12 days to go: Eating with a stoma

It's now 12 days to go until I'll be walking into hospital to have my J-pouch made! That means a step in the right direction in my UC journey, but also means saying goodbye to my trusty end ileostomy. We've had a love-hate relationship in the 17 months we've known each other, but all in all, it'll be weird saying bye to the original end stoma that saved my life and hello to the loop stoma that will replace it!

In a farewell to my trusty endie, I'm doing a post a day for 12 days covering some issues I've dealt with over the 17 months. I hope it'll be informative!

Ellie :)

12 days to go: Eating with an End Ileostomy

One of the big worries people tend have when going in for their colectomy is how limited their diet might be after the surgery. Your consultant or stoma nurse will likely present you with a list of foods you might now struggle to digest, the biggest culprits for trouble being skins on vegetables, stringy fruits, nuts, popcorn, mushroom and corn. Other issues that cause concern are odour, caused by fish, onions and beans. Another worry is increased and/or runnier output, caused by alcohol, chocolate and dairy.

Looking at this pretty extensive list, some people are understandably concerned! After years of bowel disease (and a limited diet anyway), cutting out certain foods post-op may not seem like a big deal at all, but it still might sound a bit of a blow to go through such a huge surgery - meant to improve your condition and lifestyle - and then being told that all these yummy foods are a no-no.

Well, I've got good news for you! Turns out, they're NOT a no-no, after all. Well, not for most people. Hear me out on this.

In the first few days after surgery, be careful to eat a minimal fibre diet. Good post-op foods include white rice, white bread, plain fish, plain meat and mashed potato. Chew carefully and eat slowly. Over the next few weeks, begin to introduce foods one at a time and begin to understand how your new digestive system works. Don't let anyone rush you into trying new foods if you're not ready - this is a personal journey.

Foods that help to thicken stools include potatoes, jelly, jelly sweets (jelly babies, wine gums, midget gems), marshmallows.

The biggest 'warning' foods are those that have the potential to cause blockages. This is when hard-to-digest food becomes trapped behind the opening of the stoma, causing severe abdominal cramping and stopping output. A blockage lasting more than several hours is considered a medical emergency. These are the foods that would usually have been dealt with by the colon, that your small bowel struggles to handle. These include: vegetables with skins, stringy fruits e.g. oranges, sweetcorn, nuts, popcorn, mushrooms.
But regardless of any warnings and concerns, I have eaten all of these foods since surgery, and enjoyed them in copious quantities! (see jolly sweetcorn-eating photo below)

I can't lie - these foods can cause issue if not handled correctly. However, you've got to bear in mind that people with an intact digestive system would also encounter problems if they wolfed down hard-to-digest meals. Your ostomy doesn't necessarily mean that these foods are off limits. Here's a few tips in handling these tricky titbits:

1) Do not introduce these foods too soon after surgery. When your bowel is handled in surgery, it tends to swell, which is why a stoma appears golf-ball size in the days immediately post-op. This makes digestion problems and blockages more likely. Avoid all of these difficult foods for at least 4 weeks after surgery.

2) When introducing them, eat small amounts and try the foods one at a time. For example, try a small spoonful of sweetcorn alongside other food that's easily digestible, and see if it causes a problem. Some people find it helps to make a food diary to record any bad effects.

3) CHEW. Chew these foods more than you've chewed food before. Crunch the nuts into tiny bits, the sweetcorn to a pulp if you have to. It'll be weird at first, but you soon get used to eating certain foods this way. It also means you appreciate the taste more, I think.

4) If a food causes a problem, don't be afraid to try it a second time. Just because a food caused a problem one time, it may not happen again. Give it a few weeks, then try it again.

After about 6 months, even the trickiest of foods became very edible for me. Mushrooms were my only issue, and I encountered a particularly nasty blockage at a music festival after eating a takeaway mushroom risotto (typical!) Since then though, I've chewed extra-well without problems.

Another issue people worry about is odour. Certain foods, like beans, onions, fish and meat can cause your bag output to smell worse. This is true, but does not mean that you should forgo these nutritious and yummy foods for the sake of other people's noses! You've undergone major surgery and survived a near death experience, so don't let other people judge the smell of your poop. Their poop probably doesn't smell like roses either.

If the smell of your bag really bothers you (and it does smell worse than normal poo, that is true), you can put tic tacs or charcoal tablets into your bag to lessen odours, or a lot of healthcare companies make special drops that neutralise bag smells. Alternatively, buy a good quality air freshener, carry a small body spray in your bag when you go out, or strike a match and blow it out immediately after using the toilet to get rid of bad smells.

The last issue people encounter with food is increasing output and gas. This can be caused by alcohol, chocolate, beans and dairy. 

When drinking alcohol (which I do quite a lot of as a student, I have to say...), spirits are the best as they have little to no effect on output in terms of consistency/amount. Wines and beers tend to create more liquid/gas. This can be controlled by taking imodium before a night out (imodium is safe to take with alcohol), and eating something easily digestible and stomach-settling beforehand, like mashed potato. Be aware that you will both get drunk and sober up more quickly than you did when you had a colon, so learn to recognise your new limits. You are also at more risk of dehydration, so consider drinking water or soft drinks in between alcoholic ones.

Dairy products and chocolate do increase output, but only if eaten in copious quantities. It really doesn't affect you all that much. However, be aware that sugar-free sweets may cause diarrhea.

Gas noise from your stoma can be helped by covering the stoma with your hand, but often isn't as loud as you think. You hear it because you notice it, but other people may not necessarily have even heard it. Gas doesn't necessarily sound like a 'fart' either, it can sound like stomach rumbling, which you can blame it on (less embarrassing perhaps!) Although you can't stop gas coming out of the stoma, you can usually feel pressure/bubbling when it's about to happen, and over time you'll learn when it might begin to make noise. Before an episode of wind for example, my stomach will growl a lot before the actual audible noises start, giving me enough time to stifle the stoma with my hand.

Some foods may change the colour of your stoma output: bile will change your output green, and several foods such as beetroot, tomatoes (including soup), jelly, food colouring can change the colour red - don't panic and think you're bleeding, which can be an easy mistake to make! Red jelly has perhaps the most disturbing appearance and can sometimes come out in lumps looking a bit like blood clots. Bear this in mind if you're eating it for the first time post-op to avoid panic later (I cried and freaked out and rang my stoma nurse...)

Oh - and a last point - to avoid night trips or accidents, aim to eat your evening meal around 4-6 hours before bedtime.

All in all, enjoy your food after surgery! For many, having an ostomy will be an opportunity to introduce foods they could never have imagined before. Your diet has the potential to be a lot more varied than before, so don't hold back - try everything, savour it, and relax in the knowledge that you will no longer have to dash to the loo after eating something interesting!