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Shortly after my wedding celebration in April 2017 I started having stomach cramps. These cramps turned out to be Crohn’s disease, which I was diagnosed with as a child but hadn’t effected me much at all growing up. I was actually undiagnosed with Crohn’s about 6 years ago!! My GI doctor’s theory is that my Crohn’s disease has been festering in my small intestines this whole time, which is an unusual location for it... usually Crohn’s takes root in the large intestines.
Unfortunately, since my Crohn’s had been untreated more or less since I was a teenager, it developed into cancer. As I said, I took the right steps 6 years ago to get it checked out and to see if it should be treated, but the doctor who tested me wasn’t looking in the right places. In this situation, there really isn’t any person to blame.
I developed a tumor in my intestines, and in November 2017 had about 18inches of my bowel removed and an iliostomy. In January 2018 I started my first round of chemo. I did great with chemo and had limited side effects other than an allergic reaction late in my cycle which is common for patients. My chemo cycle ended late June 2018. All my doctors were optimistic that we had beaten the cancer, so in August 2018 (after a brief healthcare detour to deal with an ankle fracture), I had my iliostomy reversed.
Unfortunately, at the end of September I started to feel some weight and pain in my lower abdomen. I took a trip to the ER and found out that I had a baseball sized tumor in my ovaries. This was astonishing because I had a cat scan in June that showed some relatively small ovarian cysts, but no tumor, and nothing of that size. It grew back immensely fast, and my oncologist told me that after the surgery I would have to be on chemo for the rest of my life.
In October 2018 I had both my ovaries and the tumors growing there removed. Sadly late October to November I was in and out of the hospital three times due to stomach cramps. At first my surgeon believed the cramps were due to scar tissue, but I finally put my foot down in late November and told them that it wasn’t getting better like they said it would and I needed some more treatment options. They had done cat scans before, but an MRI and a colonoscopy later they determined it was a very rapid Crohn’s Disease flare and put me on prednisone. Oddly enough my whole family was thrilled... we had been worried it was cancer again!!
I started chemo again in December 2018. Initially it was a struggle because I had an allergic reaction to one of the drugs they have me on, but now they have me on enough benedryl and steroids that it isn’t an issue. My biggest problem right now is that despite the prednisone my Crohn’s keeps flaring, so occasionally I have severe stomach cramps or am exhausted from diarrhea. Thankfully, my GI Doctor is going to try me on a new Crohn’s medication in the next couple weeks, so hopefully that will calm down those symptoms somewhat!
