Seeing as my ileostomy surgery will take place in less than a week now (yikes!), I have been undergoing all the necessary pre-surgery tasks. The weeks leading up to surgery, particularly one as major as stoma surgery, can be daunting, so I have documented the process so people can see exactly what to expect and when.
Preoperative assessment
First of all, I attended a preoperative assessment, the purpose of which being to ensure that I am fit for surgery. You meet with a nurse from the surgical department who runs through a long report which asks questions about your current health i.e. which medical conditions you have, which medications you’re on, which other surgeries you’ve had, which allergies you have etc. Then, if it’s deemed necessary, you may have to undergo specific tests like an ECG or be physically examined, though none of these tests are particularly invasive. I also had to have a series of blood tests to check that my anaemia wasn’t going to cause any issues- and luckily it appears it won’t. All in all, I believe the appointment lasted about 30-40 minutes. I should also say that this appointment and the data collected are valid for a period of 12 weeks. I had mine just over 2 weeks before my surgery, but if you haven’t had your surgery within the 12 weeks following the pre-assessment, you will have to have another one.
Stoma nurse consultation
Several days after my pre-assessment, I received a phone call from the stoma nurses who wanted to book me in for a consultation to discuss stomas, how they work and what to expect after my surgery. This appointment usually takes place at your normal hospital or the one at which your surgery will take place. At the outset of the appointment, the nurse outlined the type of procedure I will be having i.e. a pan proctocolectomy a.k.a. the removal of my colon and rectum, and the creation of an ileostomy. She then explained how stomas work and the different types of ostomy products available. Although like me you have probably done a tonne of research if you’re heading into ostomy surgery in the near future, sometimes all the information can be overwhelming and key questions remain unanswered in support booklets and online. Naturally, I had quite a few questions remaining about the surgery and living with a stoma beyond the basics that I expect most pre-surgery patients would already know, so I will do a little Q & A below paraphrasing what the nurse told me.
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Q- Will my surgery be laparoscopic (keyhole)?
A- Usually, elected surgeries are keyhole and emergency surgeries are open, but you may need to consent to both in case there are any issues in the operating room and the surgeon decides that open surgery would be safer. Having keyhole surgery will lessen the recovery time in comparison to open surgery, but keyhole procedures usually take longer in theatre i.e. 5-9 hours for keyhole vs 4-7 hours for open surgery.
Q- Will I have an epidural?
A- There are two main options for pain relief. You can receive an epidural, but this will require you to stay in bed for at least a couple of days after surgery. Alternatively, you can be given a morphine pump which means that you can self-administer your pain relief after surgery without the fear of overdosing.
Q- How will I go to the bathroom after surgery?
A- You will have a catheter to pass urine while you are bedbound initially after your surgery. As for the stoma, your nurse will empty and change your bag until you become more confident.
Q- Will I have an NG tube?
A- Yes, but this will probably be removed either before you wake up, or in the recovery room. If there are any issues, this may stay in place, but your nurses will try their best to make you feel comfortable.
Q- How long will I be in the hospital?
A- This will depend on how the surgery goes, if there are any complications, how ill you were beforehand and how you are recovering. If the surgery is elected and is done keyhole, you may only be in hospital for a week, but if for example you went into hospital quite unwell and had open surgery, you may be looking at 2 weeks. The bottom-line is that you need to be on your way to recovery and comfortable with your stoma in order to be discharged.
Q- Will I need to be on a liquid diet at first?
A- You may have a day or so of nothing at all and you may feel quite sick after the procedure. The first thing you will consume will be water and once you are comfortable with drinking, clear fluids like broth will be introduced. Within several days you should have moved onto semi-solid and then solid foods. You should follow a low fibre/ low residue diet for about 6-8 weeks after surgery to give your intestines a chance to recover before introducing foods like fruit and vegetables.
Q- Will I have the same intolerances as before?
A- Yes, so if for example you couldn’t digest lactose before surgery, you will still be affected by it after surgery.
Q- Are there any specific foods I will have to avoid long-term?
A- Not necessarily, but you need to be careful with foods which can cause blockages like nuts, seeds, fruit/ vegetable skins and popcorn. Having said that, blockages that require hospital intervention are fairly rare and usually only happen when people haven’t chewed their food properly i.e. swallowing mushrooms basically whole! Some foods are identifiable in the stoma output, but this doesn’t mean that they will block the stoma- peas for example are usually too small to do so. Just chew well, monitor how foods affect your output and adapt based on what works best for you.
Q- Do I need to add salt to my food? How much should I drink?
A- People with stomas are at a higher risk of dehydration, so preventing this is important. You should aim to start with drinking around 500ml of water a day as well as lots of other fluids like tea, broth or milk. You can then build this up over time if necessary. You can also add salt to your food, use salty condiments like soy sauce or consume salty foods like crisps to ensure that your body has enough salt to retain fluids. Sports drinks like Lucozade and Powerade are good mineral supplements, otherwise the WHO has a recipe which you can use.
Q- How often will I need to empty the bag?
A- People usually empty their bags about 6-8 times a day when they go to the toilet for a wee, but this will vary depending on your diet.
Q- How often will I need to change the bag?
A- One-piece bags usually need changing every 1-2 days, but two-piece bags last slightly longer- around 3-4 days.
Q- Will I have to empty the bag in the night?
A- Everyone is different, and some people’s stomas are more active than others during the night. Your nurses will try and form a routine whilst you’re in the hospital where the bag doesn’t need emptying at night. But, if you find your bag filling up during the night when you return home, try eating your evening meal earlier, or make the last thing you eat something stodgy like a banana or apple sauce. If this becomes a problem and it is affecting your sleep however, bag extensions are available.
Q- Can I shower normally with the bag on?
A- Yes, you can shower with the bag on or off, just remember that your stoma may become active whilst you are showering. You may want to change the bag afterwards for a dryer one, but don’t worry about it leaking as the bags are waterproof.
Q- Can I still take medications like the contraceptive pill or slow-release tablets?
A- This depends on how much of your small bowel has been removed. In [my] case, these medications should have enough time for absorption before they reach the end of the small bowel.
Q- How difficult is it to have children after stoma surgery?
A- Not that difficult! Your stoma will just stretch over the course of the pregnancy, but this is very normal. You can still have a natural birth with a stoma.
Q- Where do I get bag supplies from and do I have to pay for them?
A- Bag supplies are free on prescription. Before you leave the hospital after surgery, your nurse will give you enough supplies for a couple of weeks to get you started and you will be set up with the stoma supply company who will deliver to your house. Just make sure you order more supplies before you run out!
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After all my questions were answered, the nurse made up a sample box for me to take home, including a practice stoma kit with a fake stoma and salts which simulate output (if you want to see how this turned out, read my article Stoma for a Day: An Experiment). The box also contained various information packs, 3 types of ostomy bag (clear one-piece, window one-piece and a two-piece) and some of the general supplies you would need for a bag change just so that I could familiarise myself with the products and their design.
As for preparation immediately before the surgery, there was some confusion. Initially at the preoperative assessment I was told that I would need to do bowel prep the day before the procedure to empty my bowels i.e. the good old picolax you would take before a colonoscopy. But between the pre-assessment and my stoma consultation, I was then informed (much to my delight and disbelief) that this wasn’t necessary. However, when I arrived at the stoma consultation, the nurse said that my surgeon had changed his mind again and that he did want me to do bowel prep after all. Damn. Oh well, I’ve done it many times before, so I can do it again I guess.
As for the day of the surgery, most surgical departments don’t put specific times on their procedures. They will tell you to come at around 7am regardless and you could be waiting 1 hour or 10, so definitely bring something to do, or someone to talk to! Most hospitals can also provide on-site accommodation for the patient and up to 2 family members during your hospital stay as stoma surgery is a pretty big deal. I was fortunate enough to secure one such place with my mum for the night before surgery (for the both of us) and for a further week or more (for my mum, so that she is close by). So, my plan is to travel to the accommodation the morning before my surgery, do my bowel prep that afternoon/ evening (without the need to travel for 2+ hours at 4am the next morning!) and then make my way to the hospital for 7am the next day.
How I’m feeling
Naturally, surgery brings on a lot of conflicting emotions. On one hand, I am obviously apprehensive. No surgery should be taken lightly, and this is a major one. But also, the closer it gets to my surgery date, the more inpatient I seem to get, having waited several months to get a slot. Maybe I should be more scared, but I’m almost weirdly excited in a way. I have been ill for so long now and having run out of options, I just want to have the surgery and start recovering so that I can finally get my life back. Sure, recovering from surgery will be hard, things will be different for me afterwards and I will have some real adapting to do, but this is my one shot at feeling better after such a long time of struggling with my Crohn’s. Although I will never be “cured”, I am hopeful that this surgery will give me almost a fresh start and give me more of a chance at responding to medication once the worst of the damage is gone. I already know that I will be started on medication (probably Humira again) a couple of months after surgery as a preventative measure, though I already have some active inflammation in my small intestine which will obviously stay put. So, all in all, I am trying not to worry myself by thinking about how effective the surgery will be or how long I’ll feel okay before I start getting more Crohn’s-related issues again. I am just keen to get on with things now, this could be the first chapter of a whole new portion of my life!
Me and My Crohn's 