My biggest reason for sharing my GI problems and my latest journey I’ve been on is to encourage others to see someone if they’re not feeling right. We know our bodies best, so trust your gut! It can be so confusing to know what doctor’s to go to and where to start, so I want to share my story to help others who might be going through some GI struggles.

Background

Most of my life, I haven’t had any GI issues. In 2012, I had a bad reaction to an immunosuppressant (medication I’m on for my heart transplant) and my intestines ended up having a severe case of angioedema (swelling). I ended up being in the hospital for a few days, having a colonoscopy and endoscopy and seeing multiple specialist. My dad, a pharmacist,  and my brother, an ER doc, were the first ones to suggest it could be an allergic reaction to my medication. Once they took me off it, I was fine! For those wondering, it was rapamune (sirolimus), that was the culprit.

GI issues now

Since then, I truly haven’t had any major GI issues. In Sept. 2016 I did Whole30 and started reintroduction in early Oct. 2016. No matter what I ate, I’d end up having severe stomach cramping and other problems. After about two weeks of dealing with cramping, I knew I needed to see someone. I put it off for so long because I thought my body was reacting badly to dairy/grains/etc. I made an appointment with my primary care physician. She tested me for different viruses, stomach bugs, etc. Of course, all the tests came back normal.

Next, I saw a GI doc and spoke to my heart transplant team. I’d been suffering with cramps and diarrhea for about a month at this point. The GI suggested that they do a colonoscopy and endoscopy to see what was going on and the transplant team tested me for CMV (cytomegalovirus).

The CMV came back negative and the colonoscopy showed ulcers in my colon and GI tract. I was actually really glad that I had ulcers. This meant that something was/is wrong and I wasn’t going crazy.

The GI doc decided the ulcers looked exactly like a virus, but the weird thing is, is that none of my blood or biopsies came back positive for any viruses. He gave me two different antibiotics to take for two weeks. I finished the antibiotics on Dec. 24.

I had a follow-up with my GI on Tuesday. I, luckily, haven’t been having as much stomach cramping. He thinks the antibiotics hopefully got rid of whatever was going on. The next steps are to wait and see how I feel in a few weeks. If the cramping comes back, I’ll be scoped again to look for new ulcers and probably treated for Crohn’s disease. If it doesn’t come back, it was probably an unknown virus.

It’s now a waiting game and I’m praying this is the end of it. Only time will tell. Being a transplant patient adds an extra layer of complications to this whole thing. Some of the medications I’m on for transplant can cause other issues and it often takes me longer to heal. So while my ulcers could be getting better, it’ll just take a little longer to tell.

I feel like this post is very long winded and I apologize. I hope this is helpful for those who might be dealing with GI issues.