Being told you need to make the decision of having surgery, or being told you need emergency surgery is a scary prospect to anyone with or without IBD.
When I was told I about surgery I panicked, the first thing I did was Google everything and all I could find was a lot of forums with so much information and far to much to take in so I wanted write my experience, what happens before surgery, once you come round after surgery, and what it was like when I came home.
I had a lot of complications throughout my surgery and it won’t be documented in this blog post this is just a write up on what to expect. I will do a further blog post on what complications I had.
Before My Surgery
Prior to having my surgery I met with my surgeon and prepared a million questions to ask him (apparently they get it a lot!) i.e whats your success rate? How many of these have you performed? How does the stoma work? Whats an ileostomy? I felt like I was interviewing him but I didn’t know much and I wanted to be 100% happy when I walked out of the room I was in great hands. My surgeon was fantastic, calm and collected he drew diagrams for me to take home, showed me my colonoscopy pictures to explain why I needed it. After I walked out I felt like I was in good hands. I am glad I prepared for this meeting it just made me feel at ease.
After meeting the surgeon I met with the stoma nurses straight after, they really put me at ease gave me so many leaflets and demonstrated what an ileostomy bag looked like, explained the good the bad and the ugly of what could happen and also they put me in touch with other ostomates. The stoma nurses are brilliant to talk to, you can ask them the silliest questions and they really do listen and give you great advise. One thing I did get prior to my surgery was a fake ileostomy from my stoma nurse, it’s a sticky sponge piece you can stick onto your stomach and then pop an ileostomy bag over the top. If I am really honest I was so terrified about my surgery I didn’t try it as I think I was still coming to terms with having the surgery in the first place.
On my next visit to the hospital the stoma nurses “mark you up” this is really important for them to measure where your ostomy will sit not only for you but also for the surgeon, they measure your abdomen and make you do a few stretches, sit down, bend over etc to see where my stomach naturally creased – they do mark both sides of your tummy just incase they have to pull it out in a different place!
I had the marks on me for a couple of days (they give you a pen to top up the crosses) and leave you with a huge bag of stuff to read and do the day before my surgery,
The Day Before My Surgery
I would advise to take the day off on this day or at least be very near the toilet as you will be running a few times a day! I was thankfully at home the day before as you need to take regular enemas and if I am honest it’s the most disgusting thing I have ever tasted and looks like a science project! I was given drink upon drink to drink all day! The drinks they make you have apparently help get your body prepared for surgery and aid with the healing process not the best thing I have ever tasted but when you’re starving yourself anything is better than nothing!
You will have a shower gel to wash in, stuff to put up your nose in your ears etc to prevent MRSA, then the fun part enema’s! You thought IBD was bad … you have a few a day and you add water and it fizz’s right over your cup! It works quickly so get ready to run …
Day of the surgery
My surgery was booked in for 12pm, I waited with my partner and Mum for what felt like an eternity, signed what felt like a million-forms and met my surgeon again for last minute questions, the anaesthetist explained the procedure and the anaesthetics. I was then put into a gown and lovely stockings (to prevent blood clots) then was taken down to theatre the rest was a blur however my partner filled me in on what happened next.
I was in surgery for 8/9 hours in total and then in recovery for about 3 hours, its major surgery so they want to make sure that you come round before they take you back to the ward.
When I came back up to the ward I had quite a few wires & drains on me, I had a heart monitor, catheter, drain collecting blood from my rectum (it was up my bottom) a drip, patient controlled pain killers (morphine on a pump so you can control how much you need – you will still feel knocked out at this point so it wont be any use until the morning!) I had another drip with antibiotics and I also had an oxygen mask on as well as loads of wires from the heart monitor – I know it scared my family so I want to be honest so your prepared!
I can’t remember any of that, all I can remember is waking up the next day and feeling abdominal pain, the nurses and pain team looked after me throughout the night and the next morning, they took my oxygen away, and heart monitor first thing the next day. You should have a dedicated nurse throughout the night monitoring all your stats every 30 minutes.
The Next Day
The next morning the first thing I did was look at my stomach – and all I saw was a clear bag filled with blood … not the best thing to see first thing in the morning! The blood in the bag is normal your body is trying to get rid of the internal blood. The stoma nurses will come and see you and will change your first bag for you, the hardest thing was seeing what looked like a huge swollen tomato for the first time!! They kept a clear bag on me so they could monitor my output and kept me on a diet of the Ensure drinks along with soup …. YUMMY!!! The surgeon checked up on me and told me how I got on, and what to expect with my recovery. Soon after I met with the Physio who had me up and sat in the chair … OUCH as I still had a massive drain up my backside and catheter – lasted about 10 minutes before wanting to lie down!
The Next Few Days;
Over the next few days it got easier, they take your drains and catheter away, and your able to get up and stand on your own – every day I walked a little further and felt a little stronger. The worst part for me wasn’t the walking it was the pain in my shoulders believe it or not the air they use when you have surgery makes your shoulders kill! Just be warned.
I then started doing bag changes on my own by about day 3, and it was strange! My stomach was so swollen and felt bruised, a thing hanging off me like a massive tomato and I had to try and cut a back to stick over it! However hater a lot of patience I was able to do it – looking back though I am surprised they ever stayed on!
Scary … I am home YEAY! I have to do all of this on my own … OH! Once you have had that sinking feeling it gets better, bag changes slowly become a routine – I made a few mistakes lets just say but you do learn quickly!
The worst bit … Not being able to do anything for yourself, having to have a partner or family member getting you everything, helping you sit up, walk, eat, having my food blended, help up the stairs the list goes on. I slowly built up my strength and recovery got better slowly however I was an unlucky one with complications! I will write up another post on that!
After a couple of weeks when the swelling passes, your stomach and stoma change, mine went from what can only be explained as a swollen tomato to a more “normal” looking ileostomy! and once the scars heal and your used to having an ileostomy I couldn’t believe how different I felt, my joints stopped aching – I felt like the inflammation had left my body (sounds strange I know) I was no longer tired, I had energy, I didn’t run to the toilet a million times a day! And if I did have a lie in I didn’t have to be woken up at a ridiculous time running to the toilet! The difference is incredible.