"It’s Not as Bad as You Think"

It’s Not as Bad as You Think – My Honest Colonoscopy Experience (as a Spoonie)

I’ve had a few colonoscopies over the years — enough to feel anxious going into this one, but with enough time passed that the details had blurred. I just remembered the nerves, the prep, and a general sense of ugh.

But here I am, on the other side of the experience, grateful for the care I received, and hopeful that sharing this story might reassure someone else facing the same thing.

My health is complex — and often contradictory. I live with multiple chronic conditions, including Crohn’s disease, post-viral fatigue, fibromyalgia, and a rare neurological condition called idiopathic intracranial hypertension (IIH). My thyroid is too slow, my heart beats too fast, and my energy swings between wired and wiped out. Each condition pulls in its own direction, and managing them together means carefully pacing my days, juggling medications, and planning everything with precision — even rest.

Over the past few months, my digestive symptoms had worsened. I was experiencing diarrhoea with urgency, bloating, pain, and exhaustion after meals — more than usual. My new gastroenterologist suggested a colonoscopy to investigate further and rule out anything serious.

Even though I’ve had many hospital visits, I still felt nervous. There’s something uniquely vulnerable about this procedure. It touches on bodily functions we’re taught not to talk about, and for those of us already living with pain and fatigue, it also brings up worries about how our body will handle the prep and recovery.

As the date got closer my symptoms improved a bit after being prescribed a nasal spray for a different problem altogether. It had a small amount of steroid in it which my bowel seemed to appreciate.

I remembered that the bowel prep is one of the worst parts of the procedure and that was true this time too. I was prescribed Plenvu, a powerful laxative solution designed to clear out the bowel so the camera can do its job.

I started the required low-fibre diet 5 days in advance. It was manageable and actually the kinds of foods I prefer (white bread, white pasta, meat, cheese) but it still felt like one more thing to navigate.

On prep day, I stayed close to the bathroom and tried to stay calm. The drink itself wasn’t as awful as I feared, but the effects were intense. My body was already sensitive from IIH and fatigue, and the frequent bathroom trips left me drained and shivery at times.

What helped the most was being prepared:

1) Wet wipes as well as toilet paper saved my skin and soothed the soreness.

2) Barrier cream applied early and often prevented irritation.

3) Raising the head of my bed helped ease nausea.

4) Sipping water slowly between Plenvu doses kept me hydrated.

5) And when things got overwhelming, gentle breathing exercises grounded me.

Emotionally, it was tough. At one point, I cried — not from pain, but from the sheer physical overwhelm of it all. But I reminded myself this was temporary. Just one evening, and one morning. And then it would be done.

My procedure was scheduled for early afternoon, which meant a long morning of fasting. I also had to stop drinking water a few hours before too. This was difficult, because my mouth gets very dry. But I made it through, and my husband drove me to the hospital.

The endoscopy unit staff were kind, calm, and welcoming. From the receptionist to the nurses to the specialist who explained the consent form — everyone treated me with dignity. I worried beforehand that I’d feel embarrassed. I didn’t. Not even for a second. They’d clearly looked after hundreds of patients, and their quiet reassurance made all the difference.

In the procedure room, I lay on my side and was given conscious sedation. I was still aware, but relaxed. I felt some pressure and movement, and a bit of pain. But the team talked to me throughout, telling me what they were doing, checking I was okay, even showing me the monitor when I was curious.

I was even given some positive feedback that they could not see any ulceration. At my last colonoscopy I still had 1 ulcer left. At its worst I had 5 ulcers. So to have 0 is def something to celebrate. The results of the biopsies will come in a few weeks time.

The whole thing took around 30 minutes. I was then wheeled to recovery, wrapped in a warm blanket, and given time to rest. I remember sipping water and thinking, phew! It’s really over?

I went home later that day feeling tired, but not unwell. A bit bloated, a bit wobbly, but very, very relieved. I took it easy for the next 24 hours, reintroduced food slowly, and focused on hydration.

If you’re reading this because you’ve been told you need a colonoscopy, here’s some thoughts to consider:

* You’re allowed to feel nervous. It’s a big deal — emotionally and physically. That doesn’t mean something is wrong with you. You’re human.

* The prep is tough, especially for spoonies — but it’s manageable with support and good planning. Be gentle with yourself. Treat it like a mini recovery mission.

* The medical team will take care of you. They’re professionals who do this every day. They’ll help you feel safe.

* Embarrassment disappears quickly. It’s replaced by calm, focus, and often, even humour. You might even find yourself smiling as you leave.

* It’s worth it. Truly. The reassurance it brings — or the chance to catch something early — is invaluable.

To the team who cared for me that day: thank you. You probably don’t know how much your quiet warmth mattered. I arrived anxious and depleted, and left feeling respected, safe, and heard. That stays with a person.

To anyone reading this, wondering if they can handle it — I believe you can. I didn’t think I could. But I did. And I’m proud of myself. You will be too.