Ten Top Tips To Prepare For Ostomy Surgery

I got a whole day to get my head around the idea of having an ileostomy, many people don’t get that long as it is often performed during emergency surgery.  For some however, the surgery is scheduled and they have some time to prepare.  Physically, this can be a blessing with more time to get ready for what is going to happen.  Mentally, it can be both a blessing and a curse – longer to worry about the surgery, but at the same time you are able to prepare and speak to other ostomates about what happens, what to expect and what you need.

This post is written for those prepping for ostomy surgery.  Whether you have a date or it is a possible part of your future.  You also may have recently had your ostomy surgery.  I have recently been talking with a lovely lady who is having her surgery soon and trying to offer over any pearls of wisdom I gleaned from my experience.  Some people feel unable to talk to someone, or don’t know where to turn, so hopefully this will reach those who need it and get them better prepared for their surgery.  I hope the list is helpful for you and if you have any extra tips, please add them to the comments so everyone can see them.

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Mattress Protector

This is a must buy for me!  Leaks are bound to happen and it will happen at least once in bed.  Bad enough is having to strip your bed sheets at night, but if the output gets on your mattress, it is pretty much impossible to get out.  I picked up a waterproof matress protector from Asda and it just comes off and gets washed with the sheets but saves your mattress from getting covered.

I also get bed pads from my delivery company Bullen.  These are the disposable versions and although I no longer need to use them at home, they are super handy for taking with me when I am staying at a hotel or a friend/family members house.  Your delivery company will do different complimentary items but you often get wet and dry wipes, disposable waste bags, scissors etc from them.

Pain Relief

I know some are offered an epidural when having ostomy surgery.  I can’t comment on it’s effectiveness as I didn’t have it, but a few ostomates I knew did advise me not to have one.

When I woke up from surgery in the recovery room I was in an immense amount of pain.  The staff were brilliant and helped get it under control as quickly as possible and got my morphine PCA (patient-controlled analgesic) up and running so I was then in control of my pain relief.  After this initial pain, I can honestly say it was never that bad again.  I had my surgery on the Thursday afternoon and the PCA was taken away on the Monday, replaced by paracetamol and oramorph.  I was a little worried when they said it was going but I didn’t have to be.  The pain was well controlled and I didn’t suffer any horrible pain episodes during the rest of my recovery.

Everyone’s pain tolerance is different but the pain management team will be around to advise and help you manage it.  It always pays to be honest with the staff and don’t sit suffering in silence, you get no medals for doing it without pain relief so take what you need!

Clothing

A little tip for the ladies – New Look high waisted leggings were a lifesaver for me in the recovery period.  I wore them a lot with short dresses and they were so comfy to pull up over my tummy, scar and bag.  I didn’t feel restricted by them at all either.

I did have a huge wardrobe clear out not long after my surgery which I probably should have waited a little while for.  Nearly two years on, I now find I can wear most things and probably didn’t need to get rid of quite so much, although it was an excuse to go shopping I suppose!  During recovery you want to feel comfortable and you don’t want anything pressing too much on your bag.  The biggest thing I have to be wary of when shopping now is my jeans – high waisted are great and go over my bag with ease (I have some fab ones from Pep & Co).  I also wear jeggings a lot as they look like jeans but have a bit more stretch to them

Support Groups

I had been a member of some IBD Facebook groups for a while but there are some fantastic ostomy-based ones and I thought I would mention a few.

PW Ostomy Support runs alongside the Purple Wings charity which is a brilliant place to get insight, support and information.  The Purple Wings charity specialises in ‘Time For Me’ grants which helps support and treat ostomates.  Their tagline is ‘Recover, Adapt and Overcome’ which really sums up life following ostomy surgery.

Making Ostomies Cool is a fab group with lots of ostomates all willing to share information, advice and support.  It is more focused on just issues related to ostomies which means questions and posts are not left unanswered in a deluge of more personal posts.  While I love some support groups for this sense of family and support, it is nice to have a group you can go to with a question and know it will be answered.

There is also The IBD & Ostomy Support Show page of which I am 1/5th of the hosts.  We go live every Thursday night at 8pm on YouTube for an hour discussing all different issues surrounding – you guessed it – ostomies and IBD.  The Facebook page is also a great place to go to ask for advice and get support.  We also lover to hear your thoughts on the show and what you would like to see us talking about.  You can subscribe to the YouTube channel here and you will be notified when we go live and also be able to catch up on previous shows

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Samples

There are so many stoma companies out there all offering different products and it can seem like a minefield, but getting to try out different appliances will really help you find out what works best for you, your ostomy and your skin.  There is, unfortunately, no ;one size fits all’ and although I wear the Salts Confidence BE bags and love them, they don’t and won’t suit everyone.  However, definitely try them out!  Ordering samples is really easy and, for the most part, can be done online.  You can also call the companies and you will see how helpful they really can be.  I will pop a few links below of companies you can have a look at, just click the name and it will take you to their sample ordering pages.

Salts Healthcare

Coloplast

Pelican

Dansac

Peak Medical

Your Stoma

The first time I saw my stoma I cried.  Even though I was feeling pretty positive and ready for it, once I got the bag off for my first change, realisation seemed to hit me.  When you first come back from surgery your stoma will be much larger due to the recent surgery you have had.  Good news is, it does shrink!

There is also the question of whether to name your stoma.  Many stoma nurses suggest you do this, but it is ultimately your choice.  I would say most people I have come across have named their stoma but those who haven’t often say they don’t name it as they think it is or silly or they just see it as a part of them, rather than a separate thing.  There is no right or wrong answer here and it is entirely up to you!  Mine is called Stanley as I like things to start with the same letter and it had to be male (after just coming out of a relationship I was of the opinion all men were full of poo, so it seemed appropriate – I should mention that isn’t my regular view though!).

Stoma Nurse

Your stoma nurse will be your best friend for the first week or two following surgery, and possibly after that too!  They will be a daily visitor while you are in hospital and will help guide you through your first bag changes to make sure you are confident and competent before going home.  They will also be able to advise on products to help you individually, such as the possible need for a convex bag if your stoma is more flush to the skin.  I had three lovely stoma nurses working in the hospital I had my surgery in.  All three were absolutely fantastic and I couldn’t have been more pleased with all the advice and support they gave me.

Output

You will become obsessed over your output in the first few weeks – trying to get the perfect porridge like consistency they tell you to aim for!  There are all sorts of tips and tricks to help thicken your ileostomy output (see my previous post – Thickening Stoma Output) and hydration is key as it is a lot easier to become severely dehydrated with an ileostomy especially, and this can happen very quickly (see my posts on Dehydration With An Ostomy and How To Cope With A Stomach Bug When You Have An Ileostomy).

Diet

I was really lucky as my ostomy ‘woke up’ really quickly following surgery, but this can take a few days.  Some people are then given a post surgery low residue diet plan for six weeks and Louise over at Crohns Fighting did a great blog post covering this which you can read here

There are some foods which are not recommended after you have a stoma as they can increase the risk of blockages eg. sweetcorn, mushrooms and popcorn.  However this varies from person to person and I can eat mushrooms and popcorn with little problems.  Sweetcorn, nuts, fruit/veg skins and certain beans do not agree with me at all though!  This chart gives a round up of some foods and what they can cause when eaten with a stoma.

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It is advisable to avoid the stoma obstructing foods immediately after surgery but once you have healed you may want to start reintroducing them and see how you manage.  Try them in small quantities, drink plenty and chew, chew, chew is always the best advice when trying new things.  Note the colour changing foods too.  Your bag may look full of blood but it is probably the beetroot you ate for lunch!  Before rushing to A and E just have a think about what you ate that day, as it can scare you the first time it happens!

Patience

Not something you can buy, or save up unfortunately, but patience is going to be the key to get you through.  Having a stoma is by no means a quick fix.  It has given me and many others a new lease of life, but with that comes new routines and big changes to your everyday life.  Finding products which work for you can take time, learning to cut your bags yourself will take time (it used to take me hours when I first started and I hated it), Recovery from the major surgery you have had takes time, as does getting used to getting up in the night to check/empty your bag.  Learning what is comfortable to wear and what is ok to eat will take time and I mean months, as your body first has to recover from the surgery before you can start to really know this stuff.  However, there is plenty of support out there and just know that, nearly two years on, I still have bad days where Stanley is then referred to ‘the little shitbag’ as he isn’t behaving.

This surgery changed my life and wholly for the better.  Acceptance and understanding of your stoma takes a little time but as long as you are prepared for that, I think you will do amazing.  I am not a medical professional and this post was written entirely based on my experiences, so please consult your doctors about your personal situation and about any problems you may have.  My inbox is always open for advice and support though, should you need it.

Finally, a big thankyou and a huge good luck to Ella who inspired this post.  She has her ostomy surgery and has been in touch with me asking questions and seeking support about it all.  It made me write this post, to collate a lot of the things we had talked about in our chats and hopefully help people facing, or who have just had, similar surgeries.  Please add any relevant tips you can think of in the comments, it will be great for people to be able to read lots of ideas from the amazing, supportive, ostomate community.

NatalieThe Spoonie Mummy

Top Five Tips For Getting Through Chicken Pox

It is that time of year again and chicken pox is running rife!  My five year old niece has just gone down with it, just in time for the school Easter holidays.  My boys picked it up in April 2013 and I am pretty sure they got it from the swimming pool at the Havens Holiday Park we had been at a fortnight before.  Leo was four and Riley was one.  I thought I would share my top tips on how I managed to keep them comfortable and scar free for those of you who haven’t been through it yet.

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Medication

Chicken pox, unless the child is a lot older, doesn’t generally cause them to be too ill.  Mine were a bit grotty for a couple of days and nights so having some children’s paracetamol on hand is good.  Ibuprofen should NOT be given to a child with chicken pox, it can be extremely dangerous so please take care with what pain relief you choose and make sure it is paracetamol based.

I also gave the boys antihistamines (eg. Piriton) to help with the itchiness.  This can make them a little drowsy so is especially beneficial at night time.

You do not need to take your child to a doctor with chicken pox unless they look like they are becoming infected, or like me, when I took Leo as he had them in his mouth and throat and was struggling to eat.  Be sure to make the reception staff aware you think your child has chicken pox so they can give you an alternative place to wait, other than the main waiting room.  The phone in 111 service or your local pharmacy can also be very helpful in answering questions rather than taking your child into the doctor’s surgery.

Bicarb Baths

Twice a day I would give the boys a lukewarm bath with a heap of bicarbonate of soda in.  The bicarb in the bath will help dry out the spots quicker and the lukewarm bathwater (as opposed to too warm/cold) will help ease their skin.  After each bath I would gently pat them dry using clean towels.

Calamine Lotion

There are so many new things out on the market these days, most of which cost a small fortune.  My pharmacist told me to stick to good old calamine as it would be a waste of money to use anything else and that is what I did.  After each bath, I would dab calamine over all the spots (we would try and make it fun by counting the spots) with a cotton wall ball.  Leo thought it was funny seeing all the white blobs all over him!

Clothing

As Riley was a year old he still had lots of plain cotton sleep suits to wear.  The onesie had also made its fashionable entrance by then so Leo had some to wear too.  I chose the thin, cotton ones so they wouldn’t get too warm but it meant they couldn’t scratch as easily.  Pyjama days always make you feel better too!

Quarantine

It isn’t easy but this is particularly important to me.  I kept the kids inside for two weeks, until they were considered well enough to go back to nursery.  Chicken pox is highly contagious and almost seen as a right of passage for young children in the UK.  However, there are many adults and children who have compromised immune systems and catching chicken pox can make them extremely ill or even worse.  Please take these people into account when you are getting cabin fever and think one little trip out won’t hurt…it really could.  Chicken pox is contagious for up to two weeks before the spots come out (which nobody can help knowing about) and then until every spot has dried out.  This can take up to two weeks, so prepare for the long haul – plenty of movies, craft activities and Lego building will keep your little ones entertained.

I hope you found these tips helpful and will remember them for when you may need them.  Everyone remembers when they had chicken pox, how old were you?  Let me know in the comments below!

 

 

Sex With An Ostomy (and numerous other health issues)

So after doing the deed the other night I couldn’t help but lay there giggling.  Luckily, it wasn’t a reflection on the sex which was, as always, very good, but I realised that between us me and Ste had ‘on’ two ostomy bags, a Peg-J tube and three heat pads.

I see many people on ostomy support groups siting relationships and sex as one of the most worrying aspects about their diagnosis or getting an ostomy.  I want to tell you – DON’T!

I am not going to go too far into the relationship side of things, other than to say anyone worthy of your time and love should not and will not care if you have an ostomy.  Prior to meeting Ste but post surgery, I was dating and I told a couple of guys I went on dates with about my bag.  They were both very supportive and lovely about it.  We didn’t get as far as the bedroom, but the fact they were willing to see a possible romantic future with me regardless, meant a lot.  I think being upfront and honest from the start is important.  Although not an easy subject to broach with a relative stranger, you will not be pursuing something and start developing feelings for someone who can’t handle it.

And there will be people who can’t handle it.  I now get to see both sides of the relationship as someone with chronic illnesses and as a partner of someone with chronic illnesses.  Believe me, however hard it is dealing with your own medical issues, watching your partner go through it is so, so difficult.  I think people who are told early about someone’s medical conditions and decide they cannot, for their own reasons, begin to pursue a relationship, should not be vilified as long as they are kind and honest.

So, the bit you have all been waiting for… the sex!  Well I am not going to say it is easy by any stretch of the imagination, but with the right person it really does not matter or interrupt proceedings at all.  I don’t even notice my bag, or Ste’s when we are in bed.  A couple of times we have had to adjust positions due to getting tied up with his PEG-J line but we generally just laugh about it and normally make a joke about tying each other up.

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As a woman I have the general body worries – my ‘mum tum’, if I haven’t had chance to shave, my morning breath.  My ostomy bag is pretty low down the list of worries when it comes to having sex.  I am no expert but I have my own experiences to draw on and thought the easiest way of answering some of these which I see people asking about, would be to write a list.  So here are my ‘top tips’ and I hope they help!

My Top Tips For Sex With An Ostomy

EMPTY YOUR BAG – I always empty mine before getting into bed anyway, but the last thing you want is a bulging sack of poo between the two of you while you are trying to feel sexy.  Obviously, if the moment takes you by surprise you might not have had chance, but during the day you will be regularly emptying it for comfort anyway.

SELF – CONFIDENCE – This is probably one of the hardest things to master.  Being body confident and feeling sexy with your bag may take some time but with the right partner and some time you will get there.  In the mean time there are a couple of things you could use to help!  First up – sexy underwear.  The Jasmine Stacey Collection has been designed by an ostomate who knows what it is like and it is stunning!  Some of the pieces are even crotchless, so you can keep your bag covered up while still enjoying yourself, if that makes you feel more comfortable.  Jasmine designed the range as she was fed up of high waisted underwear which is perfect for ostomates, being boring, practical and unsexy.

Check out the Jasmine Stacey Collection website here

You could also try a bag cover.  Ostomy bags can generally look a bit clinical, so why not cover it up with a pretty cover (if you are really good, you could colour co-ordinate to your underwear).  I have previously bought covers from Stoma Style and can highly recommend them.  Lisa is fantastic and can help design you something amazing – the link to her Facebook page is here.  The lace heart bag cover design is a particularly good one for sexy time and there are lots of colours available.

FORGET ABOUT IT – This may sound easier said than done but when you are with your partner, you should be focusing on them, you and the moment, not worrying about other things.  Enjoy the moment.  Being intimate is all part of a healthy relationship and can definitely still be loved and enjoyed, even if you have an ostomy.

TAKE YOUR TIME – Don’t feel forced to rush into anything and make sure you take time to heal if your surgery has been recent.  The last thing you want to do is cause further issues.  Listen to your doctor’s advice for how long to wait post surgery and then only do it when you feel ready, you may need a little longer,  There are plenty of things you can still do to be intimate in the mean time even if you don’t jump straight in with full sex straight away.

BE PROUD OF YOUR SCARS – There is a story to everyone’s scars.  A journey you have been on.  Be proud of them, proud of what you have battled through and your victory.  Your partner may have been by your side during this battle and will be equally as proud as you are of them

EXPERIMENT – You may need to try different positions, especially at first while your body is still recovering from surgery.  Any persistent or severe pain needs to be reported to your doctor though to be checked out.  Having arthritis too, I have to be careful when my joints are bad but I am still able to enjoy a great sex life and so should everyone.

So I hope my list will have helped some of you.  Given you ideas of things to try or just the knowledge that people with ostomies (as well as other health issues) still enjoy a happy, exciting and regular sex life, no matter what the circumstances!

Please feel free to ask questions in the comments below and I will try my best to answer them but please go forth and enjoy some sex today with less worries and hang ups!

 

Leo and Riley’s Sunday Night Takeover

The boys are back and they want to introduce the newest members of our family!

Meet Dumbledore (left) and Severus (right) our new guinea pigs. The boys are in love and I must admit, they are super lovely and I may be a little bit too! Leo picked the name Dumbledore and Riley liked the name Gingerbread but as he was black decided to change to it to Severus to match! They are now almost 14 weeks old and have been with us for almost two weeks. They are settling really well. We have been handling them quite a bit so they get used to us and Dumbledore is getting much more confident now. Severus is a little more timid but enjoys a really good cuddle!

The boys have a few top tips if you are thinking of getting guinea pigs as they make great pets for little ones –

1) They don’t like being on their own so you want to get at least two (note from Mum – matching sexes or a female with a neutered male to prevent unwanted babies!) And make sure the cage or hutch you get is big enough for them both as they grow

2) They can’t produce vitamin C so we have drops to put in their water

3) You have to give them a good supply of straw to eat so their tummies don’t get poorly

4) They like cuddles and to make them feel safe you put your hand under their bum and one hand around their tummy under their arms. Then you hold them close to you

5) They like to run in tunnels and play games. Then they can have treats

6) We have got claw clippers so their nails don’t get too long

7) They like to run around outside so you should get them a run so they can play

8) Cats don’t like guinea pigs so you shouldn’t get them if you have a cat

9) They can live inside or outside but you should bring them inside when it’s really cold

10) They are the best pets ever and ours are the cutest!

So that’s their advice for if you are looking at getting a pet for your children. The boys will be back with updates on how Dumbledore and Severus are getting on I’m sure so keep your eyes peeled!