Tag Archive for: parastomal hernia

Ostomy bags with a Parastomal Hernia – Aura Profile review

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When I first had my surgery to remove my bowel and form my stoma, I had never even seen an ostomy bag before. The stoma nurse came to see me the night before and brought me a bag to see then after I woke up, I had the bag stuck to me. I went home with more of the same ileostomy bags and honestly I didn’t have a clue that there were any different types of bags. So when my body changed and I first had a parastomal hernia, I didn’t know I needed to get a different ostomy product.

Trying new ostomy products

And I think a lot of ostomates are the same, we stick to the bag we are given in hospital and don’t question or research whether there are other bags and products that would suit us better. Which is weird when you think about it, you wouldn’t just stick to the same hat for the rest of your life just because a shop assistant gave it you and told you it suits you. 

Stoma nurses do a cracking job, they can and do recommend lots of different products if you are having issues. But as with everything with living with a chronic illness, it is important to be your own advocate and do your own research. 

This is especially key if you have a change to your stoma or your body. If you gain or lose a lot of weight or if you develop a parastomal hernia. As you all may know, I have had a lot of hernias over the past seven years, including parastomal hernias. They effect every part of your life, especially the way your ostomy bag fits. I had loads of leaks due to my old bags fitting badly with the change of shape of my body.

woman with a parastomal hernia wearing an aura profile ileostomy bag

Free samples

Do some research and you can get free samples of most products, no one ever told me this! I decided to try the Aura Profile which available in a colostomy bag, ileostomy bag and urostomy bag. If you head over to their website, you can get a free sample here.

The Aura Profile moulds around the profile of your parastomal hernia. The flange is soft, and it inverts on itself. So, it shapes around your hernia and fits really snugly against your stoma. Parastomal hernias can get bigger and smaller throughout the day and totally change shape, this makes it super challenging to deal with and is why I have had so many leaks in the past. But the Aura Profile does a great job at adapting to your tummy size and shape. This also helps if you have dips, folds or scars on your skin around the stoma as the bag moulds to you.

I had quite sore skin around my stoma from the leaks and as we know, bags don’t like to stick to wet, sore skin. But within a week of using the Aura Profile, I noticed a huge improvement to my skin. If I’m honest, I hadn’t read this bit of the leaflet that came in the box (who does??) but I saw that it has Manuka honey in the flange that is really soothing and promotes healthy skin. Absolute bonus!

woman with a parastomal hernia wearing an aura profile ileostomy bag

Aura Profile

I didn’t get the belt to go with the bag and it is a different shaped hole fitting to the belt I already have and it didn’t fit. So I would recommend getting the belt to go with the Aura Profile. I don’t wear a belt all the time, but with having a parastomal hernia, it adds a bit of security that I like.

The flange was nice and sticky and because it is soft, I found it easy to press it down around my stoma to get a nice close seal. It has the measurements and cutting guides printed on the peel off back so was easy to cut to shape and there is a stoma size guide on the box itself too. 

I have one of those blow up hot tubs in the garden and I also do some wild swimming, so I have had chance to wear the Aura Profile in water and it was spot on. No lifting at the edges of the flange and definitely no leaks. When I went swimming, I found my tummy swelled up quite a bit and the bag definitely worked with that change in shape and still fit really well.

man and woman wild swimming

Parastomal hernia

If you have had a change to your body, or if you feel your bag isn’t fitting well right now, I would just remind you that there are so many products out there. You don’t have to struggle on and you shouldn’t. 

I really liked the Aura Profile and would recommend you give it a try, if it doesn’t work for you then don’t give up! Speak to your stoma nurse, chat with other ostomates, do a bit of research and find the best product for you. I would also say that our bodies and stomas can change and just because something didn’t work for you last year, don’t write it off forever. It is always worth trying again if your needs have altered.

It can feel really isolating to have a parastomal hernia. I felt a weird guilt, had I done something wrong? Did I not allow enough recovery time? Was I too impatient? I felt worried that this was my fault and so I didn’t like to talk about it. I know this is silly, that parastomal hernias just happen to some people. But knowing there were products designed just for this issue made me remember that I’m not alone in this.

Sam Cleasby ileostomy blogger review for aura profile

Watch the webinar

I hosted a webinar talking all things parastomal hernias last week. I don’t think parastomal hernias are discussed enough, it certainly wasn’t something I was told before I had surgery and it was a massive shock when I got my first hernia. I hope that events like this will not only inform and support but just rid the taboo and secrecy around hernias and help people to not feel quite so isolated. If you would like to watch a recording of the webinar and also a video from Pilates trainer Jo specifically for people with parastomal hernias, just click here.

I was asked to review the Aura Profile and so this is a sponsored post, but as always, I only give honest reviews and I only work with businesses that I believe in. This is why I don’t do many reviews as it is so important to me that I don’t promote anything that I wouldn’t happily use myself. For more information about the Aura Profile head to the Clinimed website.

You can follow Clinimed on social media on Facebook, Twitter and Instagram here:

Peace and love

Sam xx

Surgery and complications – the month from hell

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Hi guys, it’s been a tough month here in So Bad Ass land, but I eventually feel a little more human and I thought I would try and do a blog about the last surgery and all the complications. It has been the toughest time ever and at times I didn’t think I would make it, so I am glad to be here and will do my best to write about it.

Surgery was on the 11th February and it was a full abdominal reconstruction and moving my stoma. I had two parastomal hernias, my left side had a huge opening and my right side, the muscles had pretty much disappeared. It was going to be a big surgery going and I felt quite scared but I had lived in pain for months and needed an end to it. I just want to be able to live an active life.

Surgery went well! I awoke after a 6/7 hour operation in the High Dependancy Unit (HDU). They hadn’t been able to get an epidural into my back, I have had a lot of epidurals and it has felt more difficult to get in each time. The anaesthetists said I have a lot of scar tissue in my spine now. So I had two different types of painkiller going into drips, ketamine as a regular drip and then oxycontin (?) on a Patient-controlled analgesia (PCA) pump that I could press as often as I needed.

You shouldn’t film videos when high on ketamine!

I woke up feeling pretty great and even filmed a little video… unfortunately I have no memory of this at all and watching it back, it is clear that I am high as a kite!!

The first day or two, things seemed to be going well. My bowel hadn’t woken up yet but that is quite normal for me after surgery, it usually takes 2 or 3 days for it to wake up. This is called an ileus. Ileus is the medical term for this lack of movement somewhere in the intestines that leads to a buildup and potential blockage of food material. An ileus can lead to an intestinal obstruction. This means no food material, gas, or liquids can get through. It can occur as a side effect after surgery.

NG tubes

But then we got to day 3 and 4 and there were still no signs of the ileus coming to an end. And I started to feel really poorly. I couldn’t eat and even taking sips of water was making me vomit. A decision was made to put a Nasogastric tube (NG Tube) in. An NG tube is a flexible, lubricated tube inserted through your nose into your stomach to help remove excess gas from your stomach and intestines.

I haven’t had an NG tube before and it is pretty uncomfortable to get in place and then it isn’t pleasant to be in place. You can feel it in the back of your throat and it takes a while to get used to it. I am going to do another post just on NG tubes so I won’t go on about it now. But all I can say is though it isn’t pleasant, it gave me a lot of relief. It stopped the vomiting bile and took away the pain of my swollen, full of bile and gas tummy.

woman in hospital bed with an NG tube and bag of bile

I am struggling to even write about how hard it was in hospital, I have never felt so unwell, vulnerable and scared. For the first week, I refused to see anyone but Timm, my husband. I just felt so terrified and ill and with all the drugs, the ileus, the vomiting, the lack of eating and drinking and being stuck in hospital, my mental health was all over the place. I cried a lot, I just couldn’t cope and felt I was going to die. With so many tubes going into me, I could barely move off the bed and needed a lot of support to do anything.

TPN – Total Parenteral Nutrition

As we went into week two, my bowel still hadn’t woke up. I had gone 12 days without food and only on a drip. The decision was made to put me on Total parenteral nutrition (TPN). TPN is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. 

PICC line in the arm of a woman in hospital for TPN

This meant they had to put a peripherally inserted central catheter (PICC), also called a PICC line. It is a long, thin tube that’s inserted through a vein in your arm and passed through to the larger veins near your heart. They put the TPN through this line as I was becoming really malnourished after 12 days without eating.

I started to see some friends and family in hospital, but I was still incredibly weak. I just felt so tied down and not at all myself. With two cannulas, one in each arm, the NG tube in my nose as well as oxygen into my nose. A catheter in my bladder and the PICC line. I felt more plastic than human!

Stoma catheter

As there was no sign of my bowel waking up, they were concerned that there was a kink or a blockage in my new stoma and that I would have to have more surgery to fix this. But first they decided to try to pass a catheter into my stoma. They attempted this on the ward at first, the doctor inserting his finger into my stoma and then trying to pass the catheter. But it wasn’t possible. So I went down to theatre and they did it under sedation. The plan was to put it in with sedation, but if it didn’t work then they would put me straight under anaesthetic and perform a surgery to see what was going on. Luckliy the catheter went in and I am so grateful that I didn’t have to have any more surgery!!!

womans face with an NG tube and oxygen after bowel surgery

Thankfully a couple of days later, my bowel started to wake up and after 2 weeks, the tubes started to come out! It was such a relief and once the ileus stopped, I was allowed home and it was a huge relief. I was losing my mind in hospital, I was crying all the time and just felt as if I was going mad. I hadn’t seen outside the hospital in weeks, I was still on a lot of drugs and I just feel like the whole ward system in our hospitals are set up in a way that makes you feel like you are losing it! You lose who you are, you don’t see outside and it’s easy to not even know what day it is. Confusion is rife and it is so distressing. I will be doing a whole blog on this as I think its an important issue that is never discussed.

So I was allowed home, but I had to go back in the following morning for blood tests. I did this and they said that my kidney tests seemed wrong as they had gotten 5x worse overnight. They redid the bloods and told me I could go home.

Things went awry

Almost as soon as I got home things started to go wrong. My bag was filling almost like a tap had switched on. Going from nothing, no output for 2 weeks, it suddenly was like a waterfall. Bags weren’t staying on, I leaked constantly as it was like water. I then vomited almost 2 litres of bile. I went downhill very quickly, I was drinking rehydration drinks and squash, forcing down a mouthful every 10 minutes to ensure I was getting some fluids in. But as the night wore on, I could barely move. I was terrified, I had never felt so sick. I thought I was going to die. There was a point where I just wanted Timm to get me out of the house as I didn’t want to die in my bed and the kids be in the house.

Then the hospital called. They got my results back and they had got even worse, I had to be rushed straight back in. By this point, Timm said I was grey, I hadn’t pee’d in over 12 hours, I was just vomiting and water was flying out of my stoma. When I got there, everything got very busy! You know it’s not good when all the doctors are around your bed. They got one cannula straight in and starting pushing fluids through as fast as they could. But my veins were all flat and it took hours and 8 attempts to get the other cannula in to get more fluids in.

Acute Kidney Injury

I was told I had a stage 3 acute kidney injury (AKI), that when my bowel woke up, it just went into overdrive and between that and the vomiting, I was extremely dehydrated and my kidneys were starting to fail. The renal team were on hand advising my doctors and they did everything they could. I had ultrasounds, CT scans and X-rays and a constant flow of fluids going through as fast as possible.

I couldn’t move, I was so weak and I just laid there thinking I was going to die. It was so scary. The doctors and nurses were amazing and they were very calm. But they said my kidney results had been great before I left the hospital, they had come back 5 x worse and they assumed there had been a mix up at the labs as it wasn’t usual to see that level getting worse so quickly. But then the third lot had worsened by another 5 x which is why they got me back in so quickly. We realised that there are “extremely high mortality rates with AKI, more than 20% of patients with AKI will die during hospital admission, rising to >35% in those with AKI stage 3”. This was when we realised just how bad it had been.

Sam Cleasby IBD and stoma blogger in hospital weight loss after surgery

After 2 days on fluids and medication, I felt 100% better. I was lucky to have got back into hospital and got treatment so quickly. My kidney results started to go back to normal and these need to be kept a close eye on over the next few weeks. After a terrifying time, I eventually came home again and fingers crossed I won’t be going back!!

Home time and recovery

So I am now home. I have lost a lot of weight and so much muscle, my legs are really thin and weak. I have zero energy, I am still spending most of my time in bed. But I am starting to feel back to myself. I can see the light now after so many weeks of feeling like I have no control and that I was never going to get better. They say you have to take things one day at a time, but there were many many days where I had to take it an hour at a time. Or even minutes at a time.

I can’t thank my husband Timm enough. He was there every step of the way and I genuinely don’t think I would have got through without him. Every time I needed him, he was there. Timm spent hours and hours every day by my side in the hospital. He dealt with every bodily fluid imaginable! He held my hand and told me everything was going to be ok, even when he was scared, he has been everything.

Also I am so lucky to have a group of friends who have been supporting me and my family all the way through this. Looking after my kids and Timm as much as me. I can’t thank them all enough, our friends, our family, both those who are local and have cooked, visited, held my hand, bathed me, took the kids out and so much more. And those further afield who have been on the end of the phone with love and support and concern. It has been the worst time in my life but it made me realise how lucky I am to have so many amazing people in my life. Special thanks to Caroline, Wrighty, Hannah and Tania who have been simply wonderful. But also thanks to every person who has called, messaged, send cards and gifts, visited and cared for me and my family, you are all awesome.

On the mend

I am now home. I’m definitely on the mend now though I can’t believe how weak and tired I am. I have had so my surgeries and I thought my recovery would be the same as the others. So it has been a bit of a shock to have faced these complications. It is 4 weeks today since the surgery and usually by this point I am feeling much better. I am actually a few weeks behind. I was in hospital for 3 weeks and though it is great to be home, I still have to remind myself that it is ok to take my time and I have to be patient.

It has been really hard to write this post, mainly because so much of the past month feels like a bit of a dream. It is weird to see photos and videos of myself where I don’t recognise myself. I can’t remember a lot. And some of it has been so distressing and upsetting that I can’t bear to think about it too much. It has felt like a real trauma and I think it will take time for me to come to terms with it all.

Thank you to everyone who reads my blog and follows me on social media for the lovely messages of support over the past few weeks. I haven’t had the energy to reply to everyone but I have read every one and they mean the world.

Thank you for your kindness. I will try and do a few more blogs about the specific bits I want to chat about soon. Till then, I am home and recovering slowly with the love and support of my family and friends.

Peace and love

Sam xx

Smoking and Hernias – do you know the connection?

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I know this isn’t a popular thing to say, but I do love smoking. I know how bad it is, I know it’s stinks and is dangerous, expensive, stupid etc etc etc. But I love a good old ciggie! I have smoked since I was about 14. I’ve stopped several times, didn’t touch them whilst pregnant, breastfeeding and after surgeries. But every time I go back to it because I thoroughly enjoy smoking. But learning about the connection between smoking and hernias has shocked me into giving up the fags.

I saw my new surgeon Mr Adam in February. He told me I have a very high risk of complications during the surgery, around 75%! Mr Adam said I could drop that risk by 10% if I stopped smoking, even just changing to the e-cigarettes. Also he told me that there is a very real link between smoking and recurrent hernias. I was devastated to find this out.

On the 6th of February I had my last ever cigarette! I bought an e-cig and that was really useful to get me through the cravings of nicotine. Then I stopped using that in April and now I am officially a non-smoker.

Missing the smoke

I have to say that it’s still not easy. It’s been four months since I had a cigarette and 6 weeks since I used the e-cigarette. I still think about it all the time. I would say around twice a day I really crave a cigarette. If it weren’t for what I have learnt about the connection between smoking and hernias I would have started again.

Sam Cleasby ostomy bag stopping smoking hernia

Smoking and hernias

So smoking and hernias, what is the connection? After getting numerous hernias over the past five years since I started on this surgery journey for the Ulcerative Colitis and having multiple hernia surgeries I am so disappointed that the link between smoking and getting an hernia has never been pointed out.

Smokers develop hernias at a higher rate than nonsmokers. Smoking causes a decreased rate of collagen formation. This is due to the effect of nicotine, which weakens the abdominal wall. Patients who smoke are four times more likely to develop a recurrent hernia as a result of the effect smoking has on wound healing. This information comes from the Hernia Centre.

Cigerette smoking and risk of hernias

I think this is something that should be told to every single smoker who has abdominal surgery. Getting my stoma and ridding myself of the effects of Ulcerative Colitis saved my life. It made it so much better. But then having 6 hernias over the past five and a half years has ruined it all. The hernias have stopped me from doing so much, I’ve had repair after repair. Months of pain, so many tears and honestly, I feel devastated. I could have been doing something that has caused the recurrent hernias.

The cost to the NHS

It’s not even just the personal effects, I have had multiple surgeries to repair these hernias. The past two surgeries have been high risk, long, complicated surgeries. I’ve spent time on the HDU and weeks in hospital. How much does that all cost?

I have had to have so much time off work, my kids have suffered. My whole family has had to struggle through having a mum who is in constant pain and then having operations and then months of recovery. And maybe, just maybe, I wouldn’t have got these hernias if I had stopped smoking earlier. And I would have done, if I had been told.

I accept my own responsibility in this. Of course I knew smoking was bad for me. But it was in that general way that we all do things that aren’t good for us. Some smoke, some drink alcohol, take recreational drugs, eat too much red meat and sugar etc. If I had been told that skoming has a direct link to the recurrent hernias that have ruined the past five years of my life, I would have stopped.

I am not preaching, I’m not trying to tell anyone what they should do, but I wish someone had told me about this after my first surgery in 2013. So I just want to pass the favour on so everyone has the information and can then make their own educated decisions.

Sam x

Surgery number 8

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On 30th April, I went into hospital for my eighth surgery related to IBD. It was a big operation to repair a parastomal hernia and an incisional hernia. Also to resite my stoma and to deal with all the adhesions in my abdomen.

I was terrified about it, believe me, it doesn’t get any easier with experience of surgery. If anything it is more scary to know what’s coming.

We headed in for 7am and checked in, after waiting for a couple of hours I had bloods checked. Then I met with the stoma nurse to mark me up for the new stoma. Next was meeting the anaesthetist and registrar and going through the consent forms. Finally it was time to go down to theatre.

I spoke at length to the anaesthetist about my fears about pain relief post op due to past experiences. She was wonderful and put me at ease. We went through her plan to leave me on epidural for longer and what would be put in place after that. It really helped to calm my nerves.

Sam Cleasby in Sheffield Northern General Hospital ready for parastomal hernia and bowel surgery

The surgery

Timm walked with me to the theatre doors, kissed me goodbye and left. I was so wary and fearful, I honestly thought this could be the one where my luck ran out. I told him I’d written a letter just in case I didn’t make it, that I loved him and to tell my babies how much I adored them.

Into the theatre, they set up my epidural (in on one attempt thank god! Last time it took 5 or 6 goes!) and off I went to the land of nod.

The surgery took almost 5 hours, the adhesions were terrible. It took a lot of time to pick everything apart. They repaired both hernias and moved my stoma back to my right side. Then put a lot of biological mesh into my abdomen to try and strengthen it all in place.

I woke up and felt very hot and sick, I vomited a few times and was quite out of it. Then I was taken to the High Dependency Unit (HDU). I was very dehydrated. They said they had to push 7 litres of fluids through me during the surgery and that my lactate levels weren’t right. They called Timm who came over and was with me though if I’m honest I don’t really remember too much.

In HDU you’re in a room alone and have a one to one nurse. There were tubes and wires everywhere and lots of machines, it was quite frightening! I had two cannulas in my hand and an arterial line, heart lines stuck all over my chest and back. Plus oxygen mask, drains in my tummy, the epidural and a catheter in my bladder. I could barely move for tubes and wires!

Arterial line in hand after surgery parastomal hernia

Everything went a bit wonky!

Throughout the night I was pretty out of it. But the HDU nurses were amazing and looked after me so well. I had a few tears through the night just from fear and feeling overwhelmed but got a couple of hours sleep and when I woke at 7am I actually felt ok! They got me out of bed and into a large chair a bit like a lazy boy. Timm came in first thing in the morning.

Then everything went a bit haywire. And I don’t remember a lot apart from being so scared.

I started shaking a lot, my muscles all cramping and my chest hurt and I felt like I couldn’t breathe. My mind was spinning out. I felt like everyone was against me and they were going to make me have another operation. Feeling frightened but totally out of it, not knowing what was real and what I was imagining.

At first I thought I was having panic attacks but I couldn’t gather my thoughts to figure anything out. I was wild and not myself.

The staff were so kind, patient and supportive though and Timm was there every second. He started panic googling and realised all my symptoms were potential side effects from Fentanyl which was in my epidural. He asked the nurses about this, they agreed I was probably reacting badly to this and they changed the epidural.

Sheffield Northern General hospital high dependency unit after surgery

Reactions

Once it was taken down I was still reacting badly but they said it takes hours to go out of your system. During this time I used meditation, mindfulness and visualisation to calm myself and get on top of it. I haven’t quite processed it all. One visualisation in particular had a profound effect on me that was physical as well as mental. But I’ll write about this in another post.

All the terrifying symptoms slowly stopped and I could get a hold of myself. All day had been so scary, I was just losing my mind and it was terrifying. I can’t thank Timm enough for being there every second even though he was as scared as I was! He was calm, loving, patient and thought outside the box. Playing gong sounds to help meditate, going through mindful body scans or just holding my hand and repeating positive mantras. I can’t recommend getting in touch with your mind body connection enough. It’s not airy fairy or hippyish, the science behind it is real and fascinating. Again, I’ll do another blog post about that.

Onto the ward after surgery

The following day I went onto a normal ward and the anaesthetist visited every day along with the pain team. They followed through with their plans keeping me comfortable at all times. I’ve had poor experiences of pain relief on the wards post surgery. All I can say is that being vocal and firm in my needs paid off. It’s certainly not about being rude. But you need to be a responsible participant in your health and recovery. Making your needs clear and insisting on proper care is vital to receive the best support.

In the past I wanted to be a “good patient” and not bother the nurses. I didn’t want to be demanding or complain but it meant I wasn’t giving them the opportunity to understand my needs. It’s so important to speak up and explain your needs, and if they aren’t being met, ask for explanations why.

You deserve proper care and if you are left in pain or your treatment isn’t being delivered then your recovery will be longer. You’re more likely to experience complications and it can have such a negative affect on your mental health.

Coming home early

After 6 days, I was off the epidural, my surgery drains and catheter were removed, stoma working and off all meds apart from pain relief and so they asked if I’d like to go home. I jumped at the chance! I hate being in hospital and I know I recover better in my own bed.

Coming home after surgery Sam Cleasby Sheffield hospitals

It’s been a tough week at home. Helped along by lots of pain killers and the love of Timm, the kids and the doggies. I’m so glad to be here. I’m still very emotional and tearful. It’s only been the past few days where I have felt more like myself and up to visitors. The new stoma is working well. My old stoma site is still open and being packed daily to heal from the inside out. And my 48(!) staples have been removed!

Thank you

We have been overwhelmed by the lovely messages of support. Though I haven’t replied to every one, I have read them all and thank you so much!

A huge thank you too to our amazing friends who have been so lovely. Cooking for us, helping out and just being there for all of us. And thank you to my aunty Jenni for the most amazing hamper!

It’s been tough as we havent got a lot of family support. My sister lives in Australia and though she is always there to chat, especially through the night when everyone here is asleep, she’s not here to hug or to visit. Timm’s sister and dad live in Lanzarote. But family doesn’t mean blood. Family are those who are there for you and love you and so in that case, we are very lucky.

My recovery is going well but I’m still very very tired. I’ve been told to try and walk a little every day. Yesterday we went to the shops for an hour, I then slept all afternoon! We also had a trip out at the weekend to collect our new campervan so I’m very excited for that!

As I said, I’m still quite fragile emotionally, very tearful and very tired. I’m really pleased with my progress but I still have a long way to go.

I just hope and pray that this will be the last ever surgery as I really don’t think I can go through this ever again!

✌?& ❤️

Sam xx

I got my date for surgery

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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.

Planning

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!

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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. Then they 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. It is an assessment to check 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.

My worries

Unfortunately twice now I have been left in agony due to the ward nurses not giving me appropriate drugs on time. 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.

Mind/Body connection

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.

Feeling scared

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

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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

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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

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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

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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