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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