Hey everyone, I want to profusely thank my sis Katy for helping with blog posts over these past few weeks. She also helped in countless ways around our house, and with our kiddo, as I have recovered from surgery. Katy headed back home to Eugene yesterday, and I’ll resume writing the posts in this blog.

As mentioned previously, my bladder was nicked during the surgery, resulting in me wearing a catheter for two weeks. Those two weeks are indeed over (thank goodness) — the catheter came out yesterday. I am now basically re-learning how to pee, which is a painful, trial-and-error process. I was hoping to write a celebratory post today about being catheter-free, but it seems I’m not quite out of the woods yet.

Candidly, I’ve struggled with a lot of anger about this whole bladder “nick” and all the misery it’s caused me. Let me just vent a bit. Sometimes we cancer patients just need to vent — here we go:

• I had no idea what the #$%& I was doing: As an ostomy patient, I received very detailed (honestly fantastic) instructions and guidance from wonderful ostomy nurses, really focused on day-to-day management of emptying and changing ostomy bags. But there wasn’t anything comparable on life with a catheter, except a video that said I need to clean the drainage bag with bleach every day.
• The bleach cleanings: So I think these instructions were maybe(?) excessive, but I was terrified of getting a UTI, so I diligently followed them: any time I changed the catheter drainage bag (twice a day: once in the evening, and once in the morning), I thoroughly cleaned the drainage bag with soap and water, and then let it soak in a diluted bleach solution. This involved using a large syringe to pump the drainage bag full of the bleach solution.
• Very limited mobility with the “night bag”: I had a large drainage bag for sleeping, with a hook — if I needed to move around, I carried it by the hook (or tried a few different methods to tote it). The problem was that this bag had large, rather inflexible tubing and I had to move very slowly, very gingerly lest I bump the tubing in just the wrong way: voila, a painful tugging feeling…
• Mobility challenges with the “leg bag”: For daytime use, I had a smaller drainage bag that attached to my leg via (uncomfortable) velcro straps. Admittedly, it was easier to walk around with this — kind of. The hospital sent me home with a fabric / velcro strap to secure this to my leg, but that quickly got stretched out, which meant it kept slipping down my leg. Which resulted in that painful tugging feeling..
• Lots of time experimenting with hacks: As I was flying blind, I ended up googling alternative catheter securement devices, and bought a few options on amazon — these were adhesive, so I spent a lot of time shaving my legs, experimenting with the right position. This definitely included some failed experiments (I do not recommend the “swivel”-style device) … that resulted in hours of considerably painful tugging.
• Very little sleep: extended catheter use can often result in bladder spasms; I was prescribed oxybutynin to deal with these. The most common side effect of oxybutynin is dry mouth, and it’s a humdinger, in my experience — I had an overwhelming urge to continuously drink water. This made sleep well-nigh impossible. There are tips online for dealing with the dry mouth, but these are all daytime stuff (chew gum, suck on ice) — you can’t do them while you’re sleeping. So I didn’t sleep much.

Given all the above, I am thrilled that the damn catheter is out of me, and I do hope the current adjustment period back to normal bladder function doesn’t last too long. I think my situation (catheter + ostomy) must be a fairly rare thing with LAR surgery patients; otherwise I think I would have had more instructions on how to get through it.

Fingers crossed, next week goes more smoothly…

After a week filled with ups and downs following his discharge from the hospital, Jonathan is beginning to adjust to life at home.

Jonathan’s doctor recommended that he remain active by moving around and walking. Jonathan really enjoys walking and so has started going on long walks. He’s found that walking is a great way to ease the tightness in his left calf.

This weekend he walked a mile both on Saturday and on Sunday. Thankfully the weather cooperated and he had lovely weather both days.

This afternoon, James and I joined Jonathan on his afternoon constitutional. Hooray for walking buddies!

While he still continues to struggle with catheter management, Jonathan’s bladder is feeling much better now that he’s taking Oxybutynin. So that’s good news as well.

Let’s hope things continue to improve this week as well!

Hello Jonathan’s Fan Club!

It’s been 5 days since Jonathan was discharged from the hospital so I figured it was time for an update.

Jonathan has enjoyed being back at home with his family and in familiar surroundings. It’s a relief to wear regular clothes again and to feel some measure of normalcy return.

That being said, being back at home has also been a challenging transition filled with ups and downs.

First, the good news: his ileostomy looks great and it is healing well. Jonathan received excellent training on how to care for the ostomy from the nursing staff and he feels confident he can manage it on his own. He had a follow-up appointment yesterday with the ostomy nurse and so far so good. The ostomy needs to be completely changed every 3 days and he’ll be doing the next one on his own.

Thankfully that part of the recovery is going well because he’s dealing with some challenges that he didn’t anticipate prior to the surgery.

Since Jonathan’s bladder was nicked during the procedure, he has to wear a catheter at home for two weeks. That has been a challenge, especially because he didn’t receive adequate education in the hospital on how to deal with a catheter at home. Jonathan has been slowly getting the hang of it, but it’s been a frustrating process and a lot more work than we anticipated.

Jonathan also continues to experience pain in his left calf occasionally, along with some swelling in his ankle which we suspect might be edema. A PA checked out the leg yesterday morning, who recommended another ultrasound to rule out Deep Vein Thrombosis (DVT). He had the ultrasound yesterday afternoon and there is no sign of a blood clot so that’s good news.

We are somewhat mystified as to why the pain has returned because his calf felt pretty much back to normal when he was discharged. So we are keeping an eye on it and monitoring the situation. He’s walking a lot which is helping to relieve the pain.

And now onto the third challenge: Jonathan was accidentally prescribed medication with an enteric coating. Ileostomy patients are supposed to avoid this kind of medicine because it can pass through without being absorbed into the system – and even block the stoma.

Jonathan discovered the error when he noticed that no output was flowing into his stoma bag and then found an entire pill in there. The medicine, Oxybutynin, was prescribed by the urology staff to help reduce pain and bladder spasms due to the emergency bladder surgery.

He stopped taking the medicine right away and got the prescription changed to a quick dissolve formula. However, we missed the notification that the prescription was in at the pharmacy and honestly lost track of it during yesterday’s medical appointments on his calf and ostomy.

Unfortunately, Jonathan had a lot of bladder discomfort last night – which reminded us to follow up on getting the new prescription. We picked it up from the pharmacy first thing this morning, and hopefully he’ll start feeling relief soon.

Jonathan has a couple of follow-up appointments next week, including one with the urology staff. Hopefully they’ll give him the all-clear on his bladder and remove the catheter so it’s one less hassle to deal with.

Big thanks to both Sarabeth and Jen who have been a huge help this week, along with family and friends who continue to provide love and support.

Xoxo,
Katy

I’m happy to report that Jonathan was discharged from the hospital late this afternoon. He is now home safe and sound and is relaxing with his family.

Earlier today, Jonathan had a second session with the ileostomy nurse Sunny. After that session, Jonathan felt comfortable that he could manage and change the ileostomy on his own.

That hurdle cleared, Jonathan was given the green light by Dr Liu to go home. The nurses removed his JP drain, showed him how to manage the catheter, and finalized the discharge process.

Welcome home, Jonathan!

As Jonathan wrote in his blog post earlier today, his recovery is going well. His surgeon, Dr Liu, visited yesterday to touch base. Dr Liu examined the incision and the ostomy bag and reported that everything looks fine so far. The bloodwork and other test results look good. So that’s encouraging.

While the first 24 hours after surgery were a little challenging, Jonathan is doing much better today. His fever is gone, he’s no longer connected to the IV, and he’s graduated from a liquid diet to a low fiber diet which includes solid foods. He also slept much better last night and woke up feeling energized today.

Yesterday we also got to meet Jonathan’s physical therapist. She showed Jonathan how to sit up using a “log roll” motion which avoids putting pressure on the incision. He walked around the floor of the medical wing twice using a walker. The physical therapist showed Jonathan stretches to help ease the pain in his calf.

His calf remains sore but is better today. How did Jonathan end up with a painfully sore calf after a surgery on his rectum, you might ask? The medical staff believe it is due to how he was positioned during the procedure. After running some tests, they believe it’s essentially a really bad charlie horse.

Today was a relatively quiet one. His roommate was discharged yesterday so Jonathan had the room to himself and got to look out the window. He’s enjoyed a few visits from family and friends and a special flower delivery. He’s gone on more walks around the floor and listened to an audiobook. He’s getting used to the reality of having an ostomy bag and beginning to learn how to care for it.

Tomorrow is a big day. We are expecting visits from the surgeon, the ostomy team, the urologist and the physical therapist. These folks will all assess Jonathan’s progress and ensure he is ready to handle life at home. Once they give the all-clear, then he will be ready for discharge.

So… fingers crossed he’ll get to come home soon!

Thank you all for the well wishes, love and support.

Huge thanks to my sis for her updates on my surgery day! Just wanted to let you all know I am doing ok, recovering at the hospital after surgery. That fever from Friday night went away and the medical team like what they are seeing in terms of recovery (I’ve had a healthy appetite, incision sites look good, etc).

I’ll be in the hospital at least through tomorrow, as there are still meetings I need to have, most notably with the ostomy team.

I’ll write more in a few days, but just wanted to let you know I am doing good. 🙂