This is my recovery diary from my removal of my anus, rectum and ability to pass anything from my bottom every again!
I had my rectum, removed back when my JPouch was created on 2017, as I have also shared in a separate blog after it failed and has now been removed.
This left me needing a permanent Ileostomy Stoma and removal of the remaining cuff, sphincter muscle and anus, thus affectionately known as ‘The Barbie (or Ken) butt’.
Such extensive surgery installed fear and panic in me, I knew little about the actual recovery and what to expect, I researched and went to google for my support, however, what I would of liked was to hear a first-hand journey, just a glimpse of the time scales to recover, the wound care and most of all, the appearance!
This is why I am sharing such a personal and intimate recount of my recovery, to give others knowledge and help, hopefully, to remove a few myths and worries.
Ill start with the night before when I made a video diary entry, here it is!
I start my post op diary on day 4 post op a I was spaced out on pain medication continuously for the first 3 days!
The First few days!
My Diary - Thursday Day 4 Post Op
'Today I am wire free at last!' I have been taken off the IV Oxynorm pain drip and hydration solution and put onto an administered liquid dose for immediate pain relief, as well as a modified relief tablet to manage the base level of pain I would reach, trying to keep me at a tolerable level.
'My bottom is hell today, keeps leaking stuff!' I have a bag stuck to my bum with 3 drains pipes going into it, they leak though and feel horrible, squishy and awkward. They have changed my drainage collection bag a few times so far as it is draining a lot of liquid.
I find sitting too painful so lie on my side half propped up.
Friday Day 5 Post Op
Today I decided to take a video diary so I cant exaggerate or change how I really felt at the time!
I struggle with the bladder problems today and issues with the catheter as well a sitting on the loo for a wee for the first time!
I am given a Phosphate drip as I am so dehydrated, I feel flu like symptoms so a little worried I have an infection. I manage to move around a little using a Zimmer frame left on the ward but not ideal as it hurts.
Saturday Day 6 Post Op 8th Feb 2020
Slept most of the day as I have pain in my stoma and generally feel crap! Trying to play games with Stuart but I keep nodding off mid-sentence… Bag still draining weird liquid from my bottom wound and I can now just about sit up in bed but I try to balance on one cheek then swap.
I am more mobile I have been for my first of many walks around the corridors. I only managed 5 mins before getting very hot and painful.
Sunday Day 7 Post Op
My bottom drains go into a bag that is actually an infant stoma bag thats stuck to my bum! It has been changed so many times now that my skin is raw, still oozing liquid, apparently up to 75ml a day.
I am finally allowed a shower and OMG it is heaven! Bit awkward as I try to keep my bag and wound dry, but it is so worth it!
I am now trying to sit in the chair more as I am so fed up lying down. I can sit on my bum as long as I distributed the weight to my cheeks, not parting them at all so I dont split my wound.
I use the cushion I bought before I came in that is made with a cooling gel layer to sooth and memory foam filling. It helps but I only sit for short periods, mostly I half recline and lie in bed.
Monday 1 Week Post Op
I'm starting to feel a little better now 7 days on and my consultant has decided it is time to take the butt drains out! OMG!
Ok, I can not flower this up as I promised an honest recount so here it is!...it hurt (but only for a few seconds).
My drain bag has been changed a few times again as every time I sit down, it pops the bag, then leaks.
The skin is still broken down and raw sore from the output and the adhesive from the bag before they even start!
The nurse takes hold of the 3 drains and wiggles and fiddles to remove them but then they snip a stitch holding them in and the drains start to move, a few more wiggles and a swift pull (this is the sharp scratch bit), and they come out.
The nurse wipes the area and cleans me up. I am given HUGE pads to wear that look more like adult nappies! (yes, I managed later that day to do a little dance around the ward with them on my head, to cheer up the other residents of course,) We are now also on lock down as my neighbour has MRSA. Stuart has to wear funky protective glives and a gown everytime he comes in.
I was covered in bruises from the many drips and infusions I was given...
I have started to feel a terrible itch! The skin is healing but I find the pads made me itch more, the stoma nurse suggests I spray my new bottom with a barrier spray. This feels very weird to do but honestly, it helps a lot and also helps heal my skin.
I take my first look at my wound and it is no way as scary as I had imagined. It is an open wound so no external closure or dressing, just internal stitching and an open space. I am sad to see I still seem to have a skin tag that was from and old haemorrhoid, but overall, it is OK, just 3 holes, approx. 5 mm wide, 20 mm long and very deep!
Day 9 Post Op 11th February 2020
I have had a much more settled day today and even manage the draining fluid from my wound well.
The output fluid is a kind of gooey bloody stained liquid. I am now using night-time sanitary pads that Stuart has got for me, they are much better and don’t tend to stick to me so much. I am still on high pain meds but don’t forget, I also had the full Ileostomy Stoma created at the same time so much of the pain is from that. I’m still sleeping lots.
Day 10 HOME TIME!
The Dr woke me at 8am to say my bloods are good, my swelling markers are reducing, and I am finally allowed to go home. I have no signs of infection and am able to sit with a padded seat so should be able to cope with the drive home (2hrs on a good run).
I finally arrive home at about 9pm in the evening after a pit stop to see my kids that I miss so much. I have tablet forms of medication which include 1 Oxycodone tablet up to 4 times a day and a modified release oxynorm morning and night. I am also on Pregabalin 2 times a day for nerve pain and paracetamol. I am allergic to Morphine so can not have anything else to help.
End of Diary!
My Home Recovery...
At home I soon learned that the more I moved the more my wound leaked! It went from runny blood to snotty clear fluid to thick green gloopy goo with no reason. I was able to cope with using sanitary pads but had to change often. I also found I needed to wipe the yuck every time I got up or passed the loo as it felt so nasty in the early days.
The following videos show my journey in the early days at home post operation as shared on YOU TUBE.
3 Weeks at home
The wound on my bottom was now oozing more and more, every time I stood up, bent over or walked, so I decided to get checked out at the local hospital with the Stoma nurses.
They looked and checked it was healing well and was satisfied that as the output didn’t have a bad odour and I had no temperature, that It was all normal healing.
The wound was left open with no drains or packing to allow it to heal naturally from the inside out, and this is exactly what it was doing.
First day of Rehab! 3rd March One Month Post Op
I needed to get my wound checked at the Drs, just to be sure it was all doing good.
Discharge had finally almost stopped and was only leaking a tiny amount but itching a lot! All I could use was a portable bidet and barrier cream! Very irritating but shows its healing internally.
I am now sitting on a Valley cushion that is amazing and has helped me a huge amount allowing me to sit throughout the day, getting up every half hour to ensure I give the bottom plenty of blood flow to keep healing going well. The wound has shrunk a lot and is doing well.
6 Weeks Post Op
I have had extreme itching inside the bottom area deep in the wound almost internally, on checking I could see what looked like a stitch inside.
The wound holes have started to fully close and just weeping a small amount.
The discharged changed and increased for a few days and was green and thick, but then went on its own accord.
What I really want is a soothing bath, but I’ve been told no go until the holes are fully closed which can take months!
I can sit on a normal surface but still prefer the Valley Cushion as it allows a healthy blood flow to the behind.
I felt comfortable and confident enough to be intimate with my fiance at 6 weeks, and I am pleased to say, I felt no unusual pain and it did not interfere at all. I am very lucky to have an extremely understanding and empathetic partner and I recommend taking this step slowly and only when you feel ready.
I wont lie and say it didn’t play on my mind at first, but I feel it is something that is a concern with this type of surgery and I continue to be cautious for now.
Now - 2 Months Post Op
COVID 19 - The World Went Into Lockdown
The world has just been declared in a pandemic as a virus known as Corona Virus or COVID 19 has taken over, we are put into lockdown and not allowed to leave the house unless a key worker, to exercise or to shop for essentials. For me this means I now have my kids home whilst I convalesce and company on my daily walk.
I have reduced my pain medication again and use Pregabalin once a day and Tramadol as needed which is about 2-3 times a day. I totally stopped the Oxy at about 5 weeks, gradually and replaced with Tramadol.
My rehab is taking off at last although hindered by chronic joint pain still, as far as my Barbie Butt is concerned, it’s doing great! No discharge recently, the holes are very small now, just about a few mm each, and I only itch occasionally!
I am doing a daily kids PE workout with Joe Wicks every other day (or at least attempting to do it!) and walk about 50 mins a day. I am off work for a few more weeks but so far, my recovery on the Barbie Butt side has been amazing. Much better than I anticipated and less pain or trouble than I had heard!
I have had other complications with my Stoma in form of a nasty prolapse and hernia and these have affected my recovery far more than the bottom!
I now live with the fact I will never do a poop ever again from my bottom which is a completely different subject where one day I may try to tackle the mental impact this ha had on me and my life, but all is good for the first time in over 5 years!
I am excited and optimistic about my future with good health and less challenges all thanks to this surgery and my stoma!
I hope by reading I have not scared you but shown it is manageable and not as bad as you may think, even at its worse!
Thank you and please share and add comments if wish to help others.
Stay safe
Andrea
xx