A New Year.

Kerissa • January 4, 2015

Happy new year, everyone!!  I’m sorry I never wrote my usual last-day-of-the-year “reflections” post.  I was admitted to the hospital the day after Christmas and got discharged this past Tuesday, so I didn’t quite feel up to blogging.

The jejunostomy tube feeds trial failed on Saturday—I have very slow small intestinal motility and hypoactive abdominal sounds.  It causes terrible abdominal pain, distention, and nausea.  The IV team came by Sunday to place a PICC line (peripherally inserted central catheter) in my upper right arm.  And Sunday night, the doctors started TPN (IV nutrition) very slowly to bypass my GI tract.

Once I got home, 3 different TPN nurses from home health came by Tuesday, Wednesday, and Friday to teach me and my mom how to administer and hook up to TPN.  They also drew blood work (which my GI specialist wants completed weekly) to monitor all my electrolytes, triglycerides, etc.  I also got my PICC line dressing changed twice—a nurse will be coming once a week to do this as well.

The CRPS has been flaring up a ton in my right arm from all the trauma.  Dressing changes are so painful with all the tape removal, etc!  So my pain dr. will be squeezing me in soon to try and figure out what to do about this.  I can’t use my arm well, and the slightest touch causes severe nerve pain.

TPN initiation has been a big step.  I see my GI specialist this Monday to go over everything and discuss continued tube feeds trials as it’s not good to stay on TPN long-term.  And for the first time ever, the hospitalist gave me and my family a serious talk about disease progression, prognosis, and how I need to get my PCP more involved because of all these changes.  It was different hearing that for the first time..

Yes, I have been and will be facing a lot of unknowns in the future, but the Lord is Sovereign!  Since 2010, each year has been getting more and more difficult as you can see, but that’s the beauty of a NEW YEAR.  I look back on the previous year, and it always gives me so much hope, knowing that a gracious and faithful God will continue to carry me and my family through these ongoing challenges and trials.

It’s already 3 days into 2015!  I’ve shared this before because it’s my favorite verse!  “…it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death.  For to me to live is Christ, and to die is gain “(Philippians 1:20-21).

 

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