, I fall asleep almost instantly — now my picture at the top should make sense 😉  I now even wear it on nights when Jeff is out of town because it blocks the soft glowing moonlight coming in from the high windows, creating a dark and restful environment. Anyway…

In learning to prioritize sleep, I’ve also been focusing on finding small ways to take better care of my body and listen to its needs. If I’m dragging from a long week at work, I don’t force myself to workout anymore. Instead, I might set the alarm for an extra hour and get some additional sleep. If I feel stressed, I make an effort to do something that will lift my mood…like sitting in the sun for a few minutes to feel the warmth on my face or simply taking a few deep breaths with my eyes closed. These small actions bring the world to a brief pause for me and give me a chance to get some clarity and re-prioritize whatever list of tasks is making me stressed.  I know it might sound hokey, but think about what short, easy things make you happy and start adding those to your day. It will help 🙂 I still have a long way to go, and am far from perfect at doing this, but even just starting to incorporate a few small things like this has brought a calmness into my life that I didn’t have before (especially to my internal monologue!).

Seeing as I’m no stranger to running myself into the ground, I have found one tool in particular that I keep on hand as my go-to remedy to keep myself healthy. Amidst the return of some minor Crohn’s symptoms after vacation, I also started to feel like I was getting sick. We all know that feeling where you’re just about to hit the wall and you can feel a cold or flu coming on. When that starts happening, as it did this last time, I reach for my Oil of Oregano. Jeff makes fun of me because I tend to think it can be used for anything, but it is known for its antibacterial, antiviral, antifungal, anti-parasitic, and anti-inflammatory properties…it’s basically anti everything 🙂 It also helps boost the immune system.

I first learned about taking Oil of Oregano during one of my many searches to heal Crohn’s. I stumbled across Jini Patel’s website years ago and saw her 7-day antiviral wild oregano oil protocol. As a side note, while I never tried her supplements, I did try a do-it-yourself version of her meal replacement shake; spoiler alert, it didn’t help my Crohn’s. The Oil of Oregano protocol–on the other hand–is something that I’ve kept around ever since first trying it. I don’t follow her protocol exactly, but when I start to feel sick, I’ll take a few drops under my tongue, followed by lots of water, multiple times throughout the day for about a week. So far, it seems to keep me well and even seemed to keep my immune system strong while Jeff was in the hospital (I constantly took Oil of Oregano while he was sick). This is the brand I like to use. When choosing your own, make sure you are getting a good quality supplement that has a high level of carvacrol and is intended and safe for consumption. Only you can decide if Oil of Oregano might be right for you… 🙂 Also, a word of caution, if you use it on your skin and it’s not diluted with another carrier oil (like olive oil), it will burn. Do some Googling and a bit of your own research about how to use it properly if this intrigues you 🙂

hypochlororegano

The last tool I want to introduce today is actually marketed as an eyelid and eyelash cleaner; it’s called Hypochlor. For those of you who have seen the 2002 movie “My Big Fat Greek Wedding,” you’ll recall the father character always wanting to put Windex on everything as a cure-all. Well, that’s basically how Jeff and I view Hypochlor. The eye surgeon who removed his eye a year ago and has been doing all the reconstructive work for the prosthetic, clued us in to this great little medicine-cabinet-must-have! It basically kills everything. So, if we have a cut or scrape, we Hypochlor it. Small bump or pimple, Hypochlor it. Whatever it is, we Hypochlor it 🙂 I’m mentioning it because I’ve now already told you that I had an abscess develop after vacation. So, after a number of sitz baths and waiting for it to burst (while trying to stay sane and keeping my fingers crossed that it didn’t rupture internally and kill me…because my mind always jumps to the worst possibility), I started applying Hypochlor and continued to do so after it burst. The abscess healed beautifully and hasn’t reoccurred, so now I simply hope I fall into the 50% category of not having a fistula develop.

Life will always provide an endless number of things to worry about, but health and disease don’t wait for work deadlines to pass or big events to happen. Start making your own health a priority today if you’re not already. Breathe deeply, sleep more, and never stop trying to be the best version of yourself possible. There’s no one right way to do something (including how to treat/manage Crohn’s), but I believe with enough persistence and determination, you can find the one right way for you!

Cheers to good health!

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