Day 19 -‘Unconditional Surrender’

Living with little Simon stoma

For the benefit of those who are about to, or are currently managing life with a stoma I thought I would provide an oversight into the routine of stoma management some 19 days post op.

The initial hysteria surrounding intake and output has diminished mainly through the benefit of gained experience, although a heightened sense of awareness is still the byword, and quite rightly so.

I find that the ‘buffer’ that a person ‘with a normal digestive system’ has is no longer a luxury that I share. By that I mean pre op if I were to go without anything substantial to eat for a whole day I would be pretty ‘hangry’ by sunset but overall still ‘operational’. With the stoma just going overnight without any food and minimal fluids means that by 8:30 in the morning I can hardly summon the energy to lift a spoon or traverse around the house. This is alleviated on eating porridge and a cup of tea, and swiftly followed by scrambled egg an hour later all bodily systems are up to snuff.

It is very common for stoma patients to regulate ‘the flow’ by relying on ‘Imodium’ (loperamide) this is not a failing but a necessary requirement. It is not uncommon for some patients to take 40 tablets a day. Thankfully I am managing to keep a steady output with 4 tablets a day, but this may vary dependent on the diet.

Similarly bouts of nausea and sickness are still present but the periodicity of these becomes less and less. I find this very odd indeed, as the same thoughts of food that on occasions make me crave it, in the next moment make me feel nauseous. For this I take Ondansetron which those familiar with chemotherapy will recognise as an effective anti sickness.

We are beginning to experiment with different foods to see what works and want doesn’t work, whilst jelly babies are nice they are not really a stable diet, and my panacea is that I will successfully eat a brussel sprout before February is out! . Mmmmmmm I can see that one ending in tears I really can, if little Simon blows off with the ‘bilges’ half full it will get very messy. C’mon Simon it’s not worth it just for a sprout, or is it…

The other surgery legacy that persists is the blood thinning drug ‘Clexane’, self injected every night into my thigh. This will continue for 28 days post op, again can’t say I’m over enamoured but needs must. Diabetics have to do this for a lot longer then I do, I feel for them. I am already running out of ‘virgin’ bits of leg that are not sore from the previous days stabbings. On the face of it the embolism risk I face is comparable with someone flying economy to Australasia, probably less now actually. If I box clever il keep some behind for my next long haul flight. Never be too careful


‘Wave the white flag’

After my recent ear bashing I today signed the ‘unconditional surrender’ affectingly bringing to an end any form of physical work activity at home.

I reluctantly agreed to surrender all tools, shovels, rakes, and garden implements, with the agreement that any breach of use would result in further denial of privileges.

No sooner was the instrument agreed to than family members assembled in the garden to complete the ‘soil project’ that was the catalyst to the hostilities.

Relegated to an observing role only I was positioned on a garden stool away from anything that could do any significant damage.

Like some fallen dictator I initially barked my command from the security of the garden stool, after a while it dawned on me that no one was listening, by now they were marching to the beat of their own drum. I was surplus to requirements.

Acknowledging defeat I gave in. I went inside and made cups of tea.

Exploiting a loophole in the wording of the agreement I decided that a ‘paintbrush’ was not a tool in the true intent of what could be constituted as,well a ‘tool’. I mean what damage could I possibly do myself with a paintbrush? It’s not pushing or pulling or staining is it?

Whilst the group congratulated themselves on the mornings work I quietly crept around them with my pain brush, and some wood preservative in a small paint kettle.

It was not unnoticed.

After 30 minutes of standing in the brilliant February sunshine gently applying wood preserver I was spent. Oh god someone come and rescue me, I wanted to lay down where I stood and sleep. Intuitively MrsC appeared, “enough now”

I didn’t need to reply. The settee was beconing.

As internally things begin to heal and settle the discomfort becomes more evident.

As in some act of defiance the internal lining of by abdomen that was punished with hot chemotherapy is beginning to regain its ‘sense of feeling’ , and its angry.

Organs that were manhandled out of position are gradually finding their way back to where they want to be, but not quietly, oh no, each one making its presence felt. All

All of this seems to drain energy at an exponential rate, a rate that cannot support pushing a paint brush… yet

For the moment I will be restricting my activity to watching those expending energy in the Winter Olympics. It’s safer

Previous

Day 18 – ‘Turning the air blue’

Next

Day 21 -‘Free to good home’

12 Comments

  1. Tracey HoneyC

    Simon I think the body is amazing – if it gets harmed through surgery it also needs to recover and the only way the body can let you know enough is enough is by making you aware that you are doing too much is either by making you feel pain or making you feel absolutely shattered – learn to listen to your body and you will heal and recover quicker 😄

    you are doing brilliantly and I know daytime TV is the most boring thing on earth but maybe you need to take up some hobby such as painting pictures or doing jigsaw puzzles (hard ones) to keep your mind active and at least you are resting !!

    Onwards and upwards 🌟🌟🌟 so proud of you – you’re going in the right direction xxxx

  2. Chris Field

    Bring on the sprout is what I say! Good to hear and see that your sense of humour is still as dodgy as ever………….

  3. Brilliànt Simon …. i was in exactly same place as you this time last year !! … trust me it get easier every day your amazing sense of humour will see you thŕough . . Maybe take up writing you could well be the next Booker Prize winner !! Bless you a d thank you for making us all chuckle !! Bring it on !!!

    • Simon

      Wendy, it’s nice to know somebody else has gone through it. It’s frustrating as things just don’t seem to me improving very fast. Small steps I suppose

  4. Gill

    Excellent blog Simon, but how come I can’t find it on WordPress to follow? I’m Stage 4 incurable Colon cancer and haven’t been offered any surgery as my disease is too widespread so hearing about your experiences with Little Simon is very informative. Here’s hoping for a speedy recovery for you. Gill xx

    • Simon

      Hi Gill, don’t know why it’s not on WordPress? I’m not an expert on that sort of thing . I hope that your treatment gives you some quality of life, I know how difficult that can be. Warmest wishes, Simon x

      • Gill

        Thanks Simon. I do have a WordPress blog myself, but it’s a mystery to me how it works. Think I’ve got you ‘followed’ now. Luckily for me, 20 months in, my quality of life is good in spite of fortnightly chemo and I don’t have any pain. Best wishes, Gill x (spinachinfusions is my blog)

  5. Pamela Miles-watson

    I am 22 years on with Fred my stoma. It does get better. I find Tidings magazine from colostomy association interesting . Good luck !

    • Simon

      Thanks Pamela, at the moment ‘better’ seems a long way off! It it sounds like you and ‘Fred’ have made your peace.

  6. Brenda Topham

    Loved reading this, as this was me 18 months ago, and must say I’m pleased that you’ve given your stoma a name. Called mine Stavros after someone I knew in Cyprus ! Who was always there butmvery, very annoying and had to be dealt with. I find a sense of humour is the best way to deal with 5he whole situation, and I’m 84 yrs young ! The diet still suprises me now and again, and what suits me one day, hates me the next, but I carry on regardless, sometimes eating things I know I shouldn’t, but I get over it.
    I live aline but talk to my dog, who is now very up to date on all things stoma concerned.
    Keep up the good work !

    • Simon

      Thanks Brenda, I have found the same regarding the diet. All still very strange at present . Well don’t though , 84 years young , Sterling effort!

Leave a Reply to Wendy Chapman Cancel reply

Powered by WordPress - Theme by Anders Norén & tweaked by Gupchoice