Busy busy.

Kerissa • February 5, 2016

Hey guys,

Just wanted to post a short update for you.  Thank you for continuing to pray for me.

My magnesium dropped AGAIN even though I’m receiving extra magnesium in my daily IV fluids!  Something’s clearly not right.  Yesterday, I was given an additional 250 ml bolus of magnesium, so I was on IV fluids for 6 whole hours.  My GI team referred me to OHSU nephrology to make sure I’m not losing Mg through my kidneys..  The clinic already got back, and I’m blessed to be able to see a Portland Monthly “Top Doctor” in nephrology.  My appointment with her is on the 29th.

This month is crazy busy.  I have 4 appointments next week (physical therapy, kidney/bladder ultrasound, neuro-ophthalmology, etc), and then my parents and I leave for San Diego on Monday the 15th.  The follow-up with my mitochondrial disease specialist is on the 16th.  We come home on the 18th.

In addition, my parents and I will be driving up to Seattle on the 21st to see my pain dr. who moved from OHSU to the University of Washington Medical Center.  This was planned last minute.  The CRPS nerve pain has been horrendous, and my local pain dr. is so booked out.  It’s so hard to deal with this CRPS flare-up day in and day out.  Nothing is helping, and chronic pain is so different from acute pain in that regular pain meds don’t help.

I can’t wait to see my pain dr. again….it’s been more than a year!  I need to update him on all that’s happened, and I also hope to discuss spinal cord stimulation again (for those who don’t know, I had an SCS system implanted in my back in 2011 for the CRPS, and it helped the pain tremendously….I had to have it removed in 2012 because I needed MRIs….after waiting more than 3 years since then, there are now MRI-compatible SCS implants!).

After we return from Seattle, I have my GI follow-up that Friday.  I’m glad he’ll be back….he’s been gone (out of the country) way too long!

And then the following week, I see Nephrology, Pulmonology, and Hematology….too many appointments!

The rest of this month, I won’t be blogging.  You know why.  I’ll be sure to post some short updates on facebook.  And I will return here next month!

Until then!

*Oh man, that was supposed to be a “short” update…*

Kerissa

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. ❤️