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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

J Pouch surgery

So this morning I had an appointment with my lovely surgeon Mr Brown, it was an 8.30am appointment and so with it being half term we got the kids ready and set off at 7.30.

We got to the hospital, parked and was in the clinic for 8.15. The receptionist said she couldn’t check me in as she was medical and I had to wait for the surgical receptionist to get there. At 8.35 she arrived and then told me we were at the wrong hospital!!!

I showed her my letter that said it was at this hospital and she said ‘oh yeah, we sent the wrong letter!’

We then had to drive across Sheffield in rush hour traffic to get to the other hospital right on the other side of the city and just wait to be fitted in.

I could have cried! You work yourself up for these appointments, worrying about what the outcome will be and to then face more travel and time is a total pain.

so bad ass sam cleasby ibd awareness

Anyway we eventually saw the surgeon. Timm came with me for moral support and to remember the questions I always forget I want to ask and the answers given that drift out of my head before I reach the lifts.

Mr Brown is so nice, he’s my favourite doctor and always makes me feel better. We discussed the hernia that I have developed (Ill be doing a separate blog post about that) and then we talked through the pros and cons of pouch surgery.

I have to have a test done to check the muscle strength in my arse… Lovely. Basically they put a tube up your bum and it checks the pressure and sensitivity of your butt muscles. If they aren’t strong enough, it’s a good indicator that post pouch surgery you could be incontinent.

I’ve never had issues with that before so were all hopeful it won’t be an issue. Once that test is done, he is happy to go ahead with the surgery. Due to work and family commitments we have asked for the surgery to be done at the end of September or beginning of October.

Our photography business The Picture Foundry is sooooo busy at the minute, I also work with arts collective Responsible Fishing and this summer is crazy busy for us with creative workshops for children, arts installations and festivals.

I also am beginning to get busy with presenting talks on self esteem and body image and working with teenagers on a whole host of projects. I’m writing a lot more and got a few guest posts on blogs, magazines and even a bit of copywriting and blog writing for other companies on the go.

Oh yeah, and I’m moving house and renewing my wedding vows!!! So I have just a bit on my mind right now.

But come October things will calm down a bit and I can afford to have the time off work and timm will be less busy and able to look after the kids and me.

so bad ass sam cleasby ibd awareness

So the surgery…

colectomy and ileostomy diagram

The first picture is a normal digestive system, the second is after a colectomy and showing an ileostomy.  Im currently at the second picture stage.

J-pouch diagram

This is what the digestive system looks like after j-pouch surgery. You can see that the entire colon has been removed and that only the small intestine is left.  The end of the small intestine currently forms my ileostomy, during pouch surgery the surgeon constructs a pouch out of the small intestine by folding it up on itself and making it into a reservoir.  This is then attached to the anal canal.

This is called pouch surgery or ileo-pouch anal anastomosis or IPAA… Also known as J pouch, Internal Pouch or ileo-anal pouch.

After this surgery I will no longer have my stoma or ileostomy bag, my waste will go through my system and then be stored in the pouch, because I still have control of the muscles in my bum I’ll be able to hold waste and pass it normally into the toilet.

There are a few issues surrounding pouch surgery, one is that as the pouch is no where near as big as my large intestine was, Ill need to go to the toilet quite a few times a day.  Most people after everything is settled go 4-6 times a day or whenever they pee.  This may seem like a lot to someone without IBD but when I was having a flare of of Ulcerative Colitis I could be going 20-25 times a day with urgent, bloody diarrhoea and painful stomach cramps.  Currently with my ileostomy I go to the toilet and empty my bag around 5 times a day plus once or twice during the night, so this part doesnt bother me too much.

Other problems can be butt burn… basically, the large intestine neutralises your poo, when you don’t have that, the waste that leaves your system is quite acidic.  Currently with an ileostomy if I get waste on my skin through leaking, it can burn my skin and leave it really sore.  So after pouch surgery that same waste will be coming out of my butt.  Hence the butt burn.  Using a barrier cream and baby wipes is told to really help with this and apparently the skin soon toughens up and learns to deal with it!

Pouchitis is inflammation of the pouch, it is treated with a course of antibiotics.

Mr Brown would like me to have the one step surgery.  This means that the pouch will be formed and connected in one step, Ill wake up without an ileostomy.  It requires at least 10 days in hospital, during this time I will be on a liquid only diet and have a tube placed into the pouch that will irrigate it three times a day.

The alternative is the two step surgery in which the pouch is formed and attached, but another ileostomy is created further up the digestive system to divert waste from the pouch till it is full healed.  Then after a few weeks, the second surgery is performed to close up the ileostomy and the pouch begins to work.

There are risks to both, as with any surgery.  The one step is quite a tough recovery but I trust my doctor and having researched a lot I am happy to go with the one step. (I think!!!)

There are risks associated with fertility, but as I already have three kids and Im definitely not planning any more this isn’t a problem for me.  Other potential problems are internal leaking which can lead to all manner of bad juju, incontinence, abcesses, fistulas and all manner of other scary stuff.

I really want to go into surgery as informed as possible, its so important to me to feel like I know exactly what Im getting into BUT I have just spent the last hour terrifying myself by reading forums of people with pouches.  I need to remember that people are more likely to write about bad experiences than good ones.  There are always complications and problems possible with any surgery, its not good to get caught up on every single what if.  Ive done my research, spoke to my surgeons and specialised nurse and I *think* I have made up my mind.

Its not an easy decision.  My ileostomy is now healed and I have very few issues with it, I eat pretty much what I want with only a few exceptions and my life is a million times better than before I had surgery.  So it does feel like a risk to have another surgery that could possibly make things difficult again for a while.

They say it takes around 18 months for your body to become used to the pouch.  Thats a bloody long recovery time, but the chances are good that my life will be better and I won’t have the ileostomy bag any more.

As for success rates of pouch surgery, the generally accepted figures are these…

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

So I have an 80% chance that things will be fine.  I need to remember this when Im stressing out and crying because Im reading yet another forum with people screaming their woes.

Im feeling quite stressed about the whole decision process, but Im lucky to have a fab husband to support me and a great doctor who in knowing my worries has given me his email address so I can talk any concerns through direct with him.

Thanks for reading

Sam xxx