Prednisolone – Steroid withdrawals

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I am finally off the evil steroids! Hooray!!!  I have been on Prednisolone since June this year and have finally managed to taper off them.

But man, Im having a few problems.  Mainly in the form of horrible headaches.  I just can’t shake them, Im taking pain killers but they don’t want to go.  At first I thought I had some sort of bug as Im also having a lot of nausea too.  But now Im thinking its steroid withdrawals.

prednisolone withdrawal

“Steroid withdrawal symptoms can include dizziness, fatigue, intestinal upset, and headaches. These may occur as the body adjusts to the reduction in steroid supplementation and starts making its own steroids. Patients on steroid medications for even a few days can go intowithdrawal when they stop. It important to start and stop the drugs under medical supervision, to limit the symptoms and decrease the chances of serious complications during withdrawal. People stopping high dose medications could develop a medical crisis.

One of the most common symptoms of prednisone withdrawal is a feeling of weakness or severe fatigue. This is because the immune system is weakened. It may also result in body aches and a low grade fever as though a cold were coming on. Joint pain is also common. Also on the list of prednisone withdrawal side effects is depression. This is because withdrawal from the drug causes hormonal changes in the body. Also because of the hormone changes, a woman who comes off of prednisone too quickly may experience side effects concerning her menstrual cycle. It may become temporarily irregular.”

prednisolone withdrawal headache

Great! I have been looking forward to coming off the meds so much, and now Im dealing with withdrawals!!  On a good note, I sleep really well last (without sleeping tablets!) so Im hoping that the insomnia is on its way out.

Well here’s hoping they are short lived and Ill be back to normal soon.

 

Love Sam xx

My hospital complaint – an update

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Im fuming.  So super angry.

You remember the problems I had with one nurse in particular whilst in hospital? You can read about it here and here.

Well the ward manager just called me to let me know he had spoken to the staff concerned and that he hoped I would feel the matter was resolved.

Not so much, it turns out.

The nurse who laughed at me when I lay crying, who offered no help in changing my ileostomy bag or in showering, who wrote on my chart that I wasn’t in as much pain as I was telling her I was and who withheld pain relief, that one… Yeah, her response is that I only ever asked her for a towel so how should she know I needed help in the shower? No remorse, no realisation that she could have done more – its my fault for not asking.

He says that he told her as a SENIOR staff nurse that she should have been aware that a patient who has had major surgery three days prior should get more support and that she could have done more.

He says he showed her my chart and questioned why she didn’t give me more pain relief.  I asked her response he said “Well, nothing really”

He says that she “point blank” denies that she laughed at me.

What. The. Actual. Fuck??

I asked if he was ok with this? That his senior staff nurse had lied on a chart and withheld pain relief.  (I didn’t sleep at all that night, I sat up crying in pain, asking for pain relief again and again.  I was told I couldn’t have anything else till the dr prescribed it the next day.  When asked how much pain I was in 0 = none through to 3 = extreme, I was telling her 3, more than 3!!! Agony!!!! The next morning Timm came in and checked my chart, she had been writing 1s and 2s.  In the morning when they changed nurses, the new nurse came in to find me crying in pain, she checked my chart and immediately gave me a higher dose of Oramorph and said the doctors had prescribed me a higher dose than Id been given all night and that I could have been having it every two hours)

He says that the nurse has worked there for years and he knows her personally and he has never had another complaint against her so it is her word against mine.  He went on to say that *some* patients when they are on a lot of pain relief can be “confused” – he went on to say that of couuuuurse he wasn’t suggesting that *I* was confused but that it does happen.  I told him that two other patients on my ward were so appalled by what they heard and saw from this nurse that they gave me their names and phone numbers and said should I complain that they wanted to be able to say what they witnessed.  That one patient told me she was trying to reach her mobile phone so that she could film the nurse laughing at me whilst I lay crying and sobbing.  That I had been on the phone with my husband as she was laughing at me… That yes, I may have been tired, stressed, in pain and on painkillers but I was not making this up and I had witnesses.

He says that he has spoken to her and none of it will happen again, so do I feel it is resolved?

Is he crack-a-lacking me??

No, I told him, no.  This isn’t resolved as the nurse is showing no remorse and is denying she did anything wrong so how can I believe she won’t do it again?  If she thinks she did nothing wrong then who else is she doing it to? I said if that is as far as he can go then I will be making a formal compliant.  He asked if I would speak to the matron first.  I said I wanted to make a formal complaint as I need to know that she won’t treat others like this.

He said that sometimes complaints are valid and sometimes they aren’t and then went on to tell me that a patient had threatened to complain about him today but it was only because that person had “learning difficulties” – WHAT??? Surely these things should be confidential and he shouldn’t be telling me about other patients?!

So there’s my update, Im sorry if it is badly written but Im so ANGRY at them.  That they think it can all be brushed under the carpet.

I WILL be making a formal complaint and will take this forward as far as I have to.  I need to do it for peace of mind that next time it isn’t my mum, your nannan or Joe Bloggs’ uncle… That it’s not a frightened old lady or a young person who don’t have my voice.

Thank you for reading

 

Love Sam xx

A day of firsts…

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A day of firsts and not all good ones Im afraid.

The day started at 4am when I woke to find my bag had somewhat exploded…  Im thinking making it three weeks before having a full blown blast out is good though, yes? Poor old Timm was woken up and helped sort me out and get me in the shower whilst he did a full bed strip and got some washing on.  I know this is gross, but it’s life for someone with a stoma so I thought it was important to share.  Basically my bag was completely filled with air and so all output was forced out of the sides of the flange (best word ever)… Not a good start to the day.

Anyway this morning my lovely friend Caroline took me into Sheffield for a bit of shopping.  Its the first time I have been out without Timm in a month so it was a little nerve racking but lovely, we went to the Forum for brunch and it was just so nice to be out as a ‘normal’ person.  We chatted, shopped and were generally just a bit giddy.  Ive not had enough giddiness in my life for the past few weeks so it was fantastic to have some time with my friend.

We did have a bit of a laugh when I was explaining to Caroline about ‘phantom rectum’ which is where despite the fact that I have no colon and nothing is connected, I sometimes feel that I need a poo… This is known as a phantom rectum – As I was giggling about the funny name, her response was “Well it does have a ring to it!” Cue hilarity…

Then comes my next first.  I went to the loo and realised I had some leakage on my bag, so I came out and used the disabled loo and my radar key for the first time! I also had to do a clean up and put a new flange and bag on in a public toilet! A bit terrifying as so far Im used to taking my time and doing it in my bedroom.  But I managed it and was just really glad I had my full pack up of products with me.  It really made me realise the importance of being able to use the disabled toilets.  I need the space, but more importantly the use of the basin in the cubicle.  Also the importance of having a spare set of everything I need to do a change.

stoma products

I got a travel bag from Fittleworth who are my delivery company for all my ostomy supplies.  Its not the most fashionable thing in the world but it keeps everything together and was a lifesaver today.  The only thing is that its quite big and so I need a large handbag to fit it in.  I have a couple of larger bags but thought it was VERY IMPORTANT that I had another… Right?? I bought this beauty today from one of my favourite shops Within Reason by The Bombay Satchel Company.

bombay satchel company bag

 

Coming home from our few hours out, I could barely keep my eyes open.  I can’t believe how exhausted I feel after doing so little.  Its a reminder that my body is still mending and healing and though I have more energy now, I really need to make sure I don’t push myself too hard.

So Im off for a nap now to recover from a hard day drinking tea, eating and shopping!!

Love Sam xx

Stoma Art

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I found this artwork called ‘The Lovers’ – its the first stoma art I have seen and I love it!

stoma art

 

 

I can’t find who it is by though, so if this is yours then please let me know and Ill add a credit.

 

Love Sam x

Happiness and Optimism

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I am getting a lot of emails from people who read this blog who are going through tough times, whether it be through illness, relationships or just life in general. Firstly thank you to everyone who emails or messages me, the reason I started this blog is that I wanted to help people. I wanted to give a voice to people with IBD or who are living with a stoma. To get people talking and the break the ‘poo taboo’ so it means so much to see that it is doing that. And more!

Though my blog is about life with IBD and a stoma, Im realising that many people who are reading it don’t have either, but are finding strength and inspiration through the topics I talk about. Wow! You have no idea how much that means to me. It makes my blethering into the ether of the internet feel worth it. If I can help one person, I will be the happiest person alive!

So I thought I talk about happiness. Ive said before that I think happiness is a choice. No matter what shit we are going through, no matter how dark our mood, we can all make the choice to be happy. Even if that happiness is one fleeting moment through an otherwise crappy day. I really believe that trying to be positive, looking for the silver lining and opting to smile rather than frown, laugh rather than shout makes us feel better.

happiness quotes

Sometimes that is hard. A bereavement, an illness, a divorce… Of course there are times when we feel life is against us. In those dark times, thinking of something positive can feel impossible. And feeling sad is a natural thing, we need to feel sad, to cry, to shout to deal with the situations we go through in life.

Having a moment of happiness, or gratitude, or pleasure does not take away from the gravity of whatever problems you face. But thinking positively and trying to be happy, whether it be the hug from your child, or ten minutes sitting with the sun on your face, or a phone call with a friend, or just a damn fine cup of tea can make you feel better even if it is just for a minute. In being mindful of these moments you can give yourself the choice to be happy.

happy good for health

Plate by MBart Studios

There have been many studies about happiness and optimism, and it has been found that positive emotions can undo the effects of a stressful negative experience. You can read a great article about The benefits of Optimism here.

I think we all need to be a little kinder to ourselves, we say things about ourselves that we would never say of a friend (or even foe!) If when we are feeling down about ourselves we could try just for a moment to think of the positive things about us and say them I think we could be happier. We are very British though and hate to be seen to me immodest, but screw that! What is fantastic about you? Are you kind? Are you a good friend? Are you loyal? Or brave? Or hard working? Do you do the BEST Tina Turner dancing in the world? Are you funny? – Seriously, think about the characteristics that you admire in others and ask yourself if you have them too. If you do, then celebrate that! If you don’t, think about why not.

Think about what makes you happy.

I LOVE having friends round for dinner, a bottle of red wine, the fire blazing, a great dish in the middle of the table that everyone tucks into. Sitting around the table, talking, laughing and being together.

Sitting in the garden with my eyes closed and the sun on my face. Listening to the noises around me and just being.

I really love being curled up with a book. I like to be totally snuggled with a blanket and cushions and just sink into the book.

A cuddle with my children and the smell of their neck.

A date with my husband.

Painting my nails.

A really good nap!

Listening to music. SInging loudly. Dancing wildly.

Walking the dog.

Watching a good film – we have ‘cinema night’ where we all pile on the sofa, lots of blankets – a film on, and lots of goodies to eat.

Think about the things that make you happy. Its not about money, its about the small things you can do that make you feel happy and good. Think of those things and then DO them!

Of course we all have time and money constraints but we can do one thing a day that makes us feel good. Whether it be getting up before everyone else and having a cup of coffee or wearing your favourite pair of shoes. We can do it. But it means making yourself and your happiness a priority.

You are worth it. You deserve to be happy. Make time for it.

happiness quote

So today, my mission for you if you choose to accept it, is to think of one positive thing about yourself and celebrate it. And to do one thing, no matter how small, that makes you happy.

MIne are:

I was told today by someone that I inspired them. I feel really bloody proud of myself for that.

I ventured out into my garden with a cup of coffee and sat in the sun. I had 10 minutes of just being outdoors, alone, in the quiet. Not worrying about things that need to be done. Just sat… And it was heavenly!!!

So go on, get to to it. It would be lovely to know how your mission goes, so please leave a comment.

Love Sam xx

Sore skin and ileostomy

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I have been having some soreness to my skin underneath where my bag fits. I spoke to the stoma nurse who said that it was common as when you are removing the wafer and bag, you peel carefully from the top and then once you are past the hole, you tend to rip it off quickly.

I thought this was what was happening so I made sure I was doing it carefully but unfortunately despite this, my skin was getting more sore.

This morning when I changed my bag my skin underneath was bleeding and so sore. I have been avoiding mirrors but I looked at myself and saw that the shape of the soreness was oval. My wafer is round…

20130923-125730.jpg

I suddenly realised that when I was taught to put my bags on and off, I was laid in bed. So now I always put them on whilst I’m laid down. Then when I stand, my skin is pulling downwards (the joy of having had three kids!!!) and the wafer is trying to keep it pulled upwards so its tearing at my skin and making it really sore!

I stood at my dressing table and put my bag on whilst stood up. I can’t believe the difference! You can see that whilst stood my wafer should stick a good centimetre or so higher than where it has been sticking when I put it on laid down!

20130923-130125.jpg

I’m hoping this is going to help with the skin soreness and also with the very slight leaking I have been experiencing.

I thought it was worth posting for other people with ostomies as its been a revelation to me!

Love Sam xx

Feeling unattractive

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Today has been a bit of a write off, after last nights abysmal sleep I spent the day feeling exhausted, emotional and just a bit crap.  There is no rhyme or reason to my emotions at the minute, sometimes Im feeling fantastic, really positive and raring to go, at other times I am feeling low, Im teary and finding things tough.

Today I am feeling very down.  I look in the mirror and see my scar and the bag and I feel so unattractive.

Before the surgery I was kind of upbeat and didn’t think I would feel bad about my appearance, I think after being ill for so long, vanity was the last thing on my mind.  But now the dust has settled and life is going on, it feels like an issue.  Im very conscious of smell – I worry that I smell of poo.  Timm tells me in all honesty that I don’t, and logically I know I don’t, the bags have filters and the output actually doesn’t smell like poo anyway!  I think its just that I am aware that I have waste sat in a pouch on my stomach and the fear of it sets in.

At times when Im feeling down, I can’t imagine how Timm can bare to be near me.  Surely it must put him off? He can’t really want to hug me or lay next to me in bed? With my gurgling stomach and bag of poo, why would he want to put his arm round me?  These feelings are tough.  My eyes are filling with tears now because those thoughts make me feel like Ive been punched in the gut.

Its hard to look in the mirror at the minute, Im both intrigued and disgusted by my new body.  Having to clean my skin and stoma means touching it and being aware of changes to my skin, but there are times when Id love to just cover it all up and not look at it, empty it, clean it.  There are times when I just want to stick my head in the ground and pretend its not there.

I worry Timm will not find me attractive any more, after all, if I don’t then how could he?  We had a chat today after I cried a LOT.  He is a wonderful fella you know, he tells me that this will never affect our relationship, that he loves me and everything will be ok.  He says all the right things and he makes it better.

The kids are honest.  Im glad of that but its still hard.  They tell me its ‘weird’ and that they don’t like seeing my stoma, they say that it upsets them and avert their eyes if they are with me when I don’t have my bag on.  We have always talked openly and honestly with the kids and the same goes with my surgery.  Its been a tough few weeks for them and Im so proud of their resilience and courage.  I can’t imagine how scary it is for a child to know their mum is having an operation and I was away from them for two weeks!  But I do feel sad, I feel like the bag is a barrier between us, they don’t like it and so they’re not as likely to sit on my knee or cuddle me and that is hard.  But I won’t push them, they need to deal with it in their own way at their own pace.  Im sure as time goes on, they will get used to it and it will just become normal.  Its such early days so I am sure things will get better.

Things WILL get better, I know that.  I will get used to my bag and it will become more normal for us all.  I keep threatening to do a quote a day on my bag a la Matt Helders (Arctic Monkeys) drum skins…

matt helders drum skins

Im thinking if I have to wear this bloody thing, then I may as well rock the shit out of it!  Im trying to think positively by looking at how I can still feel like me through all of this so Im looking at clothes that will work better with a bag, ostomy covers and even some nice underwear and swimwear.

I struggled with whether to post this today.  I do not want to come across as needy or whingy.  Or as one of those girls who say ‘oh Im ugly’ so that others say ‘noooo you are SO pretty’ – you know the type!  That’s not what this is about.  Anyone who knows me, knows Im a fairly confident person.  But I thought it was important to chart the negative feelings that come about with having this surgery.  For others who are going through this to know that there are other people who are feeling that their confidence has taken a bit of a thrashing.

I refuse for this to be an entirely self pitying post, so thinking of the positives…

It was our son Charlie’s 13th birthday party yesterday, Timm planned it all and made him a BMO cake from Adventure Time and it was fab, he just had some friends over to watch a film, Timm set up the projector in the living room so it was like a cinema and made a ton of pizzas and popcorn.  A lot of Charlie’s friends are budding musicians so they brought their guitars and all had a bit of  jamming session.  It was a lovely night made better by the fact that Charlie said we weren’t an embarrassment to him… High praise from a teenager!

BMO cake adventure time

Timm and I are continuing to plan for our trip to Vietnam and Australia in December – Im so excited.  I can’t wait for us all as a family to experience so many new things and it will have been 14 months since I saw my sister and her family so it will be fantastic for us to be together again.  The fact that I don’t have to worry about a flare up just makes it all so much better.  I joined the Ileostomy and Internal Pouch support group and have been looking on the forums for travel advice.  I got a Travel Certificate which explains to airport security that I have an ileostomy, you can get one either from your stoma nurse or the IA using the link above.

Just three more days till I am off the steroids! Woohoo!! I am hoping that once I have finished the steroids that problems such as insomnia and mode swings will stop too.  There’s a good possibility that my down mood today has been magnified by the meds, so thinking of being steroid free is a real positive thing for me to look forward to, I have been on them now for almost three months.

Im sorry that todays post is a bit of a pity party.  My negative feelings today have been really overwhelming, I have cried a lot and just felt really sad.  I haven’t been out of my pyjamas and barely made it out of bed.  But I know that there will be good days as well as bad and as rubbish as today has been, I have got through it and tomorrow will be a better day!

Thanks for reading, please feel free to keep sharing the blog with anyone you think it could help.

Love Sam xx