It’s been a year…

The best way, for anyone interested, to catch up with my health challenges, is to read Jennifer’s Facebook, she has much more than I want to write about here, but below is a summary and small update: (Jennifer Forrester Knight on Facebook).

2025 has been nothing I imagined…

On December 19th, 2024 I had out patient shoulder surgery to repair small tears (ended up being several) and a tendon inpingement in my left shoulder. They provided a wonderful pain block that kept me comfortable through the weekend. Once that was removed, the expected shoulder pain was there but not too bad. What was bad was my abdomen, I was severely cramping every time I swallowed anything, even water. After serveral days of this I mentioned to Jennifer how I never thought my stomach would hurt more than this repaired shoulder (yes I heard everyone’s nightmare description of shoulder surgery pain!). I began passing blood and muscus in my stool. She mentioned it to my GI dr who immediately got me in for an upper endoscopy to rule out ulcers, etc. Meanwhile the pain got even worse, I was having lots of diarrhea and continued passing lots of blood and mucous in my stool. So on January 10th I was admitted to Pensacola Sacred Heart for observation and pain management. Soon the shoulder was forgotten.

First Hospitalization

We ended up in the hospital for ten days. I had my 1st colonoscopy (of 3) on January 12. I did what prep I could in an observation room with no showe, just a toilet. My wife was an absolute rock star, doing things for me no spouse should ever have to. The next morning I had the colonoscopy, and when I was awakened in recovery with family there I could tell the news was bad. My entire large intestine (colon) was inflamed, bleeding, and ulcerated. Pan-colitus which means the whole thing! Just touching it pieces would break off, bleeding of course. Ulcerated Colitus is the official disease, it, like Chrohn’s, is an auto immune disease where your body attacks your colon. I do not have Chrohn’s as the small intestime is not involved. This is crucial when considering surgical options, if warranted,

Meanwhile I really could not eat anything, the pain was too much. I received lots of fluid, began throwing up regularly along with the bloody stools, and no change in my condition. I was steadily growing weaker. The Gastro NP who rounded got me started on the standard drugs – messalamine and high dose steroids. Very high dose. Not good for the ole diabetes! We stayed 10 days and were discharged without any improvement in symptoms. Bloody diarrhea, malnourished, in a lot of pain, and a lot of confusion as we become more knowledgable about what UC is and how it impacts everything in your body.

We were home a few weeks. I passed out in the bathroom, awakened by the terrible fall. I was so weak at this point I could not pull myself up off the floor. Jennifer improvised using a rug to drag me to the bed where I could push just enough to sit in a rolling chair. I think I passed out two other times after that.

I did get an infusion of Skyrizzi, one of many biologicls used for UC and Crohn’s. The biologicals in theory can train the immune system to stop attacking your own colon which can lead to healing. My local GI chose this one (Skyrizzi) for us, Jennifer’s research pointed to Remicade as the typical “rescue” biological but requires to be given only via infusion while some of the others, like Skyrizzi, eventually can be given via injection or even pills. Meanwhile, at this point, I am not better. At all. Fortunately the Episcopal church has an excellent Short Term Disability plan which I filed for almost at the beginning of all this. This allowed the church to keep paying me while providing extra $$ for supply clergy. Our new vestry, and new Senior Warden Ashleigh, had to immediately step into the gaps, along with our staff (they are AMAZING) and an army of ivolunteers (DITTO) who showed our people they are the church, they can support me and Jennifer with prayer and food while taking responsibility for a variety of events and programs in my absence.

By Februay 10th I was not well at all. I was so exhausted I couldn’t hold my head up, barely make it to the bathroom for the over 15 bowel movements a day. In looking back, I think I thought I was dying. I couldn’t function in any way and no energy to do so if if I desired to..

Turns out, I was not wrong. Jennifer got home and immediately got me ready to return to the hospital. At the advice of our GI, we returned to Sacred Heart Pensacola even though, unknown to us, the Gastro Health folks were not allowed in the hospital due to some contract issue, they had one travel GI doc for the entire hospital! He was really good for me but admitted IBD was not his specialty and he was in constant contact with the IBD team at Oschner’s in New Orleans. Drs Shah and Gaspar head a team that has a national top 5 reputation, with 6 colon-rectal surgeons on the team along with IBD specialists, infectious disease team, medicine team, etc. I began prep for another colonoscopy – have I mentioned how fun that prep is when you are already going through what I was? The pain was intensive, the prep horrendous, poor Jennifer had to again do things no spouse should ever have to do – I cannot thank God enough for her! The colonoscopy showed my colon was even worse and the travel GI alongside the hospitalist began working the phones to find a bed in an IBD specialized hospital. UAB was not taking patients, Mayo in Jacksonville accepted me but had no beds, Oschner’s became the focus and after a long and miserable weekend of waiting on a bed, I was transferred via ambulance on a Monday night, Feb 17.

Let me tell you laying on an ambulance stretcher for a 5+ hour ride is torture, especially when you trying your best not to poop all over it. We had one long stop to get me cleaned up and then on to NOLA in a pouring rain, Jennifer following the ambulance in her car and Mackenzie meeting us at Oschner’s from her home in Pass Christian. I will never forget how terrible that trip was! When we finally arrived I walked out of the ambulance (yep) in such misery and pain. Mackenzie had found which room they were putting me in and I went to the bathroom there with blankets all over me, freezing cold, waiting on what was to come.

Tuesday morning the daily doctor parades started in earnest. The hospitalist in Pensacola had told them I was his sickest patient, and the docs at Ochner’s said I should have been in ICU pre transfer. My room was an ICU step down so the care from the nursing staff was phenomenal. I learned that surgery was always an option for me but everyone wanted that only as a last resort. Surgery for severe UC like mine calls for complete removal of the colon (large intestine), rectum and anus, reconstructing the small intestine to replace the large. I would have had an ostomy bag, probably for life. Younger patients can have what is called a “J pouch” which is an internal bag, but someone my age usually doesn’t have that as an option. Every member of the surgery group assured me they were ready to operate at a moment’s notice (at this stage there is much danger of perforations in the colon – a life threatening event). But also saying, we’d prefer you keep your colon.

I had received a dose of Remicade in Pensacola at the advice of the Oshner team while waiting on a bed. Due to biopsies not resuting, Oschner team decided that I should have another colonoscopy where they can take their own biopsies. Thankfully they limited the prep to a couple of enemas (Jennifer and the night nurse had to handle that mess!), and they were able to do the scope. Afterwards Dr. Shah basically said surgery was about my only option. This was devestating news which took me a couple of days to process. Jennifer was so supportive and positive I came around to accept my fate. Meanwhile due to my weakened condition they wanted to wait a few days, get some nourishment and another dose of remicade and see where we were.

The remicade worked great and I began to heal somewhat. There is way more to the story here but eventually we all agreed to see if the biologicals can continue to improve the colon enough to avoid surgery for now. Slow, very slow improvement was the ticket and we were released about 10 days later.

This has been too long already so I will summarize the rest. I ended up requiring emergency back surgery for an L5 laminectomy, hoping my completely blocked spinal column at that point is the source of numbness and floppy foot, my whole lower body is numb in many places and my walking gait dramatically affected. So we were admitted for all that and stayed a few more days, bringing home with us Covid! Jennifer was very sick from it, ended up at the Urgent Care back home where she tested positive, so I tested with a home kit and was also positive, although other than one day of low fever I didn’t have symptoms. Until I did. 3 days later I am running a temp and go to get checked out where an xray confirmed pneumonia. My immune system is compromised so this is not an unexpected development. Ran fever for several days but have been fever free now for 5 days in a row. I do have bouts of extreme sweating, something evidently UC causes. The back surgeon asked me to delay PT and to not do to much walking until I see him on April 30th. I am doing exercises (with permission) in our pool and that will suffice for now.

So it’s a new life for the Knights. I am slowly improving and praying to get my next biological dose soon. Jennifer is better but tending to me and all my complicated meds, etc. is a lot even for someone as good as she is about medical stuff.

Fatigue is a real deal with UC. I went to the office for a few hours last week and it took two days to recover from that 4 hours of light work. I will be at church a couple of half days this week and then the Holy Week marathon begins. We are so bleseed to have the Rev. Alan Sutherland to supply for me often (I love him and our parishioners do also), and he will be by my side for Holy Week services. After Easter Sunday, the surgeon asked, hearing my schedule, that I refrain from returning to work until after my follow up on April 30th.. After that I will ease into a normal schedule including most Sundays and half days at the office for a while. Time will tell. I am so blessed to have a congrgration that has cared so deeply for me and Jennifer, with prayer, food, support, cards, love and understanding. I give thanks to God every day for them, for our Bishop who has been a great pastor to me and Jen, for my kids who have missed work and family things to come help take care of me, and most of all for Jennifer, the real hero of this story and of my life, my cheerleader, my truth teller, my all. This illness takes a village and I have a large one! Thank you all!

***** (As I said at the beginning, Jennifer’s Facebook posts have more details and I am sure I have a lot of dates wrong, considering my condition that is to be expected.) Thanks for reading this far and for your prayers and concern.