COLORECTAL APPOINTMENT

Warning – graphic medical details

This blog post is primarily for my own benefit, to remind me of exactly what happened, what was said, and what to expect in the coming weeks. However, I have made it public because it just might help someone else in a similar position to myself.

Today, at long last, I had an appointment at the Exeter hospital. I was initially referred to them by our local hospital back at the end of 2018 after my second parastomal hernia repair in the spring of that year had failed. That operation was major, and two weeks after discharge, I was back in hospital again with sepsis caused by a large infected haematoma in my abdomen which nearly killed me. Within months the hernia was back, and my surgeon referred me to the specialist colorectal unit in Exeter.

I saw the surgeon there in April of 2019 and he ordered a CT scan. Due to the inefficiency of the hospital, I was lost in their system for months and eventually, not having heard anything, I contacted them and they informed me that the surgeon had not even seen the result of the scan. I saw him again in early 2020 and then Covid hit, and everything shut down. Time dragged on and on, and I got letters periodically, informing me of the long waiting lists, and sometimes asking if I would like to have my operation somewhere else in the country, and I refused these offers because the whole idea was quite impractical for me. Last April I was due to have the operation and got as far as the pre-assessment appointment, and then the operation was postponed, and we were again back in the waiting game, getting periodical letters offering me surgery elsewhere. I had more or less given up on anything ever happening.

Then I was informed that the surgeon who had seen me had disappeared – no explanation; it wasn’t explained that he had actually left, but they did not know when he would be returning. I was offered the option of seeing his colleague, who also specialises in complex colorectal cases, and I readily agreed, having waiting far too long already.

My appointment was this morning. We arrived after a very early start – it is far less convenient travelling to Exeter when our local hospital is literally 10 minutes away from home, and we had the rush hour traffic to contend with.

The new surgeon, Mr. Smart, was very charming and friendly and we had a first-class dialogue. Each surgeon has his own ideas and different approaches, of course, and Mr. Smart mentioned to me various things that had never come up before. He said he wanted to be 100 percent thorough, and would not think of applying a knife to my abdomen until he was satisfied that he had all the information he needed.

After examining my abdomen he said that he could feel that things had changed since the last CT scan, and he would like me to have another. He said that there was evidence that I was likely to develop an incisional hernia in addition to the parastomal hernia – where the long vertical incision had been made in my abdomen to remove my colon back in 2015, and which had been opened up twice more since then.

He informed me that the hospital had now gone over to a digital record keeping system, something I was already aware of, and he said that a lot of physical paperwork had disappeared – it could probably be found but only with an effort. He needed me to fill him in with various details, which I willingly did. He was particularly interested in the fact that before my colon cancer, I had been diagnosed with ulcerative colitis and was taking medication for this for 18 months. He said that he was eager to obtain the histology results from the colon and would be contacting Torbay Hospital for these details. The nature of the particular inflammatory bowel disease would affect how he would approach the problem. If it were indeed ulcerative colitis, the problem would have been removed with my colon, but if it had been Crohn’s colitis, this could still be affecting my body in different ways, even if the actual inflammation had been confined to the colon. He said there were various other kinds of colitis which could also have an effect and he needed to be sure of the exact nature of my inflammatory bowel disease.

He asked if they had “removed my bottom,” i.e. closed my anus, and I informed him that I had been left with a short rectal stump of about 1.5 to 2 inches in length. Mr. Pullan, my original surgeon at Torbay, had been reluctant to remove everything and close it up because this is an unpleasant operation with a long recovery period and it can be very painful, and I was happy with his decision. I have had some problems with mucus build-up; initially, in the summer of 2015 when I was undergoing my chemotherapy, it got so bad that it became impacted and infected, and it had to be cleaned out under general anaesthetic. Since then, it has been a mild problem where every few weeks I can feel something there, and over several days I am able to evacuate it. Mucus is produced throughout the length of the colon in order to ease the passage of the stool and lubricate everything, and this secretion continues even when what remains of the colon is no longer attached to the small intestine and waste is evacuated via the stoma. For some people who are left with some considerable length of colon, this can present a problem, and the surgeon can form a mucous fistula, a small second stoma, to deal with this.

Mr. Smart was concerned about my rectal stump. He said that since ulcerative colitis was high-risk for the development of colon cancer (of which I was aware, and which had happened to me), the risk of cancer remained in the rectal stump. He would therefore arrange for me to have a flexible sigmoidoscopy so that he can take a good look at the rectal stump and also take a biopsy. If there is any sign of pre-cancerous tissue, he will need to remove the rectal stump and close my anus, and this would take place at the same time as the hernia repair. If this were not done, and he had closed off my abdominal wall with mesh, and I subsequently developed cancer in the rectal stump, this would present a serious problem. I said I was not aware of any symptoms and he said this was quite normal; in fact I had not been aware of any symptoms of my colon cancer either, and that diagnosis came as a total shock to me, despite having been warned when the ulcerative colitis was first diagnosed that this put me at greater risk of developing cancer than the normal population.

I asked about the time frame of what was planned, explaining that I had recently had my first cataract operation and was awaiting the second, which could happen any time now. He said that would not be a problem and the two procedures would not take place at the same time, because what he was planning would take longer than this, and my cataract would be fully dealt with by the time he could contemplate my surgery. Getting the information from Torbay Hospital would probably take less than a week, and he said the CT scan wait would not be too long. The sigmoidoscopy may take a little longer. He couldn’t give me any definite dates, of course, but he said that once all these things had been achieved, he would call me in and he would inform me of the results, and we would then be able to have a risk-benefit discussion about the surgery itself.

Obviously if there is a problem with the rectal stump, he would definitely want to go ahead with the surgery and repair the hernia at the same time. However, if all was well in that department, we would have to decide what would be the best course of action regarding the hernia. He said that they have learned a lot since my initial surgery, and even since the last operation in 2018. Statistical research throughout the NHS over many years has proved that however good the repair, 100 percent of parastomal hernias will recur. This was news to me. He said that the time this took to happen would vary, and it was quite likely that I would die of old age before it happened in my case! He said that recurrence of the hernia was not regarded as a “failure” of the operation, but an inevitability, and that if it happened with me, he would invite me back and crack open a bottle of champagne with me, to celebrate the fact that I was till alive to witness its recurrence! I told him to put it on ice right away.

The main reason for undergoing surgery was to improve the patient’s lifestyle. He asked me to tell him, on a scale of 1-10, my pain level, and also how much it was affecting my everyday life. On both, the scale was pretty low. I am managing very well, and only have occasional pain. The main problem is the inconvenience, needing to change my stoma bag much more frequently than most people, because of “pancaking,” when the output collects around the stoma rather than droppng down into the bag, and forming a flat “pancake” which seeps under the flange of the bag and causes skin irritation. This happens frequently with me, and to prevent it as far as possible, I am changing my bag every other day, or 3-4 times a week, and this can be more frequent if I am getting these leaks.

Mr. Smart said that because I had already been opened up a number of times, what he would be doing would be major surgery and would be more serious than before, partly because until he got inside, he would not know what he was dealing with (the existing mesh, for instance), and also, each time you have invasive surgery, the body responds by creating adhesions, a form of scar tissue, which need to be removed. The very fact of going in again will cause more of these, and they have the effect of “glueing” the loops of intestine together, and this can cause motility problems. Any operation under general anaesthetic carries risks, and these have to be weighed against any potential benefit, and if the benefit is small, as might be the case with me, it might be a wise decision not to go ahead with the surgery at all.

At a previous consultation several years ago I expressed a fear that the hernia might cause another obstruction, which I would obviously want to avoid. This is a life-threatening condition if not promptly dealt with, and could involve emergency major surgery, as happened with me back in 2017. By the time it was done, several days after the obstruction began, because of delays in getting a CT scan to identify the problem, I was quite weakened and feeling very poorly indeed, which is not an ideal state for someone to be in when facing major surgery. I was told that small hernias (which is what I had at that time) were more likely to cause obstructions than big ones, and my complex hernia is quite large, so this may not be a risk factor. I forgot to ask about this today, but can always raise it when we have our risk-benefit discussion.

I also asked about the mesh that Mr. Pullan had inserted back in 2018. This was made from collagen derived from pig skin. He said that things had moved on quite a bit since that time, and he now preferred the latest variations of synthetic mesh. He said that because the original mesh I had was organic, and very much like the human skin they used to use for this purpose, it would gradually have been replaced by my own collagen, just as one’s skin is constantly being renewed.

I asked what sort of mesh he would be using, and he said that very much depended on the results of his various investigations – the histology results of my colon, the CT scan and the sigmoidoscopy. Certain meshes do not do well with people who have, or have had, inflammatory bowel disease. This IBD has made things more complex than if I had had a straightforward colon cancer with no other associated disease. He would not know which mesh was best until he had all the information he is seeking.

All in all, it was a very fruitful and beneficial appointment and I do feel encouraged that Mr. Smart is being so thorough, and also that things are moving ahead at last – it has been far too long a wait which should never have happened. Things might have been a lot less complex had this been dealt with when it should have been, back in 2019.

He thanked me for coming to see him! I thought that was very gracious, since he is the one doing all the work! He said that what I had told him at the beginning of the visit was very helpful in filling in some of the gaps in his knowledge from just looking at my notes, and gave him more information on which to make the initial decisions about the investigations he now requires to be done.

The nurse, Sarah, who sat in on the consultation, was also extremely charming and friendly and we had some good laughs together. As I left Mr. Smart, she took me to be weighed and measured. I have gained some weight since I was last at the hospital, and Mr. Smart said he always recommends people to try and lose about 5 kilos if they can, before surgery. Time to take myself in hand again! Anyway, after she had weighed and measured me, she said, “Would you like a hug?” I readily agreed! What a sweetie.