I’m sorry I haven’t posted in a while! It’s been a pretty rough two months.. 🙁
The last half of March, I started experiencing severe, cramping abdominal pain, terrible nausea, distention (I looked pregnant! 🙁 )….and just felt really unwell. The abdominal pain started happening every few days to every single day. Pretty soon it hurt terribly to eat (much worse than the usual pain from gastroparesis) and drink water. 🙁 Even pushing meds through my jejunostomy tube caused pain right away. I lost weight and felt really weak. Everything was getting worse and not better, so I finally told my GI dr.
He wanted me to get a work-up at the ER. So on Tuesday, April 10, I went in. I was dehydrated from not being able to drink much at all (my daily IV magnesium and nightly TPN wasn’t enough even). So the doctors gave me more than 2 liters of IV fluids with dextrose. That helped a lot.
They drew a ton of labs and also checked to see if I had a bladder infection. Here’s where it gets kind of hard to understand… There are different parts to a urinalysis—-the first part showed that I had trace white blood cells. So the doctors weren’t sure if this was a borderline infection or what. The second part (called a culture screen) came back positive for infection. So I got admitted overnight, and they started treating me with antibiotics. But the next morning, the actual culture test (where they wait to see what kind of bacteria grows) came back and said, “No significant growth.” So it turns out that I didn’t have a bladder infection! We don’t know why it showed white blood cells or why the culture screen was positive…
One blood test (called lipase) did come back pretty high.. Lipase is made by the pancreas and small intestine. When I saw my GI doctor a couple of weeks later after this hospital stay, I explained everything that happened. And here’s what he thinks caused the severe abdominal pain, nausea, etc. He thinks I had a partial small intestinal obstruction. 🙁 He explained that they can be VERY painful and cause all of the symptoms I was experiencing, including the elevated lipase. The abdominal CT scan the ER ordered didn’t show an obstruction but he believes it’s because the scan wasn’t done in time and because I was at the tail-end of this (i.e., the obstruction was resolving which makes sense since I was starting to feel better later that day in the ER..). You might wonder, “What caused you to have a partial bowel obstruction?” The answer is—-adhesions. Having a jejunostomy feeding tube surgically placed in my small intestine (done back in 2014) can cause adhesions. I always thought adhesions were inside of the intestine, but he explained how adhesions are like webs outside/around the intestine. And sometimes, the intestine can get kinked, caught, or twisted on an adhesion….which then causes a partial or full obstruction. Hope all this makes sense.. :/ I asked him if this will happen again. He said it could or it may be years from now before another one occurs. I really hope it doesn’t because the abdominal pain was simply horrible!! 🙁
The day after my GI appointment, I had a follow-up with my urology surgeon. And we both were on the same page regarding this major bladder surgery. She (and I) feels like we need to put this surgery on the back burner for a little while because of all that has happened recently. Doing this surgery would involve using a part of the small intestine which would then cause more adhesions to form. 🙁 And because my GI system is not in the best shape in the first place, surgery would most likely cause complications. She brought up the Hippocratic oath, and she doesn’t want to cause more harm than good. Thankfully, my neurogenic bladder hasn’t gotten worse and has been stable for the most part, so I will be monitored and see her again in 6 months.
I’m more glad than sad about this decision because going into it, I just felt uneasy and didn’t feel ready for this major of a surgery. Also, it got postponed twice so I kept wondering if that was the Lord telling me that now is not the right time to have this surgery.
Anyways, this update is getting super long!! Tomorrow, I have a follow-up with my ENT (swallowing) specialist. Next week I have a genetics appointment at OHSU to discuss whether I need to take “malignant hyperthermia” precautions and stay away from certain anesthetics because of a specific gene mutation I have. And in two weeks, I see my orthopedic hip surgeon to get the ball rolling for hip surgery…. 🙁 Still need to get another MRI to officially confirm that my right hip labrum is torn, but it most likely is because I had a diagnostic ultrasound-guided hip steroid injection (the needle was so huge!! 😟 )…I had immediate pain relief which tells my doctors that the problem is directly in my hip joint and not something like muscle pain.. You’re probably wondering why I have these hip problems….well, it’s because I have loose joints from Ehlers-Danlos Syndrome. Too many things going on at the same time.. 😞
In addition, I officially weaned off one of my pain medications (with my pain doctor’s guidance), and it has not been easy at all. My small fiber neuropathy has been so painful now. 😔 Every night, it’s been taking me hours to fall asleep due to the pain! So hoping things soon improve because I’ve just been extremely exhausted every day..
Anywho, that’s all for now.. 😉 Thank you so much for continuing to pray for me!! You are all a blessing. ❤️
P.S. In April, I participated in the famous 30 Days of Bible Lettering challenge on Instagram. If you use IG, you can see all my lettering posts (like this one above). 🙂 My IG handle is @kerissa_kreative!