What my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
I’m still in the hospital after having my j-pouch surgery, technically called a proctocolectomy with ileal pouch-anal anastomosis.
This is a surgical procedure where a surgeon
- Completely removes your colon and rectum but preserves the anus and anal sphincter muscles
- Uses the end of your small intestine (the ileum), to form an internal pouch, which is shaped like a J and is connected to the top of your anal canal
- Creates a temporary ileostomy to give the newly created pouch time to heal. An ileostomy is an opening in the abdomen through which a loop of your small intestine is brought outside to create a stoma. Digested food and gas exit your body through the stoma into an ostomy bag, which is attached to your skin.
It was a large and long surgery and the only tube they’ve gotten rid of is the oxygen.
Thursday, May 19th, I spent the day chugging the colyte prep until 11:30 pm, and then I chugged 48 ounces of water. I waited until 12 am to take a shower and then set an alarm for an hour later to wipe myself down with special pre-surgery wipes, which left me feeling very sticky.
I didn’t get much sleep after that because the colyte prep finally kicked in.
My mom and dad drove me to Walnut Creek at 4:30 AM on Friday the 20th, while I sat concentrating really hard on not having to go to the bathroom.
I got checked into what they called the Recovery Room, where they prepared me for surgery and I got to meet everyone who was going to be in the operating room working on me. This is where it started to get hectic.
There were 19 surgeries scheduled for that day. It was very high energy and as I was rolled into my operating room I could definitely see how surgeons are sometimes considered the rock stars of the medical world.
The operating room was extremely cold. It was also really small and there were about six people there bumping elbows and butts. My last memory was looking at the right wall and seeing a whole bunch of shiny and deadly sharp operating utensils. And my last thought after seeing those was “Oh shit!”
I promptly passed out after that and don’t remember anything else.
The J-Pouch Surgery
The first incision was at 9:00 AM and the surgery lasted until 2:00 PM. I didn’t wake up until 3:30 PM which is when I found out they had to give me a stoma.
My surgeon didn’t want to risk doing the whole surgery at once with the amount of prednisone I was on. This means that in 2 to 4 months I will be undergoing another, shorter, surgery to reattach everything together.
None of this stuck in my head the first day. The effects of the anesthesia made it really hard to remember anything.
I’m in a lot of pain. There’s no way around it. Monday, May 23rd, was the first day where I was able to sit up and type but I barely got anything done before I started to get tired again.
Later things slid more downhill. They decided to try to take the catheter out but I couldn’t go pee. Only blood was coming out. My bladder got really big and it set off all my other surgery aches and pains.
My nurse put the catheter back in pronto and I spent the rest of the day in agony. I finally gave in and took some narcotics to help with the pain. I also had to get a new IV put in because my hand had started to swell up.
#1 Lesson Learned: I highly underestimated how hard recovery was going to be.
Read about my J-Pouch Surgery Recovery
Read about what life is like with a stoma in Stoma Life: My 3 Months with an Ostomy
My story continues in Part XIII – Pancreatitis
My Whole UC Story
You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:
- My UC Story: where and when my ulcerative colitis symptoms first started
- Part I – The Beginning of My UC Story: what my symptoms were and the struggles I had getting health care
- Part II – UC Diagnosis and Adjustment: how I was diagnosed and how I struggled to adjust to living with ulcerative colitis (including diet experiments, and getting frustrated with doctors not listening to me)
- Part III – UC and Severe Back Pain: my ongoing struggle with severe back pain + getting a new GI doctor that listened to me and who sent me to a rheumatologist
- Part IV – Sacroiliitis Diagnosis and UC Remission: getting diagnosed with sacroiliitis, getting on Remicade, and finally going into remission (with both my UC and joint disease)
- Part V – The Second UC Flare: my slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
- Part VI – First Hospitalization: my first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema (swelling from fluid).
- Part VII – Being on Prednisone for My Second UC Flare Recovery: being on Prednisone for the first time and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
- Part VIII – Third UC Flare and Second ER Visit: my third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
- Part IX – Recovering From Two Consecutive Flares: being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
- UC Planning Realities: Trying to Write and Defend a Thesis: the difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
- Post UC Flare Routine: my post UC flare routine that helped me manage my physical and emotional symptoms
- Body Image and Mental Health with UC: Stop telling me I look great: the connection between body image and mental health and how my experience with ulcerative colitis has complicated my relationship with the two
- Making Travel Plans with UC: the difficulties in making travel plans with UC
- The Nightmare of Ulcerative Colitis: I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis
- Part X – Fourth UC Flare: My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
- Hanging Out in Limbo: waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds
- Part XI – How Losing My Colon is a Transformation and Not a Loss: I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
- You’ve Just Crossed Over into the Prednisone: Being on prednisone is a lot like being in the Twilight Zone. Things aren’t always what they seem, it can be hard to navigate and understand your surroundings, and often times you feel like you might never come back. Or the even scarier thought: that you might not ever want to come back.
- Recovery Reads: a list of some of my favorite books to read while recovering from UC flares, hospitalizations, and surgeries
- Pre-Surgery Jitters: my pre-surgery jitters in the days leading up to my j-pouch surgery on May 20, 2016, and how I distracted and pampered myself
- Part XII – J-Pouch Surgery: what my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
- J-Pouch Surgery Recovery: j-pouch surgery recovery is a full-time job with lots of road bumps along the way including bladder problems, dehydration, exhaustion, healing stitches and scars, pain and emotions, and adjusting to life with a stoma and ostomy bag
- Stoma Life: what my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like
- Part XIII – Pancreatitis: my struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
- Part XIV – Ileostomy Takedown Surgery: how my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications
- Part XV – Post Operative Ileus Complications: my painful and scary experience with post operative ileus complications left me very weak, under 100 pounds, malnourished, and very close to death’s door
- Surgery Recovery and Diet Problems: Physical and diet difficulties from post-surgery recovery and complications from pancreatitis, post-operative ileus, and pouchitis
- Everything is Shiny and New
- Hitting the Wall and The Privilege of Scars and Wrinkles
- Experiencing Loss and The Power and Comfort of Creativity
- Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years