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Prednisolone – Steroid withdrawals

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

Day two in hospital

Day two starts Nil by Mouth, not the awesome film with Kathy Burke but with me not eating or drinking. It’s not too much of a hardship as my appetite has bottomed out anyway (no pun intended!) So I’m not eating as they let me know Id be having my colonoscopy today.

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So after god awful bowel prep I headed down for the camera. I had sedation which is like going sober to pissed in 30 seconds. The camera showed what was expected – active inflammation in my bowel which is open ulcers, bleeding and general soreness.

I had a sleep after and then had a bath as I felt grubby. I managed to pull out my canula whilst in the bath which was fun and meant I needed another put in. I then had more bloods taken – 9 tubes in total this time!! I think I’m secretly feeding all the vampires in Sheffield!

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My sister and brother in law skyped me from Australia which was fab and really raised my spirits. Andy told me how since I started blogging he is only just realising what my disease means. He expressed his guilt of not knowing more but I just think it means the blog is working! I want to raise awareness, I want people to know more and be able to talk honestly about this shitty disease!

The IBD nurse has been to see me and has had a thorough and honest chat about surgery. She brought me loads of literature and some ileostomy bags to look at. My surgical consultation has been brought forward. It was meant to be next Tuesday but the surgeon is coming to see me tomorrow now. I don’t know what this means on a time scale thing. I suppose it’s a wait and see what he thinks. Whether he thinks surgery is right for me. Ill update tomorrow.

I’m feeling rough today and a bit sorry for myself. I’m trying to keep chipper and I’m posting quite a lot on Facebook. I hope it’s not becoming too annoying!!

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The view from my hospital ward of Sheffield

I was going through my list of meds with my sister and I think she’s a bit shocked. I’m currently having

4 lots of IV steroids a day
8 tablets of mesalazine
2 mesalazine suppositories
1 prednisolone suppository
2 calcium tablets (to counteract the osteoporosis that can be a side effect of steroids)
1 injection of blood thinner (I’m at a higher risk of blood clots)

I’m also having my blood sugar checked daily to deal with the steroids side effects and have the awful task of a stool chart. Which means every time I have a poo, I have to do it in a pan that I then give to a nurse like a present. They then have the unenviable task of examining, weighing and writing a chart on each poo!! So glamorous!!! At the minute due to me not really eating I’m just passing large amounts of blood which makes the whole task so much more grim!

I’m aware this is probably too much information for some but this is an IBD blog and its important to me to speak honestly.

It’s hard to maintain your dignity when you are pooing in a cardboard box. Or when you are on the receiving end of an enema. Or having a camera put up your arse. And to be honest, I’m finding it difficult to write about. I keep thinking about people reading this and I feel embarrassed and mortified that you’ll know these things. But if I can’t be honest on a blog about Ulcerative Colitis then where can I be?

All I keep thinking is that if this helps one person, then it’s worth the embarrassment.

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Some great gifts from my IBD Team!

I’m posting this early today as I’m trying to catch up on rest. I’m feeling exhausted and no better yet. I’ve just had a message from the lovely Corinne (AKA Motherscuffer/Motherhood Journeys – google her awesome blog as I can’t figure out how to do links from my iPhone!!!) She is coming to visit me this evening so that’s going to cheer me up no end!!!

I just want to say thank you once again to Caroline and Kay for looking after my kids and to everyone who has sent me messages, texts, emails, phone calls and Skype – every message makes this whole thing a tiny bit easier. It really lifts my spirits so thank you so so much.

As always, please feel free to comment and share my blog with anyone you think it could help.

Much love

Sam xxx

Day one in hospital

Thought I’d blog my hospital journey this time.

This morning I called my consultant to let him know that despite him upping my pred steroids on Thursday that I had got worse over the weekend. He asked me to come into hospital “with a view to being admitted” Obviously I heard this as “come in for a test and then you’ll be able to go home!!

So after a bit of a stress to sort the kids as Timm is working away from Wednesday morning till Thursday night (he’s GOT to go, it’s a super important meeting that could mean great things for us! I told him he had to go!!) Eventually sorted the kids to go to my lovely cousins house for a sleepover tonight so Timm could bring me and get me sorted in hospital and then my wonderful friend is having them whilst he is away. If you lot are reading this, you are awesome and such a huge help xxxx

So I came in, had obs done and then saw the drs – she adviced that I went on IV steroids. This means a 5-7 day stay in hospital. She also added in some other meds to try and stabilise this flare.

A week in hospital is pretty shit but if it can get a hold of the flare and get me settled it will be worth it.

The staff here are amazing. I’m actually shocked at the difference in attitude and care compared to my last hospital. All the nurses, doctors, porters and staff have been so kind, cheerful, compassionate, funny and wonderful. I’m so not used to be treated so well in hospital!! Good work Sheffield Hallamshire!!!

Laying in bed all day gives you time to people watch. It’s brilliant! There’s a lady on my ward that always on her phone. She starts every conversation with “what you had for dinner/tea?”

There’s a staff member who has frankly the most amazing moustache ever, it’s a tash beard bare chin combo going on… I’d love to get a photo and blank his eyes out but I’m fairly certain he could kill me with one batfink karate chop…

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As nice as all the staff are, it sucks to be in hospital – I miss Timm and the kids. I’m stressing that I was going to buy school uniforms and shoes this week and take them for haircuts!!! Timm is stepping in and doing it all though. Im a tiny bit scared to see what they end up looking like but I’m sure it will be fine!!

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You get an amazing view across Sheffield from here…

Please feel free to leave comments or questions!

Love Sam xx

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How Im feeling today

Firstly thank you so much for the wonderful response to my last blog post about Why Im Choosing to Have my Bowel Removed. I had so many messages and emails of support and so many from people facing their own battles. Every message is so greatly appreciated.

Today Im writing about feelings. About how I feel dealing with Ulcerative Colitis and how it affects me mentally and emotionally.

On Thursday my consultant upped my steroids again, I had tapered down but started flaring again. The meds don’t seem to be working. Im feeling worse and worse each day… Im waiting till 2pm so I can call my specialist nurse for advise on what to do next.

So here’s what Im feeling today…

ulcerative colitis feelings

Fear – Im afraid of what is going to happen to me – afraid of the medications, the thought of surgery. Im fearful that people will get fed up of me always being ill.

Sadness – Man, I feel so sad right now. It’s a sadness so deep it feels like a punch to the gut. Im VERY good at pasting a smile on my face and being the silly, happy joker but this sadness is creeping right through even my fakest of smiles.

Frustration – Im frustrated with my body, I wish I had a magic wand that would just make me not be sick…

Envy – I suppose this leads on from frustration. I envy people who are well and just wish I could have a normal body.

Anger – Im angry that this is the hand I have been dealt – I want to shout like a toddler ITS NOT BLOODY FAIR!

Anxiety – My anxiety levels are sky high, I lay in bed at night worrying about EVERYTHING.

Confusion – With all these other feelings going on it is probably not unusual that Im confused. At times I feel like I just want them to operate. Today. Then other times Im terrified and wonder if there are any other options. Should I be looking at a raw juice diet? What if I were more spiritual and started meditating and doing yoga every day? Perhaps if I could just lose weight it would be better? Or maybe it’s because I am stressed? Logically I know that I have a disease and this disease needs treating with medication, I didn’t do anything wrong to get this but at times I can’t help but blame myself.

Guilt – This is my biggy. I feel so guilty. All the time. I feel guilty that Im not the mother I should be because Im ill in bed. I feel guilty that my kids worry about my health. I feel guilty that the steroids make me have flashes of anger and I tell the kids off when they probably don’t deserve it. I feel guilty that my husband doesn’t have a ‘normal’ wife. I feel guilty that my friends and family have to help me out with childcare. I feel guilty that Im not pulling my weight with the business because Im laid in bed. I feel guilty that my husband has to take on both our roles. I feel guilty that I ruin days out because I need to be somewhere near a loo and then spend most of the day in the bathroom. I feel guilty that we can’t plan to do things because we don’t know how well I’ll be. I could go on forever… Guilt is a shit feeling.

Love – I thought Id end on a nice feeling. My husband is fab, he deals with my illness so well. He doesn’t pander to it, or treat me like a sick person. He takes the piss out of me. He makes me laugh. He sits with me when the insomnia kicks in and listens to my random questions about giraffes at 2am. He sends me to bed when he sees I am struggling. He takes on the roles that would usually be mine without complaint. He pinches my bum and tells me Im beautiful even when we both know I look like shit. He sits in bed with me and we play dice for hours. He tells me everything will be ok. He comes to my appointments and makes sure my voice is heard. He say ridiculously inappropriate things and makes me howl with laughter. He makes me feel better. He loves me.

Thanks for reading xxx

Why I am choosing to have my bowel removed

My name is Sam Cleasby, Im 32 years old and I want my bowel removed.  That sounds like a pretty drastic thing right? Well yep it is.  I am in the midst of a journey that I hope will end with my large bowel being removed from my body.

I have Ulcerative Colitis.  I was diagnosed with the disease ten years ago and in that time I have had numerous hospital admissions, many colonoscopies (camera up the bum to the layperson!), many different drugs and more than a few poocidents…

My drug of choice is currently Prednisolone Steroids.  They are pretty amazing at getting the disease under control but unfortunately come with a barrage of side effects from insomnia, weight gain, the very awesomely named ‘Moon Face’, hairiness and general mentalness (think anxiety, depression, psychosis, thoughts of suicide)  These drugs stop your body from creating corticoids and so have to be slowly tapered off over a matter of weeks or months.  I was nearing the end of a two month stint on Pred when I started with another flare up and so my dose that I have carefully tapered down for weeks has been jacked right back up there.

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My other drug options are immunosuppressant drugs such as Azathioprine – Immunosuppressants work by reducing or suppressing your body’s immune system. This will then stop the inflammation caused by ulcerative colitis.  The drawback is they affect your whole body, not just your colon. This may make you more prone to infections.  Like all drugs Azaithioprine has possible side effects, one of the scariest is an increase in the risk of cancer.

Another drug option is Inflizimab, given as an infusion, it works by targeting a protein called TNF-alpha, which the immune system uses to stimulate inflammation. This is the serious big boy drug – one in four patients have an allergic reaction to this drug.  Again it increases the risk of cancer, specifically lymphoma in patients.

Now I need to say here that I am in no way against drug treatment, I know they have their place and are the right option for many people.  If you are researching the different drugs for yourself, be sure to speak with your doctor or specialist nurse.  All drugs have side effects and if you googled every medication you take it would terrify the life out of you.  These drugs control the disease in so many people and if it is right for them, then I salute them.

They are not right for me.

I do not want to put medication into my body that may treat the colitis but could give me worse things than what I started with.  Cancer is a biggy.  I do not want to take anything that increases my chances of getting a disease that is more likely to kill me than the colitis is.

And so I come to the other option.  Surgery.

In a way I am lucky, I have Ulcerative Colitis.  That means that my large bowel is the only place where the disease is located.  People with Crohns can have the disease anywhere in their digestive system.  This means that surgically removing my large bowel ‘cures’ Ulcerative Colitis.

Surgery involves permanently removing the colon – a colectomy. As part of the operation, your small intestine will be re-routed from the colon so it can pass waste products out of your body.  Initially this will be into a bag attached to my stomach, then in a further operation, surgeons will create a pouch out of my small intestine that is attached to my anus so I can go to the loo in the same way as everyone else!

For some, surgery is the last option.  It is the time when they are so poorly that there are no more drug options.  Or it is an emergency operation – a life saving operation.  For me it is elective.  I am not at the point where my bowel is close to perforating, nor have I run out of drugs to take.  But my quality of life is taking a bashing here, Ulcerative Colitis affects every part of my life.  It affects the relationship with my husband, it affects my children when I am tired, sick and suffering.  It affects work, friendships, my mental health, my confidence.  If affects how I see myself as a woman.  It affects the choices I make in life.

I don’t want to live a life that is ruled by the toilet bowl.

And this is why, for me, the best option is surgery.  Take the bad boy away!! I am not making light of the decision, I know it is HUGE and life changing.  I have researched so much and cant find a single person who doesn’t say that it is the best thing they ever did.

I have seen my consultant today, he is a great bloke.  He listens and cares and gives me all the information for me to make an informed decision and then supports me in moving forward.   I have an appointment with a surgeon on the 3rd September to discuss my options and hopefully make a decision on whether he thinks I am a candidate for surgery.

So here’s hoping! Fingers crossed they will agree with me and whip this bad ass into shape!