J-tube update and a prayer request for my uncle ❤️

Kerissa Lee • April 16, 2026




Hi, friends,

I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what..

My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢

In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause..

Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness.

The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️

“Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada

One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙

P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst

Please pray ❤️

By Kerissa Lee • March 7, 2026
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️