LONG POST ALERT!

This has been a difficult post to write. It wasn’t easy to go back and remember everything that happened and how it happened. I wanted this to be a positive and encouraging post for anyone who may be considering or due to have proctocolectomy surgery - but it just couldn’t be that without being something more challenging first. I debated just writing a kind of factual timeline, accurate but emotionless. But I couldn’t do that. As it turns out, I discovered the need to “give up the ghost” of everything that transpired, so I could finally land firmly on the other side, where the grass truly is greener than it first seemed. Ultimately, this post has one overarching message: it gets better!

Adjusting

A few weeks after my emergency ileostomy surgery, recovery was going well, I was feeling so much better overall and was gradually getting used to my new ‘accessory’. That’s not to say it was smooth sailing. There was a lot of adjustment, a lot to get used to and plenty of different types of discomfort. Bag changes in particular were quite the challenge: my very first solo bag change took me almost three hours! I had not yet settled into a routine, or figured out when my stoma was quiet enough for the easiest possible change, and I was still figuring out the many accessory products like barrier rings, stoma powders and pastes, and how to best use them to deal with the various skin irritations I was dealing with. My hands were clumsy, there was a lot of sticking and unsticking, and of having to start from scratch because Buddy (my stoma) decided to wake up and make a mess mid-bag change.

It was precisely during these more difficult and frustrating times (often accompanied by tears and flinging of objects across the room), where I would self-soothe by telling myself that all this was only temporary. I would learn to live with the stoma in time, but the plan was that, all being well, I would have stoma reversal surgery within a year, so it’s not like I had to put up with the discomfort forever.

Despite the post-surgery pains and all the bag frustration and skin irritations etc, there was no denying just how much better I was feeling.

At the same time however, I confess that, while I focused on, and looked forward to, the future stoma reversal, it also scared me. Despite the post-surgery pains and all the bag frustration and skin irritations etc, there was no denying just how much better I was feeling. The pain I had learned to live with on a daily basis over the preceding years was practically gone, and while I had to eat very carefully in the early stoma days (to avoid a blockage), I was still able to eat better than I had done in the last year, and wasn’t doubled over in pain after I did. I dreaded the thought of undergoing a complicated reconnection surgery only to later find myself back in a flare situation, weighing up all the medication options all over again, going through another round of hell, and then possibly ending up needing further surgery, or going back to having a stoma after all.

AN UNPLEASANT SURPRISE

Cue the arrival of the surgical histopathology report. Much to everyone’s surprise, a cancerous tumour had been found in the part of the large intestine that had been removed during surgery. A tumour that had not shown up on any of the seven MRIs and CT scans that I had done over the previous nine months, and had not even been evident during the surgery itself. Not exactly great for inspiring confidence in the accuracy of imaging is it?!

A follow-up colonoscopy of the remaining large intestine revealed low-grade multifocal dysplasia. Translation: a mutation of the cells which is often the beginning of the development of cancer. So not only was reconnection off the table, but we were now talking about a completion proctocolectomy (removal of the remaining large intestine and rectum) to make the stoma permanent.

Not only was reconnection off the table, but we were now talking about a completion proctocolectomy to make the stoma permanent.

After the initial shock and distress, I accepted that this was the course of action that would give me greater peace of mind in the longer term. The alternative was not to have the surgery, but to do ‘active surveillance’, which meant a return to frequent repeat imaging and scopes and all the stress that goes with them, holding my breath for the results each time, hoping that things hadn’t ‘turned’. I couldn’t go through that again. I couldn’t live in limbo anymore, waiting to see what was going to happen, every day revolving around what was going on in my gut, living with the fear of worrying developments sneaking up on me yet again. I was finally feeling better, and I just wanted to “get a life” at long last!

So, surgery it was: on November 1st 2019, eight months after my emergency ileostomy surgery, I was booked in for the proctocolectomy (hilariously referred to as ‘Barbie Butt’ surgery by the ostomy community, as it essentially renders one’s posterior purely ornamental, and utterly non-functional).

I couldn’t live in limbo anymore.

I was determined to make the experience of my second abdominal surgery infinitely smoother than my first. Everything was planned this time, I was in much better overall health, I had plenty of time to prepare myself both physically and psychologically for what was to come, and I now knew what to expect from this kind of surgery and the hospital stay that follows, so by comparison, it would be smooth sailing this time – right? Wrong! So very, very wrong…

Waking up

The return to post-op consciousness is a blurry mess in my memory. But one thing is crystal clear: pain. So much pain, I found it difficult to breathe. My entire pelvis felt like it was both being put through a meat grinder and under a car crusher at the same time. And the pain meds weren’t working.

I had discussed pain management with my doctors before the surgery, and had requested a repeat of whatever it was they gave me the last time, because it had worked like a dream and my two days in ICU after my last surgery had been a blissful blur. My surgeon told me that ICU would probably not be necessary this time, but I knew that I could only get the “good stuff” (ie the super strong pain meds) in ICU where I could be more closely monitored. So I actually requested to spend the first 24 hours in ICU so I could essentially be zonked out and pain-free.

The pain meds weren’t working.

Well that certainly did not go according to plan. This time, the pain meds did next to nothing. I was in agony. I could barely muster enough strength to squeeze the call button the nurses had placed in my hand or tell them I was in pain when they checked in on me.

There is one memory that haunts me, and I do not use that term lightly. If I have a nightmare, it’s this, re-lived. I remember pain, and I remember voices, several of them, around me. They sounded worried, almost frantic. To my right I heard a nurse saying something about blood pressure: it was climbing too high. From somewhere on the left I recognised the anaesthesiologist’s voice, saying something about changing the meds, and something about risk. More blurriness, and voices in the background. The next thing I know, the pain was finally a little less. But the voices were stressed again. I heard them say, “she’s not breathing!”.

My surgeon’s voice came from near my left shoulder: “Nicola! Breathe!”. A hand touched my foot and shook it gently; my mum’s voice came from the foot of the bed, “keep breathing, just breathe”. I remember thinking, “what are they talking about, of course I’m breathing”, and in the same moment suddenly realising that I was actually desperate to inhale, so I did. I just wanted to sleep, to dive deep into the blurry darkness and escape the pain, but the voices interrupted me. They were telling me to breathe again. Again, I realised my lungs were aching and I needed to inhale…This went on for a while, and then back to blurriness.

They were telling me to breathe.

It was explained to me later that, because (for whatever unknown reason) the pain meds were not working this time, in response to the intense pain, my blood pressure was climbing. So, they wanted to switch me over to a different pain med, which they hoped would be more effective. However, the two meds could not be taken simultaneously. In order to make this switch-over safely, the original med had to be stopped completely (allowing the pain, and therefore my blood pressure, to increase even more), and only then could the new med be introduced. It’s possible to start the new med in small doses before the first med is completely stopped, but it comes with the risk of stopping the patient’s breathing.

What had happened in my case was that, as the first med was being reduced, my blood pressure just got way too high, so they had to start the new pain med (in order to bring it down) before the first one was fully stopped and flushed out of my system. And this caused my breathing to drop to a dangerous low. I was taking just 4-5 breaths per minute (the normal range is 12-20), hence the orders to keep breathing. As a result, they couldn’t risk carrying on with the switch-over, and so resumed the original med, but gave me small doses of another (less strong) pain med every few hours for a little extra relief, and to keep my blood pressure from getting too high again.

I remember feeling regret and wondering why I had chosen to do this to myself…

After hearing all this, I decided to stop hoping and waiting for there to be no pain (as had been the case after my last surgery), but to accept that I was in pain, and would be so, until recovery kicked in and it would slowly start to improve.

In the midst of the pain fog, I remember feeling regret and wondering why I had chosen to do this to myself…why hadn’t I gone for the active surveillance option? It would be a good few days before I would be able to remember and stand by the reasons for my choice once again.

ICU NIGHTMARES

My ICU drama didn’t stop at pain. Contrary to my previous, calm and quiet stay in the ICU, this time there were two other patients who made things that bit more difficult. One was an elderly man with advanced Alzheimer’s who would just repeatedly shout incoherently, and then weep inconsolably, which was very distressing to hear. The other patient was a lady who refused to use the call button, and instead chose to get the nurses’ attention by screaming “Help!” over and over again, at the top of her lungs, until someone came rushing in. I could hear them comfort her and gently ask her to please use the call button, reminding her that there were other patients around her, but she just replied defiantly that they couldn’t tell her what to do, and if she wanted to shout, she would shout. And she did – a lot. Some nurses became very frustrated and wouldn’t rush to her room when she shouted because she would call them constantly for something minor and far less important than what they might have needed to do for another patient. A human response I suppose, but one that meant that the cries for help could go on for far longer than felt bearable.

Full-blown insomnia, anxiety, and the complete and utter distortion of time.

Between the two of them, there was very little peace and quiet, and I found myself getting anxiety attacks when I would hear them. Even later, when I was out of ICU and in the ward, I had many instances of nodding off and waking up moments later in a full-blown panic because I thought I could hear them again.

Which brings me to the strangest part of this ICU experience. Something I could not understand at the time, but that was explained to me later on. There is something called ‘ICU Psychosis’, which is a well-established temporary state that ICU patients can suffer from, and which I certainly got a taste of. There are many possible symptoms, even including hallucinations, but for me the worst of it was full-blown insomnia, anxiety, and the complete and utter distortion of time. I vividly remember checking my phone to see how long I had to wait for the 1-hour time-slot when I could have a visitor, and I saw that I had a little over three hours to go. I told myself I would not obsessively check the time, I would make myself wait so that when I eventually did check, I would be pleasantly surprised at how much closer I was to having some company. I tried to sleep. I thought I did. I fought the urge to check the clock about a million times. I tried to meditate. Nope. I tried thinking of something pleasant in the future that I could look forward to.

The journey to the ward felt so bright and loud and alien compared to the horrible stillness of my ICU room.

I was expecting to have these thoughts interrupted at any moment by a visitor walking in, because hours had passed! Finally, I couldn’t take it anymore and so I picked up my phone, and had the shock of my life: it had been eleven minutes since I had last checked it. I thought I was going insane…Time had lost all meaning. I finally fully understood expressions like “time crawled by”, and “the minutes felt like hours”. I felt so confused and lost to the extent that I didn’t know what was real and what was not. It truly felt like I had been there for days on end, when it was just a single morning.

Because of the difficulty with pain management, my surgeon had wanted me to stay in ICU longer than originally planned. But by the end of the second day, he took one look at me and said, “we need to get you out of here immediately”. I remember feeling so overwhelmed when they finally wheeled me out of there. The journey to the ward felt so busy and bright and alien compared to the horrible stillness of the ICU room.

Photo by Ridofranz/iStock / Getty Images

NEVER A DULL MOMENT

Upon arriving at what would be my room for the next two weeks, I was informed that the morning’s blood tests showed that I needed a blood transfusion. It was an uncomfortable experience: four hours of hot flushes and anxiety (both apparently not uncommon during a transfusion). Indeed, for the first 24 hours out of ICU I had quite severe anxiety, that I could not explain or understand. I even asked for a tranquiliser, but it did absolutely nothing, I was just so wired.

I didn’t actually sleep for more than 15-minute bursts until my tenth day in hospital.

I didn’t actually sleep for more than 15-minute bursts until my tenth day in hospital. And I only managed that because of the effect of leftover anaesthetic from another surgery that I ended up needing. But I’m getting ahead of myself…

Around midday on day five, the surgeon came in to remove the drain I had coming out of my abdomen. I was relieved, it was uncomfortable and I wanted it out, and I remembered the relief I felt when the drain was removed after my last surgery. Last time had been painless, so I wasn’t worried. And yet, I literally have no words to explain the intensity or depth of what I felt this time. It was a guttural pain, like being ripped open. I remember hearing someone making agonising, almost animalistic sounds, and being shocked to realise that they were coming from me.

It was a guttural pain, like being ripped open.

When it was over, I was in a state of complete shock. I was paralysed, with subtle tremors running up and down me. I couldn’t move and I couldn’t speak. It felt like I had left my body, to escape what had just happened to it and everything it had felt. I just lay there, waiting to come back to it. Minutes later, I started having spasms. I felt so cold, and could not stop shaking and shuddering. My jaw started to hurt from the chattering of my teeth, my abdomen and pelvis were in agony because I couldn’t stop my surgically-battered muscles from clenching and unclenching over and over. I don’t know how long this went on for, but when it finally eased off, it was replaced by something more worrying: fever.

JUST A MINOR COMPLICATION…

I spiked a fever of 38.8°C but it felt like it should have been at least 40°C. I could have sworn I was being engulfed in flames. I was monitored very closely, and after persisting for several hours, the fever finally started to drop, but remained as a low grade fever for the next couple of days. I was told that this low grade fever was not unusual for the kind of surgery I had just had, but to cover all bases, my doctors decided to do a CT scan.

The scan revealed the formation of a hematoma.

The scan revealed the formation of a hematoma (a collection of blood) very near the back incision (aka the ‘Barbie Butt’ stitch). Again, I was told this was not unusual following the physical trauma of proctocolectomy surgery, and that it usually resolves by itself, with the help of antibiotics, and in the worst case scenario, could be easily drained by going back into surgery. That worst case scenario terrified me.

So, I was started on a fresh rotation of alternative antibiotics. I was cycling through three different, and very strong, antibiotics and their side-effects were numerous and unpleasant, the main offenders being nausea, migraines and severe brain fog. However, the low grade fever was persisting and my blood-work was not showing enough of an improvement either, so, on day ten, after 72 hours on this evil antibiotic cocktail, my doctors decided to do a follow-up ultrasound to check on the hematoma.

I was told that I would go back into surgery that night.

A trans-abdominal ultrasound revealed that the hematoma had liquefied (which was good), but the fluid was pooling at the base of the pelvis and showed signs of possible infection. The antibiotics did not seem to be working as effectively as my doctor would have liked, so he recommended going ahead with the surgical option, so as to drain the fluid, leaving in a very small drain to ensure fluid doesn’t collect there again. I went back into surgery that night.

I remember waking up with fresh pain shooting throughout the back wound – I had just started being able to sit normally and now I was back to square one again. I begged them to give me something stronger for the pain and the burning I felt, which they did. That, combined with the leftover anaesthetic in my system, gave me my first sleep in ten days.

LIGHT AT THE END OF THE TUNNEL

After that, things finally started to go more smoothly. Although I still had quite extreme discomfort around the back incision (worse than after the first surgery), making sitting virtually impossible, there was at least no more fever, and my blood tests were improving.

I need to say that, throughout this whole ordeal, I was extremely lucky to have special people by my side, for both support and distraction. Thinking back on it all now, I genuinely don’t know how there could have been any moments of near-normality or even laughter in all the unpleasantness - but there were! One particular highlight was playing a game of “Heads Up!” one evening with two friends (you know who you are!), which we had to bring to an abrupt end because I laughed so much that I genuinely feared I would pop my abdominal stitches or give myself a hernia - or both.

I genuinely don’t know how there could have been any moments of near-normality or even laughter in all the unpleasantness - but there were!

I was finally able to go home after fifteen days in hospital, and I could not have been happier to leave. A week later, I went back in to have the soft drain removed and thankfully, I felt absolutely nothing! The doctor said there was still a small open wound where the drain had been but that it would close by itself over the next few weeks, which it did.

As far as stitches were concerned, they were the kind that would fall out by themselves after a few weeks. However, after two weeks of being home, my discomfort was so bad that the doctor agreed to check them to see if they could safely be removed. Thankfully they could, but the removal process was…let’s just say it was beyond uncomfortable and unpleasant. I have a very high pain threshold, and I can, and have, endured a lot of physical discomfort and prodding over the years, but this had me sobbing despite my best efforts to breathe through it. I think I was just maxed out by this point. My tolerance levels had dropped to the bare minimum and I was completely saturated, so I definitely did not handle it as well as I could have.

However horrible the removal process may have been, the relief when it was over was immense!

It must be said though, that however horrible the removal process may have been, the relief when it was over was immense! That was, without a doubt, the turning point in my recovery, and in my finally starting to feel better and able to put the whole unpleasant saga behind me. Plus, I could finally sit down again - result!

FINAL THOUGHTs: IT GETS BETTER!

As I said at the beginning, I really struggled with writing this post. I wanted to write a completely honest account of my experience, with full disclosure of the entire process, but at the same time, I really didn’t want it to come across as melodramatic or self-pitying in any way, and I definitely didn’t want it to put off or frighten anybody who may find themselves in the position of needing to have a proctocolectomy.

Everybody’s experience is individual, and this was mine. If you are due to have this surgery, please don’t let my personal experience scare you, but rather, let it prepare you, and let it highlight the areas you may want to spend a little extra time discussing with your medical team – their plan for your pain management, for example.

I decided to stick with the full awful story, and not water it down to just the essential facts, because the message I ultimately wanted to convey is this: pain ends, it gets better. No matter how bad things can seem, or indeed get, just hold on as best you can because it does get better, YOU get better.

More than anything, I decided to stick with the full awful story, and not water it down to just the essential facts, because the message I ultimately wanted to convey is this: pain ends, it gets better. No matter how bad things can seem, or indeed get, just hold on as best you can because it does get better, YOU get better.

I am now so much stronger, healthier and happier than I was before my surgeries, and getting through all that awfulness, has made me feel (and know) that I am stronger and more capable than I thought, and that I can get through a lot more than I ever gave myself credit for. It’s not easy, but it is doable, and you can and will get through it.

From Colon to Semi-Colon Part 2: Proctocolectomy