Four weeks, twenty-eight days.
Admittedly, I did write my last update – you can read it here – abit later than I’d originally planned but still, to think it’s been a month since surgery is just mind blowing.
During these last two weeks I learnt a heck of alot more! Some brief highlights:
- I got myself off the Oxycodene after fourteen days. Big win moment.
- I was sleeping in a more regular pattern and could restart my usual morning routine.
- I found a way to shower and wash my hair without causing much grief to my wound!
- We did more dressing changes at home, I even managed a couple by myself.
- Nothing will break you more than hearing you have an infection in your wound.
- Antibiotics are awful when they are wrong but better when they are right.
- My consultant surgeon is just amazing. I can not fault his care or his due diligence to me as a patient, even after his work of operating on me is done.
- I have a favourite nurse at my GP practice. I actually adore her.
- I have new respect and admiration for my GP practice – I’ve had daily appointments for almost three weeks without issues.
- Medical tech – including my Biatain Silicone dressings and the Inadine – continues to blows me away.
I’ve continued the diary entries in my journal to keep myself reflecting on the good and some of the bad days.
Diary entries are in bold italic and public tweets in regular font.
DAY FIFTEEN – APRIL 12TH
So proud of the fact I’ve been able to settle back down into my morning routine this past week since coming home from hospital. ONE BIG FOR ME AND MY BODY!
On my way to the GP practice for today’s wound check. Going to ask about healing and showering today. It’s super difficult when you need to keep it clean and dry…
Another day of dressing changes done. Time for home and some rest. Everything is knackering to do but it’s getting easier every single day.
I am sore today. My midline incision is painful but not oozy or yucky. And as ‘normal’ my butt hurts abit. Taken some Oxycodone and finding a comfortable position for the afternoon.
Reminding that today three years ago I got my surgery date for my first op. Here I sit, after three ops with three different surgeons under two teams later, wiser and stronger albeit colon-less. Surgery is NOT a last option and should not be feared but discussed honestly.
DAY SIXTEEN – APRIL 13TH
Successful had a shower and did a dressing change by myself. HAPPY SATURDAY!
Three dressing changes. One bag change.
Butt is very sore and itchy. It’s so hard to not scratch it because it’ll be the stitches doing there work.
Stoma is sore and bleeding as before surgery. No idea what to do so just doing my bag changes as normal as appointment Monday morning. Applied todays bag at really bad angle so it’s probably not in the right spot to heal. Ugh.
Frustrated that this is life for the moment and foreseeable future. It’s getting me down today because its been an exhausting day as I did too much.
DAY SEVENTEEN – APRIL 14TH
Plans today are very chilled. Dressing change at the GP Hub at noon then food shopping for Sunday lunch!
Had my wound ‘lightly’ packed as the cavity is still oozy and producing yucky gunk. It’s feeling abit weird tbh. Hope this doesn’t mean it takes much longer than expected to heal.
Good thing about packing? Less leakage
Got a Monday morning appointment at the hospital with my SCN – have a reoccurring bit of skin which breaks and bleeds – and her request was “leave the bag on over the weekend” and it’s the most grotty stoma bag EVER. Fabric is fraying, edge of my baseplate is lifting very slightly, the Velcro seal end keeps flapping out This is real life with a stoma bag! And real life post operation when you don’t have energy for a change! I threw caution to the wind and did a change anyway. Some peristomal skin improvement made! Hoping that my baseplate will still show the seeping that occurs.
Had my wound packed today.
That was interesting. Not sure it was suppose to happen but it’s helped some of the frustrating pain / itch so I’m intrigued by how this will be tomorrow evening for my next appointment.
Mom arrives tomorrow. Taken some time to get ready but not over doing it.
Really want to make some headway with writing but still can’t find a good long term position to sit down to use my laptop.
DAY EIGHTEEN – APRIL 15TH
Morning. The packing and dressing from yesterday’s appt at the GP has gone missing. I’m sure they’ve fallen out at a bathroom visit yesterday evening so I redressed it myself. This morning : PURE BLOOD leaking out. Scared the CRAP – lolz – out of me. My BF – amazing human being he is – did another change for me half hour ago. Going to be asking SCN for some advice later on at my appt. Worried I’ve made it worse, somehow.
Update from this morning: spoke to both SCN and surgeon and both are happy with today’s assessment of wound with the bleeding. But, if it’s no better tomorrow we’ll need to go and get it looked at again. Not what I want to spend my birthday doing but recovery does not take into consideration other things. Everything we’ve had planned before we knew about my op has been put on hold. Recovering and my health come first. This wound is not messing about.
Woke up to alot of blood coming out of my wound.
At some point yesterday evening my packing and dressing had come away and I replaced it with one of ours. We did the same this morning after cleaning the wound to make sure it wasn’t coming from anywhere else and took off to a stoma review.
She then did both my stoma and wound. Needed a deeper convex bag to stop the leaking and sore skin with some powder. Bags are having a tough time actually sticking so uh oh, elastic tape.
Wound was cleaned, examined – hole is less than a cm big and about the same depth – tissue is being developed in the hole so it is healing, v slowly.
Applied a smaller Biatain dressing to help.
If worse, report it and surgeon will have me come in for urgent appt for review.
It’s slowed abit but still there and has soaked my dressing already. Scared and worried. This part of this surgery is the hardest. Glad I had my stoma done first and have gotten used to that. I couldn’t have coped with both at the same time.
DAY NINETEEN – APRIL 16TH
Had a wound check with my fast-becoming favourite nurse this morning. Great deal of healing seen in the last four days since our last appointment. All booked in for a smooth run of check over the long Easter Weekend
I’m really digging my maxi stoma bags right now – less empties and more time recovering!
Less blood oozing from my wound this morning. Had a normal change and its improving well. Healing seen over the last four days between same person appointments is good progress. Everyone is happy.
Had coffee and cake out this lunchtime, came home for a chill and received by prize from last week. Lovely steak dinner cooked by Ben as a treat.
DAY TWENTY – APRIL 17TH
Being 31 feels no different to being 30 *but* it still has some significance. It’s hard to explain but some of it begins and ends with being rectum-less. As if this marks a definitive ‘new beginning’ for me. It is my moments of clarity like this one that make me wish I could sit up, type like a mad loon and get blogging again. Alas, my troublesome butt is healing and sitting is not allowed. The curse! *shakes fists*
Another day of wound checks done with. This marks up 10 days of appointments so far and things are looking good and promising.There is no timeline for how long this will take to heal but we did find out the majority is around about a cm deep, but a small spot – probably where the drain sat after surgery – is 5cm deep. That is what keeps leaking and bleeding. Currently under control. Easter Weekend is going to be quite interesting to say the least. Of the four days, we have three appointments for checks which I really grateful for, thanks to Peterborough GP Hub
It’s amazing where your mind goes after surgery. I’ve been reading up on the stages of wound healing and the role of the skin in all of that. Fascinating stuff but my mind is like
Need an evening to decompress. It’s been a nice week so far but it’s never easy recovering from surgery. Things are going good – don’t worry! – just emotions to process. My evening has consisted of dinner, Oxycodene and continuing my Friends marathon whilst lying on the sofa.
Can I have one afternoon where I have a) tons of energy b) tons of motivation c) the ability to sit normally again and d) lots of coffee so I can get writing again? Recovery is hard rn
Today has been harder than the others.
Wounds are good. Healing is progressing. Depth is 5cm at one place, rest at 1cm deep. All dressed with extras at home.
Tidied house after we got mom to the station. Had dinner. Just feel blah. Like my energy is low and its hard to do much but sit and sit in these new and weird positions. So annoying. Getting e probably.
DAY TWENTY ONE – APRIL 18TH
Another successful morning! Seeing alot of encouraging sights of good healing with my wounds. And to think three weeks ago I was down in theatre. Time is just whooshing by. It’s also great to note that my stoma has finally settled down into my new routine (new products!) While things remain in recovery following surgery, it’s good to see progress on all fronts.
A blah day. Appointments at start and end of the day. Alot of nothing in between. Did a tiny bit of graphics and blog admin of posts this afternoon and then my dressing was loosened and came off. Reapplied but taken two lots of Oxycodene for relief.
DAY TWENTY TWO – APRIL 19TH
First at home double dressing change done by the BF. Amazing to see the Inadine working it’s wonderful magic on my stubborn midline incision.
Getting slightly concerned; increase in pain and discomfort today. Not sure when it’s coming from but it is annoying. Something just doesn’t feel quite right.Normal temp but weepy dressing. Going to put it down to the change of temperature. I’m all for abit of sunshine but I can’t do much so staying inside it is. Cabin fever though.
Reduced my doses of Gabapentin today. Noted in the afternoon that it’s weird and painful without my usual dose. Probably not the best idea to do this whilst recovering and not mobile enough.
Back to my daily 300 ml x2
Elsewhere, two dressing changes at home today. Alot of leakage but due to not having the most absorbent dressings on – expected.
REALLY WANT TO WORK OR WRITE AT LEAST.
Finding it hard to sit up without doing possible damage and being uncomfortable. Seeking out a bed table so it will be better next week.
DAY TWENTY THREE – APRIL 20TH
I, on the other hand, am getting slightly sick of dressing my wound. It would great if things could like HURRY up right about now. I’d like some normality.
Another day, another wound dressing change. Grateful for being able to get appointments over the Easter Weekend. I did wait for 30 minutes past my appointment time – still not sure why but – and healing is still slow.
DAY TWENTY FOUR – APRIL 21ST
Easter Sunday and starting a week course of antibiotics for my wound. Trying to find a positive so I don’t get down about this set back. We are currently having breakfast out so that’s a win. Wouldn’t be able to sit down without my dressing or its packing so
Snoozed all afternoon. Having an infection is DRAINING on the body. Listening and taking heed.
DAY TWENTY FIVE – APRIL 22ND
The good thing about seeing a rotation of different nurses for my wound changes is they get to give me progress reports. Or in the case of today – Day Two of Antibiotics – I can have reassurance that an infection is not my fault and it’s probably going to happen. She did find the source of my infection – a small pocket in my left butt check – so yeah, I’ve had a *fun* morning.
Probably already know this but taking antibiotics is proper rank. I feel awful and its only Day Two. I’ve checked if I’m having side effects and everything is okay in that respect, but I just know something is up. Body’s intuition or whatever, it sucks.
DAY TWENTY SIX – APRIL 23RD
Made contact with my surgeon this morning re infection and I’m going to be assessed later on this week. No idea what the plan of action could be after that assessment but I have a feeling it might be hospital admission or a tiny surgery. I say “tiny” but nothing about having to be put under for clean out of an infection is tiny. It’s still more surgery. More recovery. Longer healing. But better than the alternative of letting it fester. So today, I plan on RESTING like a MF. Got a long list of shows and films in my Netflix to keep me going!
FYI: I am trying to keep myself positive and not be too bleak in the outlook of my situation. Metronidazole has never been a antibiotic that’s agreed with me and I’m battling my own emotions now too.
Important note to self: make sure the bottom of your Flex pouch is *really* stuck on or you’ll end up covered in your own shite.
Having my dressings changed this evening has really took it out of me. Can’t wait to see my surgeon tomorrow and get a plan for this infected wound in place. I made a CRACKING roast chicken dinner. Now I am enjoying a cuppa on the sofa after almost choking on my antibiotics. You win some, you lose sone eh?
Been trying to sleep since coming to bed at 9.30. Can’t stop wondering what tomorrow will bring.
Rough couple of days on these antibiotics. Have got a review at the hospital for it to be looked at and I am hoping that it is just a simple thing.
But I am considering the worse case scenario being another surgery to have it drained under general. Could be drained under local. But could also just been treated with different antibiotics. Its all too far away to really commit to anything but I will be taking a few essential items with me so I don’t get caught out if I need an op.
I do feel rubbish. I spent yesterday napping on and off with little to no energy. Cancelled most plans for this week already as I just cant face more than my dressing appointments and this AMU consult.
I do hate Metronidazole with a passion. Not been on it for years and yet opening to the box of tablets to see that HUGE yellow smartie looking at me sent me right back to those early weeks after diagnosis. Hope I am just processing that flashback / throwback without forcing it into my present thinking.
DAY TWENTY SEVEN – APRIL 24TH
Couldn’t get to sleep last night wondering about today. Wondering what will happen. Thinking about and feeling the infection. Wondering what I did wrong to get this.
On the plus side, I did a kick ass stoma bag change; got my two piece flex down to a TEE and I’m proud and happy and ready for today. At this moment.
Also, sneezing hurts. Alot. Like I physically feel the pain before the sneeze and omg its bad.
Currently waiting for a taxi to take me to the hospital. Got a clingy cat that won’t leave me alone. Let’s hope I make it back to him later on today
Had my wound checked by the consultant and definitely a cause for concern. Got results of the swab taken on Sunday; came back as Clostridium – a type of deep perianal infection. Been issued some new antibiotics to take for a couple weeks to knock the infection out and so I can heal now without more problems. Follow up booked for May 14th. UNLESS there is pain, fever or more discharge, I keep on truckin’ til then.
Have to say how great AMU staff at Peterborough City Hospital have been today, despite it being so so busy after the long weekend.
One dose of antibiotics and I was out for the count – had a cheeky catnap with Newton. Fourteen days of these Amox/Clav so…
Got sorted at the hospital earlier. Found out the infection is Clostridium – a type of deep perianal infection. Been given new antibiotics for a couple weeks to knock it out and I can heal.
Amox/Calv are huge but able to break them in half. Any new course of medication makes me feel unwell so it’s been an afternoon of struggling to eat and drink with the naps. Felt better after a light snack dinner but the cuppa I had made the world of difference.
Still, this is shitty. Got to look out for increase in pain, more discharge and a fever as my warning signs of antibiotics not working or infection getting worse. Let’s hope this doesn’t happen.
DAY TWENTY EIGHT – APRIL 25TH
Morning! Woken up feeling brighter and less nauseous, so taking that these new antibiotics are doing some good. Thirteen days to go! The fact I actually feel brighter means I can attempt to ‘attack’ my WIP as well as my to-do list.
Update alert! Down to a smaller wound dressing. Check out this Coloplast Wound Care Biatain Silicone one; medical tech is AMAZING!
Woke up feeling better today. No nausea! Think these are the better antibiotics to be on.
Over the day I’ve had two dressings on, one from the shower and another about 4pm. Been able to walk around every 30 minutes to take the pressure off my wound.
Got into blog stuff but fried out from TV.
Successful day in all.
It’s really interesting to looking back at these last fourteen days and see what I’ve experienced on a daily basis.
It is easy for the days to blur or blend into one big mass. In the same instance, time can feel so slow some days too. It’s an odd and unsettling feeling, I’ve never really gotten comfortable with – either from recovering from surgery or having time off for flare ups to resolve. I still wanted to feel like I’d achieved something each day, so I recorded more of what was happening. These last two weeks we’ve seen more improvement but also some set backs. But given that set back, I’ve been able to get it resolved by having an treatment plan.
Of course, setbacks can happen at any time. And the risk with wounds is that of infection. To go just over three weeks in the community without any infection, I am okay with this happening. I was initially disappointed but I haven’t caused this, it is just part of having this operation – or indeed any operation – and being immune compromised from my IBD treatment. It’s all about accepted risk, in all aspect of chronic illness.
My next update will come when I have my surgical follow up with my consultant in the middle of May. Until then, more updates – or nuggets of my daily challenges – will be on my Twitter feed, linked below.