What I’ve Learned Since Having A Proctectomy

Hey Crohnies and Lucky Coiners,

Not posted in a few weeks because I’ve been away having surgery to have my proctectomy, some of you might not know what that is so I’ll explain it a bit more. Basically 2 years ago after I had the majority of my large intestine removed I started bleeding from my bum which only got worse until the point I was getting caught short with the blood if I wasn’t at a toilet fast enough. This led to my surgeon giving me the only option of getting my rectum, intestinal stump and bum hole removed because they were just starting to decay and were never going to get better on their own. This involved a whole day of surgery (I’m a difficult case, most people are only there for 4/5 hours but I was closer to 8/9!) on the 27th of January and now I’m home I wanted to talk about what I learned these past few weeks! 

The fear of the unexpected is way worse than the outcome ever is. 

No matter how many surgeries and general anaesthetics I’ve had (probably nearing 20?) the gut feeling of fear never ceases until you’re actually awake in the recovery room and know it’s all over, even if there are complications. I had some bleeding in my pelvis that was a complication but surgery was otherwise smooth and the feeling of relief I got when I woke up was crazy! 

You will probably get emotional before surgery and think the worst. 

I managed to keep it together until just when I was saying goodbye to my mum and stuart… then I couldn’t stop crying and telling them I loved them. I have complete and utter faith in my surgeon but I have to admit there is always a part of me that worries I won’t make it through right before I go in, this is always needless because I’ve always survived until now! 

Epidurals may seem scary but they are a miracle worker.

I never had an epidural before I had my last surgery and I majorly regretted it because I spent weeks in a pain haze that meant I can’t remember anything from that time other than how bad the pain was without the epidural! This time I went into it thinking I needed to focus on getting it done and once it kicked in after surgery I was laughing and joking with my family less than 2 hours after I’d woke up! 

Your dignity can and will go out the door. 

There’s nothing quite like meeting the people who will be giving you surgery and helping like nurses and anaesthetists knowing they’re about to cut you out of your paper pants and do surgery on your pelvis and ass… please remember to check in any and all embarrassment or dignity at the door, you can collect it when you leave. I even had nurses give me bed baths for a few days so I do apologise to every single member of staff who saw me naked… I would panic about it if I pondered this too much so I tend to try and laugh it off then put it in a mental box that’s chained up and locked forever so I don’t cringe my face off! 

All your medical team are people too and they are as emotionally invested in your surgery and recovery as you and your family are.

When I was getting my epidural I had a wonderful student nurse hold my hand and tell me I was going to be okay but just as we finished up I ended up getting really faint and had to lie down and be fanned with a sick bowl. Seeing how fast I got unwell made the nurse get sick too and she nearly fainted because she was so worried! This is why the people who work in medicine are the most special type of people, it takes a very strong person to be able to be emotionally invested in hundreds of people each year and still make a huge impact on each and every one of our lives!

If that student nurse is out there reading this, I know you’re going to make a fantastic qualified nurse one day, your compassion in such a worrying time for me helped me through and without you I’d probably have gave up on the idea of an epidural and probably would still be in a fog of pain and in hospital! 

Waking up after surgery and not having my epidural strong enough was tough but so easily remedied! 

I woke up from surgery in a lot of pain because of my position being the same for so long, being flipped for the part of the surgery done at my tooshy and having some major surgery meant that for a good 10 minutes I was ridiculously aware of how sore I was! I even started crying to a nurse about how I wished I didn’t have the surgery but as soon as they upped my dose marginally it made all he difference and I went from crying to laughing with the same nurse about how itchy it made my nose! 

Morphine makes your nose SO itchy! 

Seriously, no idea how to combat this but it was hilarious how much I was scratching my nose for the first 2 days! It was the first thing my family noticed about me when I arrived to the ward and I had them laughing about it for days.

You can have major surgery without it looking major on the outside! 

I only have one super thin scar which is hidden by my bag, alongside a brand new belly button (my old one was infected and had a wound behind it that never healed so they just took it out!) which is in a much easier position slightly to the left and higher than it was before so it isn’t bothered by my bag at all. I also had my bum hole removed and instead of a line instead of a hole graham managed to remake a new one that looks like a bum hole but it’s all stitched up inside! 

I’m still in awe at the work he’s done! 

Bed baths are the best/worst thing ever.

After surgery you’ll feel disgusting… no way around it but chances are your nurses will give you a bed bath the morning after. This is amazing because you’ll feel clean again and it’s great to smell like your toiletries instead of THAT hospital smell but is also horrible because you’ll feel freezing while they do it and there’s always the awkward “these people are seeing me naked… how do I talk about other stuff to make it less uncomfortable” feeling but just remember that your nurses do this every single day… they aren’t analysing the size of your boobs or your stretch marks or laughing at cleaning around your catheter, they literally just see it as giving someone a good clean to make them feel better and for this I’m so grateful! 

You’ll feel like you can do anything while on the “good” meds. 

Last week I had no problem walking around, going to the toilet with no pain, sitting up properly for hours at a time and even managing a sit down shower… this is only because your painkillers make your pain waaaay more manageable for the first few days, after they cut down to just oral meds you’ll be probably less active and it’ll hurt more than it did. That’s okay though, it’s a good sign of you healing! 

Sometimes it’s hard to stay positive.

I know I try to sound upbeat and positive on here but really I am a fairly negative person, being chronically ill and having a decade of all these treatments and all the other craziness that goes along with it will get hard sometimes. It’s okay to be upset, it’s okay to be angry, it’s okay to mourn for the life you should have had! It’s okay to be jealous of seeing your peers doing all these things you’ve never been able to and it’s okay to get irritated by people saying “you just need to be positive”. 

It’s very easy for people who have never been in your situation to say it’ll get better when it feels like the world is ending but that’s okay too, they’re trying their best to be helpful and make you feel better. It might not be the right thing to say but remember how scary all of this is for you, they’re probably feeling sad, scared and angry about what’s happening to you just as much as you are! 

It’s okay to ask for help. 

Right now I can’t sit up, do more than a small walk, drive, wash myself, get juice or food for myself or bend down. I hate being so dependant on people but it really is okay to ask for help. Your friends and family all love you and will help you in every way they can and will do it with a smile. Just remember to not take them for granted and remember to say thank you for their help and they’ll never mind giving you any help at all! 

You might not be ready to leave hospital when your team are ready for you to go! 

I was technically supposed to be discharged on Wednesday evening because it all went so well with recovery but in myself I wasn’t quite ready to go home. I was still struggling a lot with feeling faint when walking and needed another day of the stronger pain relief so I made the decision to stay in 1 more night and it made the world of difference! Listen to your body and don’t do anything you’re not ready for! 

Recovery can have some unexpected downsides.

When I left hospital everything looked wonderful but since I’ve got home the stitches in my Barbie bum are jagging into my bum and making it bleed and I’ve also got some wound separation, this is totally normal but it’s been hard for me to get my head around it as these side effects have only occurred since I got home! Luckily the stitches are out on Friday and my district nurses are changing my dressings daily and making it heal as well as possible.

Getting better may take longer than you think. 

When you’re on the good meds you tend to get really confident you’re going to be great and back to normal within 2 weeks… realistically the recovery from a proctectomy is 4-6 weeks but in reality it could take up to 6 months to get you back to normal. Now I’m almost 2 weeks past surgery and worse than I was when I was released from hospital I realise how wrong I was and how this is a long term recovery. It’s really important you listen to your body and take it easy… not knowing your limits can cause set backs so make sure you don’t overdo it! 

You will be sick to death of people telling you that you look “great”…

Seriously tough to deal with this one, just because there aren’t any major signs of the surgery on the outside other than bruising from all my lines it’s easy for people to think I look wonderful. In reality my rosy cheeks are because I’m struggling to get enough oxygen when I stand up and have to pant so I don’t faint and I’ve got “great skin” because I’m anaemic and literally just avoided another blood transfusion after surgery due to the bleeding in my pelvis. I might look brilliant too because I’ve lost weight… trust me I’m enjoying this side effect but really the whole not being able to eat because it causes pain isn’t fun and it’s actually just a consolation prize for being so unwell. 

I’ve actually got to the point of crying over this one because it makes me feel like so many people don’t realise how hard it actually is to go through this kind of surgery. It really is life changing and it’s tough giving up your life for such major surgery. Just because they can’t see how much pain you’re in from your stitches in your bum or the wound separation on your stomach that’s at major risk of infection doesn’t mean you’re well and I wish they’d understand that when I try to explain what it’s really like. 

 District nurses are the unsung heroes of the medical world! 

I get daily dressing changes due to my wound separation and it’s absolutely amazing to have such friendly, caring, compassionate and loving nurses who always go above and beyond for me! I’ve had a nurse even all up to get me a prescription because I was too sick to to to out of hours for morphine, I’ve even been given an incredible cushion to put on my wheelchair or anywhere else I sit down that would have cost £90 to buy myself for free! They even have properly cleaned my bum when it’s too sore for me to do it myself and they’re so incredibly gentle it’s unreal! I actually look forward to their 10am visits because they feel more like friends than nurses! 

It also means the world to me that they’re the same nurses who looked after Duncan and gave him the same amazing care they gave me! It’s really fun to be able to have a laugh about how I know he was their favourite patient and I’ll have to settle for second place! 

Most importantly and my final point is you don’t have to be happy or smiley all the time! 

I know I tend to have a funny attitude to this surgery and try to remain jokey as much as possible and smile for mainly everyone else’s benefit but really it’s so important for everyone to know it’s more than okay to be upset or even angry about your recovery or surgery or the changes to your body! Remember it’s YOUR recovery, no one else’s and how you cope with it is completely up to you! No one has the exact same experiences and it is tough but you will get there in the end and you should be so proud of yourself for going through all of this! 

Thank you for reading and as always for your continued support,

Jen x

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4 Comments

  1. Very good read, I am one week post op ileostomy and going to Florida in September. Hope your soreness has reduced and you are pain free x

    1. Aww fantastic, I’m going to Florida in September too! My soreness is definitely on the mend, I hope you’re recovering well too! Welcome to the ostomy club! 😀 x

  2. Thank you for writing this and for being so truthful. My son has to have a protectomy at some point due to Crohns disease but the surgeons and consults t’s are waiting until he has got his head around d it and is ready to have the op. Look forward to your updates and wishing you all the luck in the wotold x

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