Starting in high school, every morning I would wake up with horrible gut pains. I just skipped breakfast and left my pants unbuttoned until the pain subsided and went about my day. Years in I was always told by doctors it was IBS, Gastroenteritis, eat better, lose weight, etc...
In 2010 I started getting serious about my health and lost 70 pounds by early 2011. With this amazing, hard-earned weight loss came a sudden onset of anaemia and knee effusion. I had my knees drained 7 times in 6 months, but RA runs in my family so my orthopaedist was certain that was the cause.
My 30th birthday came and my wish came true, I found out I was pregnant with my second child. I suffered a miscarriage at 9 to 10 weeks. A couple months after my miscarriage I went to the ER because I had unbearable gut pain. I thought it was somehow residual from the miscarriage. They did scans and blood tests, told me I was still anaemic and that I had a severely inflamed ileum. They asked if I had ever been checked for Crohn's. I told them what doctors had been telling me for years. I went to a GI a couple of weeks later and they ruled out Celiac, and scheduled me for biopsies with endoscopy and colonoscopy which ultimately confirmed I have moderate to severe Crohn's Disease. It has most likely been going on since high school and for whatever reason, the extreme dieting I did triggered a very bad flare.
I got started on Remicade because I explained to the GI I wanted another baby eventually. The Remicade infusions were life-saving for me and I even had another baby while on Remicade in 2012. There were some complications, but not from the treatment. In 2015 I had a major flare, only to discover I had an obstruction and needed a resection. During my surgery they discovered my gall bladder was covered in scarring and needed removal as well. I remember waking up from that surgery like it was the worst physical pain of my life. It was horrible, and worst of all, it was on my daughter's birthday.
Fast forward to a couple of years ago, my inflammation was getting bad again and I was flaring more... The Remicade was no longer working and despite the use of Imuran, I had created antibodies to work against the Remicade.
I've now been on Stelara for 2 years and I've had 2 flares. The most recent biopsies from August show new scarring and inflammation and I'm starting to build up antibodies again.
The fear is always there that I'll have another resection and have to try another treatment. I have found Intermittent Fasting helps me feel better with inflammation and less guilty when I don't eat because I'm afraid of the aftermath.
I cook and have my kids eat similar to me most days because I am scared for their future health. If I give them the knowledge and tools now, maybe they'll handle it a little better than I am. I am on many medications in addition to the Stelara, including Medical Marijuana and 75% of the time everything helps as it should when it should... I won't lie, I have moments where I decide a plate of wings or bowl of Thai is worth the risk lol. It helps knowing other Crohn's Warriors have some of the same struggles and I'm grateful for groups and social media platforms that allow us to share with others so maybe people will understand that this is not just a "pooping disease".
I'm a single mom of 2 amazing kids. I work 40+ hours a week and I run out of spoons daily because I basically have no choice. My kids are very patient and understanding and help when necessary, my mom lives with us so she and I work together to take care of each other and my children. I do have my "village" of amazing friends and family who are there at the drop of a hat when I need them so I'm incredibly lucky ❤❤❤
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