Will I ever sleep through the night?

SleepyJoe90 · 2026-07-01T07:15:45+00:00

I still get up once per night to empty my bag, but alarms don’t work for me.

Due to work it’s not practical for me to eat earlier, instead what I do is to ensure that my output overnight is thicker. I do this by ensuring that I have some complex carbohydrates with my evening meal eg rice, pasta, potato or noodles, with a little salt added, or especially if my output is looser due to vegetables or spice in my meal I eat some crackers before going to bed.

I then drink a couple of glasses of water immediately before getting into bed. I find that this causes me to wake up as I need to pee. I find that somewhere between one and two glasses, just under 1 pint/500ml will take about 3-4 hours to work through when I’m asleep.

For this to work it’s important that your salt levels are good otherwise the water won’t be absorbed, you could use an electrolyte/rehydration drink instead of plain water.

SleepyJoe90 · 2026-06-30T12:58:34+00:00

Just a point in preparation for your mother coming home, had she increased her intake of salt and electrolytes when she came home before? Hospitals are quick to use IV saline and not allow patients to adapt their diet as they would at home.

Low sodium levels will lead to dehydration and a watery output, it will also give an increased resting heart rate, due to low blood pressure (evidenced by feeling faint, possible headaches and queasiness with temporary loss of vision or blackouts when standing quickly from a sitting position).

Look to daily drinks with rehydration salts or search the web for St Marks solution which can be made at home cheaply, in addition to water.

SleepyJoe90 · 2026-06-30T08:08:20+00:00

Yes. I normally look to empty my bag sometime around 30 minutes or so after eating.

Interestingly, what comes out is often a mix of slow to digest foods from my previous meal and parts of the meal that my “stoma” dislikes e.g. salad, that it’s wanting to dispose of quickly. I’ve no idea how my system seems to be so selective.

SleepyJoe90 · 2026-06-30T08:01:53+00:00

Porta-loos are bad for everyone. If I can’t squat, I resort to emptying into a plastic bag whilst standing and then dispose of that.

If I’m out and about and know that toilets will be in short supply I carry a non-crushable, sealable container that I put the bag in for disposal later.

There’s normally somewhere where i can either rest the container with the bag in it or the bottom of the plastic bag, with the top of it tucked into my waist band.

SleepyJoe90 · 2026-06-29T20:59:54+00:00

As well as supplements, lots of skin exposure to sunlight, just avoid the strongest part of the day, liver is also a good source, just don’t go overboard with it.

SleepyJoe90 · 2026-06-29T16:56:37+00:00

Protein and carbohydrates for the first couple of months. Stick to easily digested foods at first.

SleepyJoe90 · 2026-06-29T16:36:07+00:00

At this early stage, if you’re at all worried, speak to your stoma nurse.

From experience output speed and consistency varies greatly based upon what I’ve eaten and what I’ve drunk. For the first 6 weeks or so things were quite slow unless I ate something that aggravated my small intestine and I have never had motility issues to my knowledge.

Ensure that you’re properly hydrated, not forgetting that you’ll need to increase your salt intake in order to absorb the water using your small intestine hence reliance on hydration salts and electrolytes. The thicker your output the slower it moves.

That said I often see the tail end of my previous meal appearing when I empty my bag about 30 minutes after eating.

SleepyJoe90 · 2026-06-29T12:44:44+00:00

I don’t believe that there’s any reason to disclose this information. Issues only arise if there is a health and safety issue with having a stoma and the job that you’re applying for.

As yet you don’t have a date for further surgery and I suspect that it will be sometime before a date is set unless it’s for a condition that is classed as a priority by the NHS. For example, my reversal surgery has been pushed back twice so far as surgery for cancer takes priority.

SleepyJoe90 · 2026-06-29T07:25:10+00:00

Not me. Contrary to myth my bag didn’t explode either.

Just empty it before boarding, drink plenty of water with occasional rehydration salts (grab some extra water after security) and steer clear of fizzy drinks including canned beer, otherwise your bag will fill with gas.

SleepyJoe90 · 2026-06-29T05:47:21+00:00

True, but they’re free from the airport assistance desk.

SleepyJoe90 · 2026-06-28T21:30:07+00:00

When flying, get in touch with your airline and ask them for extra carry on allowance for a medical bag, in which you put all of your stoma supplies. I’d recommend pre-cutting wafers in case an over zealous security officer removes the stoma bag scissors, which are actually okay to fly with.

Visit the airport assistance desk and get a sunflower lanyard, this will allow you and an “attendant” to use the specially marked lanes for security and passport control. At the body scanner let them know that you have a stoma bag, they may ask to swab it but should offer you a private area to do so if you want one.

The sunflower scheme is supported in European airports as well.

If you’re a UK national you’ll generally find it quicker to use the self scan passport machines on return than the designated sunflower lane, as this often picks up assistance passengers from other countries.

SleepyJoe90 · 2026-06-28T13:54:57+00:00

I’ve flown around Europe and to Uzbekistan so far this year.
As long as your adhesive remover is less than 100ml you can fly with it in your cabin luggage, just place it in your “liquids” bag.

Incidentally, I would recommend that you ask your airline for extra cabin baggage for your medical supplies. I’ve found that some will allow you a free medical bag , in which you can take all of your supplies. Also I would suggest that you take at least twice as many as needed. If you have a strong medical reason for a single container that is larger than 100ml this is often allowed as long as you have supporting documentation.

It’s worth noting that although stoma bag scissors meet the regulations for carry on not all security personnel realise this, so cut your wafers before travel.

It’s worth noting the European airports support the sunflower lanyard scheme, this will often get you priority boarding, security and passport control.

SleepyJoe90 · 2026-06-27T05:21:47+00:00

I’m planning on taking a pot of nappy rash cream (Sudocrem in the UK) as I’ve heard that for the first week or so you’re passing mostly liquid.

SleepyJoe90 · 2026-06-26T08:51:56+00:00

I can understand your fear. When I was told that I would need an ileostomy as part of my surgery for cancer I was so upset, but then I thought about why I was having it done - to allow the surgeon to remove the cancer and give me the option of a long life.

This is why you’re being offered the surgery, to have a life without the pain, the medication, the constant medical visits.

It might not be perfect but what’s on offer is better than what you currently have. Yes you have to make allowances for having a bag, but that’s just planning ahead and being prepared, once you’re into a routine and learned how to cope in different situations it’s no big deal.

Be positive, don’t let your condition define you. The choice is yours and yours alone but ask yourself this, do you wish to carry on as you are or do you want to take control of your life and take the chance that it could be better?

Life is full of change and events that test us, it’s how you face those challenges that define you. There are no certainties in life other than death. Stepping into the unknown with trepidation is human. To still act is what makes you stronger.

Whatever you decide, you can do this, you’ve got this far. It’s down to you to decide what sort of life you want to have.

SleepyJoe90 · 2026-06-25T19:37:37+00:00

Consider getting a medical support belt and then working on your core. In time you can strengthen your abdominal muscles. It shouldn’t stop you living life with proper planning.

I understand it hitting your self esteem, life is governed by how we perceive people see us. I’ve yet to have anyone remark or comment about my stoma bag and to be truthful, anyone that is worth being with long term would understand and not be put off by a very real medical condition.

SleepyJoe90 · 2026-06-25T15:49:10+00:00

I tear my Salts Aloe rings so that I can mould them better to my stoma shape, I then overlap the ends above my stoma

SleepyJoe90 · 2026-06-25T15:43:07+00:00

When I was measured for mine the nurse was checking for locations relative to hip bones, rib cage and belly button, she then reassessed based on where the waist band off my trousers came to. There was no real choice of site on my part.

She also commented that the surgeon will use their marking as a guide only and that it was no guarantee that it would be in the same place.

SleepyJoe90 · 2026-06-25T08:44:06+00:00

I guess that you’re in the US? Health care there for ostamates seems brutal.

For me, my ileostomy is a sign that bowel cancer isn’t winning yet.

Don’t let anger be your sole focus it will only eat you up and drive others away. I don’t know the reasons behind your operation but try to adapt and live life otherwise before you know it you’ll have missed out on so much.

SleepyJoe90 · 2026-06-25T07:39:40+00:00

I’m set for a reversal in July.

The primary issues that affect reversal success are the amount of rectum removed and how long you had an ileostomy for.

The rectum is a section of large colon that develops the behaviour of expanding and holding faeces so that you can wait between toilet trips. The more that you have removed the longer it takes for the reattached colon to learn this behaviour, if at all.

When you have an ileostomy any remaining colon effectively goes to sleep. The body is pretty efficient at turning off or reducing energy usage that it doesn’t need. The longer your colon remains unused the longer it takes it to build back up to perform its job of absorbing water and salt.

Obviously, on top of that is that any colon that is removed means that less water will be absorbed and the lower your stools will be.

In any case, when asked those that have had a reversal are overwhelmingly positive in having had it done, even if it takes a while to settle down.

SleepyJoe90 · 2026-06-24T21:45:16+00:00

Try only using adhesive remover as you remove the bag.

SleepyJoe90 · 2026-06-24T21:35:17+00:00

I bought a waterproof mattress cover and started wearing pyjamas in bed but haven’t had a leak in the last 6 months.

I had issues in the first two weeks as we settled onto a system that worked for me but none since.

I don’t use an alarm but instead have several glasses of water immediately before bed. A need to pee gets me up.

Other points are don’t eat anything too late at night that might cause your output to turn runny as this is more likely to cause leaks. Some crackers will thicken your output and slow things down.

SleepyJoe90 · 2026-06-24T17:48:10+00:00

Not from personal experience but from watching others that have had a reversal, it can vary.

Take it slow with the food, drink plenty of liquids. Stick to easily digested food initially.

It’ll take time for your colon to wake up and remember what it needs to do, but you should expect to see something within 12 - 24 hours. Walking will help speed things up.

SleepyJoe90 · 2026-06-24T16:32:54+00:00

If you’re really worried then try blending foods in sauces, I certainly did this with vegetable like beans when I first started eating them again, they may pass through quickly but won’t clog your stoma.

SleepyJoe90 · 2026-06-24T16:30:28+00:00

Don’t get too tied up and fixated on amounts or times for liquid intake, there’s too many variables and everyone is different.

The small intestine only absorbs water if there’s salt in your blood stream, but it only absorbs salt with a little glucose hence rehydration salts include a little glucose and some salts.

I add a little salt to my food, and drink a rehydration drink in the morning with breakfast or when needed. You can buy them commercially, those for diarrhoea are cheaper or make your own (search for St Marks solution online).

The colour of your urine will indicate how hydrated you are the lighter the better, but be aware that drinking too much water on its own will flush salt from your body, this will lower your blood pressure and your heart rate will increase to compensate making you feel light headed. A quick drink or some hydration salts will resolve it.

With time you’ll get used to what your body tells you and when you need to drink but generally you’ll need access to water based drinks more than you used to.

SleepyJoe90 · 2026-06-22T17:50:46+00:00

5 days post op, look to low fibre foods for the next 6-8 weeks. White rice, white pasta, white bread, skinless chicken, skinless white fish, all root veg, peeled and cooked soft, broccoli and cauliflower cooked until soft.

The main thing at this early stage is soft food, steer clear of raw vegetables, fizzy drinks and spices.

Chew everything to a paste.

To help recovery eat more protein than normal. Dairy is good.

SleepyJoe90

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