I started to write this update 10 days ago. It began: “I’m dressed. I transferred into my chair. I’ve been spending about 45 minutes twice a day outside here in Florida’s fresh, breezy warm air. But Thursday or Friday will be the true test: I will begin intubating (using the stoma to empty the new pouch).”
Today (Thursday, May 17) I’m still sitting in a Florida hospital room, drinking Miralax to clean my system out for a second surgery to repair a fistula (same one as last time).
As a refresher, the BCIR procedure that I had done is a continent ostomy. In other words, instead of having a bag like a typical colostomy or ileostomy, I will empty my newly-formed pouch with a 30f catheter several times a day.
It’s been a rough few weeks. I was scheduled to be discharged last Sunday after successfully intubating for 2 days. We bought our plane tickets and were ready to head home on Thursday. Then a spot on my abdomen had to be opened up on Monday. Discharge was postponed till Wednesday. Then things got even worse on Tuesday when the stoma leaked. At that point, I knew I wasn’t going home.
It’s been hard. The expected 3-week stay has grown into 7 weeks with at least 3 more weeks to go. Please pray for a successful surgery tomorrow at 7 a.m. Eastern time. Please also pray for me during the 10-14 days of no eating. This is what I’m dreading the most.
Below are text messages to friends. I share them so anyone who is considering a BCIR can read about the highs and lows.
Thank you for your prayer and support!
Saturday, April 28
Better day. Moved up to “full liquids” today. I ate some soup and pudding. Went for a walk/sitting outside for about 45 minutes. Came back in and crashed for an hour and a half. Got back up and watched a couple episodes of Fixer Upper. I used the 1 pound weights to do 3 reps of 10 of a couple of the exercises I typically do. Of course I typically use 3 pound weights do it for about a half hour. Three reps had me winded! I’m so weak. Back in bed and ready to watch another episode of Poldark. I think I’ll be removing the Foley tomorrow. Pray my bladder cooperates and doesn’t need to be emptied every 250 to 300 cc. Oh, also pray for my mom. She developed cellulitis in her leg and had to get a prescription today. Hopefully the antibiotics will take care of it.
Monday, April 30
Bit by bit. Stoma looks good. Foley is out. Bladder still angry, but a bit better. Unfortunately, I was hoping I’d be moved to a regular BCIR diet today, but that’ll have to wait until Thursday. Yesterday I had cream of broccoli soup twice. I’ve had more milk/lactose in the past two days than I’ve had in a year. Bring on the simethecone. 😀 I’ve been searching for soup places and Dr R said go to Panera and just chew any chunks well. Hopefully I’ll get potato soup tomorrow. I’ve been able to lift 1 lb weights with 3 reps of 15 twice today. Tired and ready to get into bed. Keep up the prayers!
Tuesday, May 1
My mom is headed back down to ER to get her leg checked out. Cellulitis is getting worse, antibiotic not helping. Please pray that the right antibiotic can be found.
Puréed turkey and rice soup and cream of asparagus. Can you say glutton?! I ate both!
Mom has been admitted to the hospital. It’s cellulitis. Needs IV antibiotics.
Thursday, May 3
Real food today! (They have the best bacon here.)
Quesadilla for lunch. 😍 Only ate half. Was told to take it slowly. Had my dad remove it from my room.
Dr. Rehnke came in: One more week till I intubate. Wound care nurse came in. Everything has healed up well. Still need to be careful, but things look good.
Blah. I’m still full from lunch…
Friday, May 3
Today: ate three meals, pushed outside twice, sat outside for about 45 minutes both times, pushed up and visited with my mom for about a half hour each time, took a nap, put in my contacts, put lipgloss on for the first time. Currently waiting for the nursing staff to help me get back in the bed. Still can’t transfer since bare butts don’t slide! Neck and shoulders and back hurt so badly. I’m sore. Little by little. This is the PT who is been working with me, Christie. Oh! And watched the Oaks!
Saturday, May 5
My mom still has a few more days of IV antibiotics. It’s not clearing up very quickly. We plan on possibly getting her in a chair and going to a family room with a bigger TV to watch the Derby. We’ll see what happens.
Possible discharge next weekend if intubation on Thursday goes as planned.
What do you do when you’re in the hospital for Derby? Make a Derby hat from Thera-bands! And Dr Rehnke ordered pizza for the floor (although some people can’t eat, which is tortuous)! First pizza I’ve had since July 2017.
Sunday, May 6
Well, I’ve been sitting up since 11 AM. It’s now 7 PM. Longest stretch yet! I didn’t push outside today – it’s overcast and dad said it was really humid. But I did go up to mom’s room twice. We also ordered dinner out. Sick of hospital food! Nothing terribly new since yesterday. Little by little.
Tuesday, May 8
Well, I got dressed today! The floor has been short staffed, so Sue scheduled to come over and help me get dressed this morning. Nothing fancy, but better than hospital gown! Looks like my mom might be getting out today or tomorrow.
Thursday, May 10
I got the Penrose drain out yesterday. Dr. Garcia reminded me that I could have that autoimmune response and a fever. It didn’t happen last time. It did this time. Running a fever and I feel like crap. I know it’s not abnormal, I just feel really bad. I’m burning up. Intubating today.
I survived today. Intubating went much better, but there still a huge learning curve. Let’s just say I’m going to have a lot of towels on my lap and have a lot of anti-bacterial soap around for quite some time. It wasn’t till after 2pm that my fever and shaking subsided. After that I was able to sit up somewhat comfortably. For the next week I have to intubate at night with only on 4 hour break. Tonight’s schedule is 10, 12, 2, 6 and 8. And then every two hours during the day. The following week will be every three hours during the day and I don’t have to go at night. I’ll follow that schedule until I get up to every eight hours, which is the goal.
Friday, May 11
Sleep deprived. Stool is thick, so I have to irrigate several times. Trying to get motivated to do this for a whole other week. Actually for several more weeks! Thankfully after this week I don’t have to do it at night. Here’s my Bard Care article for this week. A gift to my mom for Mother’s Day. She didn’t know about it!
Are you ready? I get discharged on Sunday! Intubating has gone fairly well both days. My pants didn’t come out unscathed after the last time. It’s a learning curve. Running a low grade fever. Bit worried about UTIs due to intubating. Need to find the right supplies and technique. Bought tickets for Thursday to fly home. Need to set up transportation and help. Lots to do. Thank you for your support and prayer!
Pic with my nurse Jill who was teaching me/helping me intubate:
Saturday, May 12
Went much better today!
Sunday, May 13
Please pray for wisdom whether not I should leave today. UTI. Hard spot on abdomen. And intubating still messy at times which only leads to more UTIs. Third UTI in 6 weeks. I usually have that many in a year.
Spending another night in the hospital. I had an abdominal ultrasound this morning. Culture sensitivity results aren’t back yet, so I’m not on an antibiotic yet. Not sure what tomorrow holds.
Monday, May 14
Rested. They put me back on suction last night, so I didn’t have to wake up every two hours to both cath and intubate. Sleep is lovely!
The good, the bad and the ugly. I’m still in the hospital. The good: intubating is becoming a bit better. The bad: I have an ESBL E. coli UTI again. The ugly: the hard spot on my abdomen was opened up today by Dr. R and is being cultured. It’ll have to be packed once I get home for a while. At this point they still think I should be able to fly home on Thursday. But more good… Gail and Jill made me pretend they weren’t around when I was intubating. I did a fairly decent job without their help. Little by little.
Tuesday, May 15
(Not texted: When removing the catheter after stopping suction in the morning, stool erupted from the stoma. Stool also appeared to be in the abdominal wound that we opened up on the day prior. I broke down knowing it was probably a fistula.Then I had surprise visitors!)
My sweet visitors this morning brightened my day. Lauri and Kristin are friends from Louisville. (Please excuse my nasty, unwashed hair!)
Facebook Post: I was hesitant to post this, but I need prayer. I was supposed to be released Sunday, then tomorrow. Now it’s looking like worst case scenario of surgery. I’ve had several reminders that I can not do this in my own strength or by myself. Please pray for the best possible outcome with the least invasive means necessary.
Wednesday, May 16
Scope is supposed to be at 12. Pray it is. I’m famished. Nothing to eat since a few potato chips yesterday afternoon.
Scope done. Previous fistula is open a bit. Not sure what’s next. Waiting for Dr. R to come up. Also will have a dye test to see if it is leading to the wound on my abdomen. Sounds like there could be less invasive options than surgery. So please pray that would be an option.
Dr. R came up and I got to chat with him a bit. Great doctor and wonderful man.
So, Friday, May 17 will be my third surgery in 7 weeks. This evening I’m drinking Miralax to clean me out. At least the nurses have a sense of humor labeling the mixture “Melted Strawberry Daiquiri.”