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

Mmmmmm BRAINS… So Bad Ass Zombie!

On Saturday 18th October I fulfilled a dream of mine that was to be a zombie for the day.  For years I have wanted to get the make up and gore on and stumble about as an old school zombie and the lovely folk at Barnsley Hospital Charity made my wish come true.

They held the Zombie Run, a charity fun run where competitors take on a 5K race through the zombie infested Worsbrough Mill in Barnsley in the hope of getting to the end uninfected.  The event is to raise money for the fantastic charity of Barnsley Hospital and is a brilliantly worthy cause.

We arrived on site at 8.30am already dressed in our zombie outfits of choice, my teenage son came with me and together we became the undead.  His chose to be a zombie school boy whilst I decided to go for the clothes I have worn the most over the past year and went for a sleepy zombie in pyjamas.

barnsley zombie run

 

We then had our make up done by a team of fantastic artists who muddied up our skin with vaseline and cocoa powder, messed our hair by back combing with conditioner and then applied makeup and prosthetic bits of skin, painted our teeth, finished off with a lot of fake blood!

 

barnsley zombie run

 

We were given a briefing and then put into position around the course, our section was two abandoned cars and our group were to moan, groan and stagger around the area being as terrifying as we possibly could whilst the runners tackled the obstacle and tried to keep their three ‘lives’ intact (they had belts with velcroed strips on that the zombies could snatch)

 

barnsley zombie run

 

It was a lot of fun and the other zombie volunteers were lovely, it was great fun despite the mud, cold and long day and I thoroughly enjoyed myself.  The only problem were there were a lot of school children zombie volunteers who came along after we had been designated our areas, that meant the stretch of track that should have had 10-15 zombies along it, suddenly had around 50.  There were no teachers or adults around who were responsible for the school kids and they refused to listen to me or the other adult volunteers and for me, it ruined the day quite a bit.

barnsley zombie run

 

I think going forward it would be an idea to ensure under 16s are only allowed to be zombies under the supervision of an adult.  I was really excited about the day but didn’t sign up to try and babysit a load of teenagers who refused to listen… It might be an idea to ask for a donation to be a zombie, I would have happily paid a tenner to be a zombie for the day to raise even more money for the charity and that fee would mean that people who really want to get into the zombie spirit of the day could do so.

barnsley zombie run

I was all meant to be fun, I don’t want to sound like I am a method actor (HA!) but for me I believed the day was meant to be a really fun way to raise money for a good cause.  I thought my role was to be scary, add atmosphere and grab a few tags as and when.

One of the other zombies on our area had gone all out and had ‘intestines’ filled with pink spaghetti attached to his costume, I thought it was hilarious and got a photo of us together.  As I have no large intestine, I thought I would try and nick a bit of his!

barnsley zombie run

All in all it was a great experience, I LOVED getting into zombie character and staggering about groaning and growling.  So much so that I have almost lost my voice!

Would I do it again? Abso-braineating-lutely!

 

Love Sam x

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…

Scars – How I overcame my insecurities by going naked

Hellooooo it is good to be back! Timm and I have been on our second honeymoon, a week in Lanzarote and we had a blummin’ brilliant time!

The weather was amazing and so I had to deal with the insecurities of going on the beach and having my scars on display.  Now if you are a regular reader of my blog, you will know that I am not a wallflower when it comes to showing off my scars and ostomy from all the photo shoots I have done.

But I do these for a reason, I want to raise awareness of IBD and lessen the stigma of having an ostomy or lots of scars from surgeries.  Being photographed by talented husband Timm and then editing the images and sharing online reduces the panic in showing the world my entirely imperfect body as it is not a face to face interaction.

And so I do still have insecurities about my body and the scars that criss cross my stomach, that might be hard to believe as I promote loving your body and having self confidence.  But I am only human, the reason I can talk about having body confidence and coping strategies to deal with having your ostomy or scars on show is because I have all those fears, I just work hard to overcome them in the hope that I can help others with the same worries.

silhouette of a couple dancing

For my first jaunt out on the sands I wore a bikini on the family beach, my scars that reach from my sternum right down into my groin, plus two more scars on either side of my abdomen, were all on show.  I saw the odd glance that turned into a double take, one nudge and whisper and quite a few children have a good old gawk.  None of those looks were offensive in their nature, there was no malice, just curiosity.  That is natural but it did make me feel like I was on display, I felt watched and a little uncomfortable, perhaps some of this was in my head, but it was still how I felt.

Our next beach trip was a little different, we went to a naturist beach… It is one of those things that was on my bucket list, something I wanted to try before I died.  I had been to one once before but there was no one else on the beach and so this time, going on to a busy nudist beach was a challenge.  I was really nervous, Timm and I went to a corner and slipped off our clothes and laid down quickly, giggling like kids.  We put on our sunglasses and had a look around to see lots of nude people, some sunbathing, some sat chatting, some walking or swimming.

It was odd at first, I felt extremely self conscious, but after a while I realised there was such a nice atmosphere, no one was staring at one another, I felt no judgment, totally comfortable and really relaxed.

stone heart shape on beach

The beach was filled with men and women of all shapes and sizes and though you got the odd glance and smile, everyone kept to themselves and there was no judgement.  A totally different feeling to being on a normal beach.  Perhaps it is the fact that without clothes, we are all a little vulnerable.  Or perhaps it is that being nude is a great leveller.  Either way we loved the day and for the first time I felt great in my own skin and didn’t worry about the sight of my scars.  Isn’t that a weird thing, I felt more comfortable with no clothes on, than with a swimsuit or bikini.

As a woman who is a size 14-16 with lumps, bumps and jiggly bits, a naturist beach wouldn’t usually be somewhere I would think of as relaxing, but it really was.  My size wasn’t even a thought and my scars were soon forgotten about, the most attention I got was for my tattoos!

I wouldn’t call myself a naturist now, I don’t feel the need to be naked all the time and nor would I go out of my way to find naturist beaches, but I can say that a good chunk of the good feeling on our holiday came from our visits to the nudist beaches and I’m really happy to say that the experience has helped me on my way to accepting and loving my scars.

nude beach stone balancing so bad ass sam cleasby

So what do you think? Is it something you have done or something you would try?

Let me know in the comments below.

Love Sam xx

Choose happiness

choose happiness sam cleasby so bad ass

Sometimes I need to remind myself of this…

I am writing about happiness over on Life Labs for Psychologies Magazine, go take a look.

Sam x

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

Codiene, Jpouch and doctors with funny names

I saw a new dr on Thursday, a registrar on the team of fabulous medics who have been looking after me. As you may know, my surgeon is called Mr Brown, we do laugh that he has an appropriate name for a bum doctor… Well, the new one was called Dr Liu. Dr Loo?! Are they kidding?

When they become a doctor do they choose the funniest name they can think of that relates to their speciality? Did I mention my friend’s dad (he has an ostomy too) whose doctor is Mr Butt!

Or is it like Harry Potter’s sorting hat? When you start medical school do they match your name to the most appropriate category?

Anyway Dr Liu was very nice, he talked through my camera test which showed a very small amount of inflammation but not enough to be causing me so many problems. The Coeliac test hasn’t come back yet but all other blood tests are normal. This is great to know there’s nothing majorly wrong but a little annoying as it means there is no easy treatment.

I am going to the toilet around 15 times a day, sometimes as many as 20, I have talked before about how it is normal for someone with a pouch to go multiple times a day but this is very excessive. Since the op I take Imodium every day to slow the output.

The doctors have added in two more drugs to slow everything down. The first is fybogel which thickens the stool and therefore makes the passage through the body slower.

The other new drug is codiene. Though it’s used as a painkiller, a side effect of codiene is constipation and so I’ve been put on quite a bit of it. I’m now taking 4 Imodium, 2 fybogel and 8 codiene a day. I wasn’t sure at all about taking so much of a string painkiller but after 2 days it seems to be working!

On Friday I went to the toilet just 7 times in 24 hours and then amazingly I slept through the night last night!!!!

Woooohoooooo!!!

I can’t describe how good it feels to have had a proper nights sleep after so long of waking at least a couple times a night.

The only issue is that codiene are strong painkillers. I’m feeling very sleepy and foggy headed and so the codiene isn’t going to work long term for me as I don’t feel able to drive or do much at all when I’ve had the tablets.

The plan is to try this combo for 6 weeks then go back and see the team. If things aren’t settled by then, we will reevaluate.

Thanks so much for the lovely messages

Sam xx