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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

10 things not to say to someone with Ulcerative Colitis or Crohns

Living with an inflammatory bowel disease, such as Crohn’s disease or ulcerative colitis, is a challenge.  Dealing with comments from the public who don’t understand IBD can be even harder…  I’m sure that most of the time people do not mean to be insensitive but it doesn’t stop those comments from being hurtful and annoying.

Here’s what not to say.

1. “You don’t look sick”

This is a biggie, IBD like many other chronic illnesses is sometimes referred to as ‘invisible illnesses’ because on the outside you look OK.  People don’t realise that it may have taken every bit of effort to get showered, dressed and out the door that day.  That I may have painted on a smile just to get through the day and may be dealing with pain, bleeding, multiple toilet visits, fatigue and just feel like shit.   10 things not to say to someone with ibd

2. “You have gained weight!”

Yes, I probably have.  Because I’m taking steroids that make me gain weight quickly and screw up my body.  If you are interested the drugs are also making me have insomnia and I’m growing a beard. You wouldn’t mention anyone else’s weight, so please don’t think you can talk about mine because I am sick.

10 things not to say to someone with ibd

3. “You have lost so much weight! You look great”

Just don’t talk about weight at all… People with IBD will have their weight fluctuate, if someone has lost a lot of weight it may because they have such horrific diarrhoea that they can’t absorb any nutrients.  The weight loss may make them feel weak and terrible, just because society says that thin means beautiful doesn’t make it so.

4. “I know what you are going through”

When people with IBD tell someone about their condition, they often hear all about that person’s digestive problems, it’s probably better to keep details of your diarrhoea or irritable bowel syndrome to yourself.

Unless you have the same condition, it is very difficult to actually understand what it like.  You can sympathise but unless you are in the same shit filled boat, you can’t empathise.

5. “You should eat meat/dairy/no dairy/only vegetables/no vegetables”

Please do not feel you have the right to comment on my diet.  I have an auto immune disease that causes my illness, though diet can have some affect on symptoms, it is not caused by eating junk food and I can’t be cured by going vegan.

6. “My aunt’s neighbour’s brother in law cured his IBD by….”

No.  No he didn’t.  Because there is no cure.  If there was a cure then I wouldn’t have had my entire colon removed would I…

10 things not to say to someone with ibd

7. “Can you hold it?”

I can’t.  If I tell you I need to go to the toilet, then it is likely I have to go straight away.  Being in a situation where you have an accident is mortifying, upsetting and humiliating.  If I could hold it then I would, and I do try my best so please be sympathetic and try to understand if I run off mid sentence or if you have to wait around for me because I am a long time in the bathroom.

10 things not to say to someone with ibd

8. “Why are you so tired, you don’t do anything”

Fatigue can play a huge role in IBD.  Either because I have been up 5 or 6 times through the night on the toilet or because of medication I am on, or because I am losing a lot of blood or sometimes for a reason I do not know.  Sometimes I have a tiredness so deep in my bones that I feel 100 years old, I am so exhausted that I can’t keep my eyes open and I could cry. A side effect of the fatigue is massive guilt, I feel terrible that I am so tired and that I can’t be ‘normal’ – your comments just make that guilt worse.

9.  “If you exercised more/relaxed/took vitamins/did yoga you would feel better”

You may be only trying to help, but offering ideas for how I can feel better can feel patronising and annoying.  I would try anything to feel better and I have probably thought of all those things.

10.  “You seemed ok when I saw you out last week”

Despite my illness I still want to try and lead as normal a life as possible.  So yes, sometimes I go out and get drunk, sometimes I go on holiday, sometimes I go walking in the countryside.  It is sometimes really, really hard to do these things and I have to paint a big smile on my face and do it even when it is tough. That photo of me smiling on the beach doesn’t tell the story that I am exhausted because I barely slept the night before, that I cried that morning because I was in pain or that I had an accident an hour before. Please don’t judge me or think I am faking anything.  Life is tough and if I can get just a little bit of time where I pretend to be the same as everyone else, then I am going to take it.

So there we go, my ten things not to say to someone with IBD.  Please understand that I do get that most people are only trying to be nice and would hate to think they were upsetting someone, but as we talk more and more about chronic illness I think it is important to talk about the things that can be a pain in the arse to deal with.

I am in no way discouraging people from asking questions or from talking with me about the disease, but there are some things that are good to say and some that are not so much…

Ask questions, ask how I am and try and be sensitive and understanding.

Love Sam xxx

Competitive sickness

I love the internet.  I think it’s amazing to have all the information in the world at your fingertips, we are at an unprecedented time where we can access anything and everything.

When you have an ongoing chronic illness like Inflammatory Bowel Disease, the lack of control in your life can be difficult to deal with, I always believe that gaining knowledge of your circumstances can make life a little easier, knowledge is power as they say.  I recommend to anyone going through illness to read up and know your own body.  Know what your treatment options are, what side effects your meds have, what you can do yourself to heal.

The NHS website is always a good starting place, but when I got very ill last year with Ulcerative Colitis I found that I wanted to know about personal accounts of illness, how it is in real life.  I wanted to read about real people and not medical jargon or terrifying medical photographs.  I struggled to find a UK based blog about IBD that I liked (though there seems to be LOADS now which is brilliant!!) and this is the reason I started So Bad Ass.

I found myself this year visiting forums and Facebook groups dedicated to people with IBD, I love that these groups stop you from feeling so alone, I have “met” a few people online from all over the world that I wouldn’t have had the chance to meet otherwise and feel inspired by them and think they do an amazing job at raising awareness and positivity around IBD, ostomies and jpouches.

But, and here is a BIG but… I have left a LOT of groups and forums because of one thing in particular, competitive sickness.

Now competitive sickness is when you have someone who, if you have had 3 surgeries, they have had 6.  If you ask a question about your medication, they will reel off a list twice as long.  If you are struggling because you have a wound that won’t heal, they have had to have a pig skin transplant… (that really happened)

To quote my brilliant step son, if you have been to Tenerife, they have been to Elevenerife!

I am poking fun a little here, of course we should all be sharing our stories.  The more we talk, the better informed everyone becomes.  But I am sure you know that one person who has always had it worse than you?!  They are always negative and the drama llama levels are sky high and they seem to have faced every illness known to man and had every complication going and they are going to complain about it ALL.

Of course I want to know about possible side effects, I want to hear personal accounts of surgery and not just the ones that have gone perfectly! But there are some who are just SO negative that it can really bring you down, scare you, make you feel like this illness is the end of your world.

I think everyone’s idea of support is different and so all you can do is have your own filter.  If someone’s story makes you feel terrible, it is probably best to not listen.  You can find out about negative parts of an illness with it being in an entirely negative way.  Support groups are meant to help, not hinder and so if you find yourself listening to a story that is dragging you down, remember you don’t have to listen! Cut the ties and float away from it for now!

I am sure that my stories and posts on here are not always everyones cup of tea.  I totally accept that and would advice you use the same filter technique here too.  If my posts are helpful, interesting, inspiring and make you feel good then fantastic.  If it is hitting a nerve that day, turn me off!

 

Love Sam x

A to Z of IBD

When I talk about IBD Im often faced with blank stares and so here is my A-Z guide to Inflammatory Bowel Disease… Please remember that I am not a trained medical person and these are my opinions only.  Always speak to your GP, doctor or nurse about any worries or concerns you have. xx

A is for Ass – IBD covers both Ulcerative Colitis and Crohns and is a disease of the digestive system, Ulcerative Colitis is a disease of the large intestine whilst Crohns affects anywhere from the mouth to the anus.  They cause diarrhoea and bleeding and so sufferers have to deal a lot with their ass (or arse if you’re from the UK) – My site name came from my nearest and dearest regularly asking me ‘how’s the ass?’ and my reply being ‘I’m so bad ass right now’

bad ass

B is for Bowels – Your bowels or intestine go from your stomach to the anus and consist of the small and large intestine, the small intestine begins at the duodenum, which receives food from the stomach, the duodenum transmits food to the ileum.  The large intestine consists of the colon and rectum.  The colon connects to the rectum, and finally the anus.  IBD can affect all the parts of the bowel and causes pain, cramps, bloody diarrhoea.

stomach intestine anus diagram

C is for Colectomy – A colectomy is the name of the surgery that I had in 2013 and consists of the surgical resection of any part of the large intestine.  I had a sub total colectomy which means they removed all of my colon apart from the rectum.

C is also for Colostomy – Most people have heard of a colostomy, which is a surgical procedure in which a stoma is formed by drawing the healthy end of the large intestine or colon through an incision in the abdomen and suturing it into place.  This allows waste to leave the body and be collected in a bag.

ulcerative colitis quotes

D is for Diarrhoea – not the nicest thing to talk about but one of the biggest symptoms of IBD.  Imagine that time you got horrific food poisoning or the worst stomach bug ever, you know that one time when you couldn’t control your bowels and it felt like an alien was about to burst forth from your stomach… Remember that? Yeah, thats what IBD diarrhoea is like.

E is for Endoscopy – Endoscopy plays a key role in the diagnosis, management, and surveillance of IBD. Because there is no single test that can diagnose IBD, endoscopy is useful in establishing the diagnosis, distinguishing Crohn’s disease from ulcerative colitis, defining the extent of the inflammation. In established IBD, endoscopy helps define the extent and severity of the disease which aids medical and surgical decisions.

Colonoscopies and sigmoidoscopies are commonplace, they are undignified, embarrassing and uncomfortable but as someone who has had so many of these procedures I can tell you that they’re not as bad as you may fear.  Sedation is offered and in my opinion should always be taken!  I also remind myself that the nurses and doctors do this everyday and there is nothing they haven’t seen before.

F is for Flare Up – people with IBD are not always sick constantly, they have periods of remission and illness.  These periods of being unwell are referred to as a Flare Up.  Flare ups can vary in strength and length of time and can’t be predicted.

ileostomy bag bikini swimwear beachwear holiday

G is for Gastroenterology – Gastroenterology is the specialty of diagnosing and treating diseases of the gastrointestinal tract and so these are the fellas who deal with us IBDers.  If you have IBD you will get to know your doctors and nurses very quickly.  If you do not feel that you are getting the right treatment, don’t be afraid to speak up.  I was under one team for years before I decided to change to another local hospital and a new team.  It was easy to do, all through my GP and I am so much happier with my treatment since then.

H is for Hospital – IBD is managed by a consultant and team of doctors meaning that sufferers spend a good chunk of their time attending hospital appointments.  Severe flare ups can require hospitalisation for more aggressive treatments and medication.  If the disease gets to the point of requiring surgery then hospital unfortunately can feel like your second home.

sam cleasby ulcerative colitis ibd ileostomy surgery

I is for IBS – IBD is not the same as IBS.  Not at all.  And it kinda pisses off IBD folk when people say “ohhh yeah my sister/brother/uncle/neighbour has IBS!!”

Irritable bowel syndrome (IBS) is classified as a functional gastrointestinal disorder, which means there is some type of disturbance in bowel function. It is not a disease, but rather a syndrome.  IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn’t result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD. People with IBS are not at higher risk for colon cancer, nor are they more likely to develop IBD or other gastrointestinal diseases. IBS seldom requires hospitalization, and treatment does not usually involve surgery or powerful medications, such as steroids or immunosuppressives.  This information is from the CCFA.

Im not belittling IBS, I know it causes great distress to those who suffer from it but it is very different to IBD and the two shouldn’t be confused.

I is also for Ileostomy – An ileostomy is a surgical opening constructed by bringing the end or loop of small intestine out onto the surface of the skin. Intestinal waste (shit) passes out of the ileostomy and is collected in an external bag that sticks to the skin.

woman with stoma ileostomy ostomy stoma images

J is for J Pouch – A J Pouch or Ileoanal Reservoir is a surgical treatment option for IBD patients who need to have their large intestine removed. It is an internal pouch formed of small intestine. This pouch provides a storage place for stool in the absence of the large intestine. Several times a day, stool is passed through the anus.  This is the next step for me and will mean I no longer have a stoma or ileostomy.

K is for Keep Calm and Carry On – because in reality, it is the only thing we can do.

keep calm and carry on

L is for Laughter – Now I know that this disease is serious business, it affects every part of your life and the pain and embarrassment can just feel too much so having L for Laughter may seem like an odd one.  But I really believe that laughter is the key to getting through the bad times.  The fact is that poo, bums and farting are a bit embarrassing for most of us, but they are also funny.  Seriously, toilet humour is hilarious and the quicker you can laugh and make a joke of something, the quicker it feels like less of a big deal.

M is for Medication – there are a variety of medications used to treat IBD, my experience has only been of Ulcerative Colitis meds but most have side effects and some people find the treatment as unbearable as the disease itself.   I believe that its really important to educate yourself on the medications and treatments available to you along with the benefits and side effects.  Take control of your disease and make sure the treatment path is the right one for you.

If your symptoms are mild you may not require specific treatment as mild ulcerative colitis often clears up within a few days.

Moderate ulcerative colitis is often treated using a medication called aminosalicylates. If this is not effective, alternatives such as corticosteroids (steroid medication) and immunosuppressants (medications that suppress the workings of your immune system) can be used.

Once your symptoms are under control it may be recommended you continue to take aminosalicylates as these can help prevent further flare-ups; this is known as maintenance therapy.

If you experience a severe flare-up you may need to be admitted to hospital where you can be given injections of corticosteroids or immunosuppressants.

There is also a relatively new type of medication called infliximab that can be used to treat severe ulcerative colitis where corticosteroids cannot be used for medical reasons.

This information comes from the NHS website.

stoma ileostomy photo shoot woman beauty ibd surgery ostomy

N is for the NHS – Only since my surgery have I realised just how lucky we are in the UK to have the NHS.  Though I had some difficulties (I changed hospitals and consultant once and had a bad nurse experience) I am a big fan of the NHS and feel so lucky to have had the level of care, treatment and support that I have received.  When I read about IBD patients in the US I am appalled at how their system works and realise the value of our countries medical care.

I can’t thank my doctors and nurses enough for the amazing care Ive had in the last year, they have truly saved my life and Im eternally grateful.

O is for Ostomy – The terms ostomy and stoma are general descriptive terms that are often used interchangeably though they have different meanings. An ostomy refers to the surgically created opening in the body for the discharge of body wastes. A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.

end ileostomy ulcerative colitis

P is for Pain – Pain is a common side effect of IBD, abdominal cramps and pain as well as a literal pain in your ass.  Living with pain is really difficult and has such a negative impact on the lives of those with IBD.  It can become difficult to manage as sufferers should not take anti inflammatory drugs or Nonsteroidal anti-inflammatory drugs, usually abbreviated to NSAIDs.  Other pain relief can also have an affect on the bowels and some are really addictive and should only be used short term.

P is also for Poo – in a post like this, how could it not be??

bristol stool chart cake

Q is for Quality of Life – This is a biggy for me, one of the main reasons that I wanted to go ahead with my colectomy surgery was because Ulcerative Colitis was really affecting my quality of life.  That is an understatement to be honest, my life with IBD was literally shit, it made me miserable.  I was exhausted both physically and mentally, I struggled to work, I dislike going places where I wasn’t near a toilet, my body was being wrecked by meds, I had little sex life, I was moody, angry with life and just felt hard done to.

I was pissed off that I had to live like that, it seemed so unfair.  Since my operation my quality of life has gone through the roof, though it is in no way an easy option it was definitely the right option for me.

R is for Rectum – Let me tell you about Phantom Rectums… Phantom rectum is a complication that can affect people with ileostomies. The condition is similar to a “phantom limb”, where people who have had a limb amputated feel that it is still there.  People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

Weird, annoying but hilarious to tell people about!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

S is for Support – Support is key to surviving IBD, from medical teams, friends, family and IBD groups.  It really is a shit disease to have to live with, and due to its taboo nature sufferers not only have to deal with the physical problems but also with the huge emotional toll it takes on your life.  Embarrassment, shame, humiliation, anger and a deep sadness are all emotions that Im at war with every day and it is only with the support of my husband, family and friends that I get though it.  My blog is a coping mechanism for me, if I can write it down and feel that Im helping someone else then it feels that the crap I deal with has a purpose.

Im also a member of the IA Support (Ileostomy and Internal pouch support) and I visit the Colitis and Crohns site regularly.   Whoever you choose to talk to, just talk to someone.  I guarantee you that it helps, I get many emails and messages through this site and always try to reply to and support anyone that I can. xxx

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

T is for Toilets – IBD sufferers are well acquainted with not only their own toilet but those of all friends, family and all public toilets in their surrounding area.  I can’t even imagine how much time I have spent on the pot in the last ten years, considering that during flare ups I could be going to the loo 20 + times a day.

As a side note, you can request from Radar a key to use disabled toilets around the UK as when you need to go, you need to GO… Having washing facilities by you is a life saver when you have IBD.  So next time you see someone who doesn’t look ‘disabled enough’ using the facilities, wind your neck in..

U is for Ulcerative Colitis – I was diagnosed with Ulcerative Colitis in 2003, it was a life changing moment and I struggled to deal with the idea of having an illness for a while.  UC is inflammation and ulceration of the large intestine or colon, it presents itself with bleeding, diarrhoea and pain.

ibd warrior inner strength confidence ostomy ileostomy bag

V is for Vegan, or Vegetarian or the raw diet, or the beige diet – There are a million and one people across the internet who claim to have the ‘cure’ for IBD through diet and pills.  The fact is that if you are suffering from IBD you should NEVER start any massive change to your diet without speaking to a doctor first.  Doctors do recommend a low residue diet during flare ups but please talk to an expert before trying to heal yourself with foods, drinks or any herbal remedies.

W is for Weight – IBD can really negatively affect weight, for many the disease stops the body absorbing nourishment which means drastic weight loss and those people really struggle to keep themselves at a healthy weight.  For others the meds and illness cause weight gain, puffiness and bloatedness.  Neither is healthy and neither make the person feel good.

X is for X ray –  Or Xylophone.  But I can’t think of a way to connect IBD to a xylophone so we will talk X rays.  X-rays form a  series of tests that may be done on people with IBD.  Sometimes using barium and at other times without, X-rays are used less these days as clearer tests are more commonplace.  I have had a couple of X-rays before to check for toxic mega colon, which is not a Muse song but an acute form of colonic distension where the colon becomes extremely swollen and massively enlarged.

stoma ileostomy photo shoot woman beauty

Y is for You – How IBD affects you comes down to how you choose to deal with it, it is bloody hard work to be ill and it can be depressing and make you angry, sad and broken.  But your courage and bravery of just getting through each day is something to be proud of, remember that.

Z is for Zzzzzz – Or sleep (give me a break, Z is hard!!!)  IBD can not only affect the amount of sleep you’re able to get but the quality of sleep as well.  Whether it is through medication, pain or getting up through the night with diarrhoea and bleeding, lack of sleep can cause all sorts of problems such as

  • Difficultly getting to sleep
  • Difficulty staying asleep
  • Problems with concentration
  • Headaches
  • Poor attention
  • Changes in mood
  • Fatigue throughout the day

Side effects from many medications that are given to an IBD patient can also cause sleep problems.  Steroids such as Prednisone can keep a person up all night.

Love Sam xx