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Back in hospital

Hello you lovely lot. 

Firstly thank you so much for all the beautiful, supportive and caring messages I have received on social media, email and text. I was feeling very sorry for myself and your words really brightened my day. 

So I am back in hospital, I saw Mr Brown in clinic on Tuesday and he recommended I was admitted for some IV antibiotics, some fluids and tests. 

I’m still here and also on some pentasa foam and another drug to try and slow down my output. I’m still going to the loo 15+ times a day and its thoroughly exhausting. 

 
My blood tests have actually shown that my inflammatory markers have gone down which is good, but also a little concerning that I’m still feeling crap. I’m waiting to have a pouchogram which is an X-ray test where they fill my pouch with a fluid then X-ray me to see where it goes. 

I love that just when you think you’ve had the most embarrassing tests known to man, you then have to crap out X-ray fluid whilst a team takes images of you… The joys of IBD, eh?! 

 
But anyway, I have news. 

After much discussion with Timm, the kids and Mr Brown, I’ve decided that this pouch is just not for me. It’s been 20 months and 3 bouts of pouchitis, plus so much time feeling exhausted, ill and unable to cope. Going to the loo 15-20 times a day. I have concerns about the amount of drugs I take every day and the effect on my body and liver. And now the issues with my prolapse.  
I was so well with my stoma. I know it’s not ideal, but life isn’t ideal now. It’s about quality of life and currently my quality of life isn’t great. 

  
Mr Brown has put me on the list for January and so 2016 will be a new start with a new stoma. 

I feel relieved in one way as I just want to be well. But in another way, I’m just done in. I am feeling pretty sorry for myself and wondering when I get a break.  I’m so fucking fed up of this illness, it’s taking so much from me. It causes so much stress and makes life difficult for my family and friends. 

Poor old Timm is dealing with the kids, work and home life as well as my mental rantings and emotional breakdowns. I’m so bothered about being a burden to him that I’m actually being MORE of a burden by stressing about it. 

  
He brought the kids to see me which brightened my mood. I spoke to them about the stoma and they immediately said  “do it mum!”  I asked why and they said that when I had my bag, I was really well and we could do everything normally. They said my pouch means I’m always poorly and sick in bed.  This makes me so sad. But firms my belief that this pouch isn’t right for me.

I know it changes some people’s lives and is perfect for some. I don’t want to put anyone off Jpouch surgery because of my experience. As much as its not good for me, I am glad I tried as otherwise I would have always wondered ‘what if’. 

So there we go.  I shall update soon and as always you can find me on Facebook Instagram and Twitter

Sam 

Worst Selfies Ever

No, I’m not talking about that terrible shot of you from an awful angle on your work night out, or that one where you think you look amazing and then when you look back you have a bogey…

After 12 years of IBD, more colonoscopies than I can count, several shitting accidents in public and going on national TV to discuss poo, I thought I had faced all my most embarrassing moments.  I have shared the majority of these cringe inducing events with you lot, earning me the moniker The Poo Lady!

Yet today, I have sunk to an all time low.

I am working away in Wales and struggling with this prolapse, only it has got worse and now I think I have a pouch prolapse too.  My consultant asked me to send a photo.  No, he doesn’t want one of my lovely press shots, or that hilarious photos of me dressed as the Crack Fox when I went to see the Mighty Boosh.  Nope, he wanted a photo of my damaged arse and vag.

This morning was the worst photo shoot of my life… There was no way I could ask my photographer husband to get involved in this, he’d get all arty and be thinking about composition and lighting and so I have taken selfies of my butt.  I’m sure I have warned my kids about this!!!

Worry not, I’m not planning to share them here! These are for Mr Brown’s eyes only! (Poor man!)

I know it sounds odd, but he is fab and this way he can get an idea of what’s going on without delaying treatment, it takes a while to get an appointment with him and so it is a good way for him to ‘see me’ without ‘seeing me’.

Just when I think my days can’t get any weirder, this happens…

 

Love Sam x

Update

Just thought I’d do a quick update as I’m getting so many lovely messages asking how I’m doing. 

I saw my consultant Mr Brown today, he did pouchoscopy and is happy that my pouch looks healthy! So the meds last week must have done the job. 

With regards to the prolapse, he had a look and agrees there is a definite prolapse in my vagina and has referred me to a gynae doctor to get it sorted. 

The pouchoscopy was fine. I was so nervous before my first one but just want to assure those who may be facing it that it was much easier than any colonoscopy I had with a colon!  They use a much smaller camera and it’s quicker and far less uncomfortable.  I felt no need for the sedation and though there’s discomfort in the air they pump through, the procedure itself is much easier.

  

The staff were lovely, they’re kind and reassuring. I told the staff nurse about my blog and he asked I would be writing about today. He asked for a name check if I were going to be nice and I feel terrible that I forgot his name already!! (*waves hi if he’s reading!) But the staff at Northern General endoscopy unit are all fantastic and make an embarrassing procedure a lot easier to deal with.  So huge thanks to them all. 

Thanks also to my mum for taking me and bringing me home as Timm was teaching today so couldn’t be my usual hospital buddy. 

I’m still feeling quite emotional, the prolapse thing has really thrown me and my head’s all over the place.  It was good to see my regular doctor, Mr Brown, he is so lovely and you know you’re not just a name to him. He saw my tension and said I looked upset and not my usual self. It meant a lot to know that he notices these things and actually cares. 

After my last post, I was very nervous about what sort of response I would get. I was scared I’d overshared. But your messages have made me weep. Those of support and those of thanks and gratitude that I had spoken out about something that had affected them too. Those messages make everything worthwhile, to know I’m helping others gives me the strength to keep writing.  So thank you all, you wonderful readers that give me your time, your thoughts and your support. You’re all awesome. 

I’m writing this tonight, unable to settle, I’ve some tummy pain after the pouchoscopy but also with a head swirling with thoughts.  Many are dark thoughts, but I’m blowing them away with the strength of a child blowing out their birthday candles, and the wish I’m making is for the strength to get over this blip, for the courage to keep fighting and for the continued support of this worldwide gang of bad asses! 

So I have little news, I’m waiting for the appointment with the gynae team and we’ll go from there. I did have one thought though that made me giggle… 

  

 

Well you have to find the funny somewhere, eh?!
Sam X 

Appointment update

Just wanted to update you all on yesterday’s hospital appointment after my hernia surgery.

Mr Brown is fairly sure this lump is a seroma, a gathering of fluid. To confirm this I am having a scan next Friday and if it is fluid they will drain it with a needle.

If it is anything else we will deal with it as and when!!

Thanks for all the lovely messages yesterday. I am feeling quite upset at another setback but my doctor did say “after all you’ve been through, this is nothing!!”

I’m trying to stay positive. Something’s the only way to deal with that is to take one appointment at a time. So I’m not looking past the scan right now. Thinking of needles and drains or infections or hernias is just too much to bear and so I need to keep focussed on what is real, what is planned and what I know for sure.

Thanks again lovelies

Sam xx

Op update

After my latest hernia surgery 2 weeks ago I have tried to rest and recover as well as fitting in quite a lot of work! I know people say to take it easy but both my husband and I both run businesses where if we don’t work, there’s no wage!

I wore a corset whenever I was up and about to support my stomach but found after a week, a large hard lump formed behind my scar. I was scared that the hernia had come straight back through but it feels different to that.

As always I have been trying to tell everyone around me that I’m fine and just power through and deal with it. In reality I feel gutted that there is yet another setback.

Mr Brown doesn’t think it’s anything to worry about and suggested it was a seroma. A seroma is a pocket of clear serous fluid that sometimes develops in the body after surgery. When small blood vessels are ruptured, blood plasma can seep out; inflammation caused by dying injured cells also contributes to the fluid.

He has booked me in today for an appointment to take a look at it and so I will update as soon as I know anything more.

I just want to be healthy and to not have any more issues. I know this sounds really minor and it is in the grand scheme of things but it tough when you feel that it’s just one thing after another. I want to know when I get a break from all this, you know?

I’m so fed up of hospitals, doctors and medical crap! I just want to be healthy! It’s not too much to ask is it?

Anyway rant over, I will update soon.

Sam xx

Hernia Surgery Update

I had my hernia surgery two weeks ago and realised that I hadn’t posted an update here (though I have been on facebook and twitter).  I have had a super busy week working with the amazing arts group Responsible Fishing and so have just not had a minute!

So to the hernia surgery!  Our fab friends Caroline and Jamie had the kids for us the night before as I needed to be at hospital at 7am and so it made life loads easier to not have to get three kids up and out for 6am.  I had to stop eating at midnight the night before and no fluids from 6am.  I arrived at the hospital and was taken up to my room where Mr Brown came to see me along with the anaesthetist and nurses.

I was second on the morning list and so went down to theatre at around 9am, and after just a couple of hours was back up on the ward feeling pretty sore and very sleepy but not bad at all.  I was very relieved to not feel sick as after the last operation I awoke vomiting and felt nauseas for days.  That was when I discovered that I have bad reactions with the anti sickness drug Cyclozine and so I was quite anxious this time.

cyclozine allergic reaction

The first night I had quite a bit of pain but was able to control it with just paracetamol and codeine and I was allowed home the following morning.  The only issue was my sleepy bowel… I just couldn’t go to the toilet.  It was the oddest feeling as since my jpouch surgery last May, I go to the toilet and poo AT LEAST 6 times a day and so to just not go at all for nearly 3 days was bizarre!!!

I was a little worried but was told it was very normal after surgery and just to keep an eye on it and to call them and potentially go back to hospital if it didn’t ‘wake up’ after 3 days.  But sometime on day three, my small intestines awoke with some ridiculously loud grumbles and I eventually went to the loo.

paralysed ileum

The first couple of days I had some soreness, but nothing compared to the last two surgeries!  It was well controlled with codeine and paracetamol and I also wore a corset to feel a little more supported.  By day 4 I was up and pottering around the house and day 9 saw me go away with work for 4 days!

I had been very nervous about the op, but it all seems to be going well.  There is a lot of hard swelling behind my scar and I have a little soreness by the end of the day but I am feeling ok.  I am still very tired, I think perhaps its the general anaesthetic that takes it out of you, but with the odd nap and lots of early nights I am doing very well.

hernia ostomy incisional scar

Thanks for all the lovely messages of support, it means so much!

 

Sam x

Hernia surgery tomorrow

So the big day is tomorrow! I am in at 7am for surgery on my incisional hernia with an overnight stay.  I started 2015 with two wishes, I didn’t want to have an operation or move house this year.  Unfortunately it wasn’t to be…

My hernia is very small and usually quite flat but when I exert myself, it pops out and is sickeningly painful and so it is stopping me from exercising and doing the things I want to do.  I have such a busy year with work and I need to be in good physical condition to manage it all.  Hernias only get worse with time, they won’t improve without surgery and so I know that this surgery is the right thing to do.

But I am nervous as hell.  A few people have said that “it’s only a small surgery” and that “it’s nothing compared to the last two”, they are right and I know they are only trying to set my mind at ease but I really am terrified and feeling anxious and sad about this operation.  

The thought of having another general anaesthetic is scaring me, I know they do it all the time but the risks are there.  I’m frightened at the thought of just not waking up.  I’m also scared of there being complications with the operation, but I have Mr Brown operating which definitely puts my mind at ease though I’m still nervy and shaky.

Timm is taking me in to hospital at 7am and I’ll be in overnight. If you follow me on Twitter or Instagram or like me on facebook then I will probably be posting on there before the blog.

I am extremely anxious and feeling weepy and sad but I am going to pull on my big girl pants and I’ll be ok. The kids are worried as they always are if I have to go into hospital but Timm is going to bring them to visit tomorrow.

Our amazing friends Caroline and Jamie are having the kids tonight so we don’t have to rush with them in the morning and they are looking after them tomorrow so Timm can stay with me. We’re so lucky to have such fantastic friends who are always there for us and offer to have the children whenever we are in need. I can’t thank them enough and love them very very much.

So I’m off now as I think I’m chuntering on…

Thanks for all the lovely good luck messages as well as the cards and flowers.

✌️& ❤️

Sam xxx

Hernia surgery update

I have been awaiting a date for hernia surgery, I am hoping this op is going to set me back on a healing path. My hernia isn’t large but it’s uncomfortable every day and is stopping me doing the things I want to do.

Anyway I heard from my consultants secretary this week. Mr Brown was unhappy with the time I’ve been waiting and has asked for me to be booked in to the private hospital in town rather than the usual one.

It’s a bit of a shock but for once, a nice one! Surgery should be within the next few weeks and will be with Mr Brown rather than just on the general list as was planned before. This has calmed some of my anxiety over this operation.

I was adamant that 2015 was going to have two things NOT happen for me. No house moving and no surgeries!!! After two huge ops in 2013 and 2014, I was really hoping for no cutting open of Sam!! Unfortunately that’s not to be, and I have been feeling really upset, angry and anxious. So the knowledge that I will be under Mr Brown’s care has really lifted my spirits and calmed some of my nerves.

Mentally I am struggling at the minute. I have just so much jumbling through my mind right now. Illness, jpouch, hernia, accidents plus my cut hand that’s still strapped up along with parenting and personal issues are making me feel fucking crazy. I am filled with self doubt, anxiety and sadness.

I’m carrying on regardless. Trying not to piss off everyone around me and just keep going. My head is swimming but I’m trying hard to work through my anxieties and sleep issues. I’ve downloaded a meditation app that I’m using at night to help me relax and sleep.

We are off to Filey for a few days next week and though we still have to work, it will be really nice to get some sea air, get out walking and have a change of scenery.

I’ll be photographing and instagraming my break next week so if you don’t already, head over and follow me over there (samcleasby)

Sam xx

Speaking

I did a talk at the Crohns and Colitis UK South Yorkshire Autumn lecture, I joined Mr Brown, consultant and surgeon at Sheffield Hallamshire and Northern General hospitals and we gave a patient/surgeon take on Ulcerative Colitis, surgery and treatment.  I had a brilliant time, the talk was filmed and I will share that with you when I get hold of the final cut.

I received this from Sandra Capewell, Chair of the South Yorkshire Crohns and Colitis group and was blown away.  I work hard to make a difference to the lives of people with IBD and to hear that I am helping just means so much.

 

“I discovered Sam Cleasby in an accidental kinda way and boy am I glad I did!  She’s an extraordinary woman… mother, homemaker, photographer, writer, public speaker, blogger… is there no end to Sam’s talents?  I first started reading Sam’s blog earlier this year and was blown away by her honest, open writing style (it does become addictive!).  She shares everything with her reader – all the ups and downs of her health along with stories of her loving family and views on self esteem – her words take you on a roller coaster ride in your own armchair.  You start to believe you know everything about her!  Sam has such a positive outlook on life – there’s glass half empty people and glass half full people but Sam is in a different league altogether… she’s the glass overflowing person.
Sometimes when you discover something good you want to keep it for yourself but I would have been doing a disservice to many if I had not shared Sam with others…  I asked Sam to give the lecture at the South Yorkshire Crohn’s and Colitis UK (CCUK) Autumn 2014 meeting and she was more than happy to oblige.  The old girl didn’t let me down.  The lecture covered her operations, positive body image and, as always, the continued support of her husband.  Her energy is boundless and her positivity is infectious – it gave people hope, even those experiencing different problems.  Just by being in a room Sam makes people feel happier.  And it wasn’t just me who was impressed with her lecture – here are a few comments from CCUK members:
“Very inspirational”
“The lady advocate for acceptance, self reliance and not giving up was the best speaker on positive behaviour and attitudes I’ve ever heard in my experience of 20+ years of IBD.”
“Interesting and informative”
@so_bad_ass you were brilliant!  You made me and another girl get teary (in a good positive way).  Poo shouldn’t be taboo!  Thank you.”
Read her blog.  Arrange for her to speak to your group.  Follow her story.  You won’t be disappointed!”
– Sandra Capewell (Chair – South Yorkshire Crohn’s and Colitis UK)
If you would like me to speak at your event, get in touch now
Sam x

Pouch issues

If you follow me on twitter or Facebook you may have seen that I’ve been having a few problems with my j pouch recently. After everything had settled a little, I was going to the toilet around 4-5 times a day which is pretty good for a pouchee. But for the last few weeks I have gone downhill and I’m currently going to the toilet 15-20 times a day and I’m having periods of bleeding.

I’m taking 4 loperamide a day and it’s just having no effect. I went into hospital last week for a flexible sigmoidoscopy/pouchoscopy and the results came back quite normal with a tiny bit of inflammation but not enough to be causing problems. So next step is to try and figure out what us causing the problems.

I have been tested for coeliac disease and I’m awaiting the results from that. I am going back into see Mr Brown on Thursday in clinic and we will see where we go next. Through email we have discussed a little plan of a low residue diet and using fybogel and then discussing an MRI to see if there’s any inflammation elsewhere in my system and use of medication.

So there’s the medical side… From a personal perspective I am struggling. I’m feeling quite down about this setback, it’s difficult to feel like I am back to square one. I’m going to the bathroom as much as I did during a flare up before my bowel was removed! It’s tough to feel like this after a years worth of surgeries and recovery.

I have been away this weekend with the marvellous Responsible Fishing, an arts group that I work with. We put on an event called Tidal Gatherings in Sandsend with stone balancing, sand and land art. It was fantastic but dealing with running to the toilet 20 times a day was very hard work. I had an accident once and waking several times a night was exhausting both physically and emotionally.

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It makes me feel a little removed from the situation when I’m like this. Like I can’t be fully engaged with the people around me as I’m constantly thinking about my guts and where the nearest toilet is. I feel like I need to just keep going and can’t let the team down but at the same time that I’m doing a half a job. All in all I’m just feeling quite sad.

I woke early one morning from our caravan and walked with Timm and our dog out to see the sunrise. I tried to find the silver lining by thinking about how I would have missed this gorgeous sight had I not been sleeping so poorly. That early morning silence was a really lovely time with just me and the husband and it was perfect.

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I’m worrying lately that having pouch surgery was a mistake. It is so hard at the minute and I kind of miss my ileostomy bag. Though it had it’s problems it did make running for the toilet fairly defunct! I was informed that recovery from pouch surgery can take up to two years and so I suppose that I need to have some patience.

I’m still really happy under Mr Brown and the team in Sheffield. These problems are unfortunate but I do feel like I’m being heard and that I’m being cared for really well. And so I will just have to see how I go, I will update after Thursday to see what happens next.

Thanks for reading

Love Sam xx