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Feeling emotional – Stoma and Ileostomy worries

I am still recovering well, physically my strength is returning though I still feel very tired.  Im able to do more now, cooking and cleaning and have developed a terrible nesting instinct!  Honestly its like I am 9 months pregnant, I have an urge to rearrange all the rooms, organise and declutter the world!  This means my house is now worse than it was before as there are piles and stacks of ‘stuff’ everywhere!

I think now that I am recovering physically that my mind is working overtime and mentally I am struggling.  Im over thinking things and at times just feeling really sad.  Im sad that my life revolves  around this bag.  I spend so many hours a day in cleaning, emptying, changing, washing, worrying… I have never been the sort of person who spends hours getting ready so it feels odd to spend so much time on myself.

I spoke to a friend yesterday about the blog and how so many people had told me that it was helping them, and I was worried about posting about the bad days as I wanted it to be about positivity.  She told me that she didn’t think my blog was about positivity, it was about honesty.  And being honest is talking about the downs as well as the ups.  She also reminded me that a blog that was always hyper happy comes across as smug!! So I thought Id write a bit today about how Im feeling.

My sleeping patterns are still all over the place, some nights I sleep well, others the insomnia kicks in and I just can’t sleep at all.  Im also getting up once or twice in the night to empty my bag.  A friend told me that our minds get into habits and it will take time to break those habits.  From June till the end of September I was on Prednisolone and the meds made me be unable to sleep and so for all that time I was taking sleeping tablets.  So I know that its going to take time for my mind and body to readjust to sleeping without any drugs in my system.

But in the middle of the night, when everyone else is sleeping and the house is silent, I sit and overthink… These thoughts tend not to be positive ones.  I feel sorry for myself, a big pity party in my honour.  I sat the other night at 4am weeping at the loss of my ‘normal’ life.  Mourning the loss of a life that didn’t involve wearing an ileostomy bag and having to (literally) deal with shit every day.  I sat there wishing I could rewind time and go back to before my operation.  I cried about how my body looks and feels, that Im weak and tired and that I have the scar and this stoma, this weird looking thing on my stomach that spews waste and I have no control over it.  I feel sad that feeling unattractive affects how I feel around my husband.  I feel devastated that my kids still avoid cuddling me as they don’t like the stoma and are worried about hurting me.  I feel scared that the course of my life has changed so drastically and that it won’t ever be the same again.

When the sun comes up it also lightens my worries, its a lot easier to be upbeat during the day.  I talk to Timm a lot and to my friend Caroline, I know I can talk to them openly and honestly and I know that talking helps.  The old saying of a problem shared is a problem halved is so true.  Im not asking for an answer or a solution to the problems, but saying them out loud makes me feel that I can overcome them and that I have support.

At times when Im not feeling down I can look at things logically, I know that when I want to rewind my life or want my ‘normal’ life back, that actually before the op I was ill.  I was so sick, my bowel was ruling my life.  I was going to the toilet 10-15 times a day and bleeding constantly.  I was one the highest doses of meds and wasn’t responding at all.  If I hadn’t had the surgery I believe I would still be in hospital, I would have had to go onto drugs like Infliximab that carry such awful side effects.

I know that this surgery and my annoying little stoma has saved my life, though it is difficult, it has set me on a road to recovery, a road to a new life without pain, without bleeding and without medication.  Though I still feel that I spend a lot of time emptying and changing my bags, I have to remind myself that before the surgery I sometimes lost control of my bowels.  That was the most humiliating and devastating part of my Ulcerative Colitis.  Now I don’t have that worry!  Before the surgery I was in pain pretty much all the time, now I have no pain.  Before, I was bleeding so much from my bum that at times I had to wear a pad, now I have no bleeding at all.

talking through problems

I have a few friends who are going through really tough times at the minute, all in totally different ways but equally tough.  It makes me think about life and the challenges we face during our lives.  When I was younger and Id read about someone facing illness or the death of a loved one, I’d think ‘how do they cope?!!’ – I now realise that there isn’t an alternative to ‘coping’ – Coping is just putting one foot in front of the other, taking each day at a time and accepting that sometimes life is shit, things happen that are not fair, that situations feel so huge and overwhelming that all you can do is sit and weep.

Sitting and weeping is a necessary process, we need to express our pain and let out our frustrations.  Then we get up, brush ourselves off and keep going.  I think it is so important to have people to talk to, this blog is cathartic for me, I feel that writing all my feelings here allows me to release them. Talking is key, whether it is a partner, family, friends or a councillor.  I think if we can talk things through and be open about our feelings it really helps.  Giving a voice to your worries takes the power away from them.  We all know that we can take a concern and make it bigger and badder in our heads than it really is, speaking about them with someone you trust deflates the worry and I swear it will make you feel better!

99 problems

Its not about ‘getting over’ a tough time, its about learning to live with it and that is what I will do, I will accept the bad days and sometimes Ill sit and weep, but I will keep going and learn to live with my stoma.

 

Love Sam xx

 

Four weeks post op

Wow! What a difference a month makes! Four weeks ago today I had my surgery, I had my large bowel removed in a subtotal colectomy and an end ileostomy formed.

Four weeks ago about now I was being taken to the HDU, I was covered in wires, drips and tubes. It was a scary day and a month on I think I’m still a bit in shock that it actually happened.

In the past four weeks there’s been ups and downs, good days and bad. On the good days I’m thankful that I no longer have ulcerative colitis, that Im not on any medication and that my life can begin again. On bad days I feel sorry for myself. I feel angry that this had to happen to me and sad that I have this bloody bag on me all the time.

The weekend was fantastic. Definitely good days. On Saturday my best friends Caroline and Jamie were round and we had a work day planning all the exciting things we are doing in the next year with our arts group Responsible Fishing – it felt great to be getting back to some work and then we ended the evening with food, wine, a fire and a film.

Sunday we went to my mums for dinner, my friends, Aunty and cousins joined us. Mum made her amazing curries and we had a lovely day eating, drinking and laughing. It’s my first curry since the op, so I was terrified it was going to react badly with my stoma. My mum is from Aizawl, near India and so family curry days are a big part of our lives. I can report that my stoma likes beef curry, chicken biryani and dahl!!!

My friend Corinne (aka Motherscuffer) had her baby this weekend which was huge cause for celebration! I haven’t met her newest son Arthur yet but I can’t wait to see him for a squeeze!!!

Yesterday I had trouble with my bag leaking. And then when I was trying to change it, it kept ‘going off’. There’s no muscle in my stoma and so I have no control over when output (poo to you and me) comes out. Yesterday it was bad timing on when I changed it and EVERY time I cleaned up, put on the powder and barrier and then tried to put a bag on it ‘went off’. It was really frustrating and took me 45 minutes ending in me crying and feeling very down.

I didn’t sleep well last night. I’m off the steroids and no longer taking the sleeping tablets. But it was the fear off leaking in bed that kept me up. Timm told me it was fine, to sleep and if anything happened he’d deal with it all. He is fab and not at all squeamish with the whole thing which really helps but every time I was about to drop off, I’d imagine I was leaking and wake up. Very frustrating as I was telling myself to sleep, that it probably wouldn’t lean but if it did, it would be all ok,but my mind just wouldn’t accept that!

I’ve seen my stoma nurse today who is helping me try different bags to get my confidence back up and to get a bag that works for me. The problem is that my stoma is very close to both my belly button and my scar, I also have changes to my skin where the scars are pulling it inwards so I have dips in my stomach.

These things mean that it’s quite awkward to fit the base plate to my skin and that I have to fill the dips with paste. This means that changing my bag is stressful and time consuming. It’s really frustrating and makes me worry about how Ill get on with it in the coming months. I’m worried about working, I run a photography company with Timm and I worry that all the pressure is on him. I just hope things will get easier.

I’m recovering really well though. My wound which is around 6 inches long that 4 weeks ago was opened up and allowed surgeons to have a good rummage around is closed and just looks like a red line with dots around it (the staples marks!) My stoma is healing really well. I’m off ALL meds which just feels amazing!! And I’m starting to get my strength and stamina back.

I still have to take it really easy, one task can mean an hours nap but its great to be back on my feet and to gain back a little independence. I still rely on Timm a lot but its nice to be able to make tea for the kids now and again or to do little things around the house and garden.

We have a few large apple trees in the garden and tonight I was out with Timm collecting all the wind falls. I did have to sit on the ground but it was fab to be getting out and doing. We have soooooo many apples so were planning a lot if apple based dishes and more excitingly cider!!!

My body has healed so well over the past four weeks and I know it’s going to get better each day now. Though I sometimes feel emotional, angry and upset I keep trying to stay positive, be mindful of all the good things in my life and look to the future.

Because four weeks ago I was cured of ulcerative colitis, the disease that rules my life for ten years. And so for that I am truly grateful.

Love Sam xx

Coming off medication and nap time

One of the medications for Ulcerative Colitis are steroids, I was put on a course of Prednisolone in June this year. I started at 40mg a day and this did cause my flare up to go into remission. The problem is that when you put these steroids into your body, your body stops producing them itself so you can’t just stop taking them.  You have to taper them down by reducing your intake over the course of weeks or months.

I was tapering at 5mg a week. But unfortunately once I got to 10mg, I started to flare up again so my dose was increased again. This time the steroids didn’t affect my flare up, it just got worse.

This was the point that I ended up in hospital on high dose IV steroids. I had these for 6 days and they didn’t help at all. I actually got worse while I was in hospital – I was going to the toilet 12-15 times a day and losing so much blood. And that’s why the decision for surgery came about.

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Annnnnnyway, the same thing needed to happen with the tapering from the IV steroids, so since I left hospital I have still had to take prednisolone. They put me on a fast taper of dropping 5mg every three days. I’m down to 10mg and will be off them totally in four days time!!

The whole time I have been on steroids I have had insomnia. Deep unrelenting insomnia. Since the end of June I haven’t slept a full night and have taken sleeping tablets pretty much every night. Insomnia is soul destroying, the tiredness without the ability to fall to sleep is tough!!

I also have to take calcium twice a day as steroids can cause osteoporosis, and since my surgery I have to take lanzoprosol for the course of the steroids.

So in four days I will drop four meds! I am already off ALL my Ulcerative Colitis meds. Unless you have to take regular meds you’ll have no idea how emotional it can feel. I despise the fact that, for ten years, I have had to take numerous daily drugs to make me function as a normal human being.  In four days, the only medication I will be taking is paracetamol and codeine for pain relief.  And as Im recovering I will be slowly taking less and less of those too.  Im so happy about coming off the meds I could weep.  The surgery has been such a huge thing, but the light at the end of this tunnel is that because I had my large bowel removed, I no longer have Ulcerative Colitis.  Im cured.  I just don’t have it any more.  How cool is that???

If you want to know why Im so happy to get off the steroids, just take a peek at this list of side effects

medication funny

As I have dropped down now to the lower doses of the pred, it seems that the side effects are waning too.  Last night I said something to Timm I haven’t said in months – “Im dropping off, Im going to bed” – I still had to take a sleeping tablet but I went to bed at 11.30 and fell straight to sleep.  I got up around 5am to empty my bag, but then went back to sleep till 9.30am.   The last couple of days I have actually woke up feeling rested in the morning.

Now, I don’t know whether its to do with the meds or because I have been doing a little more but I feel sooooooo tired today.  Really exhausted.  I know I need to just take it as a cue from my body to slow down.  Its a weird feeling after months of insomnia and sleeplessness that all I want to do is nap.  I feel like a switch has turned in my head, I feel less manic and less hyper.  I feel like everything has just slowed down a little.

Today is my son Charlie’s 13th birthday party, he is having a few friends over for pizza and movie night.  Timm has taken over completely and has organised everything!  So I am going to spend the day napping, reading magazines and generally relaxing and then this evening Im going to hide in my bedroom with Thom and Ellie, my younger kids away from the teenagers!!

And now, Im off to nap…

nap time funny

Love Sam xx

Patience and Recovery

Its been 17 days since my surgery and Im healing well. My wound is closed and I have no pain in it, the scar is about 6 inches long and as it was stapled together I have the line and dots of a staple scar. A friend told me that after she had surgery, her doctor told her to use any sort of natural
oil, grape seed, olive etc – that you didn’t need posh bio oils or other ‘scar healing’ lotions or potions, and to massage her scar for 10 minutes a day. The motion of massage encourages healing in the scar, it improves blood circulation and increases the collagen. She showed me her scars and they were thin white lines, barely visible. So I have taken this advice and I hope it will help mine too.

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My stoma nurse visited today, she is fantastic and answered a few questions I had. I have some soreness to my skin where the ileostomy bag sticks to my skin right at the bottom, she advised that I am carefully peeling off the top of the bag when I remove it, and then pulling it off quickly at the bottom. And yep! She was totally right, that’s what i have been doing! The enemy of anyone with a stoma is sore skin. Sore skin can become open wounds very quickly, open wounds are wet and you cannot stick a bag onto wet skin. So good skin care is vital.

Im less weepy than yesterday, I think part of my problem is that I am still tapering off the steroids and they are notorious for affecting moods and emotions. Today feels more positive but I am struggling with one thing. Patience.

Im not the most patient of people at the best of times. I can’t leave christmas presents under the tree without a good squeeze. If I hear that someone is planning something as a surprise Ill pick at them trying to get clues!

Physically I am healing well. I am still taking painkillers regularly but everything is going to plan. Im well on the road to recovery. Im doing slightly more each day, this week I had the trip shopping and last night we went out to dinner for my son’s birthday. But I feel it when I do more, I tire very quickly and feel the pain more. When I lay down at night, I ache. Im walking well now and working on my posture as I have been stooped for weeks in protection of my stomach.

But now I can do more, it is very difficult to have patience with my body. I know I have to take it really slowly, that doing too much will hinder my overall recovery and could cause problems but Im struggling!! Timm won’t let me lift a finger, he’s still doing all the cooking, cleaning, school runs plus running our business so I feel bad in not being able to help him. He tells me off and just wants me to have the proper rest and recovery. Its nice to be looked after but quite difficult to accept. Im so used to doing everything for myself so it takes a big shift in mindset to look after myself first and allow others to help.

So I try to be patient. I know I need to put trust in my body and give it time to heal and get used to the huge changes that have been made to it. Im grateful and happy that it is doing this so well! I have had no complications and everything is healing well. My stoma is functioning really well and the pain is lessening. I find that the time between painkillers is lengthening slightly. Im not watching the clock to see when I can have more which is an improvement! The body is a bloody clever thing and mine is doing a great job.

I want to get back to work as soon as I can. I run our family photography business with Timm (go check us out – The Picture Foundry) and also work with arts group Responsible Fishing and we have really exciting projects coming up, so Im looking forward to getting back in the saddle. Weirdly, I also want to do some house work – I can’t even believe Im saying that!!! Timm is doing a great job, but you know what its like, no one can do things just as you do (nor do I expect them to!!)

I really want to walk our dog Lola. I want to do some gardening. I want to sand down the piano and paint it. I want to go to the pub with friends. I want to sort out my whole wardrobe. And make all the craft projects I ever put on pinterest. I want to go pick all the apples on the trees in the garden. I want to go on a bike ride. I want to be well enough to be at my friend Corinnes birth. I really want that. I want to drive. I want to visit friends.

Patience. It’s a virtue right?

 

patience

 

I will be patient. I have to be because I need to allow myself to heal and not do anything that could set me back.

So Im doing nice things whilst I recover. I watch a lot of films on netflix, Im watching a lot of TED talks (TED is a nonprofit devoted to Ideas Worth Spreading. It started out in 1984 as a conference bringing together people from three worlds: Technology, Entertainment, Design) I watch a lot of documentaries. I thought if Im sat in front of the box I can at least be learning new stuff!!

I am knitting. Im a crap knitter, I can knit squares. So Im knitting a LOT of squares that will eventually be sewn together to make a blanket.

Im reading. Im a big reader anyway but my concentration levels have been really low for a while, its nice now to be able to read more than one sentence (over and over again!) I was bought a book called The House of Leaves over ten years ago and got a third of the way through it before giving up. Its a very difficult read requiring you to flip back and forward and read things out of sync. My good friend James has just started it and has inspired me to try again with it… If you fancy reading it you can get it on Amazon.

Im blogging. Obviously as you are reading. It feels good to blog, its very cathartic for me and I can’t believe how many people are reading! Since I started in July Ive had over 10,000 views of this site – bloody hell chaps!!! Thank you!! From the bottom of my heart thank you for reading and commenting. Thank you.

Im planning our trip to Australia!!! This is a fab one. We are going to Australia via Vietnam to visit my sister, brother in law and niece in December this year, its the most exciting thing!! I was so worried about the trip before my surgery, nervous that I would have a flare up and ruin the trip, that we wouldn’t be able to do the things we wanted to do as I would be ill and need to be close to a loo. So now I have the bag, its exciting!!! There is no reason I can’t do anything everyone else can do. The only thing I need to think about it making sure I take enough bags and products that I need.

I meditate. Now don’t laugh!!! Im not ommmmming away in a corner, but I am spending ten minutes to sit and close my eyes, relax and partake in a bit of mindfulness. Its ten minutes of quiet. Ten minutes of feeling myself grounded, concentrating on my breathing and clearing my mind of everything. It makes me feel centred and calm. So don’t mock – try it… You might like it.

And I try to be patient.

Love Sam xx

Self Pity Vs Staying Positive

I think in general I am a fairly positive person. I really try not to wallow in self pity and I always try and find the silver lining. Not always of course, but on the whole I really try.

I’m struggling at the moment. I want to shout and scream like a toddler. I want to bang my hands and feet on the floor and get all Chinese crying baby. I want to say ‘ITS NOT FAIR!’

self pity

I feel like I’m a fairly decent chap, I’m kind and caring and I love my friends and family. I try hard to be a good person, I think of others before myself and I try to put more niceness into the world than badness. So it’s hard when I feel like I’m getting dealt a shitty hand! If I believed in a God if be thinking that he had something against me right now!!!!

Part of me would find it so easy to sink into self pity. Part of me wants to lay in bed with my curtains closed, Alanis Morrissette on full blast, a bottle of red wine and a box of tissues… Crying, weeping, wailing. A good chunk of drama, hand to forehead, perhaps some swooning.

But you know what? Logically I know that’s not going to help ANYTHING! It won’t make me feel better. It won’t stop me being in pain. It won’t take away my stoma, it won’t heal my body from surgery. It won’t bring back my doggy.

It won’t stop me feeling sad. It won’t stop this deep grief inside. I’m grieving Elvis. But I’m also grieving my bowel – that’s an odd one!!! I’m grieving a ‘normal’ life without a bag.

So I make a choice. Every day I make a choice that however this day goes, I’m going to try to deal with it positively.

Don’t get me wrong, I still have my moments. When I’m sad I will have a cry and a bug cuddle with Timm. We talk a LOT. About how I’m feeling, how Timm is feeling. About how I am physically, mentally and emotionally and that helps so much.

I’m not suggesting I’m a bundle of sunshine!! I think it’s really important that I talk about the negative things as well as the positive. This blog is helping me so much to be able to pour my emotions onto the page.

But I think the most important part of my recovery is going to be an emotional one. So I try. Every day I try to stay positive. To be mindful. To think of the good things in my life. To stay centred. To take ten minutes to meditate (yes really!!!!). To appreciate. To be grateful. To love. And to be loved.

Being happy is an option. No matter how shit life may seem, whatever is thrown at you. You can make the decision to try to be happy. Take control of whatever you can, no matter how small. I’ve realised control is quite important to me, I realised that when I lost it and suddenly was post op in a hospital and couldn’t move, couldn’t clean myself or do anything. But I can control how I react to it. So I try to realise that though I have had to rely on other in the last two weeks to do things that I wish I could do myself, that Blimey, aren’t I lucky to have people around me who are willing to help me!!!

positivity

I can’t control that Elvis, my awesome dog has died. So suddenly he is just gone!! I feel in shock. Timm has been to get his body from our neighbours and Ive had a few minutes with him this morning. He looks perfect, there is not a mark on him. If you don’t have pets, you may not understand just how heartbreaking it is to lose an animal. He was part of my family and we all loved him so much. I miss him. He has been by my side since I left hospital, I think he did know that I was in pain (either that or he was just enjoying the warmth and my allowing him in my bed!!) I feel like its so unfair that he is gone, and for it to happen now when Im already dealing with so much bloody sucks.

Its hard to find any positivity in the situation because there isn’t any. But I can make a choice, I can cry and say its not fair (and I have done that for a while!!) or I can cuddle my children and encourage them to talk about all the things we loved about him. About the funny way he scrunched up his nose so he looked like he was smiling. About just how greedy he was and how he’d do anything for a treat! About his soft ears, his helicopter tail and his big wide eyes. I know the kids will mirror our reactions, so its important that they see us smiling. We have all had a cry together. We have talked about how it is ok to cry, ok to be sad. But important that we think about the things we loved about him. The things that made us happy.

This weekend Timm had to work away again, he took our two eldest children and my amazing friend Caroline came to stay. We had our two youngest kids with us and she has cooked, cleaned and cared for me. She is an awesome person and just a truly beautiful friend. How lucky am I? I cant be grumpy and sink into self pity when I have people around me who are so caring and wonderful.

positive thinking

I’ve said before and ill say again. I am BLOWN AWAY by the messages, cards, gifts, flowers, texts, phone calls and visits I have had from you all. Every single one genuinely makes me feel better. With all the support and care I have had from so many people, I choose to stay positive…

Thank you for reading and for caring.

Love Sam xxx

Home!

Two weeks ago I went into hospital.

One week ago I had my colon removed and an ileostomy put in place.

One week ago almost to the hour I was in the High Dependency Unit.

Tonight I’m in my own bed with my doggy.

The body is an awesome thing!

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Love Sam xxx

Recovery

Hello everyone

I thought Id do a little update, later when I’m fit and well I’m planning some posts, vlogs and helpful stuff re stomas and ileostomies etc

I’ve also had some amazing offers to do some work and events to raise awareness and money so I’m very excited.

But I’m still recovering and so trying to not take on any stress. So my post today is just a little update.

Recovery from a major operation is hard slog, man. Your whole body has taken a beating and it’s a slow and steady recovery. You are taking so many different drugs, have lines in and out of your body. Your legs are bound in surgical stockings and you are laid up in a hospital bed.

The pain is a toughie. For the first three days I had an epidural in that I could top up as and when I needed it. Ill be honest, I didn’t think it was doing that much… I thought I was a proper bad ass.

Seriously, I was walking to the toilet two days after surgery thinking ‘I am so hard’

Then they removed the epidural.

And I cried.

A lot.

Oh my god! I’ve never felt pain like it!!! My wound felt like it was blazing on fire and my whole stomach area felt like I’d been beaten by a rhino. My back was sore, my head hurt, the passage of food through my gut felt like a thousand snakes…

Now I’m getting on top of the pain, I’m on strong painkillers but the time between them is widening each day. Last night I didn’t wake for pain relief which is the first time since the op so I’m starting to feel like I’m turning a corner.

I’ve had a lot of issues with my ileostomy bag leaking since the op. This is hard to deal with. The first time it happened I cried a lot. I felt so embarrassed. I felt like a baby. I looked down and there was just waste everywhere and I flipped. I got so upset and my mum was here. She got really upset too. Not that it had happened but that I was upset.

Since then it’s happened a few times and though difficult, it get a little easier each time. Well perhaps not easier but less shocking, I’m more adaptable and I know how to deal with it now.

Yesterday morning the stoma nurses tried me with a different bag. It’s a two piece system and has so far been a massive success. It feels really solid and has had no leaks – I feel quite confident on using it.

I’ve had a couple of set backs in the last few days too. The first is I developed thrush in my mouth and throat. This is gross. It’s apparently quite common after surgery and also due to the large dose of antibiotics I received after surgery. It sounds like not that big a deal but because its so bad, it’s stopping me eating and drinking. My throat is so sore and feels like its full of bits and my mouth tastes disgusting. Because I’m not eating and drinking, my weights dropping fast, my blood pressure is low and my output from my bag is just green fluid which is not good!! I am on a remedy for the thrush though so hopefully it will clear up soon.

The other setback was a bit of a weird one. I had a full blown panic attack.

I’ve not had a panic attack before and kind of thought it was mental rather than physical thing so it was a total shock. I was sat with my stoma nurse and she was cleaning my stoma, it was a little sore but ok. I started to feel really queasy and thought I was going to vomit. All of a sudden I just couldn’t catch my breath, she got me to lie down on the bed and my hands, lips and legs went numb. I lay there gasping and my hands froze into claws – I had no control over my body, it was like I was frozen in fear.

After five minutes it passed and I was totally back to normal! They said my body was reacting to stress and it was a panic attack. I’ve never felt anything like it, and at the time I didn’t feel particularly stressed out or panicked. It was terrifying and I hope it never happens again. I feel for anyone who experiences anything like this now – so scary!

Alongside recovering from surgery I am still on the dreaded steroids. I have to taper off from the IV high dose steroids I’d had the week before surgery. So I’m dealing with all the nasty side effects of the evil prednisolone too!! Palpitations, insomnia, anxiety, hairiness and many more. It is shit but necessary. My body will have stopped producing cortocoids and so I have to taper off in order to allow it to start producing them naturally again. Because I take the steroids I also have to take two other medications, one is a calcium supplement the other is a gastro tablet to avoid ulcers.

But I AM off all my Ulcerative Colitis meds which feels AMAZING. Once I have tapered of the pred, I can come off the other meds which means apart from any pain killers I may need, I could be totally med free!!!

This is an awesome thought…

So tonight I was finally released from hospital – it’s been 7 days since my surgery. I pushed to be discharged as I had just had enough of being in hospital!! Also I knew I had a great support system in place here at home and that I believe ill recover better here. Timm and I run our photography business from home – The Picture Foundry and so he is about every day. He is doing all the school runs and taking card of the kids and so is here to cook and help take care of me. For times when he needs to be away for work I have my amazing, wonderful kind friend Caroline taking over and looking after all of us. I call her my back up Timm because she is so much more than just a friend. She is someone I can rely on for everything. I just hope in the future I can support her as much as she is doing me right now. I am blessed to have her and her partner Jamie in my life.

My mum is also on call to help out. She has been great in having the kids, helping Timm with cooking and cleaning and visiting me. It’s been a relief to know that Timm has had support from others. And mums cooking meals in advance for him has been just fab!!!

Getting home was a tough slog. The walk to the exit of the hospital exhausted me so much I thought I’d fall asleep! We picked the kids up from Caroline’s on the way back – I wanted to go in and collect them and it was good. But it totally took it out of me. We stayed a few minutes and then I was done! I just couldn’t concentrate and needed to be in my bed.

So I came straight home and home felt WEIRD after two weeks away!!! I came to bed and Timm sorted all my meds and put the kids to bed. Then he came and we just had a quiet cuddle.

Bliss.

Though I’ve seen him every day we haven’t had a second alone. So the best feeling in the world today was laying in Timm’s arms, eyes closed and enjoying the quiet, sure and calm feeling that I was home.

Love Sam xxx