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Pouch surgery and feeling scared

My pouch surgery is booked in for the 14th May and so I thought Id do a post about what it is and how Im feeling about it.

I know that the pouch surgery is definitely something that I want to at least try, its a big surgery especially as Im having it in one step but it is something that I think is worth me going for.  The alternative is to have a permanent ileostomy which still means having another operation to remove my rectum and sew up my butt…

There can be complications with the surgery with leaks, fistulas and pouchitis (an infection in the pouch), there can be problems with incontinence and the recovery is a long process.  But the positives will be that I no longer have a stoma and no longer will need to wear an ileostomy bag.  I will go to the toilet as ‘normal’ and my hernia will be fixed.

I feel informed and happy with my decision but I am still so frightened.

Its a long surgery and I am scared I just won’t wake up.  I know how silly this is, the doctors and anaesthetists are professional and caring and will do everything they can to look after me, but I can’t shake this worry that there will be problems and I just won’t wake up.  Maybe its because this surgery is planned whereas the last one was an emergency and so I have an option to not go for this.  Or maybe its just that the last year has made me think about my own mortality.

So let me explain a little about the surgery, in my last operation they removed my large intestine and made my stoma from the end of my small intestine.

normal digestive system  ileostomy

 

So the first image here is a normal digestive system, the second is how I am and shows a digestive system without the colon (or large intestine) with an ileostomy.

During the pouch surgery, doctors will remove my ileostomy and form a pouch out of the end part of my small intestine.

pouch surgery ulcerative colitis

 

This image show the pouch formed from the small intestine and that it is then connected to the rectum and anus muscles so food has a clear path from mouth to bum!

Most times this surgery is done in two parts, the pouch is formed and connected but a loop of small intestine is brought out of the stomach to make another stoma which diverts food from the pouch and bum whilst everything heals.  Then 2-3 months later the loop is repaired and everything is connected.

I am having the surgery in one go, so they are forming the pouch and connecting everything straight away, I will be unable to eat food for around 10 days to give the pouch chance to heal and then will have to be very careful for a few months with what I eat and drink.

There are more risks in doing it this way, the main risk being that the pouch doesn’t hold and will leak.  A leak can be dangerous and would require more surgery and a longer hospital stay.  But my surgeon is confident that I am strong enough to deal with the surgery and that it is the best choice for me.

Recovery wise, there is a high chance of incontinence right after the op, it will be quite painful as its open surgery so I have the wounds inside and out to deal with, they are good at dealing with pain relief though and so Ill be on morphine and an epidural for a while.  It has been 8 months since I have used the muscles in my butt and so it takes a good while to re learn how to use them again, I also have to learn how to go to the toilet all over again.  The pouch is using parts of the body that were never meant to do this new job and so it is a long and difficult journey to be back to ‘normal’.

The worst case scenario (apart from, you know, death) is that the pouch doesn’t work and there are problems, if this was the case it is still possible to go back to having another ileostomy.  This isn’t ideal but it is good to know that its something I can go back to and I could deal with that.

I am NERVOUS! Im scared of the pain, Im scared of going back to running to the loo again, Im scared that the pouch recovery will be like having colitis again and having to stay close to the toilet at all times.

I am really sad at the thought of going back to feeling so weak, poorly and being unable to do things for myself.  The last surgery was a good 6 weeks of bed rest, feeling so exhausted and allowing my body to heal.  This surgery will be even longer and that worries me.

BUT I am confident its the right move and so in two weeks time I will be officially no longer an ostomate and will be a pouchee!

Wish me luck, I will be updating the blog as much as I can running up to the op and will ask Timm to update once I have had the surgery.

 

Love Sam xxx

Time away in Spain

Last week I had some time away in Spain, the stress of dealing with my stoma, the hernia and the upcoming surgery was just getting too much.  I am a positive person but it was all getting me down, I was really weepy and just felt so down and sad.  After hearing that my surgery was being postponed yet again I just had a bit of a breakdown, I felt so out of control and things just seemed too hard.

So my lovely husband suggested I have some time away, I looked at flights and then spoke to my wonderful Aunty and Uncle who live in Spain who very ,very kindly said I could spend a week with them.

I put aside the guilt that all mums feel as I was leaving my kids for a week, but I knew they were home safe and happy with their dad and so I packed a bag and headed off for a week in the sun.

traveling with a stoma

 

 

My cousins were over with some of their friends visiting their mum and dad and so I had a lovely family break and really felt looked after.  It was so nice to not have to look after other people for a week and to just have time looking after myself.  I had such a fantastic, relaxing time.

I had a few times where I was really uncomfortable with my hernia but the joy of being away with no kids was that I could go and lie down and rest with no guilt at all!  I also had a few stomach pains and a little dehydration but nothing that rest, plenty of fluids, a few painkillers and diarolyte couldn’t help.

I have come home with a new sense of positivity, feeling so much better and ready to face the next few tough months.  My stress levels have dropped and I just feel stronger mentally and though Im still frightened about the surgery and recovery, a week away from real life has made everything seem a little easier.

Here are a few photos from my week away.

traveling with a stoma 10153052_10152432464006584_711024400259834287_n 10151797_10152432464166584_4965964124488758390_n 10153269_10152430018456584_8273828626433436007_n 10167986_10152434677386584_2873302691581239351_n 10167915_10152430018256584_5997160394224027386_n 10246725_10152436098836584_878387804895884571_n 10302058_10152432464326584_2410694398069155137_n 10308177_10152430019956584_2489972353831809710_n

 

 

So this explains my absence for the last week, thanks so much for all your kind messages and emails.

 

Love Sam xxx

 

The Unknown

They found this thing.  They called it a shadow and then slipped the word ‘mass’ into the conversation later.  I wasn’t expecting it, I had nervously laughed and chatted through the first part of the test and then the woman, the doctor, testing person, her, she went quiet.  She asked me to hold still and stopped talking about her daughter’s shop that she thought Id love.  She stopped making that casual conversation that makes the fact she is looking up my arse slightly less embarrassing.

There is this ‘thing’ in my rectal tissue.  I don’t know what it is.  She mentioned it could be an abscess but said I needed to talk to my consultant.  The mood changed really rapidly and I was so surprised that I just gathered my things and left.  I didn’t ask any questions or query what she was saying.  I didn’t do any of the sensible things, I just felt really hot and the word ‘cancer’ was all over me.  I could hear it whispering in my ear, feel it nudging me like I was walking through a bustling crowd of it.

She didn’t say cancer.  She never said the word.  I keep thinking Im imagining the whole thing.  She said she couldn’t say anything more and the consultant would look over the results as soon as possible and come back to me.

The logical part of my head is saying in a matronly manner ‘This, Samantha, is you over thinking it all.  It will most likely be an abscess or something easily treatable.  No one has suggested cancer.  Wind your neck in and stop being dramatic.”

I left the hospital and drove aimlessly, I ended up in a carpark at a shopping centre, driving round to find a parking space, only once I found one I realised I didn’t need to go shopping.  I drove to the old house where Timm was working and he chatted away.  He stopped and looked at me and said “Everything OK?” “Yeah!” I replied.

Then “No bubs, they found something”

His face fell.  I explained and he held me tight.  Said it would all be fine and we needed to not get ahead of ourselves.  I could feel his fear in his pounding chest, it was banging against mine giving away his anxiety whilst his face and words were soothing and calm.

I did a bad thing.  I took a photo of the screen when she left the room for me to get changed.  She had even asked me not to when I had asked if I could – “The consultant needs to see this first” she gently explained.  Then I did a lot of bad things.  I googled and googled and googled.  I dismissed the need for years of medical training and diagnosed myself online.

I know this is bad. It is ridiculous and if I were hearing this from another person I would tell them to STOP FUCKING GOOGLING.

You know the funny thing is, that the ultrasound of a rectum is surprisingly beautiful.  It looks like a lunar eclipse surrounded by galaxies.  It looks like a black and white Van Gogh sun.  It looks a lot nicer than you would imagine…

Today I am losing my mind thinking about what it could be, and so I called my consultants secretary only to be told that he is away till Monday and that the results would take a day or two to get to him anyway.  She put me through to the clinic where Id had the test but they said the woman is also away till Monday.  I imagine them both together, sunning themselves on a Caribbean island drinking cocktails with their heads thrown back laughing.

And so it is a waiting game for this unknown.  I am telling myself over and over again that it all will be fine, that the chances are that it is an abscess or something that can be dealt with easily.  Im pushing the word cancer out of the front of my mind, cramming it into a dusty trunk hiding at the back of my skull that contains the clowns and frogs.

I am on the verge of tears.  Im so frightened.  I keep thinking ‘Are you fucking kidding me? Have I not dealt with enough?’ It is so easy to wind yourself into a state of panic, but the words I use to comfort me are becoming a mantra, when I feel the panic rising and beginning to swallow me I repeat “It will be fine” over and over again.

Perhaps it really is nothing, perhaps they will look at it and shrug, something totally treatable and all A-OK.  I feel that these bad thoughts of something sinister is just fanning the flames of drama, I need to stop that right now and not let my brain go into over drive.  Because at this minute, everything is ok, no one is suggesting the things that are flooding through my brain, only me.

And so I will wait till Monday and speak to my consultant then.  Until then I just have to try and keep that trunk locked up tight and not let my imagination run wild.

 

Sam xx

UPDATE – my lovely consultant dropped me an email to say that it’s “Highly unlikely to be anything but need to see scans” and to try not to worry. I’ll update again when I hear more news xxxx