Surgery: Right hemi-colectomy and two small resections of my sigmoid colon by mid-line laparotomy (open surgery) on 29th March 2012
In the summer of 2011 I was unwell while on holiday in Portugal. What started out as a bad flare up with relentless diarrhoea became an obstruction. This lasted for two day during which I was in a lot of pain, could not eat and vomited if I drank even small amounts of water. Thankfully, I did not need hospital treatment while I was away and recovered enough to get the flight home.
On returning I visited my gastroenterologist who could feel an obvious and firm mass over my iliac fossa and I was immediately booked in for an emergency MRI scan. The scan showed numerous problems including thickening of the wall of my bowel, fistulas and stricturing. Although I would say that these problems had been present for a while, certainly since 2005 when I had a barium meal and I had been in reasonably good health and was largely asymptomatic, my gastroenterologist referred me to a surgeon. Initially, as I was now feeling a bit better after a heavy dose of anti-biotics, I thought my surgical referral was just a precaution in case I had any future more serious problems. Despite what the MRI had shown, I did not think I was that unwell and was reluctant to consider surgery.
As this was on the NHS and it was not an emergency case, it took a few months to get an appointment. When I finally met the surgeon in January 2012, the message was clear, I needed surgery and it needed to be done in the next 3 months. This was a bit of a shock. Luckily, my company medical insurance would pay so I could pick the date and hospital at my convenience. During the period from July 2011 to January 2012, I had started to keep a diary of how I was feeling every day. This revealed that I was feeling unwell to some degree almost every day and I was kidding myself that I was ok. What I had become was well adapted to the issues - I chose what I ate carefully, I had learnt to deal with the fatigue and numerous trips to the bathroom. Luckily throughout all of this, I was largely pain free.
Having just booked a skiing holiday for the first time in 5 years for my 40th birthday and the first one with my children (aged 4 and 2) for the first week of March, I decided to book a surgery date after my holiday. As it turned out, the skiing holiday just confirmed I needed to get on and have the surgery as I was either fatigued or in pain for most of the week and could not enjoy it fully.
So, on 29th March I entered hospital for surgery at 7pm. Before the procedure, I knew the surgery could not be done laproscopically due the size of the fistulated mass that needed to come out. I also knew there was a risk I would need a bag after the procedure. I had discussed this with the surgeon who made it clear that it would be temporary and he would do all he could to avoid giving me one. That risk became more of a certainty when I entered the hospital and was introduced to the stoma nurse who marked me up for a stoma positioned just above my belt line. At this point there was the possibility of a colostomy or ileostomy due to the issues that were shown on the MRI scan.
I went down to theatre a little later than expected at 7.30pm. The last thing I remember is the strong smell of alcohol and the cold feeling of the anaesthetic running up my arm. I'd had surgery on a few occasions in the past (hernia, perianal fistula repair) so I was not unduly concerned about the process. The next thing I knew I was in the ITU/high dependency unit and the surgeon was talking to me. “It’s midnight John, the surgery was slightly more complicated than expected, but I am happy that it has gone well. You have a stoma.” I clearly remember those words as I dozed off into a morphine haze.
I later discovered exactly what had been done and
why. The large fistulated mass in my ileum and strictures in my ascending colon meant that I had a right hemi-colectomy with about 30cm removed. Additionally, two fistulas from my ileum had penetrated my sigmoid colon requiring two small sections to be removed. My ileum had also adhered to my bladder, but not penetrated it. Had I waited much longer, things could have been even worse, which I think is important to remember for anyone who is uncertain about having surgery, these problems cannot be fixed by medication alone. I was given an ileostomy as it gave my colon the best opportunity to recover and eliminated the risk of internal leakages. I am happy it was the right decision, even though no one wants to have a bag.
The next three or four hours after coming round were not pleasant at all. I had a lot of pain from my bladder which was very full as the catheter was not draining properly. A large drain in my left side connected to a JVac was also poking something painfully. Not to mention the incision and the spasms my stomach muscled kept going into. I remember screaming out in pain. Really, really yelling and getting told off by the nurse for making so much noise. It was the worst pain I have ever felt. I guess this would be a 9 on the pain scale. Thankfully, a bit of fiddling with the catheter and drain, some slow deep breathing and a big, continuous dose of morphine got me into a much better state. The pain was awful, but it was short lived and quickly forgotten.
At this point, I had a central line in my neck, another IV line in the back of my hand, a catheter, a JVac drain, oxygen via PAP and morphine via PCA. Although I was getting fluid through IV, the dry oxygen going up my nose was making my mouth dry constantly. Every hour or so I had to call the nurse to give me water and since I was nil by mouth, all I got was a tiny amount on a sponge. As I lay there full of morphine, I already knew that I felt different and was feeling better. Knowing that I could feel the benefits of the surgery that early even through the obvious pain really helped me and spurred my recovery.
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30th March) The following morning I was visited by the physio. This was torture. I had to do two things, get out of bed and sit in a chair and blow into a contraption 10 times to ensure that I was breathing deeply enough to properly exercise my lungs. This does not sound too bad, until you realise there was a catch, I had to do a deep breathe that made me cough. Coughing was so unpleasant I initially refused to do it, but thankfully shortly after the physio left I managed to cough the bloody goo caused by intubation out of my lungs which was the desired outcome. If you are every asked to cough, remember to hold a blanket or pillow firmly against your incision, otherwise it is going to hurt like hell!
I actually managed to sit in a chair for two and a half hours, but most of that was spent in morphine induced sleep. During that time, my wife visited me, but all I managed to say in an hour was “I want to go back to bed!” She is a doctor (accident and emergency medicine) and told me afterwards she was actually quite shocked at how bad I looked and she does not shock easily.
After 24 hours, I was still not that comfortable, so spent a second night in the high dependency unit being constantly observed by nursing staff. By now my pain was under control and I was a lot more comfortable due to having an eye mask and ear plugs. The high dependency unit can get quite noisy (as I proved with my pained shouting) and the lights are always on and very bright, so this helped me to get some better sleep. I had a visit from the stoma nurse who changed my bag. She asked me if I wanted to watch what she was doing, but I was not ready yet to look at my stoma so just closed my eyes.
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31st March) The following day the physio visited again and this time I had to walk to the end of the ward and back. Not a long walk, but still quite a challenge. I was now in better shape, so was allowed into a normal room on the ward. Luckily, I had quite a nice private room with TV, wifi and en suite bathroom. I also got my possessions back including my iPhone, so started responding to all of the text messages wishing me well.
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1st April) At this point, I still had a lot of pipes in me, so it was relief to have the first one removed – the catheter. I was still occasionally using the morphine PCA, but quickly was coming to the conclusion that I did not like the effect it was having on me. I was now allowed to drink small amounts of water and was offered a cup of tea without milk. Drinking was difficult as my throat was very uncomfortable, probably from having tubes shoved down it and I had absolutely no appetite at all. I felt sick from time to time, but this I was assured was just due to the IV antibiotics (metronidozole). My bowels still had not really woken up, so I was encouraged to get up on my feet by the physio and walk up and down the corridor. This I managed quite well.
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2nd April) After quite a good night’s sleep, I decided to get up and have a shower. I managed to sit on a stool in the shower complete with Jvac at my side and have a shave and brush my teeth which made me feel much better. I put on pyjamas for the first time rather than a surgical gown which also felt like a good step forward (as I no longer had everything hanging out!). My physio challenge for that day was to walk up and down stairs which I managed quite easily. I did not see the physio again after this as I think they were now happy I was on the road to recovery.
At this point, my bowels started to wake up and dark greeny/black liquid began appearing in my bag. I was now therefore allowed to eat, so had some jelly and clear chicken broth. Eating was a huge challenge, but I managed a few mouthfuls of jelly and the rather revoltingly salty chicken broth made me feel quite good. At this point, I made an error. I started drinking quite large amounts of water without anything added to it. That night my stoma ran like a fountain and I was up every hour or so to empty it. Do not do this!
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3rd April) After a rather bad night’s sleep, I felt rather tired and down. This taught me another lesson though, you need to be patient with your recovery and need to expect to take some backward steps. Later that day, I had a visit from a work friend which really picked me up. He was surprised at how well I was doing and that I was able to get out of bed and walk around. I still had no appetite and was getting bad indigestion. Thankfully though, I was advised not to drink plain water, but instead to drink sports drinks (lucozade) that include salt or diarolyte. The presence of salt enables absorption in the gut and this produced the desired result, I needed to empty my bag only once during the night and with the aid of a sleeping tablet had quite a good night.
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4th April) By now, I was completely free of IV lines and the JVac drain was out. Having the JVac drain removed was painful, it felt like having a knife pulled out of my stomach and although I did not look, I could tell it was quite a large tube from the hole left hehind. I continued to struggle with eating. The low residual diet menu in the hospital was poor and the food was not well cooked. I tried a basic pasta dish, but could manage no more than a few mouthfuls. I knew I needed to eat, but I had really no appetite at all. At this point, I decided I would be better off at home. I was not in a lot of pain, I was free of all lines and I did not need any nursing care. I was also missing my wife and kids like crazy, so I asked my surgeon if I could go home the next day. He said if I thought I was ready I could go.
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5th April) Walking out of the hospital and a 45 minute taxi ride home made me realise I was still very weak. After not eating properly for nearly a week, I was 5kg lighter and clearly had lost muscle mass on my arms and legs. That evening, I ordered my favourite meal from a local Japanese restaurant (
chicken katsu bento) and my appetite came back with a vengeance. It was rather odd not being able to eat salad, but you quickly adapt.
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6th April) After a good meal the night before, I was feeling excellent. Really, really good, in a way I had not felt in many years. At last I was really starting to feel the benefits of the surgery. So, I went out and mowed the lawn! Maybe not the smartest thing to have done, but it was not that strenuous and made me feel good that I was making progress. At last, things were getting back to normal, I was starting to eat well and my pain was being controlled with regular paracetamol and a couple of tramadol per day.
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7-14th April) The first week at home was spent getting used to having a bag and catching up on a lot of TV and reading. After one visit from the stoma nurse I was comfortable with changing the bag myself, including cutting it to size. I have had a few leakages, but I feel confident I know when things are ok and when problems are going to happen. Later in the week, two weeks after surgery, I had my staples out. There were 42 in total and for some reason, this was extremely painful. Having them removed did bring me some relief however as they were starting to feel very tight and I was able to walk much more freely. On 13th, I walked about 2 miles in total, but it was not comfortable and I was exhausted the next day.
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16th April) I had the stitches removed from my stoma and my wounds are healing nicely without any dressings covering them. I occasionally take paracetamol if I feel any pain, but this is mostly due to a rather nasty rash around my stoma. I am starting to feel ready to go back to work, the two biggest obstacles are fatigue, I doubt I would get through a whole day, and the discomfort I have from my incision which is improving every day. Luckily, I am not expected back in the office for at least another two weeks, so I can enjoy some rest and recovery time at home.
In summary, my surgery has been a very
positive experience. If you are concerned or wondering about having surgery, particulary if it is an open procedure, do not hesitate to drop me private message.
