Thursday 26th November: National Cake Day 2020 (USA) – Why my diet is a piece of cake compared to before my stoma.

My 18th Birthday – On a high dose of steroids

Nausea, pain, diarrhoea were three of my frequent Crohn’s symptoms which led me to having no appetite for most of my life before my stoma, aged 19. Before my diagnosis, which was around the age of 7, my parents first though I was being picky when I would be repeatedly off with my food, play around with it and not just want to it, but feel like I was unable. Obviously, they had no idea what was actually going on inside at that point and neither did I. I don’t have the most detailed memory of the early days of my diagnosis but some things I do remember really vividly.

Why the dinner table was a place I grew to fear

Both before and after my diagnosis, I didn’t look forward to sitting round the table for my evening meal. At the points where I struggled most, being sat there for two or three hours seemed to become a regular occurrence, whilst my parents pleaded with me to eat as my weight was dropping off me rapidly. I remember one time where it took me an hour and a half to even attempt getting half way through a chicken salad sandwich and every mouthful felt like a marathon of chewing, feeling sick and actually bringing my food back up into my mouth as I gagged at the reality of food. It was such a confusing and awful time for both myself and my parents, particularly before we had no clue what was going on.

After my diagnosis and when trying to manage my flare-ups, I remember over the years that my Dad would often stay sat with me at the table to talk to me about anything and everything because it was often when I was distracted that I would find eating most tolerable. I even had my meals in front of the TV when it was really bad. Again, to try and provide a distraction from eating.

The liquid diet

There were a number of times from aged 7 to moving up to the adult clinic at 17 where I was put on a liquid diet (or an elemental diet as it was called). The aim of this was to give my bowel rest and minimal work to do from digesting food, often when I was within my worst flare-ups and couldn’t tolerate food. I repeatedly lost weight and struggled to put it back on and the supplement drinks were designed to help me get some of that weight back. That was the idea anyway. I had developed such a bad relationship with food & drink that I often couldn’t bring myself to drink all of the drinks or often even make a considerable start at one from the fear and usually reality of stomach pain & feeling incredibly sick.

Image credit: http://nsnlebanon.com/

How I managed to swerve being fed by a tube (a Nasogastric (NG) tube), I’ll never know. A lot of my days at secondary school were planned around making various trips to “health point” through feeling poorly and having to take time out my day to sit and drink the supplements. I often felt faint, weak and extremely sleepy in lessons unable to concentrate and developed a fear of fainting in the classroom which escalated my anxiety surrounding my condition at school. I spent time in hospital throughout my childhood & had a considerable amount of time off. However, I enjoyed learning & did really well in my exams. I also did great at college in the couple of years before stoma surgery.

Getting acquainted post stoma-surgery

One of the things I was looking forward to the most about getting my ileostomy was hopefully being able to move away from hating food and to one day like it.

After surgery, I did struggle with getting back an appetite for a few weeks, more so than I’d hoped for. I found myself scared of eating because of my long-standing experience with Crohn’s and my stomach was so tiny from not holding much for years that I soon became full and felt nauseous. I was also worried about giving myself a blockage and became even more scared of being sick (I have always had a severe phobia with this) after being sick for the first few days after my surgery. Having such a big operation also left me feeling fragile, bruised and I honestly didn’t even feel like I had the energy to eat a meal in the early days of my recovery.

Leaving hospital post-surgery, weighing around 5 stone

The first main meal I ate after my surgery was a jacket potato (with the skin on) and cheese. Looking back now I realise how much of a stupid move that was, although I knew no better, and nobody had advised me otherwise. I remember eating that meal with so much trepidation, sat in wait for the stomach pain to set in, but it never came. The feeling was indescribable. I suddenly had a glimmer of hope with food that I’d never had before.

My bowel went to sleep

My stoma struggled to “wake up” post-surgery and I developed an ileus, where the bowel is temporarily paralysed. This is common after stoma surgery, but I didn’t know this at the time. Eating the jacket potato didn’t do myself any favours either with the skin being especially tougher to digest. I was severely sick for a few days and in that time, having the fear that I already had of being sick, combined with the pain from having my stomach cut open, was hands down the hardest thing about recovery. My stomach would lurch, and it felt like somebody was stabbing me in my core every time I sneezed, coughed or threw up. The nurses advised me to roll up a pillow or item of clothing and gently hold it against my stomach when these things happened. I can’t say it really helped with the pain though, but I was irritated, in a bit of a delirious state from all the painkillers I was on and I was also very desperate to be put out of my misery.

Fast forward to today. Healthier & weighing around 8 stone.

In days two to four after my surgery, I begged repeatedly to die. Day one had seemed extremely easy considering I’d just had major surgery and been hours from death and I felt the few days that followed this took away that hope I’d started to develop. I remember the nurses saying to me that that was often the way it went in recovery as the diseased parts that had been making me feel so rotten had been taken away, so day one would often seem almost too good, followed by some tough days. Everyone’s recovery is different though and just as with living with IBD, there is no “one size fits all” or things that will happen to you just because they happened to me.

Two steps forward and one back

Bad days can still happen. This was a few weeks ago.

If I could give you one piece of advice for stoma surgery and recovery, it would be to take one day at a time and listen to your body. Recovery was very much a case of two steps forward and one back for me for the first few months, but it was also an eye-opening and happy time as some of the things that had always been dreams such as leaving the house without pooing myself could actually turn into a reality.

I gave myself a blockage a few weeks after surgery, which thankfully I managed at home, which made me sick and feel really ill. This was down to me going into overdrive with food excitement and binging one evening on what felt like everything from Tesco’s. From mini savoury pastries to Twiglets, sweets to fresh jam and cream doughnuts all in one sitting, I really didn’t play it safe and I paid the price.

Looking back, I’d have reminded myself to try new things one at a time, little and often and to chew, chew, chew.

My diet now

I absolutely love food now. I still do get periods where I lose my appetite, even when I aren’t flaring but generally, I love food and being able to try so many new things and actually enjoy them. I’m more of a savoury than sweet person most of the time but I am partial to a slice of cake! With it being Cake Day, I guess that is pretty apt!

There are still certain foods I have to avoid if I don’t want any problems such as leafy vegetables, foods with high fibre and/or tough skins, some fruit & nuts, pulses and lentils. I do however blend vegetables and fruit into soup and smoothies which is a way to get around this. Sometimes, I do take some small risks & have small amounts of foods like baked beans which pose problems in larger quantities. My stoma often likes to puzzle me and revolt against food that would normally be okay for me for often an unknown reason too, but we fight on!

Even after nine years of having an ileostomy, I still learn new things whether that be with food or otherwise.

It’s thanks to my stoma however that I now have a good relationship with food. Now, where’s that piece of cake?!