I've had this disease for 10 years, and can only begin answering this question. Symptoms and lifestyle change daily, and are different for everyone.
Pain. This was my first Crohn's symptom, and continues to be the constant reminder that I have an autoimmune disease. I first went to the doctor for Crohn's due to pain in my lower right abdomen - right near the appendix. I almost always have some level of pain, but generally am able to ignore it if it is a 4 or less on a 1-10 scale. Some days I venture into the 6-7 range, which is pretty unpleasant. When I went to the ER for my surgery, I told them the pain was about an 8-9, but keep in mind that I couldn't stand up straight or walk, and I had a tear in my intestine!
Digestive issues. These are the main symptom most Crohnies experience (typically 💩, 🤢, and 🤮). Unless I'm having a really bad flare, I have been fortunate to avoid these for the most part, not to have these symptoms very often. Another related symptom here is loss of appetite. This happens on occasion, and is tough to deal with. I know I should eat, but am not hungry, or am worried that anything I eat will make me feel sick, so I just don't eat.
Fatigue. I am tired. All the time. It's a miracle I have the energy to train for triathlons (in fact, some days, I don't). Part of this is related to anemia, though my current iron levels are good; Crohn's is just an exhausting disease. I take regular naps every Sunday afternoon, a weekly designated time called Kitty-Kelley Nap Time (Pinky Kitty naps with me almost every time). I occasionally have to take naps during the week too; something that has become much easier now that I work from home. Some nights I also have insomnia - I am exhausted and just want to sleep, but my mind is moving a million miles an hour, or I am restless, or stomach discomfort is keeping me up, resulting in a tough-to-end cycle of fatigue.
Weight Gain/Loss. I have no control over my weight. I won't eat for a week (aside from clear liquids), and will lose no weight, but then when I'm back to eating, suddenly will lose 10 pounds without thinking about it. Or, I'll start exercising and gain 10 pounds. In fact, my body shape completely changed after my surgery, and I had to buy nearly a whole new wardrobe, even though my weight was relatively unchanged.
Diet. I am not technically on any dietary restrictions as a result of my disease; however, what I can eat without experiencing symptoms can change at the drop of a hat. Right after my surgery in 2013, my doctor told me to eat anything and everything I wanted; however, every time I at a salad/lettuce, I would have some symptoms. I stopped eating salad for about 4 months, then tried eating a salad one day, and was fine. Not long after my diagnosis, I realized that eggs made me sick more often than they didn't. It look me almost 5 years, but I finally realized egg yolks upset my GI track. Now I do what I can to avoid egg yolks, though sometimes I fail - back in March, I had a nutella & fruit crepe, which ended up leading to a pretty miserable, flaring week for me.
How do I manage flares?
When these symptoms get out of control, I have to take measures to avoid a hospital stay. As much "fun" as those are, I would prefer to skip them as much as possible in the future. Below are some of the strategies that I use to try feeling better, though there are some instances when I continue my lifestyle without any changes and just suffer through the consequences...
Medication. This is one of the biggest ways to manage the disease. Even when in remission, Crohnies have to continue taking a whole pharmacy worth of drugs to keep it that way. That is why I ended up with a flare earlier this year - the doses on my meds were messed with (lowered), and I didn't realize until I started to feel sick. Now that I'm back on the proper dose, things have calmed down.
Diet. When I feel the discomfort of a flare coming on, my first line of defense is watching what I eat. Clear liquid diets are the most useful (jello, broth, water, non-pulp juice) to help calm my angry intestines. After things start to calm down and I start to get hungry, I'll start easy with the BRAT diet (bananas, rice, applesauce, toast), then work my way up to regular food again after a couple of days.
Sleep. Some days I just need to sleep. Or relax as much as possible. Sometimes I'll work while sitting on our super comfortable couch, getting in as much relaxation as possible. I'll take mid-day naps, or go to bed at 9pm and wake up at 9am, sometimes feeling a bit better (though sometimes not).
Mental games. I try to keep my outward attitude about my disease positive. It is not easy to live with Crohn's, but attitude makes a HUGE difference. I have a lot of fun making jokes and being very sarcastic. I always talk about how much "fun" it is to have Crohn's, how "excited" I am for all of my tests, and how much I "enjoy" taking all of my meds. It helps to trick my brain, and also makes for a generally better experience all around. The outward attitude is contagious to my inner thoughts, which are sometimes less cheery.
All in all, this is a tough disease. Symptoms change daily, and without good strategies to get through it, I'm sure it is even more miserable. That's why I try to focus on things I can control: attitude and listening to what my body is telling me. I've learned that ignoring the symptoms doesn't make them go away; only addressing them will help.
Something else that will help? Finding a Cure!
The Crohn's and Colitis Foundation is committed to funding research that finds a cure for these terrible diseases. This year, I am once again taking part in Team Challenge. I am racing the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here.
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Stay tuned for the final installment of this blog series (Part 8): Advocacy
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