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Debbie Downer

Things aren’t brilliant at the minute.  I’m still really struggling with fatigue, I am so exhausted all the time, and this brings my mood crashing down, I feel sad, guilty and useless.  I am still waiting for a date for my hernia operation, the hernia isn’t too big but it aches constantly and I have to wear a big support belt to hold it in if I exert myself.  My anxiety levels are sky high when I think about going under the knife yet again.  We are dealing with some really stressful parenting problems that are filling my head with stress and making me feel quite isolated.

And then two days ago, whilst washing the pots, I cut the back of my hand on a glass quite badly.  After a four hour wait in A&E with the skin flapping off my hand, doctors glued it up and strapped up my hand.  They said I was very lucky and only just missed the tendons, as they lifted the flap of skin, you could see all the tendons and muscle moving and the bone of my knuckle!

bandage hand

It’s all strapped up now, but is very, very painful, my hand is swollen and I can’t move the first finger at all meaning I am pretty one handed at the minute.  I can’t believe how difficult life is with one hand!

And this may sound pathetic, but it has been the straw that broke the camels back.  I am done in.  I felt useless enough with the hernia and fatigue, I am doubting myself as a good parent and life is kind of crap,  but now not being able to use my right hand has floored me.  I know it will heal quickly and within a week or so I am sure I will be fine, but I am gutted how little I can do for myself.

Even typing this is a nightmare, I am one fingered left hand typing and so I will keep the post brief as it is taking so long.

I’m afraid I have little to be positive about today.  Life is pretty sucky and though Im sure there is a silver lining somewhere, I can’t find it right now.

The only positive is that I deal with everything with the awesome and unfaltering support of my husband, and though things aren’t great, at least we are together.

I will try and be back soon with a more shiny, happy outlook!

Sam x

Harry is back… Hernias and J pouch

So do you remember that when I had my stoma I also had a parastomal hernia that I named Harry?  Well, Harry is a tenacious little sod and even though I my surgeons fixed my hernia during my Jpouch Surgery he is BACK… And so I am gutted to say that my resolution to have no surgery in 2015 is shot and it is only January!

I will be having surgery on my hernia (hopefully) in the next 6 weeks.  It is only a small operation and I will only be in overnight but I have to say I feel quite anxious and unhappy about it.  I was desperately hoping that my jpouch surgery last May would be the last hospital admission and the thought of going back in is really upsetting.  I know it is only a little op and it is done routinely every day but just as I am starting to get my life back and things are getting easier, it feels like a massive setback to have to have something else done.

shadows of a couple peace sign

I have an incisional hernia now, that is a hernia where the weakness comes from a  previously made incision in the abdominal wall, ie the scar left from a previous surgical operation.  It is surprisingly common at 12-15% of operations will lead to a hernia.  I had no idea it was so common!  There is no other treatment apart from surgery and unfortunately the success rate for repairing them is quite poor with a high incidence of complications and failure.  That’s a bit depressing!

I have my pre op assessment on the 16th February and the doctors said at my appointment they were hoping surgery would be in the next 6 weeks and so I am hoping to be sorted by the end of Feb/beginning of March but we shall see.

An odd coincidence is that my mate who was in at the same time as me for the jpouch surgery in May also will be having another surgery in the next few weeks so we are hoping to be hospital twins again.

I am trying to stay upbeat and remember that in the grand scheme of things and all the surgery I have had so far, this is nothing, it’s just a little thing I need to get sorted.  But I am really upset and stressed.  Everytime I have a set back, it just reminds me of my fragility and I HATE that.  I hate the constant reminders that I am not ‘normal’, that I can’t do everything other people can do.

But I will use that feeling to push me forward and to keep going, keep helping others, keep proving people wrong and keep being so bad ass…

 

Love Sam xx

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.

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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.

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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

When things aren't going so well

It’s hard to be positive all the time, in fact it’s damn near impossible. The last couple of weeks have had ups and downs and I’m feeling the strain.

I blogged about Fridays events, Saturday we had friends over for dinner and had a brilliant night, it felt great to have a relaxed, fun dinner party with some wonderful mates. Overnight on Saturday I struggled to sleep,  having aches and cramps and just not feeling too good, Sunday was a chill out day but in the evening I was making dinner with Timm when the hernia struck again.

I went straight to bed and laid down, took my bag off and saw this big hard lump in my stomach right behind my stoma.  It was my insides coming through the hole in my muscles and it was fucking agony.  It was the same pain as Friday night so though it was extremely painful, it was slightly less scary as I knew what was happening.

chronic illness quotes

It felt like labour pains, a huge pressure in my abdomen and an unrelenting pain.  I was crying and panting and just couldn’t catch my breath, after an hour of this I asked Timm to call the hospital but with it being a Sunday night, my usually contacts of the stoma nurse, or stoma team at the hospital were unavailable.  In the end he called NHS Direct who seemed not to really understand the situation (they kept asking if I were opening my bowels and Timm kept explaining about the ileostomy).  Eventually after drinking peppermint tea, laying flat and having a heat compress on my stomach, I managed to massage and maneuver my intestine back through the muscle wall and the pain stopped.

I have seen my stoma nurse since who confirms that it is a hernia, and that the lumps and pain is due to my intestine squeezing through the hole in my muscles and getting kinked and stuck.  She says that hernias happen in around 40% of people with an ileostomy and that now the weakness is here, it won’t go away on its own and will just keep getting worse.

I have been in touch with my consultant who sees no point in performing a hernia repair operation as I am planning to have the pouch surgery this year anyway.  Originally I had asked if this could be performed in late September to fit around a crazy busy summer with work and our wedding vow renewal on September 6th.  This probably isn’t going to happen now, Mr Brown wants to bring the surgery right forward and I am seeing him this Friday to discuss.

The other thing I am struggling with at the moment is insomnia and tiredness.  Im struggling to fall to sleep and some nights Im up till 4 or 5am and then I feel exhausted all day.

I feel like I have taken a big step backwards in my recovery at the minute.  Everything seemed to be going so well, I recovered brilliantly and traveling in December and January was amazing, yet now six months down the line problems are sneaking up on me.

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Im not great at the minute emotionally or mentally.  I have been so busy with the talk at IWD and work as well as moving house this week that Im running on adrenaline I think, but in those quiet times at home I am feeling quite down.  I feel disappointed that I am struggling, Im a little angry that I have this hernia and I feel quite guilty that I have slipped back down the road of recovery and Im back to having to rest a lot and leave Timm to much of the things that need doing.

My sleep patterns are a problem, I just can’t fall asleep but then in the morning I am so exhausted that I can’t wake up, this teamed with the hernia means that Timm is doing 90% of the school runs, Im missing out on our family swim each week and I don’t feel confident enough to exercise, go to the gym or go out walking which isn’t helping my mood.

Im really anxious about bring surgery date forward, I have made the decision that I am going for the pouch surgery but thought I had six months to prepare myself physically and mentally for it.  Im stressed that bringing the date forward is going to make things really difficult for work and worried that I won’t be well enough to enjoy our second wedding.

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But I do know that it is a particularly stressful time in my life.  This year I am moving house, getting married, running one business whilst working for another AND trying to build a brand for this blog and myself.  All this on top of not being in great physical shape and facing more major surgery.  Oh and raising three kids and running a house…

So I suppose it is normal that Im feeling weepy, stressed and frustrated.  It would probably be weird if I wasn’t worrying about the ton of things going on in my life.  Im trying to keep things in perspective though, accepting my feelings rather than swallowing them down.  Talking about the stresses Im feeling rather than pretending everything is ok.

Ill update more at the weekend when I have seen my consultant and know what the next step is.

Thanks for reading

Love Sam x

Woah! Eventful Friday night!

It’s all gone a bit dramatic here tonight, it started with a total bag blow out.

One minute I was cooking dinner with Timm, the next I heard a popping noise and felt a huge whoosh as the contents of my bag spectacularly emptied out down my legs and into the kitchen floor.

With an ‘oh shit’ from me, the husband realised what was happening and we both leapt into action. Well for me it was more of a legs together weird shuffle to the bathroom whilst Timm followed with my supplies and then he went to clean up the poonami in the kitchen.

I’m a lucky woman to have such an awesome husband to look after me. If I’m honest, I bloody hate that he has to deal with my shit (literally) I find it embarrassing and upsetting. But he deals with it all in a way that makes life so much easier and I find it easier to allow him to help me because he’s just so cool about it all.

sam cleasby blogger writer stoma ibd

After Id showered and sorted out a new bag I rejoined Timm and we finished making dinner and all was well in the world…

Then after dinner we headed out to the supermarket, we’re trying out meal planning and so we wanted to shop together to get next weeks groceries. As I got in the car I started to have stomach ache, by the time we got to Morrisons I was in quite a lot of pain. It kind of felt like trapped wind so I tried to ignore it.

Then it got worse, I went to the loos and I thought I was going to pass out from the pain. It felt like my stomach was bursting open, I’ve not hurt that bad since I was in labour. I came out and was sweating, pale and thought I would faint from the pain.

A lady sat me on a bench and I called Timm who was walking round with the trolley to tell him I needed to go home.

He practically carried me to the car and drove me home whilst I was grunting, shouting and swearing. I honestly thought something had burst inside me. It was agony.

I got home and laid in bed and removed my bag. My stomach was really swollen and my hernia really pronounced. My stoma was large and dark coloured. I was crying in pain as Timm got me painkillers, I really thought I needed to go straight to hospital.

As I laid flat my stomach started to relax and then I felt a weird feeling and my hernia seemed to shrink back into my stomach. And the pain just went.

It was the weirdest thing, one moment I was rolling round in agony, the next I just had a slight ache.

We’re thinking it must be the hernia?! That it came out a lot and then as I relaxed and laid flat, it sank back in. Who knows?! I haven’t eaten anything different today than I’ve had before. I haven’t drank quite as much as usual but just got no idea.

I felt quite embarrassed at the drama I caused and how much grunting and swearing I did!!! I’ve had painkillers and going to stay in bed now and relax.

parastomal hernia recovering from ileostomy surgery and hernia

Excuse the mess in my room! We are moving house in a couple of weeks and there are boxes everywhere!!!

I’ll speak to clinic/stoma nurse as soon as possible to see what they think it was. If any ostomates have any ideas I’d love to hear them! Perhaps I’m doing too much, I’m packing and cleaning our current home. I have no idea, I’m just glad I don’t feel like an alien is bursting through my stomach any more!!!

Thank you Timm for dealing with all my stoma dramas tonight, you are my hero and I couldn’t deal with all this without you.

exceptionallyawesomehusbandsobadass

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