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Dehydration and ileostomies

I was warned when I was in hospital that dehydration is a massive problem for folk with ostomies and pouches, this is because your large intestine absorbs water from your food and a lot of the salt your body needs so if you don’t have a large intestine, you are in for a bit of trouble.

This means that I am always thirsty and drink litres and litres of fruit squash a day, I find water goes through my system too quickly and was advised by a doctor to try adding dilute squash to it as the body has to digest it and so hangs on to the fluids for that little bit longer.  I keep a store of squash in my ensuite bathroom as I drink two or three pints just through the night and so it stops me having to go downstairs at 2am.

Ostomy Lifestyle recommend this…

“People with ileostomies, particularly if the stoma is formed higher up in the bowel, can have more difficulties with their fluid intake. This is because it is the role of the large bowel to absorb water (and salt) and for people with ileostomies this is no longer being used. The small bowel will, with time, adapt to absorb more water and more salt, however careful attention should be paid to ensure that you are drinking an adequate, varied fluid intake (e.g. water, juice, cordial, herbal/fruit teas, etc) to maintain kidney health. Remember, you are aiming for light straw coloured urine.

For those who are more active it is even more important to pay attention to your fluid intake. Fluids lost through sweating contain electrolytes, so it is important to replace those with specialist sports drinks. 

Everyone should bear in mind that alcohol is a dehydrating fluid in the most part and caffeinated drinks such as tea and coffee cause you to lose more fluid in your urine. The majority of your fluid intake should therefore be from fluids such as water and fruit cordials.”

The other issue is salt.  As you don’t absorb salt well it is recommended to increase your salt intake at least for a while after surgery.  I find I crave salt and add it to pretty much everything since having my bowel removed.  I am a big believer that if you are craving something, it tends to be because your body needs it.

“Salt is important for nerve and muscle function and is found naturally in most food and drink. There are risks associated with both having too much and too little salt in our diets. Too much salt can lead to high blood pressure, which can make you more likely to develop heart disease, or have a stroke, while too little salt can cause headaches, cramps and fatigue. While there is some evidence that people with ileostomies can lose between 35-90mmol of sodium per day (equivalent to up to a teaspoon of table salt) because this would normally be absorbed in the large intestine, each person with an ileostomy will differ in terms of the amount they lose. There is also evidence that the small bowel of someone who has an ileostomy adapts over time to compensate for absorption issues. But, in the first few weeks after surgery you may need to add salt to your food and have additional salty snacks. There is conflicting information about long-term addition of salt to diet but evidence shows that most people have adequate salt in their diet to make up for what is lost through their ileostomy and there is no need to add more.”

Stomawise says…

“It is important to know the signs and symptoms of dehydration as well as preventative measures.  These symptoms can include thirst, dry tenting skin, abdominal cramps, rapid heart rate, confusion and low blood pressure.

Dehydration can occur after ileostomy surgery as the purpose of the large intestine is to absorb water from the indigestible waste and then expel the waste material from the body through bowel movements.

During ileostomy surgery, a part or all of the large intestines is removed, which prevents the body from absorbing water from the waste before it is excreted from the body. Dehydration can occur when the person does not drink enough fluids to replace the fluids lost as the waste moves through the stoma and into the attached bag.

Your Daily intake of fluids should be 8-10 (8 oz.) glasses per day and can be of any liquid containing water (soda, milk, juice, etc.) to help meet your daily requirement.

Dehydration can also upset your electrolyte balance (especially potassium and sodium) When the colon (large intestine) is removed, there is a  greater risk for electrolyte imbalance, Diarrhoea, excessive perspiration and vomiting can also increase this risk.

You should be aware of the signs and symptoms of dehydration and electrolyte imbalance. Dehydration and electrolyte imbalance is more common with an ileostomy as opposed to a colostomy.

Dehydration
Increased thirst, dry mouth, dry skin, decreased urine output, fatigue, shortness of breath, stomach cramps.

Sodium Loss
Loss of appetite, drowsiness and leg cramping may indicate sodium depletion.

Potassium Loss
Fatigue, muscle weakness, shortness of breath, decreased sensation in arms and legs, and a gassy bloated feeling may indicate potassium depletion.”

I am researching Himalayan Pink Salt at the minute for a future blog post, I’m not sure what I think yet but will write about it asap!

These are issues that most people don’t even think about, I thought I would bring it up as I recently spoke to two different people who highlighted to me that there are so many other issues and side effects to having Inflammatory Bowel Disease, a stoma or a pouch that people just do not know about and so thought I would share.

So next time you see an IBDer downing a pint in one or having an extra shake of the salt, you may just understand a little more.  And if you have a stoma or jpouch, take note and keep an eye on your hydration as the effects can be grim and we don’t need any other reason to feel crap!

 

Love Sam xx

I <3 MY STOMA

After a year of blogging here at So Bad Ass I am OVER THE MOON to see so much about IBD, Crohns, Colitis and living with an ostomy in the media.  It is a really exciting time and Im so pleased to see stories and pictures in the news and going viral.  As you may know my aim is to #stoppoobeingtaboo and so it is fantastic to see the disease and treatments being talked about.

Im loving the bikini shots doing the rounds, I have been open and shared my photos for the last year as I think it is so important to demystify and show the reality of having an ileostomy or colostomy bag and so I think the other people sharing their pictures are just brilliant.

 

 

ileostomy bag and fashion swimwear

 

 

I am now 7 weeks post pouch surgery and so I am learning to live without my ileostomy after 9 months with my stoma and bag but it got me thinking about how that bag changed my life so massively.  After ten years of ulcerative colitis and endless hospital stays, medication and different treatments I had surgery to remove my large intestine and an ileostomy formed.

For the first time in so long I suddenly felt like I had some control back in my life.  Don’t get me wrong, it was major surgery and the recovery was tough but I was no longer going to the toilet 20-30 times a day, I wasn’t bleeding or in pain and it changed my life in such a positive way.

It was a big decision and a terrifying one, but it was the right thing for me and I honestly did love my stoma.  It was a funny little thing, I had no control over it and it bubbled and trumped whenever it felt like it.  I named it Barack Ostoma (no real reason, I just love a pun and it made me laugh!) and it allowed me to go traveling to Vietnam and Australia just three months after surgery, something I couldn’t imagine trying to plan whilst being ill with Ulcerative Colitis!

And so today I just want to celebrate my stoma and ask you to share my post, let’s show the world what is under the bag.  It isn’t terrifying or ugly, it isn’t dirty or something to be ashamed of, it is a surgical alteration to the body which changes lives and helps people live again.

I <3 my stoma.

What do you think of it?

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Love Sam xxxx

First ever vlog! How to change your ileostomy bag video

I have been threatening to do this video for months and never got round to it, so here it is.  My first ever vlog, a how to video on how to change your ileostomy bag.

Enjoy!

 

Love Sam xx

A massive f**k you…

This week a friend told me that someone she knew had just had a colectomy and ileostomy.  One of his ‘friends’ had this to say on the matter…

“If I had to have one of those bags I would shoot myself.”

Really? Wowzers.  Im not going to explain all the reasons that this is totally messed up so Id just like to send that person these…

queen fuck you

Love Sam xx

Woah! Eventful Friday night!

It’s all gone a bit dramatic here tonight, it started with a total bag blow out.

One minute I was cooking dinner with Timm, the next I heard a popping noise and felt a huge whoosh as the contents of my bag spectacularly emptied out down my legs and into the kitchen floor.

With an ‘oh shit’ from me, the husband realised what was happening and we both leapt into action. Well for me it was more of a legs together weird shuffle to the bathroom whilst Timm followed with my supplies and then he went to clean up the poonami in the kitchen.

I’m a lucky woman to have such an awesome husband to look after me. If I’m honest, I bloody hate that he has to deal with my shit (literally) I find it embarrassing and upsetting. But he deals with it all in a way that makes life so much easier and I find it easier to allow him to help me because he’s just so cool about it all.

sam cleasby blogger writer stoma ibd

After Id showered and sorted out a new bag I rejoined Timm and we finished making dinner and all was well in the world…

Then after dinner we headed out to the supermarket, we’re trying out meal planning and so we wanted to shop together to get next weeks groceries. As I got in the car I started to have stomach ache, by the time we got to Morrisons I was in quite a lot of pain. It kind of felt like trapped wind so I tried to ignore it.

Then it got worse, I went to the loos and I thought I was going to pass out from the pain. It felt like my stomach was bursting open, I’ve not hurt that bad since I was in labour. I came out and was sweating, pale and thought I would faint from the pain.

A lady sat me on a bench and I called Timm who was walking round with the trolley to tell him I needed to go home.

He practically carried me to the car and drove me home whilst I was grunting, shouting and swearing. I honestly thought something had burst inside me. It was agony.

I got home and laid in bed and removed my bag. My stomach was really swollen and my hernia really pronounced. My stoma was large and dark coloured. I was crying in pain as Timm got me painkillers, I really thought I needed to go straight to hospital.

As I laid flat my stomach started to relax and then I felt a weird feeling and my hernia seemed to shrink back into my stomach. And the pain just went.

It was the weirdest thing, one moment I was rolling round in agony, the next I just had a slight ache.

We’re thinking it must be the hernia?! That it came out a lot and then as I relaxed and laid flat, it sank back in. Who knows?! I haven’t eaten anything different today than I’ve had before. I haven’t drank quite as much as usual but just got no idea.

I felt quite embarrassed at the drama I caused and how much grunting and swearing I did!!! I’ve had painkillers and going to stay in bed now and relax.

parastomal hernia recovering from ileostomy surgery and hernia

Excuse the mess in my room! We are moving house in a couple of weeks and there are boxes everywhere!!!

I’ll speak to clinic/stoma nurse as soon as possible to see what they think it was. If any ostomates have any ideas I’d love to hear them! Perhaps I’m doing too much, I’m packing and cleaning our current home. I have no idea, I’m just glad I don’t feel like an alien is bursting through my stomach any more!!!

Thank you Timm for dealing with all my stoma dramas tonight, you are my hero and I couldn’t deal with all this without you.

exceptionallyawesomehusbandsobadass

Thanks for reading

Sam xxx

Pouch surgery after ileostomy – making the decision

I had my first surgery on 3rd September and that was a subtotal colectomy with ileostomy.

My options from that point are…

To keep the ileostomy permanently, this would mean one more surgery where they remove all my rectum and anus and sew everything up! (Barbie butt…)

To have a pouch made out of my small intestine that is attached to my butt so that I can then empty my bowels through my bum and not have an ileostomy any more. This is two more surgeries.

To wait. There is no immediate need to make the decision. I can wait till I’m entirely sure. They like you to make the decision within 3-5 years as the risk of cancer in the rectal stump (least attractive words ever…) increases after this point.

There are pros and cons to all options. I’m dealing with my bag well now, but I just don’t know whether I’m happy to have it forever. The surgery is so FINAL…

But the pouch surgery can be a difficult recovery. They say to give yourself a year to recover. The muscles in my arse haven’t worked for do long that it takes a while to re learn how to use them. The pouch is also quite small and so learning how to use it can take time.

There’s also the thought of two more surgeries which is pretty terrifying.

I’m scared of going back to hospital, I’m scared of being helpless again and I’m scared that the recovery will break me.

BUT I think I have made the decision.

I’m not ready to give up on my arse, as much as my bag is now easier to deal with I just don’t think I want to keep it forever without even trying the pouch surgery. So I’m going to see my consultant in a couple of weeks to let him know that I’d like to move forward.

My life is currently crazy busy, between our family photography business, family stuff, planning our wedding renewal, a summer working with our arts group Responsible Fishing around the UK and a million and one other things, I’m hoping that the surgery could take place after September when things should calm down a little!!

The decision is a big one and I’ve spent a long time deciding what I want to do as well as talking to my husband and a lot of people on forums around the net. Who knows if it’s the right one? If the pouch surgery didn’t work or just wasn’t the right option for me, I now know that I could deal with keeping my bag forever, but I think I’ll regret not trying to regain a more normal life and having the pouch.

I’ll post more after my hospital appointment!

Sam xxx

Struggling with a swollen stoma in the heat

Sorry it’s been a couple of weeks since my last post! We’re having such an amazing time in Australia that I haven’t had the time or energy. It has been non stop in exploring, visiting family and generally just having an amazing time!

My stoma and bag have been doing ok but the last few days I have been struggling. My stoma swells in the heat and when I’m exerting myself, I don’t want to miss a thing so I’ve been snorkelling, swimming, walking and doing everything I can. The problem is that my bag has to fit snugly around my stoma and so when I cut it to fit my swollen stoma, as the swelling decreases it leaves a gap and that gets the acidic output on my skin so I’m left with a Red raw ring of skin.

If I cut my bag to fit my normal sized stoma, when it then swells, my bag cuts into the edge of my stoma. It is now ridged, bleeding and very tender.

I’m in catch 22! If anyone has any advice it would be greatly appreciated. I have texted my stoma nurse for help and I have arranged a clinic visit for when I’m back in the Uk. We fly home on Tuesday, I can’t believe it’s been almost 6 weeks!!

Apart from the issue my stoma and bag have been entire dealable. I’m really glad we came traveling and would recommend anyone with a stoma to not be put off by the idea of travel.

This trip would have been impossible during a flare up. My bag meant I have had a trip of a lifetime and been able to enjoy things I never thought I would.

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Love Sam xx

UPDATE – I spoke to my stoma nurse who suggested using a donut (a sticky , mouldable ring) around my stoma before I put my bag on. This didn’t solve all the problems, but it definitely helped!!

When in doubt call your super stoma nurse!!!! Xxx

2013 – what a year!

This year has been filled with highs and lows. I got sick, lived in an amazing house, held our Cleastonbury festival, laughed a lot, cried quite a bit, had my colon removed, got an ileostomy bag, had some big disappointments but also some fantastic highs, I have visited Vietnam and I’m ending the year in Sydney with my big sis!

I’ve faced my biggest challenges this year, two weeks in hospital, IV steroids, moon face, mood swings, pain, fear and the ‘decision’ – I had a subtotal colectomy with an end ileostomy and spent the last four months living with an ileostomy bag.

sam cleasby ulcerative colitis ibd ileostomy surgery

It has been one of the hardest years of my life, there were times when I felt so low, that life was unfair and that I didnt want to have to deal with all this.  But through the support of my friends and family I got through it.  I founded this blog as a cathartic way to express my feelings while I was on this rollercoaster ride and was amazed that so many of you read it.  Over 30,000 views since I started!!!!

ulcerative colitis surgery ibd ileostomy hospital

As tough as this year has been, I have come through stronger and with a sense of what I want from life.  Im more adventurous and open to change, I want to make the most of every second, Im braver than I thought and stronger than I seem.

colectomy scar ulcerative colitis

I am covered in battle scars that remind me of what I have been through, Im not ashamed of them nor do I feel the need to hide them or cover them up.  I wear my ileostomy bag with pride as it is a symbol of wellness for me.  Before my operation my life was ruled by the toilet, my quality of life was suffering and I just couldnt see a happy future.  Now my bag lets me lead a better life.

stoma ileostomy photo shoot woman beauty ibd surgery ostomy

Im travelling at the moment, I am been to Vietnam and Im in Australia now.  This is something I couldnt dream of doing before as the fear of having a flare up would have ruined it all.  In the last 3 weeks I have been swimming, snorkelling, rode a bicycle around a Vietnamese island, travelled over 12,000 miles, hiked through Aussie bush and LIVED.

vietnam bicycle ulcerative colitis ibd warrior ileostomy ostomy stoma adventure life travel

2013 has made me realise that who you are is not what your life throws at you, but how you choose to deal with it.

ibd warrior inner strength confidence ostomy ileostomy bag

woman with stoma ileostomy ostomy stoma images

woman with stoma ileostomy ostomy stoma images

sunbathing with an ileostomy stoma ostomy travel holidays bikini swimwear

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So that was 2013, lets see what 2014 brings!

Happy New Year to you all!

Love Sam xx

Traveling with an Ostomy

In less than two weeks I am setting off with my husband and kids on an awesome adventure.  We are going to Vietnam and Australia for six weeks and I can’t wait!!

world adventure

I had a subtotal colectomy and end ileostomy on 3rd September this year and so it was a concern of how I would deal with travelling with an ostomy but after research and getting organised I am feeling confident that everything will be fine.  I thought Id do a bit of a guide to traveling with an ileostomy to get all the advice in one place for other people.

Insurance

Our trip was already booked when I ended up having the surgery but I hadn’t yet sorted our travel insurance.  When I looked a couple of weeks after the op I had a shock to find many companies wouldn’t cover me at all and the ones that would were charging around £900-1000.  After picking my jaw off the floor I started looking into it and found that the high cost was mainly due to it being less that six weeks since my op.  I looked again 7 weeks post op and found an insurance to cover me and the family for £185.00 from Holiday Extras.

Insurance was so important to me, as much as I am feeling great at the minute, I needed to know that should anything happen with my stoma I could get medical help easily and it wouldn’t end up bankrupting me!

You an find a list of recommended travel insurers on the IA Support website.

Supplies

I spoke to my stoma nurse about what I needed to do for supplies and she let me know that I needed to take one and a half to two times as many supplies as I would usually need.  Im travelling for 6 weeks so Im taking 90 ileostomy bags plus wipes, disposal bags, barrier wipes and all the other gubbins!

My delivery company and prescription service were absolutely fine with me ordering extra supplies once I had explained my trip.  Its worth my peace of mind to take extra supplies so I know I have plenty if needed.  The majority is being packed in my hand luggage with a supply in my checked luggage so I know that should all my checked luggage get lost I still have plenty of bags with me.

Please remember that scissors and aerosol sprays are not allowed in hand luggage so pre cut your flanges so you have no issues there.  Also any liquids need to be under 100ml and stored in a clear sealed bag to go through customs.

travel with ostomy stone ileostomy

I also packed stickers to cover vents for bathing/swimming, waterproof tape for added security when swimming, a spare belt, stoma paste and stoma donuts.  A box each of Dioralyte and Immodium incase of dodgy stomach problems whilst we are away.  I packed everything into a carry bag that will fit inside my carry on luggage so if security want to look through, everything is together.

stoma travel

Im also packing my usual ‘handbag kit’ of one pouch, a few wipes and a disposal bag so I don’t have to haul the large bag to the aeroplane toilet.  Plus a spare pair of knickers and some jogging bottoms in case of all out bag leakage!

Travel Certificate

You can get a travel certificate from your stoma nurse or from the IA Support by e-mail , or telephone IA free on 0800 0184 724.   The certificate says that the bearer has a medical condition that would require them to have a private room if searched and explaining the medical equipment being carried.  It is there to give the confidence to the holder when travelling and are able to explain their condition but still keeping it discreet.

ileostomy travel certificate

ileostomy travel certificate

Food and drink

When you have an ileostomy you are always at risk of dehydration, add in hot weather, sweating, flying and different food and drinks and it can be a real problem when travelling.

Sports drinks and rehydration solutions (available from pharmacies) will help replace salts lost through diarrhoea and sweating. The impact of tummy upsets caused by unfamiliar foods and foreign water supplies can be exaggerated for people with stomas so it is worth being extra careful with regards to food hygiene and to drink bottled water (remember that ice in drinks will be local tap water!)

As we are going long haul my plan is to have a few days before on a very light and bland diet, plenty of fluids and some Immodium before the flight.

During air travel, you may find that there is increased gas in your pouch for the duration of the flight. To prevent additional gas formation, avoid drinking fizzy drinks or beer during the flight.

Confidence

The biggest thing to take with you on your travels is confidence.  I admit to having nerves about being away from my safe home and dealing with my stoma and ileostomy bag, but then I remember that without the bag I could be in the middle of an Ulcerative Colitis flare up, I could be in pain, exhausted and going to the toilet 20 times a day.  I can’t even imagine how Id deal with four 12 hour flights with a flare up, the thought of that brings me out in a cold sweat!  So whatever nerves I have about traveling with an ostomy, it HAS to be easier that traveling with a flare up!

I am nervous about going on the beach and people reacting negatively to my bag, Im scared about leaking on the plane or during a day out.  I am worried about ruining a holiday of a lifetime because of my stoma.

But all these things are my mind working over time.  In reality if ANY of these things were to happen I will deal with it! If someone was mean about my bag Im fairly sure I could laugh it off and if not my husband would shout at them.  A lot.  If I have a leak I am now practiced in dealing with it as is Timm, Im going away with my best mate and he makes EVERYTHING easier!  So I am going to put all those worries out of my mind and enjoy the trip of a lifetime!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I hope this has helped any ostomates who are looking to travel, just remember we have faced tougher times than this and come out of it stronger and tougher… Now is the time to enjoy some relaxation and leisure during your holiday! Good luck!

We will be updating a family travel blog whilst we are away so you can keep up with me here.
 I will try to pop the odd post on So Bad Ass and will also be on Facebook and Twitter – so keep in touch xxx

Post Surgery check up – moving forward

Last week I went for my post surgery check up, it was 10 weeks post op and I was feeling a little nervous.  Timm and I went to the Hallamshire to meet with Mr Brown, my consultant.  He came into the room, looked at me and said “Mrs Cleasby?!” He looked at his notes and said “3rd September? How are you?”  I replied that I felt great.  He was genuinely shocked and said I looked a lot better than he would expect someone 10 weeks post colectomy to look, which was a great boost!

He went through my histology which as predicted showed severe ulcerative colitis through my large bowel, but nothing more sinister.  We also chatted about a few problems I have had, my hair is falling out by the handful which has been quite alarming, Mr Brown says it is a result of just how poorly I was before the surgery.  Im also having a few problems with my joints, especially in my hands, they believe this will go in time and again is a consequence of the ulcerative colitis.

gold boots

I rocked my gold boots at the hospital – why do I feel the need to dress up for the consultant?

I am feeling great right now, Im pretty much recovered from the surgery and getting used to my ileostomy bag.  I have had no leaks for weeks since finding the right bag for me (still using the dan sac nova 1 easifold convex) and I have been swimming, walking, going to the gym and even been to a spa.  I was really nervous that the steam room or sauna would cause my bag to just peel off but I had no issues at all!

I had my first communal changing room experience with the bag.  As most women know, the communal changing room is a fearful place.  There is always someone with a really hairy fanny that has no problem in drying themselves with one leg on the bench, there is always a super skinny woman with pert breasts proclaiming loudly about how terrible she looks in a bikini and the rest of us just trying to dry off and get dressed under a towel without making eye contact with anyone else.  Well I was nervous and initially went into the loo to change.  I emptied my bag and checked there were no leaks or any problems and then I decided to bite the bullet and change in the communal area.  After drying and putting on my underwear I realised I could do with blasting the bag with a hairdryer so my clothes didn’t get damp.  And I did it!  I think I got a couple of people having a sneaky glance, which didn’t bother me as it was more curiosity than anything else.  I helped that I was with my good friend who always boosts my confidence.

Anyway Mr Brown and I talked about how I was getting on with my ileostomy and what my options were to move forward.  My options are that I can keep my ileostomy bag permanently – this would require a further surgery to remove my rectum and anus giving me what is known amongst ostomates as “Barbie Butt” as there is nothing left there!!

barbie butt

My second option is to have pouch surgery.  Pouch surgery is also known as ileo anal pouch or j pouch surgery.  Surgeons will form a pouch from the end section of my small intestine that is then attached to my rectum.  Another ostomy will be formed whilst the new pouch heals, then in another surgery that will be removed so I would have no external stoma or bag and I would be able to poo in a ‘normal’ way.

pouch surgery

There are pros and cons to both options and my answer to Mr Brown was that I just don’t feel ready to make a decision yet.  He is happy with this and gives me 3-5 years to make the decision! After this time my risk of cancer and other problems in my rectum and anus increase and so they like to have a decision by then.  I have arranged another appointment in six months time and hope to have made the decision by then.

I really don’t know what to do for the best.  Part of me really doesn’t want to have a bag for the rest of my life but I kind of feel like ‘better the devil you know’ – there are quite a few possible side effects of the surgery that don’t sit well with me.  I am just so undecided right now that I think it would be silly to try to make such a huge life changing decision right now.  Ill look into everything in the next few months and see what I think.

Life is busy at the moment, business is booming and I am planning for our family trip to Vietnam and Australia!  We are going for almost 6 weeks to visit my sister and have a bit of an awesome adventure! Ive spent a lot of time researching travel with an ostomy and feel pretty organised and confident that all will be well.

Love Sam xx