So, you’re probably thinking, “what does that even mean?” Well, great question. I’ve had a hard time truly understanding what it is, how it’s effecting me and how I can treat it. Here’s what my life has consisted of for the last few years, and what I’m doing to live with it.
My doctor describes it as your body attacking it’s own tissues, deeming your body unable to heal and fight invaders, causing vulnerability to infections. My specific type of autoimmune disease affects my colon/lining of intestines, called Ulcerative Colitis. I’ve been seeing a doctor since 2015, where I was finally diagnosed in 2016 with Ulcerative Colitis after a series of tests, two colonoscopies and an upper GI scope (all in one year might I add). Oh, and a blood transfusion because I was dangerously low in red blood cell count. $$$$$$$
This particular autoimmune disease is really difficult for most people to talk about openly because, well, it’s your digestive system malfunctioning. And if you still don’t get what I’m trying to subtly hint at… it’s diarrhea. It’s constant urges to run to the bathroom. It’s extreme pain in the abdomen. It’s weight loss. It’s hair falling out. It’s rectal bleeding.
So, as a young woman who loves fashion, is very feminine, loves the outdoors, enjoys being around my friends and family, you can imagine that this is a hard topic to discuss and even harder to learn to live with. It felt gross. I felt gross. For a long time I felt like I was hiding because I was too embarrassed to go anywhere for fear of having to go to the bathroom. Like, seriously? At one point, after my honeymoon (my lucky husband married a lemon, sorry babe!), I was so sick that I lost about 20 pounds in a period of two and half weeks. I couldn’t walk or stand for more than 2 minutes without becoming extremely fatigued, I could barely take a shower. I was losing more blood than ever in my bowel movements. It was at that point I decided that there was something more wrong with me. And boy was I right. I had gotten e.Coli while in the Dominican Republic, a severe case of e.Coli. Like, I couldn’t even drive to work without having to stop several times and sprint into a gas station bathroom. I was up 7,8,9 times a night dashing to the bathroom. And there was not a single thing I could do about it because of my autoimmune disease. See, I’m not aloud to take certain medications, including antibiotics because my immune system is so weak that it could cause renal failure. YAY ME. I literally cried on the phone to my nurse in the break room at work when I got the news because I was so miserable.
So what we started was a strong round of steroid treatment (something I fought for a long time because it’s very common to gain weight and at the time of diagnoses, I was looking at my wedding in a few months – yes, I know, that’s very vain but it’s the truth) to pull me out of the flare-up (the rectal bleeding, constant urges to go to the bathroom, etc.) and fingers-crossed it would also kick the e.Coli out of my system. PRAISE THE LORD it worked, temporarily. By December 2016, I was on the right track to feeling better but my red blood cells were so low that my doctor feared for my life. So, the second colonoscopy, the upper GI scope and the blood transfusion all happened within a week of each other. Other than my red blood cell count being so low, my flare-up had subsided and my digestive system looked healthy. Thank you, Lord!
That brings us to now. I’m back on prednisone (the strong steroid treatment that helped me heal late last year) because I fell back into a flare-up and I was losing blood and mucus during bowel movements, and I was having those constant urges again (I know, so gross). It’s harder for me this time around because I feel like I’m experiencing more of the negative side effects, like extreme bloating (my stomach gets so round and hard that it hurts to touch), frequent headaches and my body feels depleted. Sometimes I have a hard time concentrating and feel confused which is very frustrating for me. But, the silver lining is it’s only temporary (4 months of treatment) and then hopefully after the treatment is complete, I’ll be in remission.
So, here’s what I really wanted to talk about – how I live with it. I keep a pretty strict diet because certain foods can trigger a flare-up and it’s just not worth it to me to be so miserably sick and in pain. I’m gluten free, diary free, and mostly alcohol free. I try to stay away from refined sugar, but I have a sweet tooth and it’s much harder for me to say no to a cupcake than it is for me to quit pizza cold-turkey. By doing this, I’m able to control inflammation in the gut and keep my gut healthy and functioning properly so it heals. As I learn more about my diet and how it plays into my healing process, I’ve appreciated food so much and have grown to have a better relationship with food. I eat really well and still have a lot of great “cheats”, but I just make sure that they’re within my dietary restrictions. I’ll definitely share my favorite recipes, meals, and snacks which are great for everyone, not just those who are dealing with an inflammatory disease.
Autoimmune disease cannot be cured, but it can be put into remission. Through the steroid treatment and the restricted diet, I believe I will get back to my normal self who isn’t afraid to leave the house. I can definitely say I’ve become more humble and open in the process. I’m not as afraid to share my story and the not-so-glamorous details of my life because I know it’s not something that I can control. It can hit me at any time, and I have often had immediate consequences when I’ve been exposed to something that triggers inflammation. It keeps me open-minded and has honestly made me a better person as a result. More understanding of others, more forgiving of others. Not that I wasn’t before, but I have a new outlook on life and I try not to take things personally anymore. But I’m not perfect and I’m certainly still a work in progress.
Through this I’ve learned to take care of myself first and be open about what I’m going through. I think the hardest part of all of this is feeling like I have to convince others that I’m sick because they just don’t understand. For a while, I didn’t look sick. It wasn’t until I contracted e.Coli and really dropped weight very quickly that people started to notice that I was sick. But the interest quickly faded for most when I wasn’t able to attend social functions and when I was regularly turning down invites to go out. But, I’ve been really blessed with a supportive and understanding group that I surround myself with. People who take time to learn about what I’m going through and be considerate of my circumstance. It’s been tough to see people leave my life who don’t understand that I’m sick and sometimes, more often than not, I just want to be at home, or at a home I feel comfortable at. It’s really tough to be out in public, particularly the nightlife scene and have to run to the bathroom, not knowing what’s about to happen. Especially as a woman when you’re supposed to be cute and proper. God forbid you have gas or have to race to the bathroom for #2, so unladylike. (I hope you hear my sarcasm)
I’ll continue to share my story and be as open as I can. My goal through all of this is just to help others and spread awareness about autoimmune disease, even if it’s just one person, to feel comfortable talking about their struggle, whether it’s similar to mine or completely unrelated. It’s important to learn that you aren’t defined by your illness and you aren’t trapped or alone. I honestly feel like I’ve been able to heal wholly by talking to loved ones and anyone who is interested about my struggles and what I’m going through.
I’m always trying to learn more about how to live with my autoimmune disease and I’m really interested in any natural remedies. While I am currently on a toxic steroid, I incorporate several natural supplements and vitamins into my diet. I would love to hear about anything you’re doing, any recipes that fit into my dietary restrictions that you like, or just to hear your story if you want to share.