Oh The Pain! Flapjackgate: My First Ostomy Blockage

What was suppose to be a relaxing weekend in preparation for holiday to Cornwall with Ben this week, turned out to be somewhat of a small disaster:

Going to Good Hope A&E twice in the space of 12 hours. Oh joys.

Saturday started off fairly normal – breakfast, shopping in Lichfield, food shopping in Tamworth, followed by lunch at home. I had made chocolate flapjacks the afternoon before and had one after my lunch. Delicious, I thought. I’ve never been a big fan of them but at least I can eat them without pain now, right? Oh how wrong  I was.

A couple hours later, I was having abdominal cramps. They got steadily worse, not helped by a hot bath, a cup of tea, a glass of coke or a abdomen massage around my ileostomy – all the home remedies for a stoma blockage – and when I checked Pricilla at around 6pm – by changing my bag, it could have been strangulating it causing it to block – she was not moving at all. I called our NHS 111 services who advised going to the local A&E department to get checked out. Saturday night, early November… it was going to be a long night.

Looking dehydrated and pissed off.
My ‘wonderful’ A&E cubicle and my quite wonderful dad 🙂










And it was. I was released 6 hrs later – roughly 2.10am – after having had x rays, bloods and a lovely A&E doctor palpitate my abdomen, which started my stoma working again. Wonderful, a quite quick resolution considering it could have been a lot worse. But after a couple hours sleep in my own bed, I was suddenly woken up with a violent need to be very sick and I was. And that continued every 15 minutes for a couple hours. I was, by then, in absolute agony – I was bloated and cramping beyond anything else I had every known. My mom called for an ambulance.


After finding our house, two wonderful paramedics tended to me in my room – whislt I rolled around, doubled up in agony, knowing I would need to go back and this time it wasn’t going to be so quick – gave me a cannula, started a paracetamol drip, hesitate to give me morphine but knowing I would need it, then got me into the ambulance for the drive to the hospital. In route, I had three doses of morphine into my cannula, was sick again but started to feel much better for just having some relief from the pain at this point.

I needed to have everything I had done the night before repeated so a new A&E doctor could assess me correctly, he ordered a surgical consult too, as they would be the team to determine the status of my stoma. In the hours we waiting to have the tests done and to see doctors, I was sick again; this time releaving all of my pain and my stoma started to work again. I wasn’t however out of the woods: I needed to be monitored on a ward – my second home, Ward 16, the surgical ward.

I was moved up there in the afternoon and got seen by the team quite quickly. I needed to remove my bag for the surgical registrar to check my stoma – he needed to do a digi test, by which meaning he would stick a gloved pinky finger into my stoma to check there wasn’t anymore of a blockage left behind. I was on free fluids only, I was starving having not eaten since Saturday lunchtime. The registrar was midly impressed by how well I was coping with my ileostomy – after only three months – and how good the stoma nurses had trained me in changing my bag and looking after Pricilla.

20161114_082558816_iosI was kept in overnight, with the promise of being discharged the next morning after I had breakfast and it proved to have stayed down. I ended up staying until late afternoon because they also wanted me to have lunch too to be doubly sure the ileostomy was continuing to work and my pain was resolved too. Good on both fronts by 4pm.

So what caused this to happen?

Definitely the flapjack. Rolled oats, not soaked in milk or water like in porridge and then baked making them more difficult to digest? Yeah, it was a bad decision. I’ve never had such pain like it; it was worse than the pain I had suffered with over the summer between surgeries. Horredous.

But I’ve been advised to not let this put me off eating oats again. Okay, try them in a different way, make sure they are cooked and softer; but to not be disappointed by the fact that things will get stuck on occasion. My stoma nurse has always believed that having a stoma shouldn’t mean you have to give up food.

If anything, this ileostomy has meant that I am able to eat more food and a better variety of them, giving my body what it finally needs! I crave fruit! I need more water! I vary my proteins and carbs now. Its been life changing and this is only the beginning. This – FLAPJACKGATE – is just a blip and a learning curve. A lesson learnt.

And boy have I learnt it well.


Vedolizumab: The Final Loading Dose 07.11.16

Four weeks have passed. My blood work was done the day of stoma clinic last week so I was on schedule to receive my final loading dose of Vedolizumab then on to a regular schedule of having it. As I said in my last post about Vedo, we still didn’t know if this was working yet or if it was going to work. We just had to complete the loading doses – week 0, week 2 and week 6 – before moving onto the usual eight weekly infusion schedule. I haven’t thought or planned past receiving that fourth dose in […]

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Returning to Work…?

Today I attended a work coach appointment at our local Job Centre. NB: I currently receive ESA because I’m unemployed and recovering from surgery.  I’m still yet to my surgeon for my post op check, but so far things have been going well with my stoma and my Crohn’s; I haven’t been left without any help or care! So today was about seeing what will happen next. Usually, a person on ESA gets assessed but due to the situation at the DWP and my own circumstances due to surgeries, this has been halted for the foreseeable future. But it does […]

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Grieving: Those Waves Don’t Stop

They “prep” you for surgery; you hear that a lot in the weeks and days leading up to an operation. Medically, you should be fit enough to withstand the trauma your body is going to under take. You should be aware of the potential dangers, prepare yourself for things to be different than what you’re expecting, what you’re thinking could happen; even if you’ve had surgery or this surgery before. What about mental preparation? Do the doctors ever prepare you for surgery? Apart from what I’ve mentioned above, how does anyone prepare for surgery? I was a novice to it all in May, there […]

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So, knowing I was going to be in town today for a dental check up, I decided to do some writing in a local coffee shop. Got a loyalty freebie so I was all set. But my stoma had other plans. I was just finishing up my coffee and got my notebook out, and pain shoots through my bag. My stoma is working overtime to push something through; last nights dinner. Of course, we had chill. With beans in it. Corn chips on the side. I hardly drank yesterday when I think about it too, so just absolutely shit situation. […]

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How do I hate something that has saved my life?

No, seriously, how? Maybe the question should be ‘CAN I hate something that has saved my life?” or even “Can I hate something that has CHANGED my life?” Because, I can hate the fact that my disease was so bad, they had no other option than to remove my colon and give me my ileostomy. I can hate that fact until the cows come home, it still doesn’t change what happened. Does hating my ostomy make it easier to accept? Does this just make me negative and unable to live with it? I have no choice but to live with […]

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Vedolizumab: The Restart

Following my subtotal colectomy in August; my IBD team recommended returning to Vedolizumab. I had already tried Vedolizumab; receiving the three loading infusions last winter. This is where I was and how I was feeling as 2015 turned into 2016: “… So, it hasn’t gotten any worse, but the past year’s drug choices haven’t made it any better. I’m on a plato; and its going down, albeit slowly, over time. For me, the past 10 months haven’t been brilliant. They haven’t been the worse either, but I’ve noticed a definitely decrease in how well I feel in general, an increase […]

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Double Check Up – 22.09.16

It’s not unusual to spend time at the hospital for back to back appointments. But when they happen at different hospitals, it gets abit more complicated. We spent the morning travelling across the city to Queen Elizabeth Hospital (QE) for my liver check-up. I’ve been attending this particular clinic for almost three years since some routine blood tests revealed very high liver function results. Given my complicated IBD history, I’ve been seeing the head of the department, a Professor; and had lots more blood work done and specialised testing to give me a diagnosis. Not that I’ve ever needed one; […]

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One month post op

  “Time moves slowly but passes quickly.” That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering from surgery. Mention-worthy moments: Not needing any pain relief since being discharge. Being able to manage my stoma – when its changed size and the output has changed consistency. Even […]

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To new beginnings…

Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]

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Nottingham GI Clinic – 14.09.16

At least three months overdue, rearranged twice during my extended post op recovery; we finally made the trip to Nottingham to Queens Medical Centre to see my second opinion Gastroenterologist. It’s always abit weird to see how another hospital organise their clinics. This was our second visit to see Dr Moran – head of Digestive Disorders, specialising in clinical trials for IBD – to discuss my case. Since we last came in January, I’ve had two surgeries, three admissions, two MRI and a CT scan and a colonoscopy. Explaining the last six months was going to be fun. I took him […]

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In for the long haul

Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]

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A Spiral of Set Backs

I last wrote anything about my Crohn’s disease back at the end of June. That is almost six weeks ago but feels so much longer ago. And in retrospect, so much but so little has happened. It’s just been one thing after another; without the last problem really going away. So I was being discharged in my last post after my bowel infection from surgery. That problem resolved itself a week after I came home because of the antibiotics my surgeon prescribed to knock it out of my system. It seemed to do the trick; I was eating more, managing […]

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I was never given any real information on how to recover from surgery. Sure, I got details on what had happened to my body, what I was now missing and how to best adapt going forward but I never expected ‘complications’; even though they were there, in black and white, at the end of the procedure paperwork, to happen to me.  Complications included: Chest infection. Illeus (temporary stoppage in bowels). Damage to the bowel. Ureter damage. Internal haemorrhaging. Bowel obstruction. Stricture. Anastomotic leak. Wound infection. Urinary Tract Infection (UTI). Deep Vein Thrombosis (DVT).  Pulmonary Embolism (PE). All of which were most likely to occur soon after surgery, their chances diminishing the further […]

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The weekend after surgery saw the most activity. This would be the removal of my catheter, getting out of bed for the first time and finally being able to eat. Having not been awake for the insertion of the catheter, the removal was pretty painless. It was more uncomfortable than anything and it did mean I would now have to get up and find the female toilet at some point; with a PCA pump and a bag of IV fluids. It’s quite amazing how much the catheter was doing for me because it wasn’t long before I needed the loo […]

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So last time, I had just had my pre op assessment for my surgery. I’ll admit, that appointment was extremely helpful – it calmed me more than I had expected and I finally felt relaxed for my operation and I knew I had made the right decision. On the morning of my surgery – Thursday –  I packed my overnight bag with some pyjamas, face wipes, my phone charger, kindle and dressing gown. I was told I was being admitted via the Day Surgery Unit at the hospital at 1pm. My dad had kindly taken the day off, so we […]

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Pre Operative Assessment – 10.05.16

Its finally here; the pre op appointment! Before that appointment, I also met with the stoma nurse at the hospital; there is a small chance – 10% or so – that my operation could result in having a temporary ileostomy, so we discussed what one would look like, which side I would have it on, how the bag would fit to my abdomen and why it would be needed. If my surgeon finds extensive disease in my transverse colon he wishes to remove, he could very well create a ileostomy to help me out for a couple months before coming […]

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Seven more days of having all my insides, still inside of me. Seven more days of this constant, terribly draining pain. Seven more days in this current chapter of my IBD life. I know surgery isn’t a magic or quick fix. I know I will be in pain afterwards, a different pain from the one I’m experiencing right now but I am hoping this will be controlled better and not be constant once I’m off painkillers. I know its a big deal for my body to be put through; the worst its been through is a flare up four years […]

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Two weeks and counting…

BLERGH but YAY This sums up how I feel right now. I’m looking forward to hopefully not being in this pain much longer but I am dreaded the lead up to the surgery date and what that morning will be like. Because its all new to me – being my first surgery and all – I’m really anxious. And apprehensive. It’s two weeks until my surgery. I’ve finally had all my paperwork for my pre op and my admission for the actual surgery. It’s come around fast. Faster than expected. Even though it was only a month away when I […]

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GYN Surgical Consult – 19.04.16

The morning after arriving home from holiday, we were back at the hospital, seeing yet another surgeon. Thanks to my colorectal surgeon’s quick referral, I was going to see a gynaecological surgeon to discuss the removal of the cyst on my left ovary that was discovered on my last MRI in October 2015. I’m very glad it only took a week to get into a clinic to discuss this with them; it had been the one thing that had plagued me throughout our holiday – sleepless nights and irritability with my additional pain levels – I was more worked up […]

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