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Dear tea lady,

Dear Tea Lady,

I am so sorry that I don’t know your name, but every time we have met (which has been probably 20 times over the past three and a half years!) I have been dreadfully ill and self indulgent.  I do genuinely feel bad that I can’t remember your name as you have been one of the most important people in my recovery.  But I’m going to blame the drugs.

So dear Tea Lady of the Northern General hospital, I wanted to write a big thank you letter to you.  I have had 4 of my 5 surgeries at your hospital and benefitted from the wonderful care of top surgeons, consultants, anaesthetists, specialists, registrars, doctors, students, nurses and support workers.  All of these people gave me the most brilliant support and health care, I am so lucky to live in the UK and get free at the point of care, world class treatment.

I have had my colon removed, an ostomy created, a jpouch created, a jpouch removed, two hernias fixed, a rectum and anus removed and another ostomy created.  I have also spent weeks and weeks in hospital receiving medication, treatment, blood transfusions and care.

hospital pouch ibd ulcerative colitis

But you know the person who made me feel so much better every day? Yep, it was you!

I saw my consultant for a couple of minutes on their morning rounds, the doctors if something is going wrong, nurses through the day who are so busy and overworked and though I am sure they would like to spend a little more time with patients, they just can’t, I saw support workers, specialists and that huge team for the surgeries themselves.  Yet it was your face that made me smile several times a day.

You make your rounds with your tea cart and after day one, take the time to remember, not only my name, but also how I take my tea! It is a small yet important part of my hospital day, a little feeling of personal care and a reminder of home.

You made me feel special, when you spend a lot of time in hospital, you very quickly become institutionalised, it’s so easy to end up feeling like a number.  But you made me feel like a person, a person who likes their tea strong, yet milky and with one sugar.

I wonder if you know just how important your role is? Do you understand that you become a part of so many people’s recovery story.  You are the person I saw the most, a constant, nurses change from shift to shift, you only see doctors if something is going wrong, yet you are the person I saw several times a day, every day.  Your days off is always a sad one.

And so I want to thank you.

Thank you for all the tea, thank you for the extra biccies on the evenings where you thought I looked like I needed them, thank you for remembering me, thank you for knowing I am a person, not just a patient, thank you for the times you noticed I looked sad and came and touched my hand and made eye contact, thank you for taking your time to speak to me, thank you for the magazines you brought over when I was bed ridden, thank you for telling me about yourself, thank you for the gossip, thank you for being wonderful.

Tea Lady, you are awesome. (And I am really sorry that I can’t remember your name)

Sam xx

What to pack when going into hospital for ostomy surgery

Over on my Facebook page, Natalie got in touch saying she will be going in to hospital for ostomy surgery soon and it got me thinking about what you need to pack when going in to hospital.  I mean, we all know about the usual toiletries etc but I decided to ask my lovely readers what they would recommend to anyone going in for surgery for a colostomy or ileostomy, and man, they took it and ran! I got some amazing replies, over 70 in total and so I thought I would collate them all for a comprehensive list of what to pack when going in to hospital for ostomy surgery.

 

Hospital checklist

Lots of nightwear and underwear, more than you think you’ll need just incase of leaks or spills whilst you’re learning how to change your bags.

Baby wipes – Nicola

Room spray air freshener

Body lotion –  you dehydrate so fast in hospital – Vicky

An eye mask and ear plugs

Take a small pillow to squeeze whenever you need to cough, sneeze or laugh following surgery, it helps hold your stitches together and makes it hurt much less – Jaime

Jelly sweets, boiled sweets, salted crackers, hand cream & diluting juice. I liked having a little snack with me. Couldn’t eat much but found these little things handy, even through the night sometimes! – Jennie

Ear plugs or headphones are a must and slipper socks with rubbery bits on the bottom – Zoe

I took some poo pourri in because I had to measure my stoma output and it made the smell more bearable – Sue

Always salted crisps for me after surgery… my body craves salt at those points! – Nicola

Marshmallows to thicken liquid output before bag changes – Kate

Nightshirts that button up rather than pull over (if you’re having open surgery) – Amy

I took my own pillow and my iPad full of books – Sharyn

Slippers that are easily slipped on and off – bending down isn’t an option for a while. Dry shampoo, baby wipes, books, oversized PJs or nightie (so no pressure on tum) and large, plain cotton, high waisted undies that come up to at least the belly button – supportive and no extra pressure – Emma

A mirror to see stoma in full when bag changing, learning shape and how to clean properly etc – Kate

A nice scented body butter (just not anywhere near the bag seal haha) hair bobbles, baby wipes, dry shampoo, stuff to freshen you up and make you feel nice. And magazines/kindle to keep your mind busy – Katie

Warm socks, my feet always get really cold in hospital  – LT

Shorts and track bottoms and t-shirts as they’re loose and comfortable especially after a nice shower nice warm slippers as hospitals are pretty draughty hence cold floors, basic hygiene stuff shower gel, deodorant etc,and bio oil to treat the scars for improved healing – Kevin

I took one of my lovely feather pillows from home it really helped with sleeping – Vicky

Something that reminds you of home or comfort item such as a blanket, soft toy or photos. Having major surgury is tough, especially ostomy surgury. So having something with you during this tough time to help comfort you between visiting times and through the extremely long days and nights – Robyn

Jelly babies, lots to read, lovely clean big knickers, and lots of nighties. A bag you can keep everything in close by, you can’t move about much at first. Nice smellies, clean flannels – Carol

Lip balm for after surgery, moisturiser for hands and feet, baby wipes, make up wipes, maternity V shape pillow and a big comfy dressing gown along with some headphones to help you zone out the noise from the ward!! – Charlotte

Bed socks as they never tuck in the bottom of the sheets for sensible reasons and your tootsies get cold – Anthea

A picture of my family, warm socks, nail file – Katja

Comfy pjs maybe a size bigger than normal, leaves extra room for any drains etc and easy on a tender tummy. An ipod full of lovely music, tv, films & podcasts. Those little bottles of concentrated squash (the ones where you put a couple of drops in a glass). Your fave jumper or cardigan. Trashy mags with puzzles in. A pen. Wipes. Make up to make you feel better. Photos of loved ones. Any keepsake that makes you smile – Julia

Snacks hospital food is a bit hit and miss – Vicky

Flip flops for the shower! sometimes gastro ward showers can be a bit grim – Joanne

Antibacterial hand wash for changing and emptying your bag if you are confined to your bed at first, mouthwash, a pen – Nicola

Lucozade Sport or Powerade – Shell

I always bring my vitamins, protein and fiber. I know what works for my body. – Amelia

Drinking straws in case you can’t sit up to drink, chap stick, bonjela (I had terrible ulcers from the diet/drugs), if you have a tablet get some music, films and simple games on there, you may not have wifi – Dan

A sense of humour – Nicola

Beanie for bad hair days, good headphones, mint tea – Winny

Pink and white marshmallows & jelly babies are always a must for me when I go in!! Marvellous for ‘firming up’ ya poop, especially ileostomy poop!  – Claire

NO VALUABLES – Sidra

Petroleum jelly! Soft pants and big sanitary towels – Kirsty

Headphones for phone/tablet/tv if you’ll have a roommate. A notebook or preferred memo app for logging medication info, questions, output – Regan

A scarf covered in your favourite perfume – Frankie

I took my straighteners and hair dryer in because the first time I had surgery I looked like the pigeon lady from Home Alone! Plenty of cash, these places aren’t cheap when the shop trolley comes round and you fancy watching some tv. Oh and decent luggage because guaranteed you’ll go home with more stuff than what you went in with! It’s also easier to pack when you get moved wards etc. Heat packs are also good for back pain etc – Donna

An extension cord or portable phone charger for when you can’t reach the plugs – Alice

Face wipes. I wasn’t wearing make up but it felt so refreshing to wash my face – Lee

Lavender hand cream and a little bag of lavender to mask the hospital smell – Liz

Dry shampoo. Phone charger. I couldn’t focus to read but I could scroll through Instagram or Pinterest. Also stretchyand bigger than normal clothes to wear home. There will be bloating and swelling. The last thing you want is anything restrictive. – Lee

Baggy shirts, sweatshirts & PJs, dark colored at first – Susan

If it’s a woman and she is taking birth control pills – she should pack some pads. If she isn’t well enough to take her pill she will get her period after a few days of missed birth control – Brandi

Post Op j pouch ileostomy ibd surgery sheffield sam cleasby so bad ass

Thank you so much to everyone who replied, you can see the whole thread here!

I hope this is helpful to anyone facing surgery any time soon, I know it is scary but all these little things will make it that bit easier and it is so great that they all come from people who have been there and understand what you are going through.

Sam xx

 

 

How to not be a dick patient in hospital

I have spent a lot of time in hospital on the wards, it adds up to months and months of my life and in that time, I have seen a lot.  Mostly good stuff, but some things that set my teeth on edge!  I love our NHS, we are so lucky to have one of the best health care systems in the world that is free at the point of use.  Our NHS is run on nurses, wonderful, brilliant, hard working nurses, as well as a whole plethora of support staff, doctors and surgeons who work together to give us outstanding care.

I know it goes wrong sometimes, I have had the odd bad experience with nurses and doctors and that’s not ok.  But you know what is really bloody wrong? The amount of crap nurses have to put up with from some patients, and so I thought I would give you my guide to avoid being the patient everyone dislikes, how to not be the one who sets the staff’s teeth on edge, how to not be a dick patient in hospital.

dick3

 

Be polite.

It’s a simple one, but oh, so important.  I know you may be in pain, frightened, at your lowest ebb, but manners cost nothing.  Say please and thank you.  People are doing things for you, therefore you should thank them for their time and effort.  Need a bed pan? Don’t demand, ask nicely.  Has a member of support staff just cleaned your shit up? Say thank you!

You aren’t more important than anyone else

Your illness is important to you, but your pain and suffering is no more or less important than anyone else on the ward.  Your needs will be prioritised by someone in the know.  Don’t assume you should get attention above others.  I have seen it a million times when a patient calls your nurse away from you.  Wait your turn!

Be humble

If you are laid in bed and unable to do anything for yourself then no matter how much money is in your bank or how important your job is, you are at the bottom of the food chain, so be humble and grateful to those around you.  That woman mopping the floor is currently lapping you, so thank her.  The man making you a cup of tea is beating you in the ‘being able to get out of bed, go to work and make tea’ status, so smile and be grateful.

hospital drip stand IBD disability

 

Don’t be a dick

I know you may be in pain and feeling terrible, you are probably scared and shaken, but don’t be a dick about it.  The staff know it is hard being a patient and want to do everything to make you comfortable, they don’t deserve to be shouted at, mocked or abused.  I have heard patients loudly comment about nurse and support staff’s weight, appearance and sexuality.  Not cool.  Not cool at all.

Speak up, don’t scream out

If you are struggling, speak up.  But don’t scream out.  It can be frustrating and anger inducing to be in hospital, but don’t lay this at the feet of the people caring for you.  They are at work and doing their job, they are human and don’t deserve to be a verbal punching bag for you.

ibd hospital jpouch canula medications

Be respectful

Respect is a two way street, I have seen patients scream at nurses, call them names and then whinge that they aren’t liked and everyone ignores them.  The people caring for you are doing a tough job, give them credit for caring for you for little more than the living wage.

Think of your fellow patients

You may be at your lowest point, but it’s likely that so are the other 7 people on your ward, so think of them too.  Keep the noise down, smile at them, don’t be nosy about their private medical needs.  “So, what you had done?” is never really an ok question in my books.  If people want to talk about themselves they will, don’t pry.

sam cleasby ulcerative colitis ibd ileostomy surgery

If it’s good, say so…

If you are receiving great care, then say so, thank the person, tell them how much of a difference they are making to you.  If you feel a certain person has made your life so much easier, then let them know.  My nursing friends tell me that even in their worst nightmares of shifts, the praise and gratitude of one patient can make it all better.

 

So much is put on the behaviour and attitude of NHS staff, and rightly so.  They should have to behave in a way that is respectful, caring and professional, but us patients have our role too and we need to think of others even in our own greatest time of need.

 

Sam x

It’s been a while… The bag is back

Hey guys, it’s been a while hasn’t it, but I thought it time to update on the big operation!

So I got a call on 5th January saying there had been a cancellation and asking if I could come in for surgery on the 6th. It was a big shock, but I agreed and headed in for 7am to the Northern General in Sheffield for my Jpouch removal and permenant ileostomy surgery.

I checked into the pre op ward, saw my surgeon and anaesthetist and was taken down to surgery at around 9am. I was having an epidural inserted for post op pain relief and unfortunately, it took a while, 7 attempts in total!  The anaesthetist was great, very friendly and warm, he chatted and apologised for the complications. He’d actually been my anaesthetist for the last big surgery and we’d had no issues previously.  I’d had plenty of local anaesthetic though so it was not painful at all. These things just happen sometimes!

So once that was in, I laid back and they began putting me under, I literally don’t remember a single thing! No counting down, just bang and out.

I awoke several hours later in recovery, I had zero pain and was just very, very tired. I ended up staying in recovery for a good few hours as my blood pressure was at 80/50 and there were concerns that it was too low. The nurses were lovely, I was just really dozy and sleepy and so I’m sure it was more worrying for others than me as I was snoozing!

I was taken up onto the ward and Timm was there waiting for me, I was totally out of it but pain free and happy. I don’t really remember much of his visit apart from being happy he was there. Apparently he took photos though!



The first couple of days went on a blur, I had an epidural for pain relief plus IV paracetamol, antibiotics and fluids to bring up my blood pressure.  I was a mass of tubes with three IVs in two canulas, oxygen into my nose, a catheter, a drain from my stomach and the epidural tube.  I had two big dressings on my tummy and my brand new Stoma. To be honest, it was all a bit much to take in.


Whilst I had the epidural in, I had no pain at all. But on day 3, the epidural came out and things all got a bit trickier. It was very painful but I had all manner of oral pain meds and it started to get under control. Mr Brown came to see me and said the op had been a success, that it had taken a long time and had been complex but he’d expected that. He was happy with the outcome and now I just need to recover from the op.

So what did they do?

My Jpouch, which was a bag formed from my small intestine and connected to my rectum, was removed completely.  They then took out my rectum and sewed up my anus. I’m now the proud owner of a Barbie Butt! I have no bum hole!!!

He then formed an end ileostomy, this Stoma is on my right side and is permenant.  So now I have my bag for life. The recovery has been hard going, I came home after 5 days and have been recouping in my own bed, which is so much better than being in hospital.

I have a few wounds to be dealing with so its quite tough. I have the wound in my bottom which feels like I’ve been kicked in the undercarriage (high five for using the word undercarriage), my wound in my stomach is 17cm long and goes from the top of my belly button straight down into my groin.  This is painful and when I stand, it feels like everything is going to fall out!  The top inch has opened up and so it’s being packed and dressed by the district nurse twice a week.  Then there is a 1.5 cm wound in my stomach where the drain was, this needs to heal from the inside out and so is open and slowly drying out.

Then there’s the new Stoma.

I am struggling. Mentally and physically.

Physically, I know what I’m doing and how to change bags and so that part is ok, but the stoma has come away from the skin on one side and has left a big hole into my abdomen. This is painful and makes it hard for the bags to stick.  The Stoma nurse says it happens sometimes, not to worry about it and that it needs to heal on its own. I can’t help but be concerned that it’s getting poo in it and will get infected but she says it will be fine.

This, in turn, has made my skin around the Stoma very raw, like an open sore. It hurts a lot and makes bags not stick so I then leak.  The leaks are soul destroying.  There’s nothing more dismaying than being covered in your own shit. It makes me cry and feel desolate.

I had a massive leak and couldn’t deal with it alone, I needed help to get my clothes off, I had to shower and I needed Timm’s help, though I didn’t want it. I cried as he sat me down and peeled off my soiled clothes, begging him to leave me to it, even though I know I needed the support. He was calm and loving and wiped away my tears, telling me everything would be OK.

I’m kind of surprised by my struggle. I thought that because I’ve had a Stoma before, that I’d be fine with it.  I’m not.

I don’t feel ready.  I change my bag but I hate seeing it, looking at it, touching it.  I wish I could ignore it completely.  I know this isn’t my usual happy and positive stance but it’s important that I’m honest.  And honestly, I feel sad, angry and frustrated.

It’s the knowledge that this is forever that hurts. That now there’s no going back and that till the day I die, I’ll have this bag.  I want to scream that it’s not fucking fair. I’m angry that this is the hand I was dealt, pissed off that I can’t have a normal, healthy body.

It’s early days though. I’ll learn to accept this and adapt to my new life.  You know why? Because I don’t have a choice. I don’t want to feel this sad forever and so I’m going to have to learn how to be happy with this change.

After a week at home recovering, we got some news that has shook everything. My grandpa passed away this week. It was unexpected and is a huge blow to us all.  I visited my mum, nannan and family, though it was physically tough, I was in a lot of pain and had a terrible leak on the way home but I’m glad I did as it felt right to be in their home and surrounded by family.

grandfather and granddaughter

So I am home and recovering.  I am an impatient patient, I just want to be back up on my feet and doing everything, but I know that I need to listen to my body, rest and heal.  It is so good to be back in my own bed rather than hospital, I have had so many lovely visits from friends and family.  Timm and the kids have been brilliant, and whilst Timm was at work last week, my awesome friend Caroline came over and looked after me for two days and then my mum came for four days.  They’ve cooked, cleaned, looked after the kids, cared for me and just been fantastic.  I couldn’t thank them more, they are both brilliant.

You don’t know just how lucky you are to have friends and family till you are broken and in need, we have both been blown away by the love that has been showered on us all as a family since the op.  We had three friends come over to the house when I was due out of hospital and cleaned up for us, changing bed sheets, hoovering and leaving my bedroom welcoming with flowers and candles.  We’ve had meals delivered to us, movies sent, chocolates, cards and flowers as well as people just coming to visit and sit with me.  Honestly, I am humbled, thank you to every one of you.

I have also had so many emails, messages, texts and phone calls from friends, family and readers of this blog, thank you so much, it means so much.

And so now I am just at the stage of resting, recovering, nurse visits and healing.  I still have quite a bit of pain and I’m on painkillers but it’s not so bad, I am still sleeping a lot and being upright and walking is hard work, I am sitting on donut cushions and have a million pillows in my bed to prop me up and surround me in order to get comfortable.  It is flustrating (my new word garnered from watching two whole series of Hell’s Kitchen, a mix between flustered and frustrated!) to be unable to just get up and do all the things I want to.  We are due to move house and so I really need to be packing, but I am instead pointing and things and asking others to pack for me.

But I will get there, I am sorry for my lack of blogging, this surgery was so big and scary and the recovery so tough, that I needed a little time off.  During the last operations and recovery, blogging had felt like therapy for me, this time I needed a bit more head space, but I am now back and will be writing about my recovery and life as So Bad Ass with a vengeance!

 

Sam xxx

Guess what? It’s time!

I just had a call from the hospital and they’ve had a cancellation! I’m going in tomorrow morning for my op!  I am having my jpouch removed, my butt sewn up and a permanent ileostomy formed.

I am a bit in shock, it is all very real now.  I mean, I knew it was coming but this is it, the final day of my life without an ostomy.

woman with scars on stomach ibd blogger sam cleasby

I’m scared, upset and bewildered but life at the minute is crap, I am so ill, I go to the toilet 20 times a day and have accidents, so it has got to be better than this!

I will ask Timm to update when he can, if you don’t already, you can follow me on Facebook and twitter where I am more likely to be (though the internet/phone connection in the hospital is shit!)

It’s a big operation and recovery takes a while, but I will try and blog whenever I can.  I just hope this is the start of a new, happier and healthier life for me.  I’m a bit in shock and need to go pack my bags and get myself ready, so I’d better get off now as I think I am waffling.

I’ll see you all on the other side, yo.

 

Sam xxxx

Funny things overheard in hospital

During my last stay in hospital, I heard some brilliantly weird lines and jotted them down on my phone… I just found them and thought I would share.

You hear some great things on the ward…

“Did you know that they mummified Princess Diana? Mummified or embalmed. Are they different?”

“Elvis is alive! They just found him dead in America!”

“I think I just turned the TV off with my mind.”

“Some people drink piss you know! I couldn’t stand the smell, but I think it would taste ok”

“Sorry love, but you’re down wind from me and it’s going to get breezy”

“I think they’ve bled me dry, but if that handsome young doctor is doing the blood rounds, he can take some more! It’s been a while since I had a young man on his knees in front of me!”

“I don’t know whether this pie is sweet or savoury”

 

Being in hospital is tough, but you meet some of the most interesting people.  And many of those people are on medication.  It’s comedy gold!

Please share some of the funny stuff you have heard in your time on the wards!

 

Sam x

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 

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 

I think I’ve found a topic even I feel shy in talking about… 

Type. Delete. Type. Delete. Draft. Scrap. Write. Burn laptop and bury remains in the woods.

I’m struggling at the minute with something that even I, Poo Lady Sam, am finding it hard to talk about.  I’ve shared with you all every high and low of my illness journey in the past two years, from shitting myself to surgery, tears to joy, complications and photos of my intestines!

So why is it that I can’t bring myself to talk about what I’m going through right now?

The truth is that I have a vaginal prolapse. My intestines and pouch are pushing against my vaginal wall from the inside and I am struggling with a rectocele.

This is really uncomfortable, makes toilet trips very difficult and hardest of all, I am so desperately embarrassed and sad about it all.

Why this complication feels SO MUCH WORSE than anything to do with my IBD I have no idea.  I suppose it’s because your fanny is so private, that it’s the centre of your womanhood, that the connotations around a less that perfect vag-j-j are humiliating and hurtful.

Perhaps it’s because we are taught to not speak about our genitals? Perhaps I am worried people will laugh? Maybe I’m concerned this is too private to talk about on a blog?

Even as I write this, I am very unsure of whether I’ll hit ‘post’.  But like every other medical ordeal in the past few years, I thought that the act of writing this could be cathartic, whether I share it or not.

When I say the word ‘prolapse’ out loud, I cry.  I get a lump in my throat and tears spring into my eyes. I feel shame burning across my chest and making my cheeks glow fiercely.

I’m in pain. It hurts, this dragging back ache and a psychological terror that everything will fall out.  Going to the loo is stressful, upsetting and scary.

But worse than all of that is this feeling inside like a small black hole that’s slowly absorbing any good feelings. It’s making the colour drain from life, sucking at happiness. I can’t think how I can cope with this setback, I’m scared.  It doesn’t feel fair. I’ve had my bad luck, surely I get a break now?!

I am trying hard to maintain a jolly personality and ensure that from the outside, everything is ok. I can sense, and I think others can too, that it’s all a bit forced, that my laugh doesn’t ring quite true, that my voice is a little too loud and my smile not very genuine.  I just can’t bring myself to admit to others that I am struggling as I don’t want to talk about my broken fanny!

And this is me! Bloody hell I talk about some of the most embarrassing conditions known to man! I go in the newspapers and on TV and talk about my arse!!!! Jeez, it’s ridiculous that this is throwing me so much.  I keep reading this post in my drafts and adding to it, all the while very much doubting my ability to send it out to the whole world.

As I read up on the problem, I see the nhs suggesting that often they will leave the issue if it’s not severe. This upsets me as I wonder what their levels of severity are?  Right now this is all I can think about. It always feels like there’s something in my vagina, it’s painful in my groin, I spend my evenings with a hot water bottle inbetween my legs!! I also can’t use the toilet very well, having a Jpouch means that on a good day, I poo 5 or 6 times and I currently have pouchitis so I’m going a lot more and I’m feeling very poorly.  So this added problem is firstly making me too scared to go and secondly taking so much time.

I don’t want more surgery. I’ve had 3 in 2 years! But I also don’t want to have this become my life.  I’m developing this intense fear of anything to do with inside my knickers!  The idea of using the toilet is too much to bear, so anything else is just a million miles away.

The thing that makes me want to share this post is that I have learnt that it is a complication that many women are dealing with, some due to IBD and the Jpouch and others due to childbirth, illness, cancer etc and I’m fairly confident many of them feel this embarrassment and shame that I’m experiencing.  So maybe I need to be brave for them in the way I stood up and was brave for those with IBD?

I’ve seen my consultant and I’m back on Tuesday for him to do a scope in my pouch and he’ll also see what’s going on in the front too. So hopefully will have more answers soon.

Till then I am trying to freeze and shrink that swirling vortex of doom that is this mental black hole. Trying to paste on a smile, get through each day and not let this sadness take hold.

X