After 8 long, incredibly painful days in hospital, on Wednesday, at 12:50, I was discharged and driven home by my Dad, exactly to the day and 10minute slot that I was put under the anaesthetic the week before. So much has happened in the past week, most of which I would rather forget forever and big chunks I already have.
I wanted to try and go through the week for you guys, but everything feels so hard to pin down to exact times, days and feelings. It all feels like quite an overwhelming blur so I've decided to go for a more general post about the whole experience, bear with me.
On Wednesday 7th September, the morning of the surgery, Mum and I headed to my hospital. The day before had been pretty awful as I hadn't been allowed to eat anything. I just had to drink juice and water to ensure my bowel was clear for the surgery. Luckily due to already having Margaret I didn't need to drink the stomach turning bowel prep, but having had my last meal on Monday (5th) evening, I found it a pretty tough day.
Before the surgery, I wasn't THAT nervous, aside from a 15 minute wobble in the waiting room, where my heart felt like it was going to burst through my chest and I might burst in to tears at any moment. I met with various surgical people who explained everything, again, and put my Mum and I massively at ease. At 12:45ish I gave Mum the biggest hug and followed the nurse to the operating theatre.
Before the op!
My surgery lasted 6 hours. Quite a lot longer than the 3-4 average and the 1.5 hours it can ideally take. I woke up with the following:
- 3 key hole wounds, one on the left of my tummy, one on the right and one about two inches above my belly button.
- A drain sticking out of my left side which collected in to a clear pouch making sure any nasty fluid that built up came out of me.
- A bag attached over Margaret (where she had always been), on my right.
- Unfortunately, I also have a roughly 3-4inch line from my bikini line up to about an inch below my belly button.
- A tail end wound site (A line of stitching where my bum hole used to be).
All the wounds had been painted over in this lilac, waterproof glue. It's safe to say, my tummy looked a complete mess and was hugely swollen. Although disappointed it couldn't all be done key hole, the longer incision was SO much smaller than it could have ended up being. My surgeon has stitched the wound, from the inside. Yup, that's right, from the inside. It blows my mind. I have no staples, clips or visible stitches, just a scabby line which should ultimately be very neat. The recovery nurse commented that it was more like a plastic surgery wound, which is just fantastic.
One thing that has become incredibly obvious is the amount of time, care and huge thought my surgeon has gone to throughout my op. As well as minimal stitching to prevent obvious scarring, he has lined up the top of my scar with the top of Margaret so neither should ever show. The scar is also cut at a very slight curve that goes around where my bag lies, meaning the sticky bit doesn't go on top of the wound but the actual bag covers most of it. He's also had to re stitch Margaret in place as she has changed shape, but these stitches are not visible either. He has done everything he can to make the healing, ultimate appearance of my tummy and life going forward as positive as possible. I am incredibly lucky to have him and can't thank him enough.
After the op he explained that key hole had worked for the majority of the operation but when he tried to remove the bottom end (rectum etc) it was "like cement". If you imagine it's supposed to be a very soft, quite supple area, (like the inside of your mouth), then it gives you an idea of what a bleak state I was in. This is the area that needed the longer incision and took him hours to cut away trying to ensure no damage was done to the surrounding areas. He was clearly meticulous. The state he found it in, just proves that there really was no other option than this op. Aside from the length of the operation, which makes recovering from the anaesthetic harder, everything else went to plan. He did an amazing job.
My battered tummy
Right from the recovery area, after the operation was over, Mum & Dad were there for hours and hours, every single day. Throughout the whole experience Mum was like an anchor. When I felt confused or overwhelmed with the medications, nausea and pain, I felt safer because she was there. She stayed with me overnight on the first night which helped so much & was there for 12+ hours in the early days.
The nursing staff were also absolutely amazing, three of them especially, went above and beyond and really stood out. I was, as I normally am, the youngest of all the patients they had on the 34 person ward, with most being quite elderly. At various moments, throughout my 8 day stay, having the nurses, my own age, to talk to, made a big difference.
The first few days after the operation are a mess in my mind. I remember certain big moments and little insignificant details but can't easily put them in the right order. Some of what I remember is probably not accurate considering the drugs I was on and some of it is just a feeling rather than the memory of an event. I could try to piece it all together but it was a very tough time, I'd honestly rather not. It was the hardest thing I have ever had to go through and at times I felt so out of control and overwhelmed, I honestly couldn't see how I was going to get through the next 30 seconds. I remember pleading with my mum that they just make me unconscious again, because I just didn't think I could do it. The best thing for recovery after an op, regardless of wounds, pain or tubes coming out of you at all angles, is to be sat up and ideally out of bed. This was drummed in to me and took several attempts over several days, with the help of mum and nurses to make it happen. It felt completely impossible but I did it!
The incredible thing is, despite every hour seeming just as hard as the last, 24 go by and you can see an improvement and by a week you're in a totally different place. For example, on Day 1, I needed help moving my feet a few inches across the bed and by Day 4 I was able to make my way to the bathroom, very slowly, but on my own. The progress has felt incredibly slow but in reality has been so fast.
It wasn't until Sunday evening, when my catheter was removed and I got over an ability to wee/retention nightmare ordeal, that I started to feel a bit more together and it was by Monday night, once my drain had been removed and the antibiotics had stopped, that I felt a little more like a human being. The combination of the pain itself, pain relief, antibiotics & anaesthetic effects had me feeling sick, a lot of the time. One of the anti sickness made me throw up, every time (apparently it's one of the side effects!...) I tell you, being sick with 6 different wounds in your tummy is not a pleasant experience.
On Tuesday evening, 8 days since my last meal, once most of these meds had stopped, the sickness disappeared and I was finally allowed to eat & chew something. I had been told that morning that I would be allowed to go home and then at the last minute my blood test came back with a low potassium reading. This can ultimately be very serious for your heart but is also not unheard of with people with an ostomy. It did, however, mean I had to stay in hospital. I was heartbroken & really didn't cope well, I was so desperate to get home. After only consuming liquids for 8 days, Margaret's output was pure water, meaning I wasn't absorbing anything. I knew that all I needed was food to thicken up Margarets output, to then absorb nutrients and my potassium would go back to normal. The Drs also put me on supplements to try and raise it, before re checking.
I felt horrendous from not eating and was very weak and shaky, my body would shake after standing for 5 minutes, because my muscles were struggling to keep holding me up, I'd lost 11lbs in total. The Drs need to take it slowly, after a bowel op, to make sure everything is working okay, which of course makes complete sense but is hugely frustrating.
When they did give the 'normal food' go ahead, I asked Mum for a whole Nandos meal (obviously). She wisely said that probably wasn't a great idea and took me down to the hospital restaurant where I nibbled at some soft chips, a few spoonfuls of baked beans and a couple mouthfuls of chicken. It was incredible, I can't tell you how amazing that first tiny mouthful of normal food was. I also ate half a ham sandwich, half a packet of crisps, a banana and some toast. The output, as I knew it would, thickened right up and my potassium levels shot up (almost too far thanks to the extra supplements I was also taking) and I was allowed to go home as long as the potassium was re checked three days later. I arrived back home, very tired, sore & bruised, with arms that resembled a pin cushion.
At home with Toby
Two days on and I'm happy to report that, in true Gabi style, I'm pretty much back to eating everything I want. I have to chew very well and drink a lot of water, but I'm once again loving all of my food. I feel really fortunate that I had an ostomy for three years before this op. It's one less thing to get my head around or worry about as I already know what to expect. Margaret and I have an understanding, I know what to eat and when & she has rarely let me down in digesting all the foods I love.
Since coming home my mood is better, I no longer look so unwell and I'm not a shaky mess. Things are starting to feel a little more normal and little by little I'm improving. The first night was horrendous as I couldn't lie comfortably in bed but I'm now set up downstairs on the sofa and have been able to get some sleep. I am still very, very sore and on painkillers throughout the day, I am slow at everything but every day am able to do a little bit more than the last.
Things I can't do that are very annoying:
Sit down straight on my bottom
Lie fully on my back, side or tummy
Pick up Toby
Bend or squat down
Open car doors
Sit at a table to eat
Straighten properly or twist my back/body/shoulders
Sit in a car
Get in and out of the shower
Things I can do on my own!:
Fully bend my knees
Get myself from standing to lying on the sofa and back up (80% of the time)
Walk/shuffle short distances round the ground floor of the house
Go up and down stairs (with someone watching)
Go to the loo
Stand up for 5-8minutes
Pull my body up the bed or sofa with my arms
Brush my hair
The surgery has meant that my knees have gone down, fully back to normal, which is amazing. I am now also 100% free of all Crohn's medication for the first time since I was 16. The surgeon chopped out every diseased part so there is currently no need for it. This, of course, may change as Crohn's can spread elsewhere and the surgery was never a cure, but for now I am so relieved to be off the high doses of hardcore and potentially harmful drugs I've been on for years.
I have Toby and Flynn by my side constantly and my family have all been incredible. I am beyond happy to back to Dads cooking and my brothers have cheered me up a lot. Mum, especially, has been there through everything and I honestly couldn't have gotten through it without her. The recovery process has only just begun and it's going to be months of baby steps but right now I'm just happy to be home. The support, love and messages from people have made it all a lot easier. I can't thank everyone enough for how lovely you've been. Big, life changing events, like this, truly highlight who and what is important and what frankly really doesn't matter. You get to know who really cares and the amazing kindness and thoughtfulness from friends, family and strangers has been unbelievable. This kind of thing is like a catalyst to clear up everything else in your life. It's a fresh start for a lot of things and I'm surrounded by the most brilliant people for it.
Onwards & upwards!