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I'm 23, documenting my life with Crohns disease. 6years, 2 surgeries and....?

The whole story...

June 2010 - My First Surgery

We then waited a week or so to see the surgeon privately and talked through what surgery involved and confirmed that an ileostomy was likely, as I was still on steroids and steroids slow down the body's healing process. Also to give the colon a rest for all it had been through. I had accepted an ileostomy and realised that it would be better than being in the bathroom all day long. I just wanted to be better.

We then got a phone call the next day which was the next morning, saying they had a theatre slot the following Tuesday, June 15th at 2.20. We accepted and the nerves and anticipation set in for us all.

On arrival on the morning of surgery we waited nervously for time to come around, both my surgeons came to see me to check my notes and have a chat before theatre. Then the anesthetist came and explained it was a general anesthetics and as I had small veins I would have a line put in my neck to administer medication and fluids, as the IV in my hand would be used for pain relief and would have a catheter into my bladder. I was given a pre-med tablet to help calm me down and wheeled down to theatre where they struggled to get an IV into a vein, 4 attempts later they got one in and instantly administered anesthetic. I then drifted off while holding my Mum's hand.

They removed 1 foot of small intestine and 6 inches of colon along with the cecum, appendix and the join connecting the large and small intestine together.

I then vaguely remember being woken from surgery by nurses and them putting an oxygen mask on my face, and being vaguely aware my Mum and Dad were by my side holding my hand. Helping me with pressing my PCA morphine button for pain relief. The pain was intense, like nothing I've ever felt in my life. The phrase 'being run over by a train' doesn't even compare to how much I was hurting.

I'm told after I was screaming and was held up in recovery for 40 minutes after the 4 and half hour operation was completed, as they couldn't get my pain under control. The morphine made my skin itchy so I was scratching everywhere I could reach, I already have the skin condition Urticuria so this was made ten times worse by the morphine. I also had trouble breathing; I'd drift off to sleep in between bouts of pain and suddenly gasp and began panicking. From the bits of this time I remember it was truly the worst time of my life.

I then awoke after sleeping off most of the anesthetic in the high dependancy room (constantly being monitored, bit like ICU but only me in there). Confused, groggy and on my own, Mum and Dad left at 11pm once I'd calmed down, but I don't remember all of this as the anesthetic was still in my system. I awoke reasonably comfortable and realised that I had had surgery but was too scared to look down to see what state I was in. Pressed my PCA button as pain crept in and fell back off to sleep.

The next day was a blur, morphine made my vision blurred, so I had no clue what was going on and who was there. Apparently, a nurse came in and gave me a bed bath and put me in some comfortable PJ's. I can only remember telling anyone and everyone who came in that I was in such pain. But at least I had my Mum and Dad by my side to help me through it all. A nurse came in to take some bloods.

Day 2 after Operation I was able to start sipping fluids today, but was kept on fluids put in through the line in my neck until I could drink properly. I still had a really sore throat from the breathing tube from surgery.

The physiotherapy nurse came to see me and got me to sit up. I protested against it greatly but had to do it. I was still in such agony. I was more aware on this day and became more aware of the line in my neck and the catheter, which was weirdly uncomfortable. Clear to say I hated every second.

On day 3 I was given a new PCA as I used up all the morphine from being in such pain. But this time was given a lower dosed PCA so I didn't use too much. I was able to swallow this day so they gave me Tramadol tablet for a second pain relief. The itching from the morphine was intense and uncomfortable. I was given Piriton but it only touched it slightly. I was also given a nutritional drink called Fortisip as I still wasn't able to eat. I was aware that my stoma was starting to work as it got rid of blood etc. left from surgery and the gas used to inflate my abdomen during surgery.

By day 4 I was allowed to start eating as my bowels had started to work, so I slowly ate my way through a bacon sandwich. My stoma was becoming livelier now. The physiotherapy came every day to get me to do more and more, as did my surgeons and consultant. They all decided it was time to remove my neckline and catheter so I could be more mobile to walk to the toilet. Both were very unpleasant experiences. My Mum had to help me walk to the bathroom as the morphine made me see double and head go fuzzy.

On day 5 My stoma nurse came to see me to change the bag for the first time. It was horrible, scary and I cried during every minute of it, I didn't want to look at the stoma yet either. I then had my 8 bandages changed on my wounds. I then had to go for a little walk down the corridor; the nurses were pleased with my progress. I also sat in the chair for a while. Needless to say that day was exhausting.

On Day 6 I walked down the corridor and up and down a flight of stairs. And once again it was the time I dreaded, time to change stoma bag again, this time one of the senior nurses did it, we did it in the bathroom. I began having a panic attack cause I was scared. Lucky my Mum was there to hold my hand.

Day 7 came and I had my PCA removed and Mum changed my bag, therefore I was allowed to go home. The stoma nurse came and gave me enough supplies to last till she came on a home visit 2 days later. We waited for my medication (last few weeks worth of steroids, blood thinning injections which were being administered every night by Mum and Tramadol) The car journey home was one to remember as it was so painful, every move or bump the car made my stomach felt it. But I was so glad to be home.

The first few days home were tough, I couldn't sleep comfortably in my bed, so I propped myself up on the sofa and slept there. I was taking both paracetamol and Tramadol for pain relief. I was emptying the bag on my own, and eating small meals. Helen came to check on me on the Thursday after I was home. Changing the bag was very painful, as the stitches were pulling and some had split. I still can’t watch her change it, but can look at it when the bag is on.

I was managing to move a bit better then too. Mum managed to go back to work as my progress was good and I was able to look after myself, although I had to have my Mum’s help to change my bag. She sizes the bag for the stoma, cuts the bag and fixes it on for me, as I can’t do it.

The bandages came off the wounds the next week. Very tidy wounds, which were glued together instead of stitched. There were two 1cm cuts and a 6 cm cut through my belly button and a number of smaller cuts all over my tummy and just under my ribs.

The surgeons told us that it turned out I was a lot more ill than first thought, and it could have been a different story if I hadn’t of had surgery when I did. It was poisoning my body making me so poorly.

There were huge changes in my body after surgery due to the bad bowel being removed, my skin complexion improved, my hair became fuller and healthier. I felt the best I had in a long time at this point, but all that was about to change, again…….


  1. I feel for you. I have been through this too. Is your iliestomy permanent or temporary?
    I don't understand why surgeons insit on a pump for pain when you are out of it! I had the same reaction with morphine..it was awful.
    I wish you the best of luck and healing.

  2. It's temporary! But I really don't want a reversal! Can't bare the thought of going back to how I was!
    The morphine was good but side effects like the itching were awful!
    Do you have a temp ileostomy? Was it for crohns?

    Amy x