Living without a rectum

This article is Copyright © 2013 by Chris Blackmore. You can put copies of it anywhere you want to, if it will be useful to people, but it belongs to me. If you have improvements or corrections, please email them to me at NoRectum@doctor-dark.co.uk - No, I'm not a doctor, that's just my domain name, which comes from a song by Captain Beefheart.

Let's get this out of the way, now. Altogether now, eeeewwww!

Right, we got that out of the way. This is about living without a rectum, and if that's not you, you don't need to read it. You might not need to anyway, but if you do, here it is. I wrote this because there were things I needed to know after my rectum was removed, and I couldn't find it online.

Most people have a rectum when they are born, and go to their doom still in possession of the thing, and most of them will not spend much time thinking about it.Yet it's an important organ, with more than one function:

• It acts as a reservoir for (what shall we call the stuff?Let's go for the comparatively inoffensive poo, avoiding shit for being vulgar, faeces for being too technical, and stools for being a word only doctors still use) poo. Poo waits there in the rectum until you excrete it. Usually.
• While the poo is in the rectum, moisture is removed from it, so it is more solid than it was in the intestine, which you would know all about if you have had to deal with a stoma. The rectum has cunning muscles that can get a grip on the more solid poo, and launch it, usually when you have decided to.
• It very cleverly separates farts (imagine we just chose that word instead of wind, which is for sailing, or flatus which is too technical, in the same way we chose to say poo) from poo, so you can usually let rip a fine fart without letting the poo fly as well.
• Some homosexuals think it is a sex organ. I'm not offering an opinion about that, but I would strongly advise anyone who thought theirs was, and now doesn't have one, to seek medical advice if you are thinking of letting anything in through that exit.

Why might you be faced with living without a rectum, then, if they are so useful?

I am sure there are all sorts of scenarios I have not thought of, but the single most common reason for removal of the rectum is bowel cancer. That's what I had. It was at the earliest stage, excellent surgeons removed it, and I don't have cancer any more. But, as the cancer was only 7 centimetres from my anus, the surgeons had to remove all of my rectum, and connect my large intestine directly to my anus. While all that healed, I had a temporary stoma, with a colostomy bag. That wasn't very nice. But I dealt with it, and have more or less forgotten it, because you do forget nasty stuff if you can. I won't be writing advice about dealing with a colostomy because there is a lot of advice already around, and it's easy to find. If you need the information, the hospital is going to offer it to you, in any case.

But there didn't seem to be anything specifically about living without a rectum, though my searches must be the reason Google gives me some fairly strange advertisements at times. There are a few more sites around than when I first looked, but a lot of searches will just give you unanswered questions people have posted.

Basically, the hospital had two pieces of advice:-

• Walking around the wards will get your gut working again, once it is re-connected, and
• Do these Pelvic Floor Exercises.

They are right about the walking. The movement works well to make waves of constriction start travelling along the bowel, moving poo along. Once it starts to emerge from the right place, they tend to let you go home. There's generally some after-care to finish closing the hole where the colostomy was, but then you are mended and ready to get on with your life, with no rectum.

And let's be fair, it's pretty damned good. For a start, you are not dead. You have got some more living to do, and you would like it to be as normal as possible.

So, what problems might you have, that somebody whose cancer was higher up will not have? Well:

• Your bowel doesn't sleep, but you do. It moves its contents along all the time, and you don't have a clever reservoir to hold the poo until you happen to feel like dumping it.
• Farts. You no longer have a clever way of separating them from the poo, and if there has been any loss of nerve connections you are likely to be unable to tell which you are about to do.
• Runny poo, because you don't have the drying functions of the rectum any more. Constipation may at first seem helpful here, but it isn't, and can lead to quite a few possible problems.

Because your bowel moves poo along all the time, and you have no storage at the end of it, you may find you need to poo much more often, and you'll have to stay near a toilet until you can sort that out. The surgeons may have used part of your gut to do what they call "forming a pouch", which they hope will give you some storage capacity. That takes practice, and practice takes time. You will need to resist the urge to go, if you can, which is going to involve much unpleasant clenching. Those Pelvic Floor Exercises will really help, and you will eventually be able to wait quite some time even though you are sure your gut is full. Make it wait.

Try to develop a schedule. These days, I try to get as empty as possible before I go to bed, so I get a few hours of sleep in before I get woken by the need to go again. Nowadays, I sleep through the night most times, because of making sure I go to the toilet sufficiently, before I go to bed. I also try to make sure I don't drink so much alcohol that I won't wake up easily when I have to. Poo in the bed is not popular. Be sure you are as empty as you can be, and don't be drunk. Drunks are boring, anyway.

You will need to eat carefully, and avoid some foods. Over a couple of years, I have learned various things. Sweetcorn is something that has a tendency to pass through the gut completely unchanged, and can be downright annoying when you have a stoma. Onions, and quite a few other things, tend to produce a lot of gas. Farty stomas seem amusing for a while, but the joke soon wears thin. Wind has a tendency to be a painful nuisance to anyone who is using pelvic floor exercises to keep poo in until they can get to a toilet, and if you are not yet strong enough to hold absolutely anything in, you can make a nasty mess. If you know a food gives you wind, try something else.

Constriction of the anastomosis. Nice word, anastomosis. It means the join where either side of a bit of removed gut has been connected together. Sometimes, they just heal, and work nicely, letting everything through. Mine had a tendency to get narrower. There is a surgical procedure for fixing this problem, which is basically stretching it. Having been anaesthetised both times this was done, I have no idea what brutal implement is used. The thing to do after that is use a device called a rectal dilator. Pharmacies can order them, if you explain why you need it. Or you can order directly from albertwaeschle.co.uk who have very helpful staff. Regular use of a large dilator, with K Y Jelly, or some other safe lubricant, will stop the anastomosis closing, if it is close enough to your anus for the dilator to reach it. If it's further up, ask your surgeon if it is safe and necessary to do anything about it. It may be a good idea to make your own dilator, as the official ones are not particularly big, or obtain one of the fascinating objects sold as sex toys that seems to be about the right shape. I believe there are people who enjoy pushing things up their bottoms. Some of them end up in hospital. Get advice.

Laxatives and fibre. Constipation can seem helpful when you are only recently mended, and fed up with poo escaping when you don't want it to, but it's a bad thing. Straining to clear it can cause damage to the gut, and lead to diverticulitis, where bulges and ruptures in the wall of the bowel are a serious problem. There's plenty of information about it online, so I'll put no more here. One way of making sure this doesn't happen is to use a mild laxative and extra fibre, so you get softer, smoother poo. This is obviously helpful if you have any constriction of the anastomosis. Your GP will probably let you have a prescription for Lactulose, a laxative that works by reducing the amount of water your gut extracts from your poo, and Fybogel, a powder that swells into something remarkably like wallpaper paste, but tastes better. Once you get the Lactulose and Fybogel dosages right, you can rely on it to let you go when you want to, without risking diverticulitis.

Update: Somebody actually found this page! Here is what he said -

Reading your piece about living without a rectum hit home with me. I also live without a rectum. It has been a hard situation trying to find help on what to do to return to normal. I was surprised at how little the doctors could help and how little information there was on the internet. I was able to find little bits and pieces on line but not much. One thing I read a few months ago was from a gentleman that had the same predicament as myself. He said he only ate one time a day. For the last four months I have also started eating once a day. This has been the best I've been in the last two and a half years. But I try now and again to look on line to see if something or someone has a better idea. That is how a came upon your story last night. Knowing what I know now I'm not sure I would let them take my rectum. I had stage 3 colon cancer but it was close to my rectum and therefore the rectum had to go. When all of this cancer started I was scared and if they had said they needed to remove part of my brain I would have probably agreed to it. Thanks for your article it was entertaining and educational.

It's nice to know I helped a little.

Another update: Another email with advice I hadn't tried -

I too had my rectum removed. The doctor was able to reattach my colon to my anus. The first few weeks after the reversal of the iliostomy were absolute misery. I thought that I had made a terrible mistake by passing on the colostomy. I then found an internet article about taking a daily enema to relieve the constant visits to the bathroom. I give myself an enema every morning and have done so since May of 2013. It works like a charm. The daily enema cleans the colon and 99% of the days, I don't have another bowel movement. Life has returned to normal. Hope this information is of some help to someone.