Latest update!

Kerissa • April 5, 2014

I mentioned in my last post that I’ve been dealing with severe vertigo and a bunch of new, ongoing GI issues (nausea, weight loss, decreased appetite, stomach pain).  Well, my GI dr. and neurologist quickly got me in this week, and I’m so glad I was able to see them.  They’re wonderful!

On to the not-so-good news:
I am down to about 79 lbs.  And I can hardly eat without getting terrible stomach pain and nausea.  It’s most likely that I’m dealing with delayed gastric emptying which is dysmotility of the stomach..  This is common with mitochondrial disease.  See how mito can affect basically any part of the body?  It especially affects organs that demand a lot of energy like the brain, heart, muscles, GI system, etc.

Because of this, I have to be on a mainly soft food/liquid diet for now, and that’s not good news since I’ll probably lose even more weight.  Dr. P couldn’t even hear any abdominal sounds with his stethoscope—this means the food isn’t moving well out of my stomach.  He’s putting me on a proton pump inhibitor drug and a compounded medication that will hopefully help this dysmotility issue..  I see him again and the nutrition therapist in less than 3 weeks!

My neurologist has come to the conclusion that the vertigo I’ve been experiencing for a whole month now is from an inner ear disorder (which usually happens after whiplash or concussions!).  I’ve never had either of those, but you know me.  I’m not the typical patient!  At the appointment, Dr. G induced vertigo by doing these different maneuvers, and it wasn’t fun at all!  She put in an order for me to have intense vestibular rehab.  She also prescribed a vestibular suppressant for bedtime to see if it will help me sleep better.  As you can imagine, it’s very hard to get restful sleep with vertigo.

The CRPS pain has been ramping up again, too—my feet get really discolored, and the burning pain is just horrible.  I sent a message to my pain dr., and he told me he needs to see me for a visit.  I called to schedule an appointment, and he is booked until May 8th!  But do you want to hear an answer to prayer?  He has a cancellation in 11 days!

These symptoms on top of everything else has been challenging to manage all at the same time, but I thank and praise God for His mercies that are new every morning !

I just want to close with a quote a dear friend shared with me.  The last sentence that I highlighted gives me chills!
 

Some day you will see the glory of God in the things which you do not understand

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