MY “NORMAL” BOWEL OPERATION
Online forums are enormously valuable sources of information and support. But sometimes what tends to happen is that people only post their experiences when things have gone wrong or they are worried about something. People don’t post when things go “normally”. This information can be a bit alarming for those recently diagnosed. So, at the risk of sounding dull, I decided to post my experience of having an operation to remove a bowel tumour which seems to have gone well. This account is particularly for people who are about to have their first surgical operation, don’t know what to expect and could do with some reassurance. You may find it excessively detailed, but this is deliberate because there were many little things that happened to me that seemed disproportionately worrying at the time because they were unexpected.
So here is a brief background – I am a 49 year old dude. I have never had a serious illness before and have little experience of the hospital system. After falling ill, a CT scan revealed a lump in my small bowel and my consultant immediately sent me in for surgery. At this point we didn’t know what it was and it was only after analysis that it was confirmed to be cancer. Small bowel cancer is also very rare, but in this case they also removed some of my large bowel as a precaution, resulting in an operation called a “right hemicolectomy”. All in all, I think my operation is comparable to that of large bowel operations and possibly many others.
Admitted to hospital. First meeting with the registrar from the surgery team. He explains that they will use keyhole surgery to insert a camera to have a look round and decide which sections of the bowel need to be removed and joined up. The main risk is that in 3% of cases the join leaks and you need to be opened up again to have a stoma fitted. (If you don’t know, this is the bag used to collect faeces externally when you bowels aren’t working). You will know if this has happened if you experience severe pain and fever after the operation. It sounds terrible to me but the doctor emphasises that it is not a big risk. It sounds strange, but at this stage I ask him if there is any alternative to surgery. He says that there really isn’t. I sign the consent form.
The day of the operation. I have been nil by mouth since midnight and put on a drip to hydrate. I am woken at 6am to stat preparing. The aneathetist comes round at 9am. He says he will use an epidural to numb the local area completely and then after the operation I won’t need morphine which causes nausea. My breathing and heart function will be done by machines.
The registrar comes around to mention that they have decided they cannot use keyhole surgery as the lump is too difficult to access. I should go down to surgery at 1pm, it should last a couple of hours and I should come round by the evening. The main surgeon comes round briefly to say hello.
At 3pm I am finally wheeled down to surgery. In the side room I am fitted with an epidural in my back which I can’t see but is quite painless. Then I go under and dream a very long but unremarkable dream and then wake up at about 7pm in the recovery room.
The recovery room is a bit like a dormatory but with armies of nurses fixing tubes and taking readings. The recovery team are extremely friendly and reassuring. The head surgeon comes over and says the operation went “quite well”. My stomach aches but I am really quite comfortable. There was some talk before the op that I would go back to intensive care for a while but instead I go back to a general ward.
That evening the registrar comes round and explains that they found a second smaller lump in my appendix so they removed that section of my large bowel as well as a precaution, and made a new join from the small bowel to the large bowel. The lab analysis of the lumps will take about 10 days. (The news that there was a second lump alarmed me as it sounded like there was something spreading. In the end, although the lump in my small bowel was indeed cancer, it turned out that the lump in my appendix was nothing at all.)
I am supposed to have a liquid diet so that evening I drink one can of Ensure.
I count a total of 9 pipes running into me – water drip, canula, urinery cafeta, three in neck, down nose to stomach, oxygen mask, epidural drip.
During the night the epidural machine is whirring next to my head and keeping me awake. Ear plugs would have been an idea.
Feel quite good this morning although feeble and tired.
The registrar comes round with surgery team to check up on me. He feels my stomach and says it is nice and soft. No nausea, not much pain. He asks me if I have passed wind but I have only had a couple of vague feelings of bowel activity last night. He says they will remove the epidural and urinary catheter tomorrow. This makes me imagine that without the epidural I will suddenly be plunged into a world of searing pain. But that does not happen.
It is painful to roll over but the nurse gets me to sit up in bed for lunch, which is soft but not liquid. After lunch they get me out of bed to sit in the chair. I manage it slowly. I also try to stand but notice that the numbness caused by the epidural makes it difficult to control balance. Do not try to walk under an epidural!
There is some emphasis placed on getting me to cough as soon as possible to avoid chest infections. This is quite painful but I manage a weak cough, more of a wheeze. In fact, I realise that the abdominal muscles are involved in so many bodily movements that even reaching out with my arm can cause discomfort. Laughing is a little painful, coughing more so and try not to sneeze until at least 2 weeks after such an operation. If any of these happen it helps if you hold your hand gently down on your wound area at the same time, to stop it jumping around too much.
I experience a lot of pain on my abdominal muscles when trying to sit up to get out of bed, etc. So I adopt a technique I learnt in yoga many years ago. It simply involves rolling over onto your side and then pushing yourself upright with your free arm or arms. If you roll over to the edge of the bed you should be in the right position to sit up while your feet can swing down onto the floor.
That evening I get some stomach pains and feel a little hot. Immediately I start to worry that the join is leaking and I will have to live with a stoma for the rest of my life. But then I take 2 paracetamol and feel fine again.
The registrar came round and said he was going to leave the epidural in and try to get me walking. I told him the numbness made that dangerous so he decides to take the epidural out today. He says they took out about half a meter of my small bowel, which sounds a lot but you have a total of 6 meters and you can survive on as little as 1 meter.
The nurse removes the epidural and urinary catheter. By the afternoon I am on tramadol to control the pain.
After lunch I feel a little wind coming but then have my first bowel movement on a sanitary pad on the chair. The registrar had said this might take 5 days so it comes as some surprise. Then I take my first shuffling walk to the toilet and have another. In fact I have two more that day and also manage to urinate. I am feeling very proud.
The nurse tells that that the surgeon has heard that I have been walking and having bowel movements and has said I should go home tomorrow or the next day at the latest. This becomes a cause of concern as I am living on my own and can only just about shuffle across the room, probably too weak to cook, etc. But nowadays once you have a bowel movement and show you can walk to any degree they are pushing you out the door. The registrar comes round again and I explain my concerns to him. (He had originally said I would expect to be in hospital for 7 to 10 days). He mulls it over.
In the evening my consultant comes round. He says he will ask them in his report not to rush me home. (This seems to make a difference and in the end I go home in 5 days instead of 3 or 4).
The pain gets worse so I have an ibuprofen, paracetamol and a tramadol. This works but causes nausea so the nurse gives me cyclzine. I am introduced to the concept of taking more drugs to cope with the drugs I am already taking.
Put on phosphate drip and vitamins for nutrition. Apparently my electrolytes are a bit low so I have fizzy tablets. I lost a lot of weight during my illness and probably a bit more during this operation so I need to start eating as much as I can, high protein and high calorie.
I take a tramadol in morning as pain increases but the nurse tells me I am taking them in the wrong order and should start with the weaker ones like paracetamol and work up to tramadol if I need to.
I ask a nurse about social services if I am sent home today and need help, but she says that is only for people who are completely bed ridden. I am learning more about the need for care in the community.
My father comes to visit and says I can stay with him for a while and this is in fact what I end up doing in a couple of days time.
In the afternoon the nurse changes the dressing on my wound. This is the first time I have seen it and I really have to force myself to look. It looks horrible, like a 6 inch railway track with big metal staples going down from what used to be my belly button to my crotch. Flashing forward a few months, although my dreams of becoming a swimwear model are over, the scar will look far better, sometimes like no more than a crease in the flesh, so its appearance today turns out to be unnecessarily alarming. Afterwards, the nurse gets me to walk a lap around the ward which I surprise myself by doing.
The head surgeon drops by in the evening. He says how well I’m doing and is good at filling you with confidence. He says to eat small meals more often but that I can eat anything now. (This turns out to contradict most other advice which is that I should stick to low fibre meals for a few weeks). I ask him how completely I can expect to recover and he says 100%. I am truly amazed to think that you can cut someone up, stitch them back together again and they can be up and about in a few days. And human beings have been performing surgery for thousands of years…
The surgery team come round and start talking about not rushing me home immediately. (This sounds like the effect of the consultant’s report). They will send me home tomorrow morning, although with all the discharge paperwork that will probably mean the afternoon. I tell them I feel more nausea as the day progresses. A doctor explains that this is because the join is still swollen and it takes until morning for the previous days food to pass through.
The pain doctor comes round to warn me about the risks from where the epidural was fitted. This mainly amounts to keeping it clean and keeping an eye on it.
My bowel movements are now becoming increasingly watery. I tihnk this is because all the waste from when I was constipated before the operation has now passed through and my large bowel is still getting used to extracting water now that there is a bit of it missing.
There was bedlam in the ward tonight as one patient after another got into problems. Couldn’t get to sleep. Now looking forward to going home.
In the morning the doctor comes round to tell me they will arrange all the medication I need to take home and the discharge paperwork. When the results of the lab analysis come through there will be a “multidisciplinary team meeting” and I will get a call to discuss it at the clinic. There will also be a follow up meeting with the surgery team to check the operation itself “a little later down the line”. (This turns out to be 5 months down the line).
The nurse explains I must book an appointment with my GP to take out the staples in about 7 days time. She gives me a load of meds that include painkillers like tramadol, the anti-emetic cyclizine and metoclopramide to protect my stomach from the effects of the other meds. She also gives me a whole sack full of Ensure liquid meals to help build me up. I will try to drink one or two of these a day in addition to normal meals.
At this point I realise that I was not given the contact details of anyone to call if there were any problems. It is unfortunately the case nowadays that the patients themselves often have to drive the medical process, remembering to ask questions such as who do I contact if there is a problem (your specialist nurse), what diet should I eat (you could see a dietician), how do I take care of my dressings, etc. Which is where online cancer forums can help, although all this information is very important and should be provided by the hospital without having to know what to ask.
This afternoon my father picks me up in a taxi. I plan to stay with him for a few days although end up staying for just over a week.
I am now having as many as five watery bowel movements a day. The watery ones are harder to control and in the evening I cannot get to the toilet in time and soil my pants. Fortunately this will only happens a handful of times over the first two weeks until things start to firm up. But it can make you feel like an incontinent old man.
I am woken up early to have watery bowel movements, sometimes as early as 4am. This continues for about a week but is mostly controllable. The amount of water passing this way means that I am not urinating very much, but I think this is normal.
Every day I go for short walks. Some days I am more mobile, some days there is more discomfort and I have to cut it short. I discover it’s important not to overdo exercise as it just leads to unnecessary aches and pains. Probably half a mile per day is ample.
During the first couple of weeks I am also sleeping a lot, not so much at night but dozing off for an hour in the morning and in the afternoon.
I notice that I am not putting on any weight yet, although I am now eating quite well. I lost over a stone while I was ill. The surgeon did say that it would take weeks to start putting on weight. It actually takes me a couple of months to put even half that weight back on so don’t expect fast results. It may help to see a dietician although I did not.
First signs that my bowel movements are becoming less watery.
I also skip some of the painkillers I usually take and remain quite comfortable.
This morning while sitting on the toilet, I discover a discharge coming through the dressing of my wound. When I pull back the dressing there is pus steadily oozing out of one or two places. I also see two areas along the wound are reddened and swollen, and feel firm instead of soft. This looks quite alarming and I suddenly imagine that the operation has gone wrong and my belly is about to burst open and spew my guts onto the bathroom floor. But this does not happen.
I make an appointment to see my GP that afternoon. He confirms it has become infected, cleans it up and prescribes anti-biotics. He takes a swab to be analysed in a few days to see if it needs more specific anti-biotics. Apparently I have a slight temperature which I hadn’t felt. He said to try to squeeze the pus out whenever I could, not to let it “brew”. I asked him if it would still be okay to take the staples out which I had booked for 2 days time and he said to play it by ear.
The wound infection already looks better. But in the event I postpone the staples removal and it is performed at the hospital in a couple of days time when I am called in to discuss the lab results.
Wake up feeling more mobile today, with less discomfort. The registrar had said that I would feel significantly better after 2 to 3 weeks, so this is early. A sign that things are on the mend.
This is the day I went to the hospital to get the results of the lab analysis which was unfortunately bad news. But that’s another story. The nurse removed the staples today and covered the wound with lots of dressing. I asked her if I should remove them to clean the infection but she wasn’t too keen as removing the dressing too often tugged at the wound. She said that the dressing would just fall off in about 7 days.
All in all there was not much advice from the hospital about how to care for the wound post op. I would say in hindsight that one should change the dressing about every 2 days before the staples come out, to make sure it is clean and free of infection. Then once the staples are out less often but try to at least have a look to make sure it’s healthy.
I change the dressing today. I am relieved to see that the wound looks fine. Still a bit sore though.
My bowel movements have got firmer today and consequently a little harder to pass. At this stage I start to get lower abdominal pains before a bowel movement which can be uncomfortable. This will last for a couple of weeks or more and seems to be a normal stage. I am now having an average of 3 bowel movements a day, sometimes more. I always used to have 2 movements a day so this does not seem like a huge increase.
First time I got out in the evening since the operation. All goes well as long as I don’t overdo it.
Some time during this period I also decide to take the dressing off for good. It was getting very itchy at night, probably the warm weather didn’t help. It feels like a great relief.
With the dressing off, there is now a little uncomfortable friction of the wound against my waistband, so I wear my softest cotton underpants and keep my trousers as loose as possible.
Today I try doing some proper weights exercise for the first time. I do a set of squats and a set of bench presses and then run out of strength. Afterwards I feel slightly dizzy and my wound and my back ache which continues for a day or two. So this is too early for serious exercise.
This is the day of my first appointment with the oncology team. They also examine the wound which seems fine. They are slightly concerned that I have only put on a kilo or so in weight since the operation. But I am feeling much stronger and less tired so I am not too worried myself.
Today I woke up feeling yet more mobile.
Tried doing some exercises and found I could do some press-ups and some squat-thrusts. Afterwards I did feel sore inside so don’t overdo it.
Started going out to events in evening. Things went okay. Had to go home early and it caused some stomach aches but I think it’s okay as long as I do not push things too much.
Today I get some abdominal pains and my bowel movements are a little looser. This is also the week when the summer heatwave starts and I suspect it might be the cause.
Today I woke up feeling better again. I found I could now jog up the road and ran for a bus. In the evening I did some press-ups and felt no ill effects afterwards. This seems to be the pattern – you progress by plateaus that last a week or two, then quite suddenly you feel an improvement.
The doctor had said it would take 2 to 3 months to recover fully and although this is not a full recovery as such, I think this constitutes a significant recovery after a little less than 2 months. I am still having three bowel movements a day and some abdominal discomfort but these seem quite mild. I am now eating more or less normally, have a good appetite and have put on about half the weight I lost. So this seems like a good point to end this account of my “normal” bowel operation. Major bowel surgery is not something I would recommend, but it is successful for most people and I hope my account will give some reassurance, even to hypochondriacs like myself.