Waking Up with a Stoma

I had been through recovery before, knew that the groggy fog of the anaesthetic would eventually lift. But this time around I felt utter relief. I was confident this time that this was going to be a new life for me.
I felt around under my hospital gown for the scar, for the bag. The scar felt huge and like I had been ripped apart inside but in reality it was neatly glued together, all seven inches of it. The bag sat on my right hand side; I proudly touched it, flinching slightly at pain, feeling the outline gently, hearing the crinkle of the bag. I’m sure I had a smile on my face, it was hard to tell with the morphine. Despite that, I knew this was it. It would be challenging yes, but I was on a new path now, to a new life.

Through the haze of morphine, I can only truly remember the second day after my surgery. The first day – a mere eight hours after surgery has taken place – I can only remember being surrounded by nurses every time I opened my eyes, high in the air on my bed. Being tended to, aware that my mom was in the room at times, having my TPN reconnected, my wound checked, then my catheter; I noticed people being around.

The following day, I awoke to a new bag; someone had changed my surgical one at some point. The grey oval rectangle felt so foreign to me. Despite it being empty, it felt heavy. I had been well prepared for my ostomy surgery, knew what to expect but even still, seeing that bag attached my abdomen; it was a shock. There was no going back from this, I had to come to terms with it, physically, accept it however I could.

That was the one thing  no one but me could prepare for. How to mentally accept living with an ostomy. Having a stoma, in all its guts and glory.

A new stoma is very swollen so when it starts working you feel it.

After weeks without food, what was coming through my bowels, out of my stoma and into the bag was bile. Despite it being liquid, it hurt. My stoma was new, it didn’t know what was going on, nor did I.

With the pain I was in from the surgery, I was fascinated in how my body was now working. I did my best to look at my stoma through the bag’s inspection window, familiarise myself with it. I would watch it working and keep an eye on it. I would soon be allowed some food to test it out more, learning how to look after it was just beginning.

I could feel the output hitting my skin and it was irritating it straight away. I knew I had to change the bag, and I had to do it alone. I’d only changed it once before now; with the stoma nurse, I had to put my big girl pants on and get this done! I needed to protect my skin from damage.

The routine of changing my bag was strong from the get go. Testimony to my SCN for her advice and support, despite our first rough encounter, three days post op.

I was disconnected from TPN so I gathered my stoma bag and made my way to the bathroom. I was feeling okay but weakness was my biggest issue. I could not stand up for long. I was panicking that I would faint again or collapse in a heap, shit everywhere. I pulled the cap of my adhesive remover shakily, unable to focus. What if I did it wrong? My call button was so far away! I took a deep breathe, sprayed my remover, took the bag off my belly; noticing the redness of my skin. I cleaned myself, cut my new bag, continuing to breath despite feeling dizzy from being upright. The output had a mind of its own; it took 15 minutes to get it calm enough to apply the new bag.

But I did it. I finally got myself sorted. Exhausted, I went back to my bed and promptly went to sleep.

Learning how to look after my stoma – proudly called Pricilla – wasn’t without its challenges. But as I got more used to her, the better I felt. The better I felt, the easier taking care of myself became. This was a deeply meaningful time for me; it has really helped me see things clearer. Never before had I wanted to be so proactive in my care, my decisions or my lifestyle.

I had a pretty smooth physical recovery from surgery. The mental scars were deeper. Realising that my surgery had actually happened, noticing how well I was now ‘sans colon’ was something I just didn’t quite believe to start with. I was always on tenterhooks, waiting for my body to fuck me over again, like it always had done. I didn’t expect such a smooth transition back into Crohn’s medications, then into remission and now into what I’m calling ‘The Med Free Zone’.

Waking up with a stoma is by no means an easy ride. Whether it is an emergency operation or a planned elective one, having one when you wake up from a surgery is scary. But you decide how long you want to be scared about it, by it, with it for. It is all in your own hands.

Diagnosis: How I Feel Five Years On…

A casual Twitter conversation launched me right into this; right back to the moment when I was diagnosed with Crohn’s Disease: How much from the day I was diagnosed with IBD do I remember? I remember the fear. The unknown factor. I remember the hospital trolley I lay on whilst I wanted for my scope. I remember the pain I was in, the unbearable agony my stomach was giving me; that was no longer just the nerves of being in hospital, alone. I remember the clinical setting, the clean smell of hospital and the idle chatter of the endoscopy nurses. […]

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Doing Long Distance

A couple of weeks ago, I started a new job. And not just any job; one I was so damn excited to get and actually start. But it meant moving away from home. That was a messy feeling in my head for weeks, which included moving all my patient care for my IBD and stoma as well as packing and getting my head around being away from home. I haven’t done that since I lived at university and my year abroad in Canada. Both those times fill me with great memories so I have high hopes that this big move […]

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Being Medication Free: It’s Effects on My Body

Let me begin by stating some facts: Since I was diagnosed in 2011, I have had only two short spells when I did not take any medication for my condition. Those two periods of time were only a couple of weeks long in each case. I have tried all the conventional medications for my Crohn’s disease – meaning I have not taking any experimental or trial drugs to help my condition. My last method of controlling my disease was surgery. Let it be known that I do think that medications can help IBD. There has been many years of information, […]

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Meal Planning – May 15th

This week the prep I did last weekend helped a lot, just like I knew it would be. And surprisingly I managed to stick to the plan I laid out of myself here. This weekend has been slightly different because I have a week that involved some evenings being away from ‘home’: I have a important doctors appointment – transferring my IBD and ostomy care, big scary step! – and I’m in London for an BDRF event too. This means, I haven’t prepped this weekend, I’ve chosen to relax instead. I feel slightly guilty for this because my weekends usually […]

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Happy Surgery-iversary…?

May 12th. It is forever etched into my brain. We’d been able to control, for the most part, my disease with medications and ‘diet’ for the five years prior to that. But, somewhat inevitably, it came down to needing a clinical trial or surgery. I opted for surgery but debated the toss for weeks after choosing. I was going to need testing to predict the type of operation I would need and I still went back and forth throughout all that testing. But once we had a plan, I was keen to move forward. The pain, the nausea, the inability […]

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That First Week or So…

Feeling all those emotions Most of them good; still some of them are ‘bad’. I started at my new job last week. I have six weeks of training to complete until I am a fully fledge member of the team but already I really enjoy what I am learning and am eager to put it into practice. It has been 15 months since I last worked or was employed. Employment for me had always been something I did; instead of enjoying it, having a passion for. Don’t get me wrong, I know I needed to work and feel normal when […]

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Meal Planning – May 8th

It sure has been a while eh? Well, I had many weeks where I was just feeling so uninspired to actually blog about my meal planning and prep for a few reasons: I was trying to rid my house of older food that had been neglected in the freezer I was doing my best to eat well but frugal I have a new job and relocated for it so packing and moving took priority! Now that has all passed, I am in a new routine in which meal planning and meal prepping have a leading role in my downtime away from […]

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April 2017

Yet again, the month has flown past. There has been lots of change this month. I’ve spent a significant amount of time finding a place to rent in my new city for my new job and getting myself organised and sorted for the end of April. I’ve had all of the month to get packed and my head around the fact I am going back to work. If it hasn’t been for this particular job I am going to do, I would not have moved. But some of the allure of my job, is the fact that I have to […]

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Grateful for my Struggle

“In order for me to get here, I had to go there.”   I’ve never really sat down and thought about what having a chronic illness actually means. It means a great deal of things to different people, so there is no one true answer to what having  IBD actually is like. The wide spectrum of symptoms, side effects and general wellbeing leads us down very individual paths. My path has been around since September of 2011. But I’m sure there was a few bricks being laid in the months and even years before that fateful month. My problems were […]

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Life Lately | The Big Move

The heat is on, so to speak. It is a week until I move. One week, a whole seven days and packing is hitting me like a brick. When did I accumulate so much stuff? It is giving me all the anxiety and stress I was hoping to avoid by being proactive these last couple weeks. But delays in finding a place to rent meant I had one week less to get sorted. Admittedly, it has been going well and I have every confidence that next weekend will go smoothly. But, let’s talk about what’s actually happening. For the first […]

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Advice: How to Solve Peristomal Skin Issues

If you’re a Stoma Owner, you’ve probably – at some point in time – had some sort of skin issue since your ostomy surgery. Below are potential issues, from most to least common. Identifying what has caused the problem is the best way to find a solution. 1. Change of stoma size This is important to note in the weeks after your surgery. As the intestine calms down, the size of your stoma goes down too. This means the template you use to cut your ostomy bag will change too. Recommended gap between stoma and your bag should be 1/8” […]

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The Last Year of My 20’s

  It’s here. The final year of me being in my twenties. The last couple years, I’ve hardly noticed the age I am. Mostly because my age hasn’t really been on my mind or if it has it because people don’t quite believe my actual age when I tell them. Being sick since I was 22 meant that my birthdays weren’t really celebrated like the used to be. I didn’t go out drinking or clubbing like I did in my university years, I felt too unwell to do that or I didn’t want to risk being sick afterwards. And as […]

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Learning to Not Sweat the Small Stuff

I am constantly reminded that my life is different. I look back in time, to years gone by and remember just what I’ve been through. Things are different. So much has changed. Not only is my own life different but I am different too. I’m learning to not let the small things bother me as much as they used to. I have had to accept this since I was diagnosed – a chronic illness forces you to take care of yourself, in ways you wouldn’t have before. You become more careful and calculated, abit cautious from keeping onto of your […]

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The 29th Year

I’ve eaten a lot of cake this weekend. And it was birthday cake too! And I’m sure it’s not the sugar high I’m on, but this has been one hell of a year. Despite being very aware of the fact that this is the last year of my twenties, I want to celebrate all the good – and the bad – things that have happened whilst I was twenty-eight. Hopefully, this is all in chronological order! Quick prelude: My Vedolizumab cycle had failed. I met my kick ass, adorable as hell surgeon. He advised a resection would be the best way to go forward. […]

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Life Lately | Getting a Health MOT

Guys, lets talk about looking after yourself. I know that this might be easy for me to say – couple of months into remission with my Crohn’s, preparing for a new and exciting job, coping well with my stoma – but looking after yourself is important. So important. Actively being present and finding out what works best for you. I am somewhat more able to do this now because I am not unwell. For me, this now means getting my Vitamin B12 and changing my contraceptive.   Since my first surgery, I’ve known I need to have my B12 checked. […]

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Meal Planning – April 10th

Jeez. I suck at this. It’s been a rollercoaster of a couple of weeks so I’ve just been eating when I can. I have been prepping but not being writing it down or up here. That’s gotta change. These next two weeks I am home alone so making most of my meals just for myself. I did a little shopping this weekend to get some fresh yummy things in but most things are already in the freezer or in the cupboard; ready to make some great meals! Here is this weeks plan; again just the dinner time meals: Monday: Dominos!  Tuesday: Bubble […]

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Changes, Welcomed Changes

I’ve always been known as someone who doesn’t do things by halves. Some examples? –          I have the most progressive disease my Gastroenterologist has seen. –          In a three-month period, my colon disintegrated but I didn’t present with a flare up of IBD! –          My GYN surgeon removed a tennis ball cyst off my ovary which should have been causing tons of problems, but wasn’t –          When I got sick, I was really sick; without much indication. See? Didn’t I tell you? Things for me come all at once or not at all. I am currently sat doing not much […]

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Speaking: Loud and Proud

Know what inspires me the most? Other patients. Other ostomy patients, other IBD patients. Those people who have a connection to me once I share my own journey. I met these people last week at a Coloplast Care day. I spoke about how I came to have my ostomy, my IBD history in brief and how life has been since surgery. I tried to follow my written document – you can read it here – but I ended up going with a flow of just my own words, right from the heart. Speaking in this way did make me unexpectedly tearful because even though I’ve been speaking […]

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