This month.

Kerissa • May 20, 2016

I’m sitting here in my naturopathic physician’s clinic, receiving IV alpha lipoic acid which is what my pain dr. and mito specialist recommended.  So I thought I’d post a short update. This is my third time here….last week, the ND gave me IV glutathione with taurine and B12.  But so far, I haven’t noticed any benefit..  It’s a blessing that this dr. is so close to our home. Not sure how often I’ll be able to see him because it’s very expensive.  I asked him if he’s had any mitochondrial disease patients, and he said no.  He does know about it and how bad it is.

Unfortunately, my kidneys have been spilling more magnesium, so my blood Mg level has been lower than my usual. When that happens, I start dealing with more headaches, muscle cramping all over, and an achy back.  My nephrologist is trying to figure out a plan, but in the meantime, my GI dr. is going to add more magnesium to my daily infusions which means I have to be hooked up to the IV pump even longer.  I asked if I could receive infusions like every other day, but that would make my Mg levels wonky and they’d get very low.

My nephrologist has been trying to stabilize my blood Mg levels with oral Mg on top of the infusions, but nothing is really helping.

The cultures from my j-tube infection grew both gram negative and gram positive bacteria—haemophilus parainfluenzae (not related to the flu…lol) and veillonella parvula…!  My GI surgeon needed to switch me to a different, more sensitive antibiotic.  I had to pack the wound site with gauze for a whole week which was no fun.

This coming Monday is my appointment with the palliative care dr.  Tuesday I see the spine specialist regarding my spinal nerve root cyst.  And Wednesday is my bilateral lumbar sympathetic nerve block for the neuropathic pain in my feet.  It’s gonna be another busy week!  I’ll try to update on all these upcoming appointments sometime next week as well.  Thank you for continuing to pray for me.

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