Journey to my Permanent Ostomy – Part One

In honor of having had surgery a year ago to make my ostomy permanent, I decided to strap myself to a chair and write about it. This surgery was a totally different experience for me than my first surgery for a number of reasons:

First Surgery

  • Pretty much on my death bed, frail, and in the most intense IBD flare of my life
  • Limited time to prepare, desperate to feel better, on steroids and pain medication from the hospital = calm, excited
  •  Ignorance was bliss regarding what having an ostomy was all about and what the complications might be
  • I was in the hospital for 17 days (including before and after surgery) and really liked most of my nurses
  • My ostomy took a few days to start working after it was formed
  • I had a great social support system offering me encouragement while I was in crisis mode
  • I had an amazing care taker (my dad is the best)

Second Surgery

  • Healthy and fit
  • Lots of time to prepare = incredibly nervous and stressed
  • Very familiar with all of the possible complications and horror stories other people had posted on the internet
  • I was in the hospital for 3 days in a unit with nurses that weren’t at all familiar with the surgery I underwent or my ostomy
  • My ostomy started working again quickly
  • I still had a great social support system but I was a lot less vocal about the surgery and wasn’t in crisis mode so the attention was different
  • I had two amazing care takers (because that boy I met went above and beyond to make sure he was there for me throughout everything)

So, how do they make an ostomy permanent? They remove whatever might be remaining of your colon, rectum and anus and close up the area where that exit was. There are a couple different methods for how this is done and how that area is closed up. I’m sure it depends on the reason you’re having the surgery and how much of the surrounding area the doctor has to alter or remove. It’s a pretty intensive surgery because you have a ton of nerve endings and blood vessels in that area to cut through and around in order to remove the organs. Plus there’s not a great amount of blood flow to promote healing and it’s just kind of a germy area in general because of the area that they’re dealing with.

Thankfully, my experience was NOT a horror story. I’m happy to report that I spent a lot of unnecessary energy stressing about what could go wrong. I knew I was silly to be stressing about so much negative stuff but it’s really hard not to spend time worrying about an impending surgery. I stressed about it in phases. A couple months after my colectomy I was still very aware of the pain associated with surgery and couldn’t imagine going back in for it willingly. I knew my surgeon had suggested I do the surgery within about a year but I just didn’t see how I’d be able to talk myself into it.

As the months went on, the pain from the first surgery started fading and the symptoms of my ulcerative colitis became more irritating in what was left of my rectum. If you’ve ever had a really strong urge to run to the bathroom, you can imagine what it felt like much of the time for me. After researching more about what was going on and why I was still having symptoms, I realized that the risks of keeping an inflamed organ in my body were not worth the benefits of not going through another surgery. Among other things, chronic inflammation is associated with a higher risk of cancer and one of the reasons I opted for the ostomy was an already elevated risk of cancer just from having had IBD for so long.

Once I made the decision to have the surgery and got it scheduled, I had a few months to “prepare”. How do you prepare for surgery? You read about the experiences other people have written about and reach out to people who have gone through it before. It’s really important to remember that a lot of the time, people who have good experiences with surgery don’t write about them because they’re busy living (I might be guilty of this, since it’s taken me a year to write about this!). People who have problems, often post about them asking for advice and venting. So, there’s an overwhelming amount of scary stories out there that are really easy to get your hands on. After reading a bunch of horror stories, I posted on Facebook in a couple of the groups I’m a part of and asked if people had had the surgery and if it was worth it. I got an overwhelmingly positive response. Most of the people who responded said they were so grateful they’d had the surgery, they wished they’d done it sooner, and they’d never looked back. Reading these responses was comforting, but it was definitely a challenge to not let all the stressful scary thoughts take over. I compensated by keeping myself way overcommitted and busy so I wouldn’t have time to worry. I went on vacation for two weeks before my surgery and then came back with a week to tie up any loose ends before I’d be out of commission for a few weeks and then it was go time.

My dad and boyfriend joined me at my pre-op appointments and took notes as I asked questions. Turns out they’re a pretty good team. They were both there to send me off into surgery and made sure to document both my fear and my excitement.

Excitement before Permanent Ostomy Surgery Fear before Permanent Ostomy Surgery

My boyfriend came back as soon as I was wheeled out of the recovery room. Obviously I was pretty drugged coming out of recovery and during my time in the hospital so my memory of it is kind of foggy. I do remember saying “Wow, this surgery is way less painful than when I got Coltrane (my ostomy)”. I kind of remember that I was thinking it was easier because my butt wound didn’t really hurt yet and the c-section incision hurt but it was only my pelvis, not my whole abdomen that hurt. I’m sure my boyfriend thought that was great news before he realized that it was the drugs talking.

I had one of the first surgery slots in the morning and the nurses had me standing up to walk by the end of the day. Getting back into bed after standing was really painful and scary for me. The nurse didn’t really know what she was doing, she was about the same size as me (I think…) and I was FREAKED out about the pain and that I was going to do something to mess up the wound and keep it from healing quickly. I didn’t understand how the doctor had sewn me up and didn’t believe them when they told me I wasn’t going to hurt my incision by moving around. I was convinced that anything that pulled my butt cheeks apart in any little bit was the end of the world (plus it hurt a lot which didn’t comfort me). So, getting into and out of bed was not fun. I was placed in the telemetry unit (I don’t have any heart problems but had expressed some symptom that made them want to keep an eye on me). The telemetry unit nurses were not used to young people with ostomies coming out of their completion proctectomy surgery. I’m sure most nurses other than WOCNs aren’t very used to ostomy patients either, but the difference in the way the nurses treated me after each of my surgeries was pretty drastic. They were a lot nicer and more patient with me the first time around.

Hospital Goal Board SmileThe day after my surgery I noticed that the medical team who had put on a sterile bag for me hadn’t done a great job making sure they had a good seal around my stoma and I was not interested in chancing any skin problems so I got up and set up a changing station and changed my bag. I think that was a good idea, it gave me a sense of confidence and power. The CNAs had insisted on emptying my ostomy bag for me while I was still in bed and that felt like having someone wipe my butt. I didn’t really want anyone else wiping my butt when I had my colon and I didn’t really want someone taking away the basic skill of emptying my ostomy bag since I was capable of doing it myself. The few days I spent in the hospital are kind of a blur. My dad visited some. My boyfriend stayed for most of the time, maybe too long without a break. Being a hospital companion is exhausting. The person you’re providing comfort to is drugged, needy, in pain, probably kind of whiny, sleepy and scared. Not an ideal combination. I’m not proud of myself for being all of those things but I know I’m human and I’m pretty sure it’s normal. The companion has to sleep at some point but the chairs are uncomfortable and the nurses aren’t really keen on letting them share the patient’s bed. The nurses finally kicked him out at 3am on the second or third night. I have no idea where the time goes when you’re in the hospital, but it seemed like between getting my vitals checked, being given pain medicines, eating, napping and walking laps around the unit there really wasn’t a lot of free time to use my computer or read like I had intended.

Permanent Ostomy Surgery Recovery Day 1I was in the hospital for three days after surgery (Surgery on a Friday, left on a Monday). On Monday I queried the nurses as to how many laps around the unit would equal a mile. I was bored, I didn’t have visitors, I felt surprisingly good and I was anxious to keep my muscles strong. I can’t remember how many laps they said, maybe 26. I took my little walker and started off. After 10 or so laps the nurses started making fun of me walking with my walker and told me to ditch it. I finished all my laps feeling pretty proud of myself for walking a mile so soon after surgery and then quickly started to feel queasy. During my laps I had gotten word that I could go home that day and we were just waiting on the doctor to finish filing the discharge papers. Not wanting anything to get in the way of me going home I tried not to let on that I wasn’t feeling very well but one of the nurses noticed. She said I was welcome to stay another night if I wanted but that I didn’t have to. I opted to go home and feel sick in the comfort of my bed.

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