Ileostomy Surgery: What to expect
If you are due to have ileostomy surgery, you may be finding the whole thing somewhat daunting - and fair enough, it is!
I've put together some basic information based on what I learned from my own experience with ileostomy surgery. If your surgery is planned, then you can prepare and know what to expect. If, like me, you find yourself in an emergency situation, then I hope you find the post-surgery information helpful.
Before surgery
Do your research beforehand! Don’t let the first stoma you see be the one on your own body immediately after surgery.
Get familiar with the plethora of ‘stoma accessories’ (pouches, covers, supporting products etc) that are out there, so you have some idea of what you will be testing out to determine what combination of products will work best for you.
A consultation with a specialist stoma nurse is extremely helpful, both in terms of general information and product familiarisation, but a stoma nurse can also help determine the ideal placement of the stoma on your abdomen.
Preparing for your stay in hospital
A hospital stay won't be something to look forward to of course, but I highly recommend taking certain small steps to make it as comfortable as possible.
Stuff to have with you:
Any medication you are taking and will need to have with you.
Pyjamas and loose comfy clothes: the sooner you are able to get out of that ghastly hospital gown and into your own clothes, the better! You may need to wait until you are able to get up and move around before you can do this, as you are likely to have a drain/catheter/dressings that your doctor and nurses will need easy access to.
Don't take anything with a tight waistband: you don't want anything digging in or rubbing against your incision(s) or your new stoma. Go for loose clothes, ideally with an adjustable waist. Roll-top trousers are also a great option, as long as they are not too fitted/tight, as they provide gentle support to your abdomen, stoma and ileostomy pouch.
Socks: soft socks are great for warming up feet that may not be moving around that much post-op! Make sure they are not tight anywhere on your foot or ankle though, as you don't want to affect circulation.
Take a couple of items that may make you feel more 'at home': this could be a pillow, a soft toy, a couple of crystals (if you're into those), a photo that makes you happy, whatever. You may also want to take a mild perfume or room spray to counter the 'hospital smell' - but make sure it is mild, as strong smells are not great for others in a hospital setting!
Food: make sure you have a few appealing (and ileostomy-appropriate) snacks with you. Straight after surgery you are unlikely to have a big appetite, and it's best to eat several smaller portions throughout the day, so have something that is easy to eat and that could help increase your appetite. I had some small coconut yogurts, gluten-free crackers and cookies, rice cakes, some mashed avocado, and I was brought a fresh (low-fibre) smoothie from home every day too.
Entertainment: time can really crawl when you're in hospital, so it's important to have things to help you pass the time, particularly things that don't require much brain power, as you are likely to be tired and groggy for the first few days. Make sure you have movies and/or series downloaded onto your laptop or tablet, maybe a notepad and pen, some magazines, a book, even a deck of cards so you can play a game with a visitor if you feel up to it.
Hand cream, and moisturiser in general: whether from the meds in your IV, the hospital air, or the disinfecting of your skin that will have happened prior to surgery, your skin can end up feeling very dry and uncomfortable. A tube of hand/body cream on your side table will definitely come in handy!
Ostomy supplies: if you already have an ileostomy, then make sure you take enough of your supplies with you for your hospital stay, and if you are getting your first ileostomy, then your stoma nurse will provide you with what you need, either before your surgery, or certainly before you leave hospital.
Post-surgery
Don’t be alarmed if the stoma looks bigger than you expected – it will get smaller! And it will generally look a lot less inflamed once the stitches are gone and the skin has recovered and healed – your pouching system will also be more comfortable once this happens (there’s an “itch” in “stitch” for a very good reason!).
There’s an “itch” in “stitch” for a very good reason!
Keep in mind: the 6-week mark is very important. While I had steady improvement, I saw a massive shift between weeks 6 and 7, on all fronts. It was really the point where I started feeling much better all round.
You will be started off with a transparent bag so that your stoma can be checked on easily, but you later have the choice of switching to an opaque bag if you prefer.
You will have plenty of time, and ideally the guidance of a stoma nurse, to try out different kinds of bags and figure out what you are happiest with, but to start with, you want something that can be applied easily and without requiring too much pressure on the freshly-operated abdomen. Some 2-piece systems, for instance, require you to push down to get the bag to click onto the flange, and this can be uncomfortable, if not outright painful, straight after surgery.
Your stoma might be quite musical to begin with! This is due to excessive gas caused by the surgery and the overall trauma to the intestine and is very normal. Don't worry, it will quieten down in time.
A note on pain management: there is, quite naturally, some pain after ileostomy surgery, and so you will of course be having pain medication (either through an IV or an epidural, or some combination of the two). You will probably also be asked (more times than you can count) by well-meaning nurses, that most infuriating of questions: "How would you rate the pain on a scale of 1 to 10?". This is not a time to be tough or brave - if you are in pain, say so! Of course, it may be too much to hope that you will feel nothing whatsoever, even with the meds, so my general advice would be: be prepared to feel a certain degree of discomfort, but you shouldn't have to tolerate pain.
Eating after ileostomy surgery
The first 6-8 weeks after surgery require special dietary considerations, some of which you may need to stick to in the long-term.
The first 6-8 weeks after surgery require special dietary considerations
Your doctor and/or stoma nurse will be able to give you a complete list of foods that are allowed and not allowed.
In short, you want to avoid fibrous foods so as to reduce the risk of blockage. The intestine and the stoma itself will be swollen and irritated straight after surgery so you want to eat a generally low residue diet, made up of foods that are easy to digest and will not cause any aggravation.
Chew everything very well!
Some definite NO’s are: corn, mushrooms, pineapple, celery, nuts and seeds, raw fruit/vegetables, vegetable/fruit skins, gristly meat, spices, coconut etc. Foods high in sugar should also be avoided as they can cause an increase in output.
There are also certain foods that help thicken and slow the output. These include: apple sauce, smooth nut butter, potatoes (no skins), bananas, plain white bread (as I am mainly gluten-free, I would not personally recommend this, but realism and practicality dictate that sometimes you can’t stick to a perfect or ideal diet and need to just work with what you have), and even marshmallows.
If you have been suffering with IBD, then you are likely used to some degree of dietary restriction, but don't worry, most of these are not forever, though they are crucial in the first weeks after your surgery. After this initial phase, you should experiment with small quantities of new foods to see how you tolerate them. For instance, some ileostomates must say goodbye to mushrooms and corn for the long run, but others have no problem at all with them, as long as they chew well. So, you need to find your own personal tolerances over time.
Hydration
Staying hydrated is very important for all ileostomates, especially in the early days.
Do not be alarmed by the initial volume and/or wateriness of the stoma output. It takes time to regulate – apparently it can take up to 18 months for a stoma to fully settle into its ‘routine’. The body is very clever, and during this time the small intestine adapts to the absence of the large intestine, and it ‘learns’ to perform the water-absorbing role of the large intestine to a certain degree, thus resulting in less watery output over time.
In the early days, you may be prescribed an anti-diarrheal to help slow the output and reduce risk of dehydration.
Make sure you are supporting your hydration with electrolytes.
In the hospital, you will be on an IV to keep your fluids up, but once this is gone, you need to be on top of your hydration. Do not make the mistake of guzzling water though. Small quantities of plain water throughout the day is fine, but if you drink too much it will just go straight through, and actually mess with your electrolyte balance in the process. So, make sure you are supporting your hydration with electrolytes. I had a fairly high output ileostomy for the first couple of months (around 2-2.5 litres of output per day) so I was taking both the anti-diarrheals AND 2-3 sachets of electrolyte powder per day. Sports drinks may also be recommended, but I personally am not keen on them because of their sugar content and the addition of artificial ingredients/colours. But each to their own.
You should also ensure you salt your food (unless you have a conflicting medical issue which forbids this of course) as an extra precaution.
Output
As well as gradually becoming less watery, the volume of the output will gradually reduce too.
For the first few weeks, and then out of habit for the next few months, I was too paranoid to sleep through the night for fear of the pouch filling up and resulting in a leak, so I would set alarms every couple of hours to wake me up so I could empty the bag. It was awful, but I preferred the inconvenience of waking up to go and empty rather than the inconvenience of waking up to a leak and having to change both the pouch and the sheets! The time between alarms gradually increased and now I am happy to say that most nights I can sleep straight through for around 6-7 hours without a problem (the only exception being if I eat a big and/or fibrous meal and/or drink a lot of water late at night and then go to bed).
Average ileostomy output is roughly between 700ml and 1.5l per day.
For the record, the average ileostomy output is roughly between 700ml and 1.5l per day, once it has regulated. More than 1.5l is considered a high output ileostomy.
It is important to note that I am talking about ileostomies here - colostomies have their own set of rules, as they are an entirely different animal to ileostomies!
What’s in a name?
Some people make a big deal about naming your stoma, how you must do it as it’s part of the acceptance process and all that, but I don’t know. If it doesn’t come to you and you have to force it, then I don’t see how it’s helpful. So if you don’t feel like you know what to name it, or more generally don’t feel the need/inspiration to name it, don’t worry about it. Maybe it will come naturally later on. Then again, some people never name it, and that’s obviously fine too. Whatever works for you!
The most important thing to remember is, the last thing you need is to feel pressure that you should/need to do something, or that it means something bad if you don’t – it doesn’t!
Lastly...
Try to focus on the fact that you are getting an ileostomy to improve your health and life. For the most part, regardless of any challenges or discomfort about the ileostomy itself, most people really do feel better overall once they recover from surgery.
Your ileostomy will be part of you, whether for a limited time or for life, so try to 'make friends' with it. And remember, you are not alone in this, there is an entire community of people just like you within easy reach via social media, so if you need to share, browse, ask or vent, do it!