Part XIV – Ileostomy Takedown Surgery

How my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications

The day I had been waiting for had finally come: my ileostomy takedown surgery. After three months with a stoma, I was ready to be put back together again.

I was very excited and had gone through a lot in order to have the surgery, like trying to overcome my pancreatitis. But while the surgery went well, my body was not well equipped for an easy recovery.

Ileostomy Takedown Surgery

On Monday, August 29^th, I went on a clear liquid diet to prep for my ileostomy takedown surgery the next day. The surgery wasn’t a morning one, so I didn’t have to leave super early. But that meant I had to wait around longer.

When I had my colon removed, I had to leave at four in the morning because it was one of the first scheduled surgeries of the day. An ileostomy takedown surgery is very short so it didn’t need to be scheduled first.

Each successive surgery starts a little later. Surgeries that are scheduled later in the day start progressively later than their official start times.

Getting Prepped for Surgery

I got to the pre-op preparation room and the nurses started prepping me. They had a really hard time getting an IV into me. Everywhere but the ER, medical professionals like to put the IV in the hand or somewhere on your arm. But multiple nurses couldn’t find any veins in the preferred sites.

Because of my struggles with pancreatitis, I was extremely dehydrated and malnourished. This makes it difficult to stick a vein. Eventually, the nurse had to put the IV in the crease of my arm.

Going into Surgery

For the first surgery, when I had my colon removed, there was at least six people on the surgery team. And they were all cramped into a very small operating room for more than six hours.

So, I found it a little funny that I was rolled into a HUGE operating room where there were only three people. The surgery is easy enough that my surgeon’s physician’s assistant was the one operating on me.

The Recovery Room

I woke up in the recovery room and it was very different from my first surgery. When I woke up from the first operation, I was numb and couldn’t feel anything.

Also in the Walnut Creek recovery room, your family was allowed to come and hang out with you for a little after you wake up. Not so in the Antioch recovery room. No visitors allowed.

I woke up all alone and it was completely silent with only one nurse at the station. It was a little creepy feeling. The recovery room in Walnut Creek was extremely busy while this time I felt like I woke up in a horror movie.

I also woke up in a lot of pain and was extremely confused. I kept thinking, “Where is everyone? Where are my parents? What’s going on?” But I couldn’t verbalize that because I was still out of it.

I had to go to the bathroom very badly. It was all I could think about. Finally, I was able to get my vocal cords to work and asked for a bedpan. I had to do a bridge to lift up my hips and the nurse put the bedpan under me.

But I couldn’t urinate. I thought possibly it was just my shy bladder. After I finished trying to go, the bedpan was taken away and I had to wait a really long time for a hospital room.

Inability to Urinate

I finally got assigned a room and a team carted me up to it. This time, they transferred me to my bed with an inflatable gurney, which was a lot easier on me.

Unfortunately, the first look I got of my abdomen and my stitches was when I had about 1,000 liters of fluid in my bladder.

Your abdomen is always a little swollen after surgery but the completely full bladder made it extremely distended. It was also Oompa Loompa orange from the iodopovidone they slathered on my skin before surgery.

The harsh-looking slashes that were the stitches, the swelling, and the color made my eyes go wide. I thought in my head “What the fuck did they do to me?!”

My nurse saw that my eyes got huge and immediately rushed to explain that it looked so bad because of my bladder. I had to get up and try going to the bathroom and I tried really hard because I didn’t want a catheter.

Once it was clear I couldn’t go, my nurse checked my abdomen with an ultrasound to make sure my bladder was full. My nurse was surprised by how much urine I was holding (about 1,000 liters). Every single inch of my bladder was full.

As soon as the catheter was in and working, I felt much better and a lot of the pain I was feeling was reduced.

Discharge

My recovery went fairly well and eventually, my bladder started working too, which relieved me a lot. After my first surgery, I was stuck with a catheter for an extra two weeks.

I was introduced to solids on Thursday, September 1^st, and the doctors decided to discharge me that same day at 4 PM. This was the worst time to be discharged because it was right in the middle of rush hour traffic.

This meant I had to endure an hour of sitting up straight with a seat belt digging into my swollen and tender stomach. There were also a couple of very fast stops, which hurt.

Complications

I ate some more when I got home and it felt okay. My heart burn was bad but I didn’t think too much of it.

Because I’m essentially having to learn how to use the bathroom again, I made sure to put a pad under me. I had to get up a lot during the night to use the bathroom. Every time I got up I thought, “Wow, that’s some really bad heart burn.”

Eventually at 4:30 in the morning I had to go to the bathroom again and my heart burn was so bad I couldn’t breathe. I got on the toilet to go to the bathroom and then I started throwing up at the same time.

This was the start of a very long post-operative complication period that resulted in me being as close to death as I’ve ever been.

I’ve felt like I was dying many times but objectively knew I wasn’t. During my worst moments of this post-operative complication period, I thought that if this was the rest of my life, I wanted to die.

But for the first time in my life, I rationally looked at all the facts and knew that if one more thing went wrong, my body would be too weak to survive.

My body was a perfect storm for complications to occur after a simple surgery:

• A pancreas that still wasn’t working properly
• Weak body from malnourishment and dehydration
• Inflammation in the j-pouch (basically a UC flare)
• Post-operative ileus (intestines that are dilated and not functioning)

I’ve got a whole separate post devoted to this brutal period of time.

My story continues in Part XV – Post Operative Ileus Complications

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