Pain and Potassium Problems.

Kerissa • February 23, 2017

“I choose to believe that God is good even though He doesn’t heal me.  That when life goes wrong and I suffer, He is with me.  To join with the prophet to sing “He deals wondrously with us!” even when the wonderful life I expected doesn’t turn out the way I’d hoped.” |

He Speaks in the Silence

Hello everyone,

First off, for those who aren’t on Facebook, I just want to share with you some good news!!  Last week, I had a repeat venous duplex scan to check up on the DVT (blood clot) that formed in my subclavian and axillary veins.  Well, guess what?!  The clot is completely gone!!  Isn’t that amazing?? All the glory goes to God!  Thank you all for praying for me during these last few weeks.  I’m blessed to have an army of prayer warriors by my side!

Last Thursday, I had a post-op surgery appointment.  Unfortunately, my jejunostomy feeding tube that was replaced while I was in the O.R. for my port surgery a few weeks ago was not the correct size. That is, they got the diameter correct but not length. *sigh*  So at this post-op appointment, the surgery resident replaced the feeding tube, and I had to be completely awake for it without any numbing medication. :'(  The procedure was extremely painful because my skin around the stoma (hole) was all raw and inflamed from the tube being the wrong size.  It was an 11 on a pain scale of 1-10.  Seriously! The tube is about a foot long, and I couldn’t breath because I could feel the doctor push the tube in inch by inch.  I’ve experienced a lot of painful procedures, but I think this tops it all.  I don’t know how I’ll bear another tube change in 9 or so months….I dread the thought of it!!  But I will try not to worry about the future..  I am reminded that God’s grace is sufficient.  It is enough.  For today….for the future.

Since November, I’ve had a lingering cough that I just can’t seem to kick.  If I have a lot of doctor appointments and I need to wake up “early,” my cough worsens when I’m tired and I have to use my inhaler more often.  Well in December, the cough was especially bad, and I started experiencing terrible upper right back pain then.  It hurt to breathe even!  And my physical therapists weren’t sure what was going on.  The pain was way worse than a muscle strain.  But the CT scan I had for that blood clot showed what was wrong.  It turns out that I fractured a rib….just from coughing! Wasn’t expecting that!  I’m glad for answers, though.  Based on the images, my rib is still healing..  My physical therapist said my bone mineral density is weak because of all my conditions..

We’re not sure what’s going on now, but I haven’t been feeling well. I get a very achy back that comes and goes, and it worsens to the point that I need one of my strong pain medications.  My blood potassium level has also been lower than my normal, so I told my nephrologist.  I believe she’s going to add more potassium to my daily IV magnesium infusion bags to see if that helps.  On top of that, I’ve had a severe, pounding headache the last few days with nausea, and we don’t know if this is all related with the back pain and potassium issues..

Or is the headache from my anemia, the nausea from all the pain, and the achy back from the low potassium?  Or, is my body just now having a rough time recovering from all that’s happened the last several weeks (DVT, port surgery, San Diego trip, feeding tube replacement, broken rib, cough, etc.) and I’m going through a “mito crash”?  I almost had to go to the ER yesterday…I felt so horrible, and I still do this evening. But I am seeing my PCP (my main PCP is on maternity leave) in evening clinic tomorrow, and I pray he can help..  Trying my hardest to avoid the ER!

Continuing to take it one day at a time.  I recently read something really encouraging in Joni Eareckson Tada’s newest devotional A Spectacle of Glory—“I may walk in pain, but I also walk in grace.”  So very true, and I remind myself of this often. She also writes, “For all the many times [the apostle Paul] was distressed by his weakness, he had the supporting grace of Christ…..grace always, always meets us at our point of pain!”

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. ❤️