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Pouchitis

So for the past two weeks I have been bleeding, Ive kept it to myself as we had our wedding renewal on Saturday and I just wanted the day to be about Timm and I, not about my illness.  Our whole lives had been about my illness for the past year and so I kept my mouth shut and just dealt with the symptoms.

After the wedding I got in touch with Mr Brown, my consultant and today I saw him in clinic, because of the quite heavy bleeding and increased pooling along with a hefty load of fatigue he suspects I have pouchitis.  I had bloods taken today and Ive been booked in for an urgent flexible sigmoidoscopy.  Im pretty gutted and feel like my recovery is being hindered once again, but Im glad my doctor takes it seriously and is getting me sorted asap.  The treatment is a course of antibiotics but we are waiting for confirmation that my markers are up from the blood tests before starting that.

Pouchitis is when an internal pouch becomes inflamed. It is a common complication in people with an ileo-anal pouch or continent ileostomy.

Symptoms of pouchitis include:

  • diarrhoea, which is often bloody
  • abdominal pains
  • stomach cramps
  • a high temperature

Im trying to keep my chin up but to be honest I do feel a bit down about it all.  After the massive highs of the wedding renewal it feels like a real bump back down to earth.  I spent the whole wedding day rejoicing on just how far I have come, thinking about how there were points when I was really ill and in hospital that I couldn’t imagine making it to that day.  But all the while I was thinking about this bleeding and worrying about the causes and feeling set back.

wedding renewal sheffield rock n roll

Pouchitis is a common problem for people with a pouch and so Im relieved that its probably just that but in this recovery it seems to be two steps forward and one step back.  I need to remember that though this is a step back, I am always moving forward and things are getting better.

I have been given picolax to prepare for the flexible sigmoidoscopy which seems pretty scary.  I have of course had so many camera tests and so had all the laxatives before but now I have no large bowel, I can’t imagine what the results will be!! I had a flexi sig last time I was admitted to hospital and though I was terrified before I went in, it was actually less painful than I imagined.  Im not happy about having to have more tests but I am glad it is getting under control and I feel heard and cared for.

Ill keep you all updated!

 

Sam x

 

PS My AMAZING ‘prickly tits’ dress is from Syd and Mallory in Sheffield.

Good news!

I’ve been to see my lovely consultant Mr Brown today and all is good! I have a huge grin on my face because currently my pouch is working brilliantly, my next check up will be in May 2015 and there is talk of discharging me… I have been under a consultant since 2004!!!

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I am 12 weeks post j pouch surgery and I’m going to the loo about 4-5 times a day (which is awesome in case you were wondering!), I know that may sound a lot for a normal person but for a pouchee it is pretty damn good. I have little urgency and can hold it in when I need to go to the toilet. And I’m having no accidents at all! I’m eating pretty much what I want with a few exceptions.

I still have times of massive fatigue, especially if I allow myself to get dehydrated which is really easy to do these days as I have no colon. But as long as I keep my fluid and salt intake up, I’m doing really well. It feels amazing as since the operation I have had many many times where I questioned why I had done it.

Life seemed so much tougher than with my ileostomy and I thought I’d made a massive mistake. But since my last admission to hospital and the big dose of antibiotics, everything has improved hugely! I know life will never be ‘normal’ again, but currently all is good in the world and I couldn’t be more relieved.

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So today I am feeling blessed and happy. Thank you Mr Brown for making my life so much better.

Love Sam x

Thank you to the very awesome RoofTopsNYC for my brilliantly Love is Love tshirt xxx

Back to hospital

So yesterday morning I saw Mr Brown in clinic and after examining me, he thinks I have pouchitis. He said I need antibiotics, fluids, blood tests, X-days and a pouch scope. And so I was admitted back to the Northern General.

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I had blood tests, X-rays, a night on the wards and a pouch scope and though my white blood cells were high there was not much else showing any problems and so I have been sent home with a course of antibiotics to knock anything nasty on the head.

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My first jpouch scope was a lot easier than anticipated. I was TERRIFIED going in, I’ve had plenty of colonoscopies and flexible sigmoidoscopies but this is my first since getting the pouch. I didn’t have sedation and it was all over in 10 minutes. It was a walk in the park compared to a full colonoscopy, a little uncomfortable and the worst thing was the air pumped in. I had a bit of gas and air but it was all fine.

Releasing (ahem!) the air was interesting… It’s already loud enough when I go to the loo now, expelling a load of air that been pumped in sounded pretty fucking amazing. If I weren’t so embarrassed I’d have called out to the rest of the ward “DID YOU HEAR THAT?!!!”

I saw the inside of my pouch which was odd but good and Mr Brown said it looked ‘beautiful’ – I had no idea what the appropriate response up that was so I thanked him… Then giggled.

He is my favourite doctor, it’s always a pleasure to see him and I trust him implicitly. Though I’m still concerned as to the cause of the pain and struggle to poo, I’m happy that he wouldn’t send me home if were worried.

So I’m home and hoping that the antibiotics will make me feel better. I’m still having quite a bit of pain and will have to wait and see how the crapping goes as I haven’t eaten in 24 hours so haven’t been.

Apologies for not replying to any messages (most only came through once I got home!) The internet signal in that hospital is ridiculously bad. It’s like the dark ages!!!

Thanks so much for all the love

Sam xxxxxx

Hospital check up

I had my four week check at the hospital yesterday with my awesome surgeon Mr Brown. Everything is looking good!

At some point I need to learn when it’s not ok to make inappropriate comments though. He needed to *ahem* examine me and so a nurse was present. She was asking me to assume the usual lay on you left side, knees up position when I said “yep I’ve been here before!”
“Oh” she replied sympathetically “have you had problems and had to come in after surgery?”
“Nah I’ve just had years of this so I’m used to literally being in this position”

Anyway, Mr Brown was happy that everything seemed ok with my pouch. But when we discussed my bowel habits (actually is it still correct to say bowel habits? You know what with me missing my large bowel…) he wasn’t happy with the amount of times I’m going.

It’s currently around 15 times a day, it’s very sudden and urgent and I’m having continence issues. I’m having to wear pads to deal with that and it makes me feel like absolute shit (excuse the pun) My confidence is very low and I feel embarrassed and really fucking sad about it.

Anyhoooo Mr Brown asked how much loperamide I was taking, the answer is I’m not because no one told me I should be or prescribed anything. He wasn’t happy about that and said I should have been taking it. So he prescribed that and was hopeful that it would solve a lot of the issues I’m having, which would be AMAZING!

He then asked if I knew someone who runs a certain shop in Sheffield, I said I didn’t think so but that I did run this blog so perhaps they had read something here. He said they had told him that and so he’d better do a good job incase I wrote anything mean about him. I assured him I had only put lovely things about him!

It was a bit weird to know people are talking about this place and that it’s got back to my surgeon!! But it’s all good and I can hand on heart say, without any persuasion from him, that Mr Brown has been fantastic from the beginning. He always comes across really caring and like you are important, I’ve never felt like just a name on a sheet and his care has been amazing.

Going from 8 years at Rotherham hospital to asking to be moved to Sheffield my care had improved so much. Both the Hallamshire and Northern General (with the exception of bitch nurse from last year!) have been awesome and I can’t thank them enough.

You know you have a good doctor when both nurses and other patients have nothing but good words to say about them. When I speak to other IBD patients in Sheffield, everyone gushes about him and one nurse in hospital said “Ohhh he’s like a fine wine, he’s just getting better with age!”

So Mr Brown, if you happen across my little blog (because let’s face it, most people would DEFINITELY google themselves if they heard they’d been blogged about!!) you are doing an awesome job and I thank you from the bottom (fnarrr!) of my heart for your care over the last year.

I have to say loperamide isn’t the instant cure I was (stupidly) hoping for, it made me feel quite queasy last night and there was no impact on the amount of times I’m going to the loo. But obviously it’s something that’s going to take time to get in my system.

I had a pint of Orange juice yesterday as I was craving for it but it was not good. At least I’m assuming it was the juice! It passed thru my system in about an hour and left me on the loo about 10 times in an hour. OJ is now on my pouch kill list…

But I have to keep reminding myself that it’s early days. I’ll keep plodding on and I’m sure things will get better soon.

Love Sam x

I have a (preliminary) surgery date!

I had my pre op appointment at the hospital this morning, I was nervous about what they would do but it was a really simple process of a few different health checks.

I had bloods taken, they are doing FBC, checking markers etc but also need to do a check on blood type as apparently if you have had a blood transfusion your antibodies can be very different.

They did swabs for MRSA and gave me a pack of swabs to do it again at home before the op.  This is because Im classed as a ‘regular visitor’ to the hospital… No shit Sherlock!!

They took my height and weight measurements, Im pleased to say I have lost just over a stone in the past three months.  Im aiming to try and lose a little more by the surgery date as the consultant says higher weight increases the risk of complications.

They then just asked A LOT of questions about my health and talked through my stay in hospital.

They also talked to me about having a high protein diet which apparently increases recovery rates and gave me these pre op drinks, it is a clear, lemon-flavoured, carbohydrate drink given as part of treatment before surgery.  “Undergoing surgery will put stress on the body. Research has shown having a carbohydrate drink reduces stress on the body. It has also been shown that it may reduce loss of muscle following surgery, which aids faster rehabilitation, and shortens hospital stay.”  Clever stuff!

My appointment took about an hour and a half and everyone was very nice, but had no idea on dates.

So I called my consultant’s secretary who let me know that a preliminary date of 30th April had been put in for me, they need to check all my pre op tests are ok and will be confirming it asap.

So I could have just 3 weeks left of being an ostomate!!!

Ill update as soon as there is any more news.

In the meantime, can I just take this time to say a very Happy Birthday to my most favourite bloke in the world, my awesome husband Timm.  Im sorry bubs that you had to spend your birthday morning in hospital with me!! We spent the rest of the day shopping, having lunch and then had a walk with the kids to our friends house for a gorgeous birthday tea.

Timm is just amazing, he takes everything to do with my illness and surgeries in his stride and just makes life better.  He is my absolute rock and I couldn’t live without him.

Happy Birthday Timm xxxx

timm and sam cleasby

timm and sam cleasby

Packing for hospital

I thought I would do a post on packing for hospital as it has been on my mind recently. I’m due to go in for my pouch surgery in April though I don’t have a date yet and so I am getting organised.

My two week stay in hospital last time was unplanned and last minute and so I had to rely on my husband to bring things in for me.

This time I’m packing the things that will make my time in hospital just a tiny but easier. Of course these things aren’t essentials but the little things that will make my next two week stay a bit nicer.

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So I have 5 changes of nightwear, I know this may seem a lot when I can have things taken away to be washed and others brought in but last time I took two pairs and asked my husband to bring in more. He brought in my painting scruffs, you know the paint splattered joggers with a saggy arse and a band tshirt from the 90s that has hair dye on the neck line? Yes, those. That’s what he brought in.

This time he is only allowed to bring back the things I send in for washing…

I bought myself new jamas and nighties, I just thought I’ll be wearing them a lot for the next few months so it was worth treating myself to some kick ass ones!

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Big black pants – the comfier the better.

Comfortable bras. I bought three ‘gym’ bras that don’t have underwire and seams. Last time I hated sleeping in a bra as it was uncomfortable but didn’t feel nice without a bra at all. These were from primark and were £2.50 each.

Slippers – slip on, backless slippers. I didn’t have any last time as I don’t wear them at home and thought my slipper socks would be fine. But when you can’t bend to put them on its a pain in the arse! I ended up in my husbands old brown slippers. You do need something easy to slip on and off for if you need to go to other parts of the hospital or just to wander to the tv room.

Dressing gown for walking about or going to the loo/for tests.

Towels.

Wooly hat – i get a cold head and like to have a hat to hand. Also good for covering up terrible hair!!!

Books – a couple of good books I’ve been trying to get read for ages plus my kobo ebook reader. I also have a little book light for reading in the middle of the night if you don’t want your lamp on.

Puzzle book to pass the time.

Pens – pens are power in hospital. I have two and will be guarding them with my life!!!!

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Now on to toiletries…

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So I have the usuals of flannel, soap, shower gel, shampoo and conditioner, toothpaste and toothbrush.

I also have a comb, bobbles, hair bands and grips.

Moisturiser – my skin was so dry last time!!!

Dry shampoo – my hair gets greasy quickly and as it is dyed, thick and long it is a terrible faff to wash and so I bought this spray to help keep clean in the early days before I’m ready for showers or baths.

Lip balm, tweezers, deodorant, face cream, face wipes, baby wipes, hair serum, nail file.

A mirror! Such a small thing but If I wanted to check my hair or pluck my eyebrows or anything I had to go to the bathroom. So this time I have a small compact mirror.

Anti bac gel – I know this is everywhere in hospital but when my kids visit they’re constantly touching the floor then wanting a cuddle. Or running their hands on the wall then touching me. Hospitals are such germy places and so having a little bottle if OCD juice makes me feel better.

Mini straighteners! Now I’m not a vain person. But I am a person with wavy, wild hair and a fringe. I have no idea if I’d actually use these but they were a fiver and so I thought I’d stick them in the bag just in case!!!

Eye mask – this is a biggy for me! I can’t sleep with lights on in hospital and they never turn them all off. This eye mask means I can grab a few hours darkened sleep no matter how many lights they have to leave on!

Other things I’ll pack will be a coin purse with a few quid in it, head phones for listening to music or watching films and my phone and charger.

My mobile was a life saver in hospital. It meant I could call or text whoever I wanted, that I could keep up with friends on Facebook and twitter. I watched films on Netflix which was fantastic!!! And most of all I could write and blog my heart out.

I hope my list is of some help to people getting ready to go into hospital. I know some things may seem silly or unnecessary but when facing at least a couple of weeks inside it is nice to have things around you that make you happy.

The final things I’ll be packing are my penguin and koala. Yes I’m 32 years old, but my kids and husband bought me these and they mean a lot. I’ll be holding these tight on those long lonely nights and they’ll make me feel better!

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And my photos of the four most important people in the world. My husband and kids.

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So there we go, my guide to packing your bags for a hospital stay. I’m sure you won’t want all the things I take and that they’ll be other stuff that you will need but I hope it’s given you a bit of an insight and some help.

Love Sam

;

The Unknown

They found this thing.  They called it a shadow and then slipped the word ‘mass’ into the conversation later.  I wasn’t expecting it, I had nervously laughed and chatted through the first part of the test and then the woman, the doctor, testing person, her, she went quiet.  She asked me to hold still and stopped talking about her daughter’s shop that she thought Id love.  She stopped making that casual conversation that makes the fact she is looking up my arse slightly less embarrassing.

There is this ‘thing’ in my rectal tissue.  I don’t know what it is.  She mentioned it could be an abscess but said I needed to talk to my consultant.  The mood changed really rapidly and I was so surprised that I just gathered my things and left.  I didn’t ask any questions or query what she was saying.  I didn’t do any of the sensible things, I just felt really hot and the word ‘cancer’ was all over me.  I could hear it whispering in my ear, feel it nudging me like I was walking through a bustling crowd of it.

She didn’t say cancer.  She never said the word.  I keep thinking Im imagining the whole thing.  She said she couldn’t say anything more and the consultant would look over the results as soon as possible and come back to me.

The logical part of my head is saying in a matronly manner ‘This, Samantha, is you over thinking it all.  It will most likely be an abscess or something easily treatable.  No one has suggested cancer.  Wind your neck in and stop being dramatic.”

I left the hospital and drove aimlessly, I ended up in a carpark at a shopping centre, driving round to find a parking space, only once I found one I realised I didn’t need to go shopping.  I drove to the old house where Timm was working and he chatted away.  He stopped and looked at me and said “Everything OK?” “Yeah!” I replied.

Then “No bubs, they found something”

His face fell.  I explained and he held me tight.  Said it would all be fine and we needed to not get ahead of ourselves.  I could feel his fear in his pounding chest, it was banging against mine giving away his anxiety whilst his face and words were soothing and calm.

I did a bad thing.  I took a photo of the screen when she left the room for me to get changed.  She had even asked me not to when I had asked if I could – “The consultant needs to see this first” she gently explained.  Then I did a lot of bad things.  I googled and googled and googled.  I dismissed the need for years of medical training and diagnosed myself online.

I know this is bad. It is ridiculous and if I were hearing this from another person I would tell them to STOP FUCKING GOOGLING.

You know the funny thing is, that the ultrasound of a rectum is surprisingly beautiful.  It looks like a lunar eclipse surrounded by galaxies.  It looks like a black and white Van Gogh sun.  It looks a lot nicer than you would imagine…

Today I am losing my mind thinking about what it could be, and so I called my consultants secretary only to be told that he is away till Monday and that the results would take a day or two to get to him anyway.  She put me through to the clinic where Id had the test but they said the woman is also away till Monday.  I imagine them both together, sunning themselves on a Caribbean island drinking cocktails with their heads thrown back laughing.

And so it is a waiting game for this unknown.  I am telling myself over and over again that it all will be fine, that the chances are that it is an abscess or something that can be dealt with easily.  Im pushing the word cancer out of the front of my mind, cramming it into a dusty trunk hiding at the back of my skull that contains the clowns and frogs.

I am on the verge of tears.  Im so frightened.  I keep thinking ‘Are you fucking kidding me? Have I not dealt with enough?’ It is so easy to wind yourself into a state of panic, but the words I use to comfort me are becoming a mantra, when I feel the panic rising and beginning to swallow me I repeat “It will be fine” over and over again.

Perhaps it really is nothing, perhaps they will look at it and shrug, something totally treatable and all A-OK.  I feel that these bad thoughts of something sinister is just fanning the flames of drama, I need to stop that right now and not let my brain go into over drive.  Because at this minute, everything is ok, no one is suggesting the things that are flooding through my brain, only me.

And so I will wait till Monday and speak to my consultant then.  Until then I just have to try and keep that trunk locked up tight and not let my imagination run wild.

 

Sam xx

UPDATE – my lovely consultant dropped me an email to say that it’s “Highly unlikely to be anything but need to see scans” and to try not to worry. I’ll update again when I hear more news xxxx

Surgery news

I have had a couple of pre op dates through and we are definitely working towards my pouch surgery being in April.  On 26th March I have to go in for a test of the muscles in my arse (nice!) and I have my pre op date for 9th April (Happy birthday Timm!)

The first test is called Anorectal Manotmetry, it is a test used to assess how well the muscles and nerves in and around your rectum are working, so that doctors know they are strong enough to deal with the pouch surgery.  I will also have an ultrasound.

j pouch surgery

Image from Colorectal Surgeons Sydney

The following information is from the NHS website.

“The test uses a device that looks like a small thermometer with a balloon attached to the end. This is inserted into your rectum and the balloon is inflated. It may feel unusual, but it is not uncomfortable or painful.

A machine is attached to the device, which measures pressure readings taken from the balloon.

During the test you will be asked to squeeze, relax and push your rectum muscles at certain times. You may also be asked to push the balloon out of your rectum in the same way that you push out a stool. The information is sent to the pressure-measuring machine, and gives an idea of how well your muscles are working.

The balloon can also be inflated to different sizes to determine when your rectum feels full. If the balloon is inflated to a relatively large size but you do not feel any sensation of fullness, it may mean there are problems with the nerves in your rectum.”

I am not looking forward to this test as you can imagine, but after ten years of Ulcerative Colitis I have had so many tests and doctors looking in my butt that little embarrasses me any more!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

The next appointment is for my pre operative assessment where they go through consent and make sure Im informed, do blood tests and any other tests that need doing.  Ill be screened for MRSA and they will just go through the information I need to know about when to go nil by mouth, when and where to come in to hospital etc.  I am not sure what the time between pre op and surgery actually is, I had a google and some people say its days before and others say it could be a month or more.  But my surgeon has said my op will be in April so we’ll just have to see.

And so that is where I am up to, everything is being booked and we are steaming ahead.  Ill most probably have a pouch in the next month and to be honest I am terrified.  But that is for another post as I can’t get those words out right now.

Sam xx

Visiting someone in hospital

As I start to mentally prepare for surgery next month I began to think about how lovely it was last time when I had visitors and I thought about some things that would help me this time.

When you are sick in hospital, visiting times really break up the day. Last time I was in two weeks, this time will be a similar time scale. Having a visitor really does brighten your mood and make things feel a little better. On the times I didn’t have visitors, I tended to go to sleep as it just felt awkward when others on the ward had family or friends there.

I know it can be a bit of a dilemma whether to visit or not, I’ve had family and friends say they wanted to visit but didn’t want to intrude, thought I’d be too ill or didn’t want to take up my time when I could be seeing my kids.

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Personally I love having visitors, I really appreciate anyone taking time out of there day to see me. I would only ask for you to speak to Timm my husband first, simply because visitor numbers are restricted and I’d hate for you to come and then not get in as I’m with the kids. I ask Timm not to bring our kids every day as it’s just a bit much for all of us, they find it upsetting, then they get bored and I feel upset and stressed. But the times they do come I love and so plan with Timm when you want to come as my brats are always going to outrank you so I don’t want you to waste a journey.

Talking of kids, don’t bring your own! No offence! Hospitals don’t like visiting kids and I’m ill so don’t really need your children climbing on the bed and being noisy! Sorry x

Check visiting times as they vary from hospital to hospital and ward to ward.

ulcerative colitis surgery ibd ileostomy hospital

Flowers… I LOVE getting flowers, from a posh bouquet to a hand picked posy, it just makes me smile. But some wards don’t allow them, mine didn’t last time and it just made me feel guilty that people had spent money on things I couldn’t have.

Any other gifts. I don’t need a gift from a visitor, as the saying goes, your presence is needed more than your presents. But if you really fancy bringing something I will gratefully accept! Last time I got things like lip balm, hand cream, magazines and peppermint tea. All fantastic! If you really want to bring a gift and don’t know what, ask me or Timm. Sometimes I’ll need a particular thing and he won’t be visiting that day (squash, a flannel etc) but seriously if you want to come, do not feel that you have to bring a gift!

Please don’t visit if you have a stomach bug or bad cold. The signs aren’t to be fussy. The patients can’t deal with your illness on top of their own!

Always use the antibacterial hand cleaner for the same reasons as before!

Don’t feel awkward and ask questions if you want to know about my illness or surgery. If I want to talk about it, I’ll tell you. If I don’t, I won’t. But I promise I won’t be offended if you ask.

If hospitals just aren’t your thing, or work/life make it difficult to visit and you want to get in touch. Please call me, text me, email me, send me photos of funny goats. One of the worst thing in hospital is boredom and any outside contact means so much.

 

Sam xx

Surgery news

After visiting my consultant (and ANOTHER bloody cock up with appointments!!) the decision has been made.

My hernia is causing too many problems and so my pouch surgery is being brought forward…. to April.

I’m really anxious and nervous but I am in the very safe hands of Mr Brown, my surgeon.

No exact date as yet as I need a couple of tests before we can book it in but he has said it will be April.

It’s been a bit of a big day between the news from hospital and today we moved house!

So just a very quick post from me today, thanks so much for all the texts, emails and kind messages wishing me luck.

Loads of love

Sam xxx