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I got my date for surgery

So I have a date for the next, sorry I mean LAST surgery! 30th April I will be heading in for what I hope and pray will be the last operation I have.

Ive been referred onto a doctor who specialises in complex abdominal cases and he is going to repair the two hernias and move my stoma again. I have been warned that it is a major operation, that my case is complicated and will be difficult and that he won’t really know his plan until he opens me up.

The parastomal hernia is huge, the opening is very big and measures about 15cm on my stomach and they know I have a lot of adhesions, that everything is stuck together.

They said it will be around 6-7 hours of surgery, 10-14 days in hospital and 2-3 months off work recovering.

Ive been told it’s risky, that I have a 75% chance of complications and that is terrifying me. I have stopped smoking though, I’ve moved onto a vape and this reduces my risks by 10% so that’s one positive.

Ill be going straight onto the POSU (Post Operative Surgical Unit) with the chance that I may need some time in HDU (High Dependency Unit).

Sam Cleasby Sheffield blogger chronic illness hospital surgery

How am I feeling? Well it feels very real now, though I knew it was coming, having a date has set it in motion and I’m feeling panicky and anxious. I’m scared of the complications, I’m scared of the long hospital stay, I’m scared I won’t come home.

I know I can’t dwell on thinking negatively but man, I just feel so frightened that this will be the one that it too much. This will be surgery number 8 in the past 5 1/2 years and I can’t shake the feeling that it’s one too many.

I’m in so much pain every day, it feels like everything is going to fall out of my stomach every time I stand up. I am struggling to function, I’m always in bed. Doing one thing means a week of being unable to stand. I’m always medicated and drugged up and I know I can’t live like this and that I need this surgery.

And so I have to try and think positively, I’m reading a lot about the mind body connection and how meditation and visualisation can decrease pain, stress and anxiety and can improve mental health, shorten recovery time and help you heal quicker.

I feel like I’m on a narrow ridge, on one side is positivity, strength and happiness and on the other is a swirling mass of anxiety, fear, sadness and panic and honestly, I feel like I could lose my balance either way right now. I’m trying to slide into the positivity but there’s this weight pulling me towards to shit storm of crapness.

All I can do is fight. I’m doing everything I can to be as strong as I can mentally going into this. I’m meditating daily, I’m spending time outdoors, I’m planning my recovery.

But there’s still a part of me that is planning to fail. The chest freezer I bought and filled with food so Timm won’t need to worry too much about big shops when I’m in hospital is also a safety net of me thinking they’ll have food if I don’t make it. The days out and nice things I’m pushing myself to do are because I won’t be able to do much for a couple of months will also be nice memories for the what if.

Fuck, that’s dark isn’t it!!

The thing is that keeping those dark thoughts to myself gives them power, it allows them to take over my head and drown out anything good and so I say them out loud and yes, they’re depressing and horrible and messed up. But then I see them written down and can separate myself from them, I can see them for what they are; my anxious brain coming up with a list of what ifs and plans for the worst.

And once they’re out there, maybe I can let them go and go into this surgery as positive as I can be.

Wish me luck, I’m going to need it.

✌🏽& ❤️

Sam xx

I had my pre op!

This week I had my pre op assessment for my upcoming surgery. Pre ops are for when you’re having a general anaesthetic, you have a hospital appointment with a nurse to check if you’re fit enough for surgery.

They check your height, weight and blood pressure, take blood and either take swabs to check for MRSA if you have your surgery date soon or send you home with a swab kit for you to do the week before surgery and they assess whether you’re fit to have a general anaesthetic.

Its also an opportunity to discuss the surgery and any concerns you might have. As I’ve mentioned before my biggest fear at the minute is that I won’t receive proper pain relief after the surgery as this has happened to me twice before in this hospital.

After a big op like the one I’m having, I tend to have an epidural in place that delivers pain relief for the first few days after surgery. When this is taken down it can be a big shock to the system and good regular pain relief is a must.

Unfortunately twice now I have been left in agony due to the ward nurses not giving me appropriate drugs on time and now I’m terrified it will happen again. So much so that I almost don’t want to have the surgery at all.

But I got time to speak to the nurse this week and share my fears. She told me that it was unacceptable that this had happened and that if it happened again, to immediately ask to see the matron who would sort it out and be majorly pissed off at nurses not doing their jobs.

As I’ve said so many times, I have huge respect for nurses and the vast majority are bloody wonderful! But there are some shockers.

In a book I read this week (healing from the inside out, Nauman Naeem) it talks about how ‘good patients’ as in those who don’t speak up, press the buzzer, complain when needed are at much higher risk of complications and that rather than being a patient we should be a respant – a responsible participant.

The nurse also has arranged for the accute pain team to see me ASAP after surgery and has made notes for the anaesthetist to let them know how nervous I am and my past experience. She said they will be able to write me up for decent pain relief before they even consider taking the epidural down.

She has reiterated just how complex this surgery is going to be, around 7 hours in theatre and a high risk of complications. They have booked me into the post operative surgery unit (POSU) for straight after where they’ll keep a closer eye on me and if I need to be transferred to the High Dependency Unit they can do that quicker and more easily.

I will need to be in hospital for at least 10 days and recovery will be 2-3 months.

They will be repairing the huge parastomal hernia, it’s a massive opening about 15cm and the incisional hernia on the other side and moving my stoma again. I have adhesions everywhere and so these may cause problems.

Its fair to say that I’m terrified.

Im trying very hard to stay positive, I have a new mantra (again from reading the book above) that I tell myself every day to fight against the feelings that everything is so tough right now and I hope that having more open and positive thoughts will aid in my healing.

“I am open and welcoming to healing, strength, love, joy and happiness”

 

✌🏽& ❤️

Sam xx

 

Health update

I thought I would give a bit of a health update as I feel like I am just constantly complaining on social media about how grim I feel.

I have two large hernias (I know, I know, I’m as sick of hearing that word as you are!), one is a parastomal hernia, this means it is sat right behind my stoma and one is an incisional hernia in one of my many surgery sites.  The parastomal one is the most painful, it is quite large and gets bigger throughout the day.  It is a constant feeling of pressure behind it and it feels like all my insides are going to burst out at any minute! The second hernia is not painful all the time, but a few times a day it is an awful stabbing pain, it takes my breath away and so between the two I am really struggling with pain.  I’m on codeine and nefapam for the pain which help but also make me super groggy.

The other issue is I have a large ovarian cyst, at the last CT it had grown and was around 7cm big, I am having weird periods (long gaps and random bleeds) and a feeling like constant bad period pain.  I also apparently have a large, fluid filled fallopian tube (because why not throw another thing at me!!) and so I am waiting for further scans and tests for this.  I think it is due to the huge amount of adhesions in my body, basically everything is stuck together and altogether unhappy in there.

So the plan is for the gynae surgeon to take out the cyst at the same time as they fix my hernias if possible. Mr Brown wants to get another surgeon involved, he specialises in complex abdominal cases and I have an appointment to see him at the beginning of February.

And so I am just still in limbo waiting for a surgery plan and date. On one hand, it just cant come soon enough, I am getting to the point where the pain is getting too much, my nerves are shred and every ounce of patience has been used up.  I am short tempered, pissed off and struggling to not lose my shit.

Talking of losing my shit, the parastomal hernia is making my stomach a very weird shape and so bags are not wanting to stay put, so I am leaking really often which is just making life all the crappier.  This is my parastomal hernia, the pic was taken after a day of rest and so is actually not as big as it usually is.

parastomal hernia

Most days I look about 6 months pregnant and so that’s not much fun at all…

I dropped my work days down to three days a week a couple of months ago as I was finding it so hard to keep up with everything whilst feeling so ill, exhausted and in pain every day.  This has helped a lot, but to be honest, even part time work is a real struggle right now.

Also because I had two surgeries last year and subsequent time off to recover, I am out of paid sick days so I am panicking about how much time I will need off after this next op. If it goes to plan and they do the two surgeries in one go, it will be a big old op and I will need a lot of time off afterwards to allow myself to heal. But I also won’t be paid for this time.  Of course, my health has to come first and I will take as much time as I need and the doctors recommend but adding the financial worry to the mix isn’t helping.

And so I think that is everything up to date health wise. Basically my body is broken and I’m waiting to see if docs can make life a bit less shit!

I know I have been a right whinging bag on facebook and twitter, but honestly I don’t even apologise for it! Life with chronic illness isn’t all positive quotes over images of clouds, it’s not all high fives for celebrating our awesomeness and shiny, happy selfies with puppy noses.  Sometimes it is dark and miserable, lonely and scary and the one thing I promised myself over 5 years ago when I started this blog was that I would be honest about the highs and the lows.

Thank you so much for all the kind, lovely messages I have received over the past few weeks, I try my best to reply to everyone but don’t always have the energy, but I do read them all and each one means the world, so thank you.

Sam xx

Hernia update

So after seeing Mr Brown last week and being sent for a CT scan, a hernia has been confirmed.

Obviously after two hernia ops already this year, I’m devastated.

Its behind my new stoma and is sore and swollen, it’s awful news yet again and to be honest I don’t know how to feel about it all.

It just feels very unfair and I’m really cross with life at the minute. But I will pick myself up and plod on!

Im here, I have an amazing husband, I’m blessed with wonderful kids and friends and it could be worse!

Parastomal hernia

What to do next? Well the good news is that it’s not bowel poking through the hernia right now, it’s fat and tissue so though uncomfortable and unsightly, it’s not an emergency.

So I’ll continue seeing my physio, I’m going to try and lose some weight and I’ve stopped smoking so we’ll see how I go!

Sam x

Surgery number 5

Like Mambo number 5 but with more general anaesthetic!

So if you follow me on Facebook, twitter and instagram, you may have seen that I have been under the knife again.  I have had two hernias develop since my last op in January and I was on the waiting list to get them fixed by Mr Brown but last week, out of no where, I had a huge, sharp pain in my stomach and my incisional hernia (that runs through my belly button) had popped out and got stuck.

I was sick with the pain and knew immediately that I needed help, I never go to A&E as I hate the waits and the people in the waiting rooms (I know that’s judgemental, sorry!!) But I called Timm from work and asked him to come home and take me to hospital.

incisional hernia with ostomy

I was vomiting with the pain, sweating, crying and a general mess but was seen quite quickly and taken onto a surgical assessment ward where doctors thought I would need surgery as soon as possible.  I stayed in overnight and had a CT scan as they thought that there were loops of bowel stuck through my hernia and were worried they would be damaged.  The scan showed that the hernia was very large and there was fat and tissue stuck through it but luckily no bowel.  I was very relieved as I don’t have that much left, so I can’t risk losing any more!! The other thing it showed though was that my parastomal hernia was worse than imagined and the two were almost joining up with only a centimetre between them, so surgery was the only option.

It was all such a whirlwind, the next thing I knew I was being prepped for surgery, and then I awoke in recovery!  It was a big surgery, almost 5 hours long and a lot more complicated than the doctors had first thought.  They had to open me up and pull in the muscles from the sides, remove the tissue that had been stuck and fix the two hernias with two types of mesh.  One was made from pig skin, so you can officially call me Miss Piggy!

incisional hernia with ostomy surgery

After a few days in hospital, I asked to be discharged home on Monday and have been recovering at home since then.  It has been really painful, a lot more painful than my last hernia op, than in comparison was extremely simple. I feel like a punchbag, I am pretty much bed ridden and really struggling to do much at all.  I am feeling quite emotional and sad about it all, I think it is just the shock of everything happening so quickly, it is taking a bit of time for my head to catch up with the rest of me.

It’s all a bit sudden to be honest and has thrown things up in the air as I am due to start a new job and also because I am about to fly to India in a couple of weeks and so I was in a real panic going to surgery as I had no idea how it would affect these things.  But after talking with Timm, we are on it.  To be honest, it is good timing for the job, I’m not due to start till after my hols and so it means that it is done and dusted before work starts.

Regarding India, it is a bit scary.  If this were just a holiday, I would cancel.  But we are going to our family’s home town where they are honouring my grandfather who passed away this year in a football match and commemoration where we are scattering his ashes.  It is so important to me to attend and so I am fighting through.  Doctors are backing me on this as they understand how much it means and I am under instruction to wear surgical stockings, have daily blood thinning injections and a whole list of other things to keep me healthy.  We are getting a wheelchair to help me whilst we are away and Timm, my mum and the kids are all going to help support me too.

incisional hernia with ostomy surgery staples

So the next couple of weeks is all about rest and healing.  I am doing nothing other than concentrating on my health and getting fit and ready for what I hope is the start of a new chapter in my life.  The past three years have been so difficult, with surgeries, anxiety, illness, fatigue and depression, but now I feel I am turning a new page (ALLLLLL the cliches are coming out now!) and with a surgery to fix all the hernias done, my ileostomy settling in and a new job, I hope life is going to be brighter.

 

Thank you all so much for all your love, support and care

 

You are awesome

 

Sam xx

Weight Loss – Operation No Operations – Week 1

So after my news last week that I now have two hernias, I decided to try and lose some weight.  I am adamant that I do not want surgery until it is absolutely necessary and so I spoke to my doctor about the benefits of me losing weight and we agreed that it would really help with the hernias.  Thus begins Operation No Operations!

I looked at groups such as Slimming World and Weight Watchers and though I know that they are great for some people, I thought they weren’t for me for a couple of reasons.  One is that I don’t want to go to classes and two is that my medical history scares the bejesus out of most people and I wasn’t sure as to whether they would understand.  On a side note, if you are interested in Slimming World, take a look at the very lovely Wit Wit Woo and her 5 month weight loss journey.

I bought myself a fitbit that tracks my steps, heart rate, sleep and through the app, I can log my food and track my calories.  I aim for 1400 calories a day, but I don’t freak out if I go over and I am doing 10,000 steps a day.  I am finding that the fitbit and app are keeping me on track, on days where I am well under on my steps, I am forcing myself to get out and get my steps up.  It is a huge boost to my will power to have a watch that is gently reminding me to get moving.  I even filmed one of my dog walks when I had to force myself to get out even though it was raining!

I haven’t been hungry this week at all, I am making sure I eat three meals a day and just avoiding snacks, though last night the desire for a Feast ice cream was just too strong and so I had one and enjoyed every bite! I have been really shocked at how many calories are in things, it has made me realise why I am overweight.  170 calories in a gin and tonic, yo!!!

I am also looking at my portion sizes and weighing out my food, I realised that my average bowl of cereal is twice the recommended portion size! I am finding that I appreciate my food a lot more and I am enjoying eating.  I have always had a thing about clearing my plate and so often would carry on eating even after I felt full just because there was food still on my plate.  Smaller portions mean I eat well and then if I am still hungry, I can always go back for a little more.

The thing that is important to me is not denying myself anything that I really want.  I was so limited with what i could eat when I had my jpouch that now I hate to be told I can’t eat something.  I am very lucky with my current ileostomy that there is nothing so far that I can’t eat.  I just chew everything well and drink plenty.  Even though I am limiting calories, I have found it quite simple to still eat filling and delicious food.

So how has it gone? Well here’s the numbers.

Starting weight – 16th May 2016 – 13 stone 13 lb

Week one – 23rd May 2016 – 13 stone 8 lb

fitbit weight loss blog

I lost 5 lb this week!!! I can’t believe it! I have eaten well and never once felt hungry, an example of my diet this week…

Breakfast – Granola with 0% fat natural yoghurt and sliced mango, strawberry and pineapple

Lunch – Salami, parma ham, mozzarella, feta, humous and fresh bread

Dinner – Baked potato and sausage casserole

Snack – satsuma

I am drinking plenty, either water or no added sugar squash, tea and coffee.  I do like fizzy pop and I am trying to reduce the amount I am drinking, but it is sugar free. (I know, I know, it’s still bad!!)

I don’t feel strong enough to exercise yet, my hernias scare me and so I am walking a lot, I am aiming for at least 10,000 steps a day and also doing some work in the allotment.  I am trying to be active every hour, which is something the fitbit encourages.  I am wearing support garments from Vanilla Blush or just a pair of strong support ‘fat’ pants, you know, that underwear that is supposed to suck you in?

sam cleasby blogger allotment operation no operations

So there we go, that was week one of weight loss.  I wasn’t sure whether to blog about this, I am not an advocate of dieting and think women are pushed into weight loss all the time.  I am a size 16-18 and classed as overweight, my BMI was 28.7 which is on the verge of obese (which I find ridiculous as I do not think I am obese!)  Despite what society tells me, I love my body, I don’t mind that I am bigger than some, I genuinely feel happy in my own skin.

But this weight loss is for my health and so I feel I must go ahead with it.  I am so terrified at the thought of more surgery that I really want to do everything I possibly can to have positive affects on my health.  I don’t think we all need to be the same size and shape but I do think we all need to be responsible for our own health and for me, right now, this means dropping a few pounds and putting less strain on my stomach and hernias.

 

For anyone thinking of losing weight, especially those of us with IBD or other medical needs, do speak to a health professional first and make sure the changes you make are healthy and positive.

 

Sam xx

 

When the struggle feels never ending

I visited my consultant yesterday (yes, on a Saturday because despite the reports, we DO have an NHS on the weekend!) I’ve been having stomach pains, feeling very tired and more worrying, some weird swellings in my stomach.  I knew what he was going to say, but it didn’t make it any less devastating when he told me I have two hernias. 

Fuck. Two?! 

I have a parastomal hernia, which means it sits right behind my stoma and an incisional hernia in my belly button.  I can’t actually explain just how upset I am.  I know some people may think that a hernia is a minor thing, but it affects you every day and limits what you can and can’t do.  But worse than that for me, is that they can only be fixed through surgery.  I just feel my struggle is never fucking ending. 

Just saying the word ‘surgery’ makes me anxious, I feel hot, my palms sweat and my mouth goes dry.  I feel like crying and running away.  The word takes me back to a dark place of hospital wards, pain, suffering and sadness.  I feel panicky and sick. 

Mr Brown saw my face and asked me what I’d like to do, he said surgery is the treatment for this and I just shook my head. “No. I can’t.  I’m not ready in my body or my mind to face surgery again.”  He smiled and agreed, saying he thought I was right and that we should wait as long as possible to operate. 

I asked about alternate ways to help during this time, I already wear support underwear (see Vanilla Blush for support underwear that doesn’t look like your nan bought it) and I try to not over exert my tummy muscles.  I have spoken to my stoma nurse about getting some other hernia support designed for people with an ostomy. 

The other thing is my weight. There’s too much of it. 

I asked Mr Brown if losing weight would help and he said yes.  It will help with the pressure on my stomach and when I do face surgery it will be better for me to be a bit lighter.  I’m a size 16-18, my BMI is 28, I am classed as overweight and plus size. I genuinely like how I look, I don’t diet because I don’t feel that I need to be thinner.  Now I am being told that losing weight would be really beneficial to my health and so it is time to shed a few pounds. 

I know this will be hard, I’ve been overweight since I started having babies but if this will hold off the surgery then it something I must do. 

Regarding the tummy pains and aches, I was told that I’ve had a lot of surgery, there are a lot of internal scars and unfortunately, it is just part of healing. I’ve had a lot taken away inside so I suppose things are moving around and settling which causes pain.  Regarding the tiredness I had bloods taken to test my vit b12 so Ill wait and see what they say about that. 

I’m trying to be positive and look for the ways I can help myself. But really I want to hide in a duvet and cry. I’m absolutely devastated. Have I not been through enough? Does the struggle never end? After each of the 4 surgeries I’ve had in the past 3 years, I think it will be my last, I think that this is the one that makes everything ok, but it never does. 

There’s always something else around the corner and I’m so tired of being unwell and broken.  When does it all end? When will I be ok? 

I don’t know the answer to this question but I do know that I have no other choice but to plod on and keep going.  I’ll recite my Yorkshire mantra that “it’ll be reight” and keep smiling. 

Sam X 

Harry the hernia

My hernia is getting worse by the day, it’s hard to know what to do for the best. It will be fixed in April during my pouch surgery but till then it’s getting increasingly difficult to deal with.

It’s a large hard swelling behind my stoma about the size of half a large grapefruit. There’s quite a lot of pressure behind it and as it sticks out I’ve actually knocked it a couple of times. Ouch.

20140317-221956.jpg

It’s quite hard to photograph myself but I tried so you can see what I’m talking about. This photo is looking down onto it, so you can see the left side of my tummy is flat whilst the hernia is pushing out from behind my bag. It makes the bags not work perfectly too.

20140317-222146.jpg

This is from the right side, you can see how far it’s sticking out.

There’s some information on parastomal surgery techniques here.

I believe that they will stitch the muscles and put a mesh into place that will stay in my body and reinforce the muscles where my stoma was. As I’m having the pouch surgery I will be having my stoma removed anyway.

Still no date on surgery, I think I won’t get a date till after my tests which I’m having on the 26th March.

Thanks for reading

Sam xxx

Parastomal Hernia

Over the past couple of months I developed some swelling behind my stoma, I thought it was due to the heat, the humidity and the amount of activity I was doing whilst we were  in Australia.  But since we got back, the swelling didn’t really go down.  It is worse in the evening and goes up and down, its causing me some discomfort but not really painful.

I spoke to my stoma nurse who thought it was a hernia, but as I was due to see my surgeon she suggested that I refrained from any lifting and saw what Mr Brown said.  He confirmed that he thought it was a hernia and that he could repair it surgically but as I am probably planning the pouch surgery it would be worth just trying to deal with it and wait till the takedown surgery when my stoma will be removed anyway.

A hernia is when there is a weakness in muscle tissue that causes the intestine to bulge through.  Because a stoma goes through the abdomen it becomes a compromise in the muscles and hernias can be common in people with a stoma.  A hernia behind the stoma is called a parastomal hernia.  The term parastomal hernia is used to describe a bulge or swelling around or under the stoma that leads to problems with stoma function and appliance security. This usually occurs gradually and the hernia may increase in size over time.

Its probably a good idea for you not to google this term though… Some of the photographs are fairly graphic!

There are many factors that contribute to the development of a parastomal hernia including:

  • Coughing and sneezing.
  • Straining: this can happen when lifting heavy objects or duringstrenuous activities such as gardening.
  • Infection at the site of the stoma or abdominal wound.
  • Muscles becoming weaker with age.
  • Being overweight.
  • Poor siting of the stoma.
  • Emergency surgery.

The treatment differs depending on the extent of the hernia, mine appears to be relatively minor and so Im happy to wear a hernia support made for people with stomas.

parastomal hernia support

Exercise or Pilates, aimed at strengthening the core muscles, may help too.

For others the treatment will be surgery;

A tissue repair at the site of the hernia is a relatively simple procedure, but there is a high risk of the hernia recurring.

Repair and re-siting of the stoma to another location on the abdomen is a bigger operation involving a larger incision, but the chance of the hernia recurring is lower.

Repair and reinforcement of the hernia site with mesh carries a very small risk of infection but the chance of the hernia recurring is lower.

This information comes from the Colostomy Association.

As always with this blog, I am not a medical professional and all my thoughts here are entirely my own and in no way replace medical advice.  If you are worried you might have a parastomal hernia, then get in touch with your stoma nurse, doctor or clinic.

Love Sam xx