Almost two weeks ago, I had a bowel obstruction which saw me go to A&E. Those who know me will know that I do not go to A&E. In fact, I have not presented at A&E since 2007, when I was diagnosed with ulcerative colitis.

I sit intestinal blockages out at home and go through my checklist of things to help it pass. This is because I don’t trust the hospital to look after me. I’ve had too many traumatic experiences there. I know I’d tell anyone else in the same situation to go, but I can never make myself go. It makes me feel like a bad advocate, pushing others to do something I don’t do myself.

History of bowel obstruction and strictures

I was living with and complaining about intestinal blockages between 2011 and 2014, when I had a J-pouch. They got progressively worse to the point where even fluids caused pain. It was brushed off by my IBD nurse for a while. Meanwhile, I needed to use stronger and stronger pain meds to function, and lived on a very limited diet.

Eventually, during a flexi-sigmoidoscopy of my J-pouch in 2014, a narrowing too tight to get the scope through was identified. Finally, a barium meal X-ray was carried out, which confirmed two strictures; one short and super tight, and another long and super tight. This ultimately led to an emergency surgery, resection, and temporary ileostomy because my J-pouch had been damaged during surgery.

We can fast-forward through the ileostomy reversal and ultimate J-pouch excision in 2018, as bowel obstructions weren’t really an issue during that time. They started again a few years after the excision. Initially, they were few and far between, and there was just one area where things seemed to get stuck. As time passed, I noticed a second area, on the other side of my abdomen. The last two intestinal blockages have been in a completely new place, much higher up.

I have mentioned them to my Gastroenterologist during annual reviews, but I think I’ve played them down: “I’ve dealt with them at home so they can’t be that bad”. Which, in reality, we should both know means nothing because I worked right up until the emergency surgery was necessary in 2014. All of the healthcare professionals I spoke to following that surgery were gobsmacked I was able to stand, never mind move around and make it to work. I imagine the prescribed pain medications, Butrans patches and Tramadol, helped a lot!

Lifestyle habits to reduce the risk of bowel obstructions were introduced many years ago. I eat small, frequent meals, maintain hydration, chew food thoroughly, and exercise daily. Seriously, I don’t think it would be possible to chew better!

My recent intestinal blockage

I’d had this bowel obstruction for about 20 hours and it was incredibly painful. I think it actually got stuck in one place (the new, higher one), then shifted and got stuck again further down… I’d vomited (faecal vomiting), which had decreased the pain slightly, but it was still bad. I couldn’t drink or take my meds. There was a lot of pain in my lower back, which made me think about my previous sepsis experience, but I was also aware it could be kidney pain due to severe dehydration. I was sweating profusely and feeling super confused and disorientated. I began wondering if I’d potentially had a rupture, got an infection, or whether I was simply dehydrated. Was the sweat because of the pain? I had no idea. I decided to call my mum for a second opinion. She immediately asked: “Are you not well?”. Which I guess sums up how I must have sounded.

It was decided that going to A&E to check for infection was the best bet. I couldn’t move because of the pain, and when I managed to budge a bit, I felt really dizzy and nauseous. My mum and dad came over and my mum had to get me dressed and pack some stuff for the hospital.

I previously made a plan and packed a bag, but I’d forgotten all about it due to the disorientation.

When we got to A&E, my mum talked to the guy at reception and then a few minutes later we were called back and he asked the same questions again. I attempted to answer that time, but I wasn’t with it enough to advocate for myself. I could barely speak or stay conscious. I’d been continually drifting off; at home, on the way to the hospital, and whilst in A&E. I remember him asking: “Why do you think you’ve got a bowel obstruction?” which of course is super annoying when you have them all of the time and it’s very obvious to you. 🙄

Anyway, we sat around for hours. I went into one room and she asked the same questions the man at reception had asked. Later, we went into another room and that person put a cannula in, did a blood draw, and said she was going to get some IV pain meds and anti-sickness sorted for me.

People that came in after me kept getting sorted before me. I was so frustrated. It was evidently clear that no one had received any education about the risk of bowel rupture following surgery when dealing with an intestinal blockage. I had stated to everyone I had spoken to that I had had seven bowel surgeries.

The bowel obstruction finally passed while I was in the waiting room. The sweating stopped. I was able to drink and take my own pain meds, which was lucky because the ones I’d been promised earlier never arrived. I kept drinking and almost immediately started to come around a bit. I was able to hold a conversation and I stopped nodding off. We’d been there for over four hours. The output kept coming and I was finally able to make my way to the toilet without the aid of my mum. So, I decided it was time to go home, where I could be comfortable and work on getting rehydrated.

The hospital called that night to see if I wanted the bed they’d just got ready, 8 hours later…

Following the intestinal blockage

St. Mark’s oral rehydration solution is usually, and was, necessary for a couple of days. As usual, I had a sore and tender abdomen. It was a week until I could comfortably wear anything around my waist. I usually eat low-residue foods for a week and then start introducing more.

There’s no escaping the fact that my bowel obstructions have increased in frequency and severity. Then there’s the added bonus of food getting stuck in three different areas now. I knew I needed to reach out to my Gastroenterologist to ask for some investigations. But, I really didn’t want to. My mind was running riot.

1. What if they tell me they can’t see anything?
   • Then I’m still in the same boat, dealing with blockages.
   • I’ll feel like I am just waiting for them to get worse like they did last time.
   • I’ll feel like I have no choice but to live on a low-residue diet to prevent further trips to A&E (see 3).
2. What if they do see what I’m talking about, and say further surgery is required?
   • That would mean having to go back to the place I least want to be.
   • Past experience has taught me that more surgery ultimately results in more adhesions and strictures anyway.
   • The surgeon was already concerned about the risk of short bowel syndrome before the last surgery, so removing more bowel is a concern.
   • There’s a mass of adhesions in my abdomen, so all of my organs are stuck to each other. It makes surgery a lot more complicated.
3. What if they see what I’m talking about but don’t want to risk further surgery and recommend a low-residue diet instead?
   • A low-residue diet is never exciting and it’s hard to have a balanced diet, which I currently focus on because I know it makes me feel better in terms of energy and overall health.
   • There’s also the fear that, like last time, the strictures will just get gradually worse anyway. Then I’ll need surgery anyway (see 2).

But it’s all just stories, born out of fear and frustration. All I can do is make up stories at this point, because I can’t predict the future. I don’t like any of my predictions, but I need to know. I had a cry about it, but I did also call my Gastroenterologist’s secretary two days after the bowel obstruction. I have an appointment booked for next month.

This time, when I had done my low residue protocol for ten days, I planned meals with more vegetables. However, I panicked and was too scared to actually eat them. So, I’ve had a few cries over food, too. I’m not scared of the pain, I am scared of needing to go to the hospital. The place I feel least safe in this world due to previous experiences. That last trip just further cemented my will not to go.

I honestly don’t know where I go from here. I don’t know whether I’ll be able to brave vegetables. Thinking about it makes me cry at the moment. I’ve just got to take it one day at a time, and await my Gastroenterology appointment.