Tests and More Tests…

Kerissa • November 21, 2013

Hey friends!

Just an update for you—this week has been crazy busy!!  I have 5 appointments this week alone!  Hopefully things will get less hectic next year.

Monday, November 18th—  I had to go through a most unpleasant GI test that involved water-soluble contrast and fluoroscopy.  I’m traumatized for life!  And I hope I never have to repeat it again..

Yesterday (Nov. 19th)—  I had physical therapy, and I also saw my pain specialist for a follow-up.  You want to hear something awesome?  Dr. S told me that there’s a company out there that now makes MRI-compatible spinal cord stimulators!  For those who don’t know, I had a SCS implanted back in 2011 for CRPS nerve pain in my feet.  But last year, I had to get it explanted because of the need for brain/spinal cord MRIs.  I miss my stimulator terribly!  So Dr. S said he’s willing to place another SCS in my back once this mitochondrial disease work-up is complete!

Nov. 21st—  Tomorrow I have to get an abdominal ultrasound which is the 2nd GI test that the Motility medical director at Cincinnati Children’s requested.

Nov. 22nd—  Friday I have a gastric emptying scan scheduled in Nuclear Medicine which will take 3-4 hours..  This is the 3rd GI test that Dr. K wants.

Nov. 25th—  A barium Upper GI study is scheduled on this Monday.  For the test, I have to drink about a cup and a half of barium..

Nov. 27th—  I see my Sleep Medicine dr. for a follow-up because I started using continuous positive airway pressure (CPAP) last week!

November 28th—  My extended family is coming over for Thanksgiving at my family’s house.

December 1st—  My parents and I leave for Ohio!

Dec. 2nd—  first appt. with one of the GI motility drs.

Dec. 3rd—  I’ll be seeing Pulmonary Medicine.  Immediately after that appointment, I’m getting admitted to the hospital.  Anesthesia will come to see me in my hospital room, and I’ll be having a nasogastric tube inserted to prepare for the GI procedures the next day.

Dec. 4th—  will be taken to the OR where Dr. K will do several extensive GI procedures, including taking biopsies and checking for anything abnormal like inflammation, ulcers, etc.

Dec. 5th—  Dr. K will start manometry testing in my hospital room.

Dec. 6th—  Depending on the above GI test results, Dr. K may perform further studies like an esophageal manometry or PH-impedance probe test..

Dec. 7th—  I have a tentative 2nd sleep study scheduled Saturday evening if the Pulmonary Medicine docs want more sleep info..

Dec. 9th—  On Monday I’ll be seeing Cardiology and Orthopaedics.

Dec. 11th—  I have an appt. with the mitochondrial disease specialist and genetic counselor in the Human Genetics dept.  We’ll discuss my nuclear mitochondrial exome sequencing results.  Neurology will see me as well possibly after this appt. or on Thursday/Friday.

Dec. 14th—  The plan is to head home!

The coordinator in GI told me that this schedule is bound to change, so we just need to be prepared to be flexible..

Praying you all have a blessed Thanksgiving!!

P.S.  Next week I’ll be taking a blogging break, but don’t go away!  Lord willing, I’ll get back to the blogging world in Ohio!

Surgery Update 😊

By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it.. 

August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul