The first operation I had is known as a subtotal colectomy, meaning that my entire colon was removed, however my rectum was left in place. The type of ileostomy I had formed is known as an end ileostomy, meaning that the end of the ileum is pulled through an opening of the stomach – the picture on the right shows how my digestive system looks after that surgery!
When your rectum is left in place, it usually means the stoma created is on a temporary basis and can be “reversed” or “taken down” when the patient is fit for more surgery. However, it also leaves the option of making the stoma permanent later on.
The rectum itself has an important job within the digestive system. Not many people know what it really does (other than holding poo), but it’s actually kind of interesting.
The rectum is essentially a big pouch. It holds your stools after they’ve left your colon, and when your rectum is full, that’s when your brain gets the message that you need to go and do a number two. However, those who have active inflammation in their rectum have ulcers in the lining of their rectum, which can confuse the messages to the brain about needing the loo. Hence the frequent and quite urgent toilet visits as your rectum doesn’t really know what it’s doing!
The rectum also produces mucus.
The rectum is the penultimate part of you GI tract so by this point anything that started off as food is usually quite thick as it’s been broken down by the stomach and small intestine, and then it has had the water removed by the colon. For this reason, your rectum produces mucus so that when you need to do a poo, it helps you to push it out. When your rectum doesn’t produce enough mucus, this is when it can hurt when you’re doing a poo as the mucus is the bodies natural lubricant. Kind of gross but equally fascinating.
In those who have had a subtotal colectomy, as mentioned previously the rectum is left in place. The rectum will continue to produce mucus – this doesn’t stop just because stools no longer pass through. Anyone with a stoma who has their rectum still, will need to pass this mucus, so they will still feel the need to go and do a number two. However, it won’t be poo that comes out, it will just be the mucus, which can be anything from grey to snot coloured. Some people need to empty their rectum once every two or three days, some three times a day. It just depends on how much of the rectal stump is left in tact. The reason for needing to go to the toilet is because the rectum is filling up with mucus, which then sends a message to the brain telling you that you need the toilet.
However if there is an active flare in your rectum (or anus if you have Crohn’s Disease) then you will be passing blood, along with the mucus and it can be painful. This is because the lining of your rectum is ulcerated and literally peeling away. A bit like a period from your bum – oh the fun. And just like a period, there will also be cramps, because the inside of your rectum is covered in ulcers. It’s the lining of your rectum being ulcerated and peeling away that confuses your brain and makes you think that you need the toilet when really you don’t. Which is another reason why even though some people have had a total colectomy, they still need to sit on the toilet.
I’d post a picture of my own scope to show what my insides actually look like, but I am still waiting to be sent them. Instead, imagine what a cluster of ulcers looks like in your mouth… Now imagine having 30cm of that, up your bum, all the time. Yeah…
For some people, like myself (apparently), the flare in your rectum can be untreatable. I have been told that no amount of medication will get rid of the active colitis in my rectum. Therefore, my only option is to have my rectum removed which, along with the fact I’ve had a subtotal colectomy, is known as a proctectomy.
As said previously, having my rectum still inside me is what classes my stoma as technically being temporary. It is the removal of it which will make Sally a permanent addition to my life.
Last year, I’d been with the guy I was dating for just over two years and he was talking about marriage and kids, which in all honesty freaked me out a little bit because I was 22 and I couldn’t think that far ahead. Forever is a very long time. But now I’m having to think about forever, because that’s potentially what we’re talking about. Having my stoma forever.
Having my rectum removed would get rid of the flare I am still in, it would also mean I am in theory “cured” from Ulcerative Colitis, as there will no longer be any parts of my digestive system which can be affected by the disease. However, I will live with the other effects of the disease for the rest of my life, as I unfortunately cannot regrow a colon or change my DNA…
Having my rectum removed and my stoma made permanent is another major operation which itself has many risks and then there are positives and negatives to having this type of surgery.
For me, the main thing which is making my keep my rectum is that I want to have children one day.
There is no solid evidence that having a protectomy may affect my chances of conceiving naturally or carrying a child to full term, but there is no guarantee either.
Not many people realise how close your rectum is to other organs. This makes the risk higher of adhesions causing complications after surgery. I am already suffering with adhesions on my small bowel, which means part of it has stuck itself together. Because of how close the cervix is to the rectum and site of surgery, this can mean that adhesions can cause havoc with the female reproductive system.
Although there is no evidence to suggest having a permanent stoma affects fecundity, it is something I have to think about as I know I want children.