Working backward to get to the diagnosis.
In June I started having severe stomach pain, nausea and feeling dizzy. And I’m not talking about a stomach ache like having a virus or food poisoning. I am talking about “drop me to the floor pain” with chills, sweating, and feeling like I would faint from just the pain. Deep, stabbing, burning pain. I was unable to eat much more than 1 cup of food each day. Somedays I could not get out of bed or stand long enough to shower. I constantly felt cold even when I was sitting outside in the 90-degree heat.
I made an appointment with my GI dr to see if we could get some answers. She ran every test and procedure that she could and came to the conclusion that I needed to be cared for at a bigger hospital with more resources and Drs who specialize in rare disorders. Tests showed that I had ulcerative colitis, microscopic colitis, and ischemic colitis.
Because one of those diagnosis’ is big enough, she was confused at how my testing could come back positive for all three. It also created difficulty on how to treat and help heal me.
2012 was my first ischemic bowel attack. That attack was induced by the medication methotrexate that I was given for an ectopic pregnancy. I was admitted to the hospital here at home but after 3 days, I was transferred to a bigger hospital 2 hours away. I was in the hospital for 3 weeks while my kids were being cared for by family. It took me nearly 6 months to recover from that, but once I did recover, I felt back to normal and good as new.
I then got pregnant with Harrison and felt really great! I had a few complications at the end of my pregnancy that required frequent monitoring and an early delivery. But it all turned out just fine. I felt good and healthy and we had a strong baby boy.
Fast forward to 2014, I started having bad stomach pains and it was determined that I needed my gallbladder out. They took my appendix out in the same surgery. We were hopeful that this surgery would solve the last bit of my GI distress and symptoms.
I felt amazing for about 5 months until I started having unusual neurologic symptoms. I would fall easily and frequently, I was dropping things, and I had numbness in my back and tremors in my right leg. It was so strange and frustrating to feel like I had no control over my body. I checked in with my family practice Dr, and they could not determine the cause of my symptoms so they set me up with a neurologist.
During this time, I had been seeing a rheumatologist for my joint pain caused by Ehlers-Danlos Syndrome. The only thing I really knew about EDS was that joint instability, weakness, and skeletal pain it caused. I had no idea what havoc it could cause internally and systemically. Because EDS is a connective tissue disorder, it affects ALL connective tissue. As we learned more, it was worth pondering if EDS had been causing some or all of my GI issues.
The beginning of 2016 seemed promising as I was checked out to be healthy by the neurologist, and we discussed options for care for when and if my symptoms reappeared. I had a really nice spring and about May I started to feel sick and weak again. While the stomach pain was not unusual or alarming for me, my near fainting spells and total body weakness had me confused and worried.
In June when I was not able to eat due to severe pain, I went back to my GI dr and we tried to figure it all out. As June went on, I got weaker and sicker and we weren’t making any progress in finding the cause of my symptoms. The dr was trying all different sorts of medications and procedures to find a cause so that we could make an accurate care plan. It just wasn’t happening. By the beginning of July, I was in the ER weekly for pain and weakness and dehydration. I really really struggled with dehydration. My GI dr knew that things were getting worse for me so she was able to get an expedited appointment at the Mayo Clinic.