Seems like only yesterday I was counting backwards from four to be put under for my Proctectomy.
But here we are, fourteen days post op and it’s been a weird and wonderful ride.
I spent eight days on the ward, learning to manage my pain and my wounds. I am very grateful for my stoma being created at a different time, I doubt I would have been so able to cope with no butt and a stoma in one fail swoop. That being said, managing wounds is tough going anyway, even more so when they are inaccessible to my own eyes.
During my admission I learnt a heck of alot. Some brief highlights:
- My operation took twice as long due to adhesion around my stoma and pelvis.
- I had alot of anti sickness in recovery and still ended up being violently sick. Not a perfect system but hey ho.
- My epidural was really really good. So good that it started to move up my spine towards my diaphragm. I had several late night consults with Acute Pain Team to adjust my drip so that I moved away from the risk of needing to be intubated and ventilated in ICU.
- Having your drains pulled out is uncomfortable at best, horrendous at worse.
- I woken up with a pelvic drain, which was continuing to exude some blood after three days. When that was pulled I could feel every single thing inside of me.
- I had to have my butt wound opened slightly – two stitches worth – to drain an infection in my buttock, where the drain had laid.
- Oxycodene is a god send. It worked wondered to manage my pain.
- ER – Enhanced Recovery – was hard. PT after my op was difficult too. I had issues with my BP and heart rate. I was on a heart monitor for the first three days and it was hellish.
- You get used to people looking at your new Barbie butt really quickly.
- I still have the utmost respect for nurses on a busy surgical ward – they are gems and I was treated brilliantly.
Recovery, like surgery, is never the same for any two people. And each surgery is different, you react differently too. I had a good mental focus going into this surgery but post op is never straight forward, nothing happens like the book says it will. I did manage to keep a very simple diary for these times – Oxycodene has robbed me on some ability to think back and create content.
Diary entries are in bold italic and public tweets in regular font.
DAY ONE – MARCH 29TH
DAY TWO – MARCH 30TH
Day Two. Epidural came down at lunchtime, along with the butt drain and was redressed. On Oramorph and Tramadol to keep pain okay but I’m sore and uncomfortable more than in pain.
id make it out of bed today and yesterday but with some many things I’m hooked up to it’s better to wait for a longer trial out of bed tomorrow. Heading in the right direction!
Epidural has MOST DEFINITELY worn off. Oh this is interesting
DAY THREE – MARCH 31ST
Isn’t it nice and weird at the same time when your stoma wakes up properly after surgery?!
Day Three. Lots of ups and downs today. Lost my cath so trying to pee for the first time is frustrating and painful. Thinking of the positives because it feels a whole lot negative right now
Jeez whiz, that first time you actually go to the loo without being hooked up to EVERYTHING under sun is so stressful but so good afterwards
DAY FOUR – APRIL 1ST
Monday here again! Dressed in my own clothes, swaggering around the ward getting my joints moving and feeling more used to my wounds.
Just been for a random chest Xray after my bad heart issues on Friday and Saturday. Without a dressing on my butt, MY GOD it was AWFUL sitting on a moving chair. *deep breathing to the max*
This morning I asked my surgeon when he rounded on me, how much would everything hurt for? Abit vague – forgive me, meds were just kicking in – but his answer was class: “Trust yourself and your body. That’s the best measure.” For someone how has now had all *fingers crossed, knock on wood* the diseased bowel removed, my body should get back to being ‘normal’. That’s something I would have once scoffed at but you know what, yes, let’s let me trust my body. It is wonderful and capable. Surgery, for me, always alters my perspective abit. It’s sometimes the people you encounter, the experiences you have but what’s been most changed is mutual respect. Not sure if its a age thing but I greatly admire anyone medical I encounter on my IBD journey. It ain’t easy.
Visiting started at 6pm. My stoma has been just farting away for the last ten minutes. Beautiful timing.
DAY FIVE – APRIL 2ND
Day Five. Bad day. Low day. So much pain, not enough pain relief. Feeling grumpy and sore and sorry for myself. Everything is just alot atm. This no butt stuff is HARD.
This had admission has been hard. Not because its been physically painful. I’ve had to watch heartbreaking things happen to others.
In a way I am glad I am young and ill because I can know when something is wrong. For those who are alot older, its not always so easy. Lots of barriers. And that can make it too late. Too late isn’t good enough.
I’ve had my fair share of shite moments this time around and panicked but I’ve been able to apply my previous experiences and my knowledge of my GAD to help ease myself back to my norm.
Any advice on an alternative to Tramadol re: side effect of drowsiness? I feel like a ZOMBIE and I’ve only had 500mgs in 48hr
Always a good time when your iPhone torch comes in handy for checking your butt wound.
DAY SIX – APRIL 3RD
My morning has been eventful. I’ve had three doses of oxycodone so my surgeons reg can open my butt wound to let the infection drain out. It’s now packed, dressed and reassessed in the morning. If it needs more doing to it, I’ll go down to theatre and having it looked at under GA – it is so unbelievably painful. Everyone hopes for a simple and straightforward operation and recovery. But sometimes, things just happen. That is me. And whilst it’s upsetting to have an open wound its better than being at home whilst it developed to be more serious and deadly.
Last night the pain was unbearable. Ben left and I tried the toilet and a walk and I could only shuffle without pain.
They gave me my normal gabapentin and Amitriptyline but it did nothing. And Oramorph, still nothing.
I had a surgeon reg come and assessment, checked out my butt wound and saw it was discharging some gloop. He got that removed, dressed it and gave me Oxycodone.
This morning the reg has looked again and it need more opening up so it can drain. The pain can be described as a pushing pressure feeling like needing a poo. Obviously I haven’t done that for almost three years ago and five days ago I had my hole sown up so nothing was coming out there.
He opened two stitches whilst I was under three doses of Oxycodone and packed the wound. It’s now been dressed and needs to be looked at again tomorrow to ensure it is draining sufficiently. If not, I’ll go to theatre and have it done under GA. not ideal, really unsettlingly and made me cry alot.
But since then, I feel better abit. Been able to walk around without so much uncomfortable pressure, used the bathroom, changed my bag and got myself clean.
Today I plan on resting. The Oxycodone is good and strong without being super drowsy or disorienting.
Super glad i was here not at home when this happened.
Been using the Coloplast Flex two piece bag system whilst in hospital and it has been brilliantly suited to my needs – comfortable, familiar and easy to use.
DAY SEVEN – APRIL 4TH
Day Seven. Sleep was abit odd last night as I’d thought my butt wound was getting worse. Been redressed and feels much better. Even had my stoma checked out and some new products used. Perfect timing; so we can solve the last time bit of broken skin. Abdomen is still quite swollen but normal for 1 week post op. Now to just relax, walk around abit and get my body healing.
Today has been just miserable. I felt well enough to go home this morning but have to wait until tomorrow as they wanted one more day of my wound being dressed properly. I’m fed up of not being able to sit on my butt properly but my pain definitely stops that. My thighs hurt from the new pressure, the left is still recovering from the numbness post epidural and I’ve had three Heparin injections in one. So whilst I am grateful for my surgery and I see all the good in it and I’ve been really positive and a trooper with so much of it, IT SUCKS RIGHT NOW. OH. And I’m so sick of people MOANING and being RUDE to the staff here.
We have a student nurse on the night shift today. Head nurse wanted me to do abit of info about Crohn’s and my stoma. That turned my frown up side down.
DAY EIGHT – APRIL 5TH
Day Eight. Hopeful to be calling this “DISCHARGE DAY” soon. The first part of the surgical glue on my wound is coming away and the scar is SO DAMN NEAT. In awe; surgeon got skills
Dealing with a small amount of abdominal pain after eating. Let’s hope it’s nothing sinister and it subsides.
DISCHARGE confirmed: home this afternoon!
LEFT THE HOSPITAL AND HEADING HOME!
It took almost FOUR hours to get the dressing on my butt wound changed. Only then would my pharmacy meds – Oxycodone – be sorted. They seemed to “loose” them until 5pm and I was discharged within a couple minutes. They did give me a liquid dose of Oxy as I was waiting so I am sitting comfortably and happily on the sofa at home. Now to rest over the weekend and get my first GP appointment for a dressing change! But thank you to all those who have been talking to me these last week or so. It has been great to keep in touch and share bits from my surgery admission
Discharged home today.
Feels weird but I know I can cope.
Last night I had massive cry and it was very overwhelmingly cathartic. I was fed up and lonely and wondered what on earth I’d imagined post op to be with a butt wound.
I’m not disappointed in what’s happened, its another thing to cope with and I can do that but its just painful. And it wont go away for a while. But I feel on the road to being better. Already I’ve stopped one medication and let’s hope to come down from weaning off Oxycodone isn’t too terrible.
But overall, positive with a smatter of negative
Things to notice about returning home after hospital < a thread > 1. MY GOSH walking more than round the ward is exhausting. 2. Our sofa is abit lower than I remember, ouch. 3. It’s weird sitting down instead of lying on a bed. I feel all out of whack. 4. Coming down stairs is alot harder than going up them. 5. I can only shuffle at the moment which means the cat gets under my feet. 6. I still find it hard to eat much at a time. 7. Not used to sleeping on a proper mattress and under a duvet. 8. Still not 100% all the operation air is out of my system! 9. Fresh laundry is the best smell EVER.
Holy crap on a cracker is my midline incision hurt when I’m lying on my left side. Can feel my muscles aching. Oh boy!
DAY NINE – APRIL 6TH
Surgery has definitely done some good to my stoma. This is probably my favourite thing about this whole process. Not even mad. Nope.
Have had two big naps today. Now I’m back in bed for actual sleep. Not sure I’ll achieve much though. Tough knowing this is it for a while, at least.
DAY TEN – APRIL 7TH
Woken up to my dressing coming almost full away from me, so quick shower and a cheeky at home change by myself of the dressing. It’s only painful in a couple places but mostly just irritatingly itchy. YAY FOR HEALING
My surgeon’s wisdom of “your body will tell you where the pain is” is utterly on point. As my confidence grows to get back to normal, I find certain mechanisms painful and others just abit sore. HEALING IS A WONDERFUL UNDER APPRECIATED THING.
Today’s goal is the find an comfortable position and EMBRACE it by not moving
Finding it so hard this evening to get comfortable. My wounds don’t hurt but I think my muscles do and I can’t relax them as easily as I would want to. UGH UGH UGHHHH
DAY ELEVEN – APRIL 8TH
Morning! First task of the day done! Isn’t *fun* explaining a perianal wound a doctor receptionist eh?
Second task – organising this week’s meds with a reducing dose of Oxycodone – also done!
Had the most snotty and disrespectful district nurse call me back and refuse to do a house visit to check my perianal wound based solo on the fact I am a) 30 years old and not elderly and b) shouldn’t be house bound. It must take too long to read the discharge notes from the hospital and actually then talk to me about my medical history. How fucking rude. So I called the hospital and spoke to the senior charge nurse who is speaking to my consultant surgeon. If I could see my own butt and know it was healing from looking, I would but unfortunately I can not bend that way and need help.
I checked out my midline incision wound this morning. The top is healing very well and so is the visible part past my bellybutton. Beyond that … it’s abit messy. Surgical glue has shifted with my movement and it’s all abit, gross, if I’m honest. But it’s Day Eleven since surgery and so far, no openings. Thankful for that alone.
Was able to see abit more of my scar whilst changing my stoma bag a little while ago. Surgeon went alot further down than I thought. It was glued to high heaven and now the glue is coming away, it hurts and is making me worry. It’s moist and abit oozy.Oozy from being moist? Moist from being oozy? Is this bad or good? I dunno but I cleaned it and repositioned myself. Time for a nap. I’m SHATTERED. I didn’t nap today yet can’t oddly sleep at night. Brain feels too wired but in a senseless way. Weird.
DAY TWELVE – APRIL 9TH
Not sure what’s happened but it feels like my butt wound isn’t producing much today. Let’s hope this a good, strong step in the right direction.
I caved and came back to bed. Got the cat with me and my iPad. Finding it so hard to find any way of “sitting” downstairs on the sofa that doesn’t make me worry about making my wound worse.
I’m getting to my wits end with trying to get a healthcare professional to check my butt wound and change my dressing. Second time in four days my partner has had to do it for me – he’s in the middle of making a complaint to the NHS for poor aftercare.
DAY THIRTEEN – APRIL 10TH
Morning! On hold / waiting in the queue for the GP appointment line ti answer, drinking a cuppa. Had just a crap night of trying to get comfortable with my butt dressing. Sick of this now. BOOM, into see a nurse at 10am
Just got home from the GP practice for my appointment for my wound checks with the nurse. << A thread >>
She was lovely and checked my pelvic drain site and it just needs a breathable dressing to heal. Midline incision is abit oozy about my bikini line so it was swabbed for infection, cleaned and redressed.My perianal wound is oozy and weepy. The Biatain Silicone dressed we removed was blooded BUT this is good news! No yellow discharge but she did push some stuff out of the cut from last week. She has to redressed with some other dressings – of which she has sent me home with, just in case! – and is happy it’s not infected. It will take a while to heal but she will continue to care for me. SO SO HAPPY WITH THIS OUTCOME. I also have appointments every day until next Tuesday – my birthday but meh – so it’s kept an eye on. She really reassured me that this – in its current status – is fine and part of the healing. I’m now calm and relaxed. I am still waiting to see the outcome of the complaint we logged last night with our NHS Trust overseeing the Urgent Care Centre. And I still have to talk to my surgeons secretary to voice my concerns. This is below par aftercare and it shouldn’t happen, FULL STOP.
The final bit of surgical glue has come off my midline incision and I am sooooo relieved none of it has opened up. WINNING!
Now that my dressing is finally done correctly, all I can feel is a dull constant throb and a weird itching sensation. Healing vibes?
DAY FOURTEEN – APRIL 11TH
I am two weeks post op today! Contemplating some writing later but I’ve already changed my dressing and stoma bag, I’m spent.
I haven’t been sitting on my wound, but more on my left or right side to avoid further injury or complications. HOWEVER, I’m getting sore from these two positions – is this normal? Feels like a numb bum all the time.
Just had a random knock at the door and its the pharmacy delivering my pain meds! Was not expecting it but so glad it has been because I’m knackered today and needed more Gabapentin as I wean off Oxycodone.
Succumbed and took some liquid Oxycodone. So glad to have that as well as my tablets. It’s been a increasing pain symptom kind of day.Which poses a nice thought of what low and high symptom days look and feel like. I can’t figure of where the pain is coming from though. It’s sort of abdomen, wound, buttock adjacent.
Was abit of a blah day.
Did a dressing and stoma bag change this morning. Wound was oozy but it was only blood no discharge. Got this checked this evening and its fine. Less of a packing feeling and its on a good road now.
Stoma has felt tender and bag didn’t stick well so added tape. Didn’t leave barrier to dry long enough.
Had a afternoon nap with the cat. Felt better but not sure why I needed a nap. No painkillers today until this evening – YAY. SO PROUD.
Wanted to write today – two weeks post op – but couldn’t face my laptop. Will try again tomorrow after my dressing change.
It’s really interesting to see my thoughts looking back at these last fourteen days.
Before this operation, I sort of promised myself that I would keep it real and honest on my social media and here, through writing. And whilst my experience is just one version of events that happening during and after a Proctectomy, I want to strongly highlight that these are my own experiences and should not be considered the ‘norm’ or ‘average’. With any surgery there comes individual risk, something which should be discussed by a medical professional – ideally a surgeon who has a reputation for successful cases – before consenting. Your own medical history and queries are vital to your own recovery and treatment.
In two weeks, I’ll speak again how things have been going as we enter into a month post op. It is crazy when you think about how quickly time can pass, but how taking it day to day can sometimes feel so long. Either way, it’s an adventure. Part of living with a chronic illness, I guess.
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram