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To the woman who tutted at me using the disabled toilets…

Dear lady who loudly tutted at me using the disabled loos,

I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the disabled loos.

The fact is that I have no bowel. I have a pouch formed from my small intestine which can’t handle volume and so I have to go to the toilet and poo several times a day. My lack of large intestine means that my stool is totally liquid as I have no means of absorbing the fluids in food and so its really hard to hold it when I need to go.

I sometimes have accidents which means a large toilet that has a sink right by me means I can clean myself up when things go awry.

I hate having to use the disabled loos as I have to deal with people like you staring, nudging, tutting. And whenever I can, I use the ladies toilets. Just so you know, disabled loos usually smell bad and don’t seem to be cleaned as often or as well as the ladies and so I wouldn’t choose this option unless totally necessary.

Whilst I’m at it, I’d like to address the cleaner in the supermarket ladies toilets I used this week. As I ran in, knees together, bursting through the door and running to the cubicle, I’m sorry that the noise of my (lack of) bowels made you burst out laughing.

I can actually take the sniggering as since I had a pouch made from my small intestine because my disease ridden colon was removed during surgery, the noise I make when I defecate is hilariously loud. Seriously, I get it. It’s comedic in it’s volume.

But before you ran outside the loos and called to your friend “OH MY GOD! You should hear the noise in there!!! I wouldn’t go in if I was you!!!!” Perhaps you could have noted my daughter who was waiting outside with our trolley because her mum had had to leave her stranded to run to the toilet. Perhaps you could have stopped and heard me sobbing with pain because the acid in my stools has no way to be neutralised because I don’t have a large intestine and so opening my bowels actually burns my skin.

Perhaps you both could have shown a little empathy, a little compassion, a little understanding.

Poo is funny. Disability is confusing.

I get that.

But humanity and care for fellow human beings is a choice.

To everyone else reading this, the next time you see someone who doesn’t “look disabled” using a toilet.

Or someone bursting through and crashing into the toilets noisily.

Take a moment. Remember that not all people who have the right to use disabled toilets are in a wheelchair. Some of us have a jpouch, a lot of us have an Ostomy bag that needs emptying and changing with the use of space, a sink and a bin. And even more of us just don’t want to shit our pants in public.

Think about the nearly 300,000 people in this country who have inflammatory bowel disease (not to mention the huge number of people with IBS!!!) who need to use the toilet urgently, noisily, smellily…

It’s an embarrassing enough thing to deal with before having to see disapproving looks or hear your laughs and jeering remarks.

Be kind yo…

Peace out

Sam xxxxx

Life with chronic illness – what it's really like

“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending,  there is no end in sight, there is no cure or end game.

And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it.  The guilt, the idea that you are a burden to those around you.  It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a patient, weak, ill. It is so hard to deal with this.

How on earth can you fight this emotional suffocation when the root of it is never going to leave you?  If you have a ‘normal’ illness, you see the doctor, get a diagnosis, receive treatment and get better.  Chronic Illness just doesn’t follow that path.  Often diagnosis is difficult as the symptoms can be confusing and varied, it is so hard to quantify a tiredness that never goes away, or a feeling that your limbs are lined with lead.  How do you explain that your mind whirs constantly whilst simultaneously feeling like it is filled with porridge?

sam cleasby ibd blogger sheffield chronic illness

Being ill in this way is living with the unknown.  Every day is different, it’s hard to plan when you have no idea how you will feel when you wake up, not knowing whether you will feel ok or like you are 100 years old.  And so it is hard not to feel anxious, depressed or completely lost when you are in living one huge question mark.  There are constant questions and often no answers.

When people say “Get Well Soon” or ask how you are feeling, it is an uncomfortable exchange, you can either lie and say ‘fine thanks’, or horrify them with honesty ‘Well I have a slight blockage, a hernia, I have been to the loo 16 times today, the acid in my poo has burnt the skin on my bum and I am so tired I feel like I am dying’ or the one I usually go for is ‘getting there!’ with a cheery thumbs up…

People don’t know how to deal with chronic illness, both the person who has it and the people around them.  There is no guidebook for lifelong illness, no way to answer all the questions because it is so personal and there are so many illnesses that are a lifelong battle.

When you have an autoimmune disease, your body is literally fighting against itself.  The physical side of it is all through the body, living with daily pain, fatigue, aches, toilet trips, medication, food intolerances along with hospital trips, surgeries, treatment.  It is, at times, too much to bear.

But mentally and emotionally it is devastating.

The title of this post is ‘what it’s really like’ and I want to try and explain how I feel mentally…

I feel like my body is a failure, that it lets me down constantly.  I feel guilty.  I feel like a burden to others.  I feel like I let down people around me.  I feel like someone has a grip on me, a crushing hold on my chest that is squeezing the life out of me, holding a pillow over my face.  I am exhausted from trying to be stronger than I feel.  I feel a sickly jealousy when I see healthy people.  A heavy hearted knowledge that my illness affects my husband and children, that I am not the wife he deserves or the mum they need.

I feel a sadness that sits deep in my bones, a guilt that is a lump in my throat stopping me from speaking and an embarrassment that my body is so broken.

exhausted quotes chronic illness

That is a bad day.  On a good day where I have little pain, few toilet trips and energy in myself, I feel upbeat, I feel proud of myself, I enjoy life because I know this healthy feeling may only be brief, I love harder, I am more open, I laugh longer, I am silly, I am fun. I have hope.

And hope is key.  Without hope, we have nothing.

This is life and so you have to learn to live it.  And LIVE well.  Your life may not be the one you have hoped for, the life you ever imagined.  But is the one you have and there is nothing you can do to change that.

You can’t take anything for granted, and sit on your laurels, you are ill but at least you have a life, there are many facing cancer and other illnesses that are terminal and so you can’t feel sorry for yourself.  (Not all the time, but sometimes everyone needs a full on mope!)

You learn to embrace and enjoy every good day you have, as you don’t know when the next one will be.  You learn to appreciate the small things, the good things in your life.  You take control of your own destiny and try everything you can to make your health better, through diet, medication, alternative therapies, talking, sharing, living…

Being sick makes you a lot of things, many negative, but some can be positive. Strength. Weakness.  Empathy.  Guilt.  Wisdom.  Fear. You have to take the lows, but learn to see, embrace and appreciate the highs too.

What is living with a chronic illness like? This is my story, but ask others.  You have a friend with ME/CFS? Lupus? Rheumatoid Arthritis? IBD? Don’t be afraid to ask questions, talk about it, tell them you want to hear how they actually are, not just ‘fine’.

The isolation attached to Auto Immune and Chronic Illnesses is immense and I feel that if we could all talk a little more about our lives, that we can help each other to bring discussions about illness into everyday life and make a difference to so many people.

This is my life with chronic illness.

Tell me about yours…

Sam xx

Why we need to keep talking about IBD

What an amazing year 2014 was for raising awareness of Inflammatory Bowel Disease!! When I was diagnosed with Ulcerative Colitis in 2004, I had never heard of the disease and through the years, so many people I spoke to were completely oblivious to it too.

In 2013, I had a subtotal colectomy and ileostomy formed.  I did what any right minded, modern person does and googled the hell out of it.  I found some great medical advice but very few blogs about IBD.  I talk often about the amazing Inflamed and Untamed, who I fell a bit in love with, and who was the inspiration for me starting this blog, but I could find hardly anything in the UK.

Yet in the past 18 months, there seems to have been a huge uptake in IBD blogs, people sharing their personal experiences of chronic illness of Crohns and Colitis and I think it is bloody WONDERFUL!  It is just fantastic that people facing a life with IBD now have so much information at their fingertips now.  The whole reason I started this blog was to share my stories and experiences in the hope of helping others.

I recently wrote about some of my favourite IBD bloggers, including Thaila Skye and Colitis Ninja, and there are so many people currently working SO HARD to raise awareness, raise money and working to #stoppoobeingtaboo – I raise a glass to every single blogger and campaigner.  We are doing something to make a difference and should be very proud of ourselves!

crohns and colitis awareness week

 

So things are good, right? Yes, of course! But they can be SO MUCH BETTER, and we need to all keep talking about Inflammatory Bowel Disease.

Why? Because the more we talk, the more we #stoppoobeingtaboo, the more money we raise for support and research, the better life will be for the 300,000 people in the UK and the 5 MILLION people worldwide living with Crohns and Ulcerative Colitis.

Inflammatory Bowel Disease is not just a poo disease where you get a touch of diarrhoea…

Firstly, there is NO CURE, though there may be periods of remission, these are illnesses that are with sufferers for life.  The medications taken to control the disease control the inflammation include antibiotics, anti-inflammatories, steroids and immunosuppressants.  But the side effects from these meds include nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

It is also not just about the bowels, IBD can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

People with IBD have an increased risk of mental health issues, from depression to anxiety and stress, patients have to deal with self esteem and body confidence issues.  Fatigue can also be a huge issue which affects every part of patients lives.

20 to 45 % of people with ulcerative colitis and up to 75 % of people with Crohn’s disease will eventually require surgery in the form of colectomy (removal of the large intestine) ostomies, jpouch surgery and more.  This is on top of the multiple hospital visits that IBD patients will often need to deal with the often very painful disease.

 

fatigue and ulcerative colitis crohns ibd

 

Crohns and Colitis UK is a nationwide charity whose mission is to work with all those affected by Inflamatory Bowel Disease, in particular Crohns Disease and Ulcerative Colitis, to achieve a better quality of life, improve services, and ultimately find a cure.  They raise awareness, provide information and support, fund crucial research, and campaign and speak up for change.

I am a huge fan of Crohns and Colitis UK, I’m part of the Organisation Team for the South Yorkshire group and raise money for the charity on my Just Giving page (always open for any spare change you would like to throw their way!)

So please, keep talking, keep reading, keep sharing… IBD is not going away and the more we talk, the easier life is for everyone who has Crohns or Colitis.

Thanks for reading.  Please go take a look at my Facebook page and like, my twitter feed and follow and my instagram and follow there!

Let’s #stoppoobeingtaboo and never stop talking about IBD.

Sam xx

It's Crohns and Colitis Awareness Week

The 1st – 8th December is Crohns and Colitis Awareness Week, get involved by sharing, reading and talking.

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It’s the perfect time to #stoppoobeingtaboo (my favourite line as you may know!!) – let’s all talk poo. We all do it and noticing changes in your bowel habits can mean you need to see a doctor. If you have diarrhoea for more than a couple of weeks or notice blood or mucus in your stools, get to the GP and talk poo!

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260,000 people in the UK have Crohns or Colitis, there’s a good chance someone you know has one of these illnesses and I can tell you, living with Inflammatory Bowel Disease (IBD, the umbrella term for crohns and colitis) is hard. It’s an embarrassing, painful and at times heartbreaking condition. I talk openly on this blog about my journey but others might not find it so easy. So talk, be open, share…

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Tell me your IBD story…

You can get involved by reading IBD stories, sharing your own, sharing statuses and twitter posts that are using the #becrohnsandcolitisaware hashtag or mine which is #stoppoobeingtaboo.

For more information go to the Crohns and Colitis Website
Love Sam xxx

Hello therapist, may I lay on your couch?

Ohh my little blog, my place of cathartic writing, my diary, my journal of my illness and recovery. Sometimes I forget that when I hit post, it flies out through the ether and into the laptops, tablets and phones of so many. (Currently about 15000 of you a month! WTAF?!!!)

I write for many reasons, one is to raise awareness of crohns and colitis and all the issues that surround them. On that note, today is the start of Crohns and Colitis Awareness Week!

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I want to help others down their IBD path. Being diagnosed with Crohns or Colitis is terrifying, then you have to learn so much, so quickly, you have to make decisions on taking drugs with side effects lists longer than your small intestine, perhaps face surgery and deal with life changing recovery… I’ve trodden this path and if my experience can help just one person, then I am happy.

But I also write for a much more selfish reason. I write to make myself feel better, I would write this blog if not one person read it as it is my release. The way I let out all the swirling feelings inside. My therapy.

So I thought I should thank you all, my therapist readers in countries all over the world!

As I lay on your therapy couch today I need to talk anxiety. My head is spinning at the minute, it is just constantly going, worrying, fretting, overthinking. I’m not sure how to deal with this. As I’ve said before, I tend to cover up when I’m not feeling great with loudness and guffawing. It’s easier to grin and bear it than to open up.

Perhaps I worry that I’m letting people down by not being my normal cheery self, perhaps I worry that it will put people off me, perhaps I worry that people close to me already have so much to deal with, with my poor health that adding a dose of anxiety and sadness onto it will be the straw that breaks the camels back?

And so I turn to my pages here, then embarrassment hits when I know people will read my words. On any post like this, I write never knowing if I will actually hit that post button. That button that screams ‘SHE’S NOT COPING’.

It scares me to put it out there, but it’s important for me to share because I know I’m not alone. And it actually makes me feel better to think that other people are going through tough times and I’m not some loser who can’t tough it out. It IS hard. It’s ok for me to struggle.

I don’t come from a family where weakness is the norm, we are tough, strong, gobby Northern women. It doesn’t come easily to me to have weak moments.  I am naturally quite an upbeat, cheery person and so when I am feeling sad and anxious it is such a shock, it is not something I really know how to deal with.

Though I strive to be a kind person, and I really do, I think kindness is the best quality any person can have, sometimes I slip into an easy, defensive mode.  The mode that means my friends think I am so tough.  But really inside, sometimes I just feel anything but tough.

I’m sorry this is such a down post.  I am trying really hard to work through my feelings and anxiety.  The problem is, when you don’t talk, don’t ask for help, people don’t know how to respond to you.  I don’t know if I CAN talk about it, the words stick in my throat.  I find it easier to type…

So there we go, thank you for today’s therapy session!

If you are struggling too, please don’t be a buffoon like me, talk, talk, talk… Speak to people around you, try and be open.  If you can’t do it in person, or have no one to talk to, you can always contact me.  We can have a virtual cuddle and as much as I’m not good at voicing my own anxieties, I am a very good listener and give some decent advice! If only I could take it myself!!

 

Much Love

 

Sam xxx

Christmas Gifts for people with an ostomy or IBD

It is coming up to my favourite time of the year, I LOVE CHRISTMAS!!! And so I thought I would pull together a few ideas for christmas gifts for friends or family with IBD, especially those with an ileostomy or a jpouch.

 

SPA TREATMENTS

I love a massage and adore a relaxation day in a spa, but with an ostomy there were a few alterations I needed to make.  I could never feel comfortable laying on my front, the weight pressing on the bag made me nervous about leaks and the pressure on my stoma was uncomfortable.  But there are tons of other treatments that would be great.  Just be aware that some treatments require you to fill out medical forms before hand and may not offer treatments if surgery was recent.  It is best to give them a call and chat with the therapist.

I would definitely recommend the Clumber Park Hotel and Spa, there are a variety of spa packages to all different budgets and the setting is gorgeous.  I have been invited to spend the day at their spa and so look forward to giving you all a full review of the experience soon!

climber park spa

FOOD AND DRINK

A christmas hamper, bottle of fizz or box of chocolates are usually an easy gift, but it is worth considering that some people have to alter their diet quite a lot with IBD.  Many people with an ostomy avoid nuts, some avoid carbonated drinks, some avoid dairy and some really struggle with fruit and veg.

It is such a minefield that it may be worth asking them first if there is anything they don’t eat or drink.

 

CLOTHES

If you are buying for someone with an ostomy, you need to be aware of waistbands, and unfortunately not all stomas are in the same place so it can be difficult to gauge.  When people have asked me for advice I tend to go for the simplest option, so when asked which pyjamas to buy for a woman with a stoma, I suggested a nightie instead.  For men I would go for a dressing gown and slippers.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

Again everyone is so different, I didn’t mind wearing tight fitting clothes where you could see the outline of my bag, for others they may prefer something baggy and loose fitting.

 

GIFTS TO PASS THE TIME

For someone who is often ill and sometimes spends time either as an in patient or at many hospital appointments, items to pass the time can be a life saver.  I bought myself a kobo e-reader last year and people bought me kobo vouchers so I could buy whichever books I wanted.  It was fantastic to be able to have so many things to read on hand in a package that fit in my dressing gown pocket!

Other things could be a magazine subscription, my favourites are Psychologies (currently £22.85 for 12 months with a great free gift!) and National Geographic (currently just £19 for 12 months with a free fleece jacket)

App vouchers

Itunes vouchers

kobo e reader

 

PAMPER TIME

For women I don’t think you can go wrong with some great beauty products, I ADORE L’Occitane hand creams, they are a bit of a luxury treat that always make me smile.

Lush also do some amazing ranges and I find the staff instore so helpful, go in and ask for help and advice.  When I had my stoma I was very careful about using any bathing products or cream around the ostomy that could dry out or irritate the skin but found their products really lovely to use.  Plus any gift given to me that is wrapped in a gorgeous scarf will always be a winner!

LUSH GIFTS FOR IBD

USEFUL GIFTS

I recently spoke to a reader by email who wanted to do something nice for a friend who was in hospital after having an ileostomy formed.  She asked for advice on a gift and I suggested an IBD Hospital gift hamper including the following;

Eyemask and earplugs – Essential for getting any sleep in hospital!

Nice hand cream

Organic, non carbonated dilute squash

Notepad and pen

Slippers – the ‘slip on’ kind as you don’t want anything that you need to bend down to put on

A home made voucher offering a cooked meal/house cleaning/babysitting/movie night – just to remind them you will be there when they get home.

 

FUNNY GIFTS

I would definitely laugh at a poo based joke gift.  Only you know your friend/family member and so if you think they have a sense of humour about it all, what about something a little bit funny?

52 Things to Do While you Poo perhaps?

A Bristol Stool chart mug?

bristol stool chart mug

Anything from poopsoap.com…

 

POO POURRI

Yep, you heard me… Poo pourri is a toilet air freshener with the BEST EVER ADVERT…

 

A MEDICAL ALERT BRACELET

Read about why these are a good idea here, I especially like the ones from Twisted Typist.

medical alert bracelet for ibd jpouch

 

And finally…

 

If you have a spare £500, how about a heated toilet seat bidet magical loo thingamabob? Yes, really…

With a hot seat, bum wash, massage and a blow drier, this is the ultimate toilet for your IBD mate!

bidet heated toilet seat

 

 

If you have any comments or suggestions, please let us know by using the comment box below.

Happy shopping!

 

Love Sam x

 

My favourite IBD websites

When I started this blog last year, I did so because I couldn’t find anything that I wanted to read, which was a personal account of real people with IBD, I wanted to know I wasn’t alone, to feel supported and learn more about the illness, recovery and life with Ulcerative Colitis or Crohns.

I came across Inflamed and Untamed run by the marvellous Sara Ringer and was blown away, I was massively inspired and for the first time, felt like there was a community of people out there who were like me! It is an American site though and so I thought why not start something like this here in the UK.

I love running So Bad Ass and I am thrilled that every day I receive so many wonderful messages from people all over the world and every week  I have thousands of views! I wanted to make a difference and I really hope that through my writing and public speaking I am doing that.

I saw yesterday that Bethany Townsend was voted in the 100 most influential people in the UK promoting disabilities for the image of her in a bikini showing her ILEOSTOMY* bag that went viral.  Hooray for more media coverage about IBD and Ostomies but I was wondering if she’d done anything else apart from share her holiday pic?

No offence to her at all, but it seems a shame that the bloggers/writers/public speakers/activists who write/speak/blog every day don’t get more recognition.   If you want to be properly inspired go check out the people who inspire, support, raise money and are so bad ass!!!

woman showing ileostomy colostomy bag

There are lots of IBD blogs now and there are more and more people speaking out and sharing their stories with the world and I think it is amazing.  The more we talk, the better it is for the millions of sufferers worldwide.

And so I thought I would compile a list of some of ten of my favourite and most inspirational IBD blogs, please take a look at them and get involved.

Big up the everyday IBD warriors who don’t get the recognition they should!!!

 

INFLAMED AND UNTAMED 

THAILA SKYE

BLAKE BECKFORD

COLITIS AND ME (Founder of #GetYourBellyOut)

UNCOVER OSTOMY

THE CROHNS COLITIS EFFECT

VEGAN OSTOMY

COLITIS NINJA

ADVENTURES OF A BAG LADY

THE CHRONIC ADVENTURER

 

There are so many that I just couldn’t name them all and so had to limit myself to my very favourites.  All these people take a lot of time and effort to talk about Inflammatory Bowel Disease, they join me in my quest to #stoppoobeingtaboo and make a difference to people all over the world.  If you are reading this and have crohns or colitis I hope you can see that you are part of an amazing set of people! Get reading, get commenting, get involved.

We all have the ability to act as advocates for IBD.  Let’s make the IBD community proud.
Love Sam x

 

*Can we all please teach the media that not all bags are COLOSTOMY bags??!!!!

Medical Alert bracelets

I have been considering a medical alert bracelet for a while but haven’t seen one that I would actually WANT to wear till I stumbled upon the lovely Twisted Typist website and found this one.

medical alert bracelet for ibd jpouch

Medical Alert ID bracelets or necklaces are used for quick recognition of your medical conditions, allergies, medications, or treatment wishes leading to faster and more effective medical treatment.  Medical personnel are trained to first look for medical identification jewelry in an emergency and will immediately alert emergency medical professionals to your critical health and personal information.

It is questionable as to whether they are necessary for people with Ulcerative Colitis or Crohns unless you are on specific medication or have had surgeries.  It is a personal decision that can only be made by the person themselves.  Though it is recommended to wear a bracelet to alert caregivers that you have had colectomy and pouch procedures.

medical alert bracelets ibd pouch ostomy

I am still in two minds as to whether it is necessary but then I think about a scenario where I have an accident and am unconscious and alone, a medical alert bracelet would make sure the people who are in charge of my care know everything possible in order to avoid giving any medications or performing any dangerous procedures or operations.In the end I suppose it is up to you, if you are concerned have a chat with your doctor and see what their thoughts are.

I also saw this cute aluminium band that can be personalised with any writing you want and so could be used as alert jewellery.  If like me you have never seen any you like then do take the time to have good search, don’t limit yourself to the official ones, easy is fantastic for getting in touch with artists all over the world who make beautiful bespoke jewellery.

medical alert jewellery pouch ostomy ibd

 

Let me know what you think and post any recommendations in the comments!

 

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

The office of an IBD blogger…

When you spend as much time on the loo as you have to with IBD and blog about it, the throne becomes a bit of an office…