Being home after stoma surgery – it takes some getting used to!


I’ve finally come home, but it all still feels a little bit strange. The quietness is eerie; I’ve gone from a world of bleeping machines, screaming and constant chatter, to an alien land where there can literally be no noise for hours. And when there is I can more or less control it.

I’ve been home for two days now and I still can’t really believe I’ve escaped hospital. Yesterday morning I woke up and had a scary few seconds where I didn’t know where I was. To say I was confused was an understatement. I expected to wake up to a shake from a tired looking nurse prodding me awake to test my BP and temperature, instead I woke up clutching my teddy in my beautiful butterfly decorated room to the sound of birds singing. Yes I was in pain, but it was blissful to be in my own bed and not to be forcefully woken and thrown out of bed and made to perch on an oversized chair in my nightie.

Nothing compares to being in your own bed. Out of everything I have longed for during my endless weeks in hospital over the past 13 years it has always been my bed. To me it is the symbol of freedom, comfort and security, and when I’m in a hospital bed with just a flimsy sheet to cover me at night I feel vulnerable and anxious. On the first night I got home my duvet was so heavy it almost hurt. I’m struggling to lift the weight of it and having to get my boyfriend to literally tuck me in at night, teddy and all. But once I’m under there I feel snug as a bug, safe and secure. And what’s even better I know (well hopefully) I won’t be woken in a few hours by someone screaming bloody murder or being sick or to check my vitals for the 10th time.

I’m not sleeping through the night, which is understandable when your used to being woken every couple of hours through screaming, pain and sleeping in a room full of strangers. I feel safe, apart from the cute ‘I love you balloon’ that scared me half to death by making a weird rustling sound as it scraped across the ceiling, embarrassingly I had to get Andy to come and take it into a different room. But its lovely to know my boyfriend is in the room next door and a trip to the bathroom doesn’t involve traipsing down a corridor and risking falling over rows of stinking bed pans.

Ok everything isn’t perfect. I’ve still got my drain in which is becoming a little tiresome and sore. I’m struggling to wear trousers (even my trakkies) over the tube and bag, and my scar, while extremely neat and surprisingly faint, sends spasms through my abdomen when I try to sit up and down. I’m tired, starting to feel bored and long to get my fitness back up so I can at least walk to town. But I love snuggling up on the sofa with my boyfriend, spending time with my parents and being able to sort of do what I want, without everything being scheduled by a nursing team.

But you can’t run before you can walk, and compared to my last operation my progress is staggering. Today I managed to get into the shower on my own (with the help of a little step), I’m able to eat a little more and make my own juice (it’s the little things). I’m shaky but managing steps and sitting down is starting to feel a little less someone is trying to stick a red-hot poker up my arse – which is never a pleasant feeling!

Yesterday the district nurse came. We (that’s me, mum and dad) waited around all day for her to come, before I found out my doctors hadn’t told them I was under their care. Typical. But when she finally arrived she quickly flushed my pelvic drain, changed my wound dressing – which is still slightly discharging – and, after I felt something sharp poking out of my bum, discovered two deeply embedded stitches which the hospital nurse hadn’t removed. That was a painful and humiliating experience, with the lovely nurse pretty much sticking her face up my bum and digging around in my skin for the blue rebels while I lay in a self-conscious foetal position begging for it to be over. As she yanked them out, pulling out several pubes, I clenched my teeth and tried to stay as still as possible. I have never been so relieved for something to be over!

Anyway, I’m sat in the flat waiting for my parents to arrive for another day on my step to recovery. I’m just about to tuck into my not so yummy ensure drink and start tackling my French, which I’m determined to be able to speak basic sentences by the time I return to work.

I hope everyone is well and happy and ready for Easter. My only problem now is trying to get a Mother’s Day card and gift without my mum noticing! Hard when you can’t leave the house and you’ve missed the delivery date.

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The nerves set in: My emotional week before my ostomy op


For the first time I have really broken down. After years of holding in emotion, grief appears to have suddenly hit me like a brick wall. It appears to have come out of nowhere and now the gates have opened, rather like this year’s onslaught of food waters, I just can’t seem to get the tears to stop.

just before the tears

just before the tears

I just don’t understand what’s happened to me. A month ago my surgery to make my ileostomy permanent couldn’t come soon enough. I was literally begging to be taken into theatre. Now the thought makes me feel sick.

Perhaps it’s just nerves. Perhaps I’m starting to feel like a blushing bride the night before her wedding. But now I’m starting to worry it’s more than just nerves. I’m starting to think I’m rushing into this and I’m simply too unprepared to have this operation. Perhaps I should have considered the other options, such as a J-pouch, instead of rushing in head-on to the full-blown forever stoma.

I guess the big D – doubt – has started to set in.

IMG_3347Ever since I returned from London I seem to have lost the ability to be happy. I can’t seem to think a positive thought. Every joyful moment seems to flit past me, racing away from me like a bad smell. It’s a shame as I’m really trying to enjoy my last few days of freedom. I think I’m feeling a little depressed, but I’m not sure if it’s the prospect of the long road of recovery ahead of me in the next few weeks, my frustration over my career, or the fear of going under the knife again which is forcing me to plaster this fake smile on my face.

Yesterday I was just doddering along getting on with my perfectly normal weekend when I suddenly broke down. I looked in the mirror and realised that this was it, this was what I was going to look like forever. And I just buckled. It was suddenly as if all my problems – concerns about going under the knife, fear of the pain, the time off work, the recovery – bubbled  to the surface. I wept and wept. I thought about my life and everything that had happened and I just couldn’t stop crying. I felt like the tears would never stop.

I don’t understand what’s happened. Even sitting at work today I felt my ostomy start to fill up and I felt the overwhelming urge to bury my face in my hands and start weeping. I held it in until I left work, but the moment I got out the door I just broke down.

This new wave of emotional vulnerability has totally flummoxed me. I’m a naturally emotional person, but I don’t think I was even this upset when I needed the first operation a year ago. I was frightened (actually petrified), upset, but I wasn’t a blithering wreck, but there again maybe I was just too weak and helpless by then to even have the strength to think about it let alone cry.

I don't want to go this thin again

I don’t want to go this thin again

This past year has been one of the best of my life. I have felt healthier, fitter, more energised, and had more success than I dreamed possible. Yes there have been a lot of challenges, and, yes it hasn’t been entirely pain-free or easy, but it has been better.

I’m surprised I suddenly feel so bothered about the way my ostomy makes me look. So far I think I’ve accepted my new body with open arms. I have welcomed my scars, bag and even (to some extent) come to terms with my horrible fistula. I admit I still struggle with the N word and haven’t worn a bikini in public, but I know everything will look so much better when I don’t have a fistula bag filled with blood and mucus leaking everywhere every couple of hours.

I know I’m still beautiful and I know that I should be proud of my life saving bag. But something about these past few days has made me think this is not my life should be like. It’s made me wonder if I will come to regret not trying other options in the next few years, decades etc. I’ve suddenly realised that I will still have this bag when I’m 80 – if I live that long.

I guess it’s all becoming a little bit real, and I need some support. The excitement of working at the Mirror is over now and I have too much time to think, worry and frighten myself out of having the operation. I know I have to have this operation, but I worry that this time the hospital hasn’t done me any favours. Before it was my only option, without the operation I would probably now be dead. This time they left me cold turkey and who knows if I could have ‘survived’ with a shed load of medication to try and bring my inflamed rectal stump back under control.

And NOT THIS AGAIN EITHER

And NOT THIS AGAIN EITHER

I know this is my chance and I need to push my worries aside, but will I regret this choice in the future. Will I wish I had tried the other option first. A permanent ostomy, having my back passage sewed-up, it all seems so final, so irreversible – I suppose that’s because it is.

So I now have nine days to worry and bite my finger nails down to the cuticle.

Part of me wishes I hadn’t given up drinking yet.

 

Surgery date looms – just over a month until my ostomy become permanent


Tomorrow I’ve got my pre assessment for my surgery and to tell you the truth I’m terrified. It’s been almost nine months since I had my first ever operation and to say last time I wasn’t worried would be lying. I avoided surgery for almost 13 years through misinformation, hope and fear, but when I realised I had no other option but having an ostomy, I didn’t look back….I grabbed the surgery with both hands knowing that anything was better than living life looking through permanent black spots of agonising pain and wanting to die.

Last time was an emergency, I was too weak to really understand what was going on. Yes I dreaded it, and yes I was afraid. The week before the operation I was frightened but I had resigned myself to a life with a permanent ostomy. I thought that was the only option, so when I woke up with a temporary ostomy I was angry. I’m still angry. Perhaps that sounds unreasonable, but I told my surgeon if there was any sign of colitis in my rectum they should remove it all once and for all – it was bad, it’s still bad and he left it in.

I know there are all sorts of reasons for that, but nine months down the line I’m not well, I wouldn’t describe myself as ill either, but I’m living with the consequences of my surgeon choosing to leave that rectal stump in. My fistula causes ripping pain through my stomach (nothing like when my colitis was bad), squirts out foul mucus and bags full of blood and leaks causing my skin to blister and bleed. I still struggle with the bathroom (but not half was much as before) and infections. And I’ve just about had enough.

But despite currently having two bags, it’s not all bad news. Since I got Winnie (Stoma) I’ve had the taste of what life could be like without a colon. Yes, there are good and bad things and it’s not been the easiest thing in the world to get used to, in fact it’s been tough and at times upsetting, but life has never been better. Most days I barely think about my ostomy, yes the same can’t be said about my fistula, but most of the time my ostomy gives me absolutely no problems. And if all it takes is for me to have that forever to have a life free from fear and pain and torment I’ll give it a go thank you very much.

I guess I’m not worried about having my ostomy made permanent, I’m frightened of the surgery, but I’m even more frightened of the recovery. Last time a lot of things went badly wrong, there were a lot of mistakes made in my aftercare and a lot of things happened which I have made an official complaint about. It’s sounds wrong but I no longer trust the hospital who treat me, I have lost confidence in their ability to help me recover. These are not unfounded fears I have kept to myself, they are based on real things that happened; my stomach bursting open; my epidural placed wrongly causing my leg to feel paralysed; being given milk for breakfast constantly despite being lactose intolerant; food going missing; pain killers not being administered; being left in dirty clothes – the list goes on.

So I’m frightened. I know I have to have this operation if I want to get on with my life. Despite everything I still trust my surgeon with my life. I know I have to face the surgeons if I want a life free from colitis. I just hope I have the strength to do it.