Tag Archive for: surgery

Happy birthday to my Jpouch!

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I can’t believe my jpouch is one year old today!!!!

A year ago on 14th May 2014 I had just been through a really tough surgery. I had woken without my Ileostomy bag and was facing my first day for nine months without pooing through my stomach!!

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I was exhausted, terrified and in an awful lot of pain. I had a large tube in my bottom that would have to stay there for ten days and I also wouldn’t eat for almost two weeks.

Those first few days were bad. The pain, hunger, fear and emotional turmoil were so tough. To be honest the first few weeks were really awful, I was incontinent and taking so many drugs and learning to live with a pouch.

For the first few months I asked myself on a daily basis what had I done?! I had been warned that the recovery was brutal and would take 2 years but it was worse than I could imagine.  Everything seemed so much harder than with my stoma and I doubted my decision all the time.  Learning to use my pouch was like a toddler learning to use their bowels.  For the first weeks I had to go to the toilet every two hours, even through the night, setting an alarm.  This is because my pouch was made in a two step procedure, step one was colectomy and ileostomy and step two was pouch formation and reconnection – some people have the operations in three or more steps with the pouch being formed but not connected and then another surgery to connect it up a few months later.

The two hours was stretched to three and then four before the long  period of trying to ‘hold it’ for as long as possible to train the pouch to hold more stool and teach my body to go for longer periods between toilet visits.

The past year has been a huge learning curve.  There have been really difficult times where I have barely left the bathroom, there are times where I have had pouchitis, tummy bugs, butt burn, incisional hernia, surgery and so much more.  I still have ‘flare ups’ where my joints are so painful and I feel exhausted.  The fatigue hits hard at times.

But I can say, one year post surgery that I am really glad that I went ahead with the surgery.  My life is improving all the time, I can go longer between toilet visits and I am learning what food I can and can’t tolerate.  I rarely have accidents and I do feel that my health is improving all the time.  There are times when I don’t even think about toilets!!! It has been YEARS since I could say that!

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So happy birthday to my jpouch, it has been a crazy year! Here’s to the next one!!

 

Sam xx

 

Op update

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After my latest hernia surgery 2 weeks ago I have tried to rest and recover as well as fitting in quite a lot of work! I know people say to take it easy but both my husband and I both run businesses where if we don’t work, there’s no wage!

I wore a corset whenever I was up and about to support my stomach but found after a week, a large hard lump formed behind my scar. I was scared that the hernia had come straight back through but it feels different to that.

As always I have been trying to tell everyone around me that I’m fine and just power through and deal with it. In reality I feel gutted that there is yet another setback.

Mr Brown doesn’t think it’s anything to worry about and suggested it was a seroma. A seroma is a pocket of clear serous fluid that sometimes develops in the body after surgery. When small blood vessels are ruptured, blood plasma can seep out; inflammation caused by dying injured cells also contributes to the fluid.

He has booked me in today for an appointment to take a look at it and so I will update as soon as I know anything more.

I just want to be healthy and to not have any more issues. I know this sounds really minor and it is in the grand scheme of things but it tough when you feel that it’s just one thing after another. I want to know when I get a break from all this, you know?

I’m so fed up of hospitals, doctors and medical crap! I just want to be healthy! It’s not too much to ask is it?

Anyway rant over, I will update soon.

Sam xx

Hernia Surgery Update

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I had my hernia surgery two weeks ago and realised that I hadn’t posted an update here (though I have been on facebook and twitter).  I have had a super busy week working with the amazing arts group Responsible Fishing and so have just not had a minute!

So to the hernia surgery!  Our fab friends Caroline and Jamie had the kids for us the night before as I needed to be at hospital at 7am and so it made life loads easier to not have to get three kids up and out for 6am.  I had to stop eating at midnight the night before and no fluids from 6am.  I arrived at the hospital and was taken up to my room where Mr Brown came to see me along with the anaesthetist and nurses.

I was second on the morning list and so went down to theatre at around 9am, and after just a couple of hours was back up on the ward feeling pretty sore and very sleepy but not bad at all.  I was very relieved to not feel sick as after the last operation I awoke vomiting and felt nauseas for days.  That was when I discovered that I have bad reactions with the anti sickness drug Cyclozine and so I was quite anxious this time.

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The first night I had quite a bit of pain but was able to control it with just paracetamol and codeine and I was allowed home the following morning.  The only issue was my sleepy bowel… I just couldn’t go to the toilet.  It was the oddest feeling as since my jpouch surgery last May, I go to the toilet and poo AT LEAST 6 times a day and so to just not go at all for nearly 3 days was bizarre!!!

I was a little worried but was told it was very normal after surgery and just to keep an eye on it and to call them and potentially go back to hospital if it didn’t ‘wake up’ after 3 days.  But sometime on day three, my small intestines awoke with some ridiculously loud grumbles and I eventually went to the loo.

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The first couple of days I had some soreness, but nothing compared to the last two surgeries!  It was well controlled with codeine and paracetamol and I also wore a corset to feel a little more supported.  By day 4 I was up and pottering around the house and day 9 saw me go away with work for 4 days!

I had been very nervous about the op, but it all seems to be going well.  There is a lot of hard swelling behind my scar and I have a little soreness by the end of the day but I am feeling ok.  I am still very tired, I think perhaps its the general anaesthetic that takes it out of you, but with the odd nap and lots of early nights I am doing very well.

hernia ostomy incisional scar

Thanks for all the lovely messages of support, it means so much!

 

Sam x

Crohns and Colitis – more than 'just' a poo disease

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I talk a lot about Crohn’s Disease and Ulcerative Colitis, trying to demystify the diseases that come under the umbrella of Inflammatory Bowel Disease because being diagnosed with these things can be confusing, scary and very upsetting.  I try to be positive yet honest, to share my journey, the ups and downs and try and describe my life without scaring the bejesus out of any newbies.

The LAST thing I want to do with this post is to scare anyone, but what I do want to discuss are the realities  of IBD.  For many people, the conditions can be controlled really well with medications, with long periods of remission being achieved but around 2 in 10 people with UC and 7 in 10 people with Crohn’s will have to have some form of surgery in their lifetime.   All have to deal with the medications and treatments for the diseases having side effects, some of which can potentially be life threatening.

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Initially, especially if the UC is mild, medical treatment is through aminosalicylates (or 5-ASA drugs) such as mesalazine or sulphasalazine, immunosuppressant drugs, such as azathioprine or mercaptopurine may be prescribed for people with UC who continue to have frequent flare ups or ongoing symptoms.  For more severe UC, treatment with steroids given intravenously may be necessary. If this does not work, you may be given another immunosuppressant, ciclosporin. Biologics such as infliximab are now also used for severe UC.

Treatment for Crohn’s also depends on which part and how much of the gut is affected.  Mild inflammation may be treated with steroids or 5-ASAs such as mesalazine or sulphasalazine. Immunosuppressants such as azathioprine, mercaptopurine, or methotrexate, may be used for more persistent Crohn’s.  Biologic drugs, such as infliximab or adalimumab, are available for more severe Crohn’s Disease which has not responded to the usual treatments.

This information comes from Crohns and Colitis UK, a great charity with tons of information and support. Do take a look at their website www.crohnsandcolitis.org.uk

All these medications, especially when you move from mild to moderate or severe disease have side effects and some of them are life changing, life threatening and pretty scary.  The medication we take to make us better can be almost as difficult to deal with as the disease itself.  Immunosuppressant drugs do exactly what they say on the tin, they suppress the immunity which leaves the patient open to all sorts of other diseases and infections.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

Other meds have high risks of allergic reaction, cause weight gain, moon face, hairiness, increase your risk of cancer, can cause issues with mental health and so many other side effects.  I don’t want to scare people out of taking the medication, but I do want to speak honestly in the hope that others will understand the impact of IBD.

Then there is the scopes, the procedures, the surgeries… All of which carry risks.  And I haven’t even mentioned that IBD sufferers have a higher chance of getting bowel cancer.

I know this is all upsetting and scary, and I promise you that my intention isn’t to be frightening people.  But there isn’t a month that goes past without seeing another member of the IBD community has passed away, the tributes from friends and family filling my Facebook and twitter feeds.  I think it is important for people to realise that IBD isn’t “just” a poo disease, that what we face every day through the illness itself, the medication, the diagnosis tests and the treatments is hard work.

This isn’t about having a “bit of diarrhoea”, it can be life threatening and living with Inflammatory Bowel Disease is so tough at times.  It isn’t the same as that time you had a tummy bug, you don’t understand because your aunty’s neighbour’s sister has IBS when she eats milk.  IBD is serious.  It is life changing and I just wish more people could understand the gravity of living with this chronic illness.  There is no cure, it is a lifelong condition that can affect every single part of your life.

And the sad fact is that people die from it.  From the disease itself as well as from side effects from medications and complications from treatment and surgeries.

So next time you hear someone talking about Crohn’s or Colitis, please try to understand that it is not an easy cross to bear.  People with IBD truly are warriors, they have to be brave every single day to live with diseases that not only can be physically painful but can also be emotionally and mentally crippling.  The embarrassment and humiliation of a “poo disease” is isolating, but the burden of self care, of learning how to manage your illness and medication independently is tiring and mentally draining.  These things teamed with physical pain, incontinence and a socially difficult disease make life tough.

When you see us smiling, laughing and being ‘normal’, know that this is DESPITE dealing with all these issues.  So if you know someone with IBD, please try to be understanding, ask questions, care, love and try and make life just a little easier through your own kindness.

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And if you are the person with Crohns or Colitis, I am sorry if this post is a tough one to read.  I’m sorry that you have to deal with all this.  But don’t let it crush you, be strong, fight on and allow the illness to teach you lessons.  Live harder, when you have times of remission, when your meds are working or when your surgery and treatment is helping, do the things that you want to do, follow your dreams.  When times are tough and your health is suffering, be kind to yourself.  Allow yourself time to heal, take the meds and follow your treatments, be strong and just keep swimming (thanks for that life lesson Finding Nemo!).

I apologise once more for such a heavy post.  Please don’t let this fill you with fear, let it fill you with information and the desire to find out more.  Take control of your health by finding out as much as you can about your own illness and remember that IBD doesn’t define you, it is a small part of who you are and you are an amazing, unique and wonderful human being.

You can get some great advice and support from Crohns and Colitis UK and also IA Support… Click on the images below to go to their sites.

crohns and colitis uk Ileostomy Support

 

Remember that your doctor is always the best place to get advice on your own personal circumstances and that though IBD is tough, we all still have the ability to stay positive and to make the most of the hand we are dealt.

 

Love Sam x

Hernia surgery tomorrow

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So the big day is tomorrow! I am in at 7am for surgery on my incisional hernia with an overnight stay.  I started 2015 with two wishes, I didn’t want to have an operation or move house this year.  Unfortunately it wasn’t to be…

My hernia is very small and usually quite flat but when I exert myself, it pops out and is sickeningly painful and so it is stopping me from exercising and doing the things I want to do.  I have such a busy year with work and I need to be in good physical condition to manage it all.  Hernias only get worse with time, they won’t improve without surgery and so I know that this surgery is the right thing to do.

But I am nervous as hell.  A few people have said that “it’s only a small surgery” and that “it’s nothing compared to the last two”, they are right and I know they are only trying to set my mind at ease but I really am terrified and feeling anxious and sad about this operation.  

The thought of having another general anaesthetic is scaring me, I know they do it all the time but the risks are there.  I’m frightened at the thought of just not waking up.  I’m also scared of there being complications with the operation, but I have Mr Brown operating which definitely puts my mind at ease though I’m still nervy and shaky.

Timm is taking me in to hospital at 7am and I’ll be in overnight. If you follow me on Twitter or Instagram or like me on facebook then I will probably be posting on there before the blog.

I am extremely anxious and feeling weepy and sad but I am going to pull on my big girl pants and I’ll be ok. The kids are worried as they always are if I have to go into hospital but Timm is going to bring them to visit tomorrow.

Our amazing friends Caroline and Jamie are having the kids tonight so we don’t have to rush with them in the morning and they are looking after them tomorrow so Timm can stay with me. We’re so lucky to have such fantastic friends who are always there for us and offer to have the children whenever we are in need. I can’t thank them enough and love them very very much.

So I’m off now as I think I’m chuntering on…

Thanks for all the lovely good luck messages as well as the cards and flowers.

✌️& ❤️

Sam xxx

Hernia date booked!

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Very quick update about Harry the hernia… I blogged about getting the news I was being treated at a private hospital.

Well, my letter has come through and I’m booked in for the 21st March! Just under 3 weeks time.

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Though I know it’s a routine operation and I trust my fabulous surgeon Mr Brown implicitly, I am very nervous. I think psychologically, I associate hospitals with so much pain and missing my family and so my anxiety levels are quite high thinking about surgery.

I even thought about cancelling, I just got myself in a bit of a panic and was thinking that the hernia isn’t that bad and that I could live with it. The reality is that it isn’t as bad as the last one. But it is uncomfortable every day and stops me doing things. It’s a sharp sickly pain when it pops out but because it’s not agony, I was thinking maybe I should wait.

I got over myself though and know I need this surgery to help me feel like I’m back on the road to recovery and so I will be going ahead.

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I’m hoping that the change in environment may help my anxiety. I’ve never been to this hospital before and so it’s a different feeling to going ‘back’ to the Northern General. The place looks gorgeous and I’ll hopefully only be in for one night.

As with all surgeries, I have this panic that I won’t wake up. But I trust Mr Brown and really do feel like I’m in the safest hands and so I need to try to let go of that fear and accept that I will be cared for.

The kids are upset about me going back in.  They always get very concerned when I have to go into hospitals even if it’s just for a clinic visit, as they are afraid I will stay there for a couple of weeks.  But I have assured them that it will be a brief stay, the doctors say one night in, and this hospital doesn’t have set visiting hours and I will have a private room so they should be able to visit me whenever they like.  This really helps Timm as trying to arrange visits and school runs was quite stressful for him before.

I am having an operation on an Incisional Hernia, which means the weakness is where they cut me for the stoma, this is my second hernia op in a year and unfortunately the chances of it coming back are quite high.  But I will plod on in the hope that one year I will go a full 12 months without any surgery!!

 

I will, of course be blogging up to and after my surgery, so do keep reading!

 

Sam x

Hernia surgery update

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I have been awaiting a date for hernia surgery, I am hoping this op is going to set me back on a healing path. My hernia isn’t large but it’s uncomfortable every day and is stopping me doing the things I want to do.

Anyway I heard from my consultants secretary this week. Mr Brown was unhappy with the time I’ve been waiting and has asked for me to be booked in to the private hospital in town rather than the usual one.

It’s a bit of a shock but for once, a nice one! Surgery should be within the next few weeks and will be with Mr Brown rather than just on the general list as was planned before. This has calmed some of my anxiety over this operation.

I was adamant that 2015 was going to have two things NOT happen for me. No house moving and no surgeries!!! After two huge ops in 2013 and 2014, I was really hoping for no cutting open of Sam!! Unfortunately that’s not to be, and I have been feeling really upset, angry and anxious. So the knowledge that I will be under Mr Brown’s care has really lifted my spirits and calmed some of my nerves.

Mentally I am struggling at the minute. I have just so much jumbling through my mind right now. Illness, jpouch, hernia, accidents plus my cut hand that’s still strapped up along with parenting and personal issues are making me feel fucking crazy. I am filled with self doubt, anxiety and sadness.

I’m carrying on regardless. Trying not to piss off everyone around me and just keep going. My head is swimming but I’m trying hard to work through my anxieties and sleep issues. I’ve downloaded a meditation app that I’m using at night to help me relax and sleep.

We are off to Filey for a few days next week and though we still have to work, it will be really nice to get some sea air, get out walking and have a change of scenery.

I’ll be photographing and instagraming my break next week so if you don’t already, head over and follow me over there (samcleasby)

Sam xx

Harry is back… Hernias and J pouch

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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.

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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

It's my ONE YEAR no coloniversary!!!

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What a year it has been! On 3rd September 2013 after over a week in hospital being pumped full of so many drugs, the decision was made that I needed to have my colon (my large bowel) removed. And so I was wheeled into surgery and this whole roller coaster began.

I was cut open and my colon was removed and the end of my small intestine was formed into an ostomy that was pulled through a little hole in my stomach and sewn into place. This was the start of my eight months with an ileostomy, wearing a bag on the outside of my stomach. In May 2014 I had the second part of my surgery to remove my ileostomy and form a j pouch that reconnects my bowel to my bum.

It’s been the hardest year of my life. There were times when I thought I couldn’t cope any more, that I was in so much pain and distress that I’d have done anything for it to stop. There were times when I felt so angry with the world, that it wasn’t fair that I had to deal with all of it. There were times when I shut out the people around me as I couldn’t deal with the guilt of seeing their sad faces when they looked at me.

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Just over a year ago I started this blog as a diary, a way to talk about what was happening with my health and a cathartic exercise to help clear the stress and jumble of worries in my mind. I had absolutely no idea that it would be read all over the world thousands of times a day! That idea still blows my mind and I can’t tell you how grateful I am to each and every person who reads this blog.

What started as a personal therapy session has become a place to raise awareness of IBD, ulcerative colitis and crohns and also ostomies and pouch surgery. It’s become a place to talk about self esteem, body confidence and women’s issues. It’s become something that I’m so bloody proud of.

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One year ago today as I lost my colon I thought about how it would improve my health and my quality of life. I had no idea that it would lead me on this fantastic journey that I’ve had the privilege of sharing with you. My illness and surgery always felt like a negative in my life, something that was unfair and made me angry, sad and fed up. This blog has allowed me to change my experience into something that could help others, it’s given me a new lease on life and shown me that I am stronger than I ever thought and that I have an opportunity to share that with other people.

So happy no coloniversary to me today!!!

Thank you for reading and sharing my journey, here’s to the next year!!!

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Love Sam xxx

The time has come…

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For me to get blogging.  Apologies again for my absence, I really don’t know what to write about as I can barely understand how I am feeling right now, but I feel bad for not documenting this part of my journey and I know Ill probably regret it if I don’t.  I am also so grateful for all the loving messages of support and want to thank my readers from all over the world who have emailed me asking how I am as Im not posting!

I suppose Ill take it from the beginning.  I went into hospital on the 14th May at 7am and was taken through to the pre op ward where I had a few tests, got my surgical stockings and changed into my hospital gown.  Soon after I was taken through to the theatre and my epidural (for post op pain relief) was put in place, it was a great team and we had a laugh as I was in there.  I lay back on the table as they pumped the drugs through and my last memories are of the mask being over my face and breathing deeply.

pre op j pouch surgery sheffield

I awoke around 4 or 5 hours later from my pouch surgery feeling very nauseous but glad to be alive! I had been having nightmares that I just wouldn’t wake up from surgery.  I was really tired and the nurse came and said that Timm was on the phone, I believe I spoke to him but I can’t remember.  I told him to sort out the kids and to come and see me once I was back on the ward rather than coming to the post op ward where he would only be able to stay a few minutes.

 

I slept and puked for a few hours and was really out of it before going up on to the ward.  Timm and my mum visited and I felt ok, still quite sick and just exhausted.  The surgery had been a success and as I pulled up at my gown and looked down, I saw that I no longer had my ileostomy bag and my stoma was gone!  I had tubes everywhere, a catheter in my bladder, the epidural in back back attached to a drug machine, I had drips in my arms, a drainage tube sewn into my stomach and a drainage tube up my bum…

Post Op j pouch ileostomy ibd surgery sheffield sam cleasby so bad ass

 

The first few days passed in a bit of a blur, I was on a lot of different drugs to deal with my pain as well as not being able to eat.  I slept a lot and allowed my poor battered body time to recover.

I had a reaction to an anti emetic drug called cyclozine, I felt paralysed and couldn’t speak or communicate.  The nurse saw this and sat with me, explaining that I was having a reaction but that I would be fine once it passed.  After an hour or so the physical feeling wore off but for several hours I was left feeling completely confused, I didn’t know where I was, I thought I was dying and I couldn’t explain to anyone what was wrong.  I lay there crying silently for hours, not knowing what was happening.  Luckily it wore off after about 6 hours and I slowly started feeling normal again.  Absolutely terrifying!!

ileostomy j pouch wounds scars ibd surgery

I was put on a different anti sickness drug to deal with my nausea and vomiting, I say vomiting but as I hadnt eaten for days at that point it was more dry heaving.  I also was given an acupuncture needle to help, it was a tiny needle placed into the inside of my wrist that had a small sticker and a plastic nub that I was to leave in and press when I felt sick.  I can’t explain how it worked but I can say that before I had it I was having anti sickness drugs every 6 hours.  After I had it I had two doses in the next 5 days!

acupuncture anti emetic sickness nausea nhs

After a few days they removed the catheter, the drain from my stomach and the epidural.  The drain in my bum had to stay in for 9 days… It was awful.  It was a tube inserted into my anus and into the newly formed pouch, its job was to allow any waste to drain from my internal pouch into a bag allowing the stitches on the pouch time to heal.  Three times a day I had to pump sterile water into the tube and then drain it out.  Honestly, it was the worst thing about the whole procedure.  The tube was extremely uncomfortable and meant I couldn’t sit upright nor lay flat on my back so I was bed ridden and had to turn from side to side every hour or so.  It was embarrassing too to have this quite large tube coming from in-between my legs and having to carry the bag around with me when I went to the toilet and back.

rectal drain post op j pouch surgery one step j pouch surgery mr brown sheffield nhs

Im glad to say that the nurses and staff were amazing this time, I had no problems at all like the last time I was in.  There was especially one nurse named Sam who just went above and beyond, she was so caring and easy to talk to.  She took the time to speak to you and was just an amazing nurse.  Im going to make sure I let the hospital know just how much I appreciated their care and support.

I wasn’t allowed any solid food for the whole 9 days that I was in hospital.  9 DAYS YO!!!! The first few days I had a drip, and after that I had to drink plenty of fluids and I had these fortisip drinks that I was supposed to drink three times a day.  I think I had 4 or 5 in my whole stay as I couldn’t stomach them.

drip drugs j pouch ibd surgery sheffield so bad ass sam cleasby

I was quite emotional while I was in hospital.  Between the pain, lack of sleep, lack of food, the drugs and the emotions of dealing with surgery I was a bit of a mess.  I cried quite a lot and felt ever so sorry for myself.  There was a bit of a heat wave while I was in and Id see people coming in, in summer clothes and smelling of the outdoors and would silently cry to myself.  Im aware this sounds a bit pathetic but it really got to me!

sam cleasby ulcerative colitis ibd surgery ileostomy jpouch hospital

One day I asked Timm to make sure I had no other visitors, I was so chuffed that my friends and family visited me but that one day I just felt totally overwhelmed and just wanted to see my husband.  He said he was coming at 2pm for visiting but he was running late.  I lay there watching the clock tick by, logically knowing that he must just be caught in traffic, that he would have called if he couldn’t make it.  But my mind started working overtime.

‘He’s not coming’ I kept thinking.  ‘He doesn’t want to see me, how can I blame him? I have this horrid tube and Im so weepy and useless.  He’s just not coming’  I worked myself into such a state that all I could do was lay there and cry.  And then he appeared. A measly 20 minutes late, not a big deal at all but I had wound myself up so much that I just wept.

But you know, my knight in shining armour came and held me tight.  “You thought I weren’t coming” he said and I just sadly nodded.  He walked off and came back grinning with a wheelchair.  “Come on Mrs C, we’re off on an adventure” he said.  He bought me one of those donut cushions so I could sit and then helped me into the chair.  He wheeled me through the hospital out to a little garden and we just sat quietly in the sunshine holding hands.  Him on a bench and me in the chair, blanket tucked over me hiding the bag.  For the first time in a week I smiled and it felt genuine, everything else, the pain and the fear, just disappeared for that hour.  It felt like it was just me and him and that everything was going to be ok.

sam and timm cleasby sheffield

On Friday 23rd May I was finally allowed the tube in my ass to be removed, it was such a relief.  I could have cried!!! And then I was allowed home! It was so good to get home to Timm and the kids and into my own bed.  I have been home for three weeks now and the recovery is slow and steady.  Physically I have recovered well from the actual incision wounds on my stomach, they have healed really well and I am pleased with them.

ileostomy j pouch scars post op pictures

 

The first week I was home I had to go to the toilet and empty my bowels every two hours, I had an alarm set to remind me and this went on through the night too.  The next week the time was extended to three hours so as you can imagine, I was just exhausted.  Getting up through the night was tough as once I was up I was finding it difficult to get back to sleep.  The reason for this is to make sure as little pressure as possible is put on the stitches in my pouch.  The next week and from then on I am to hold the urge to go to the toilet for as long as possible to start the long process of training my pouch to stretch and hold waste so I don’t have to go to the toilet constantly.  This can take up to two years…

Last Sunday I started feeling unwell, I had to go to the loo A LOT and by Monday morning I had been over 50 times in 24 hours.  I was exhausted and terrified something had gone terribly wrong.  I called my stoma nurse who recommended speaking to the specialised nurses at the hospital, they said I needed to see the GP as soon as possible.  I saw the GP who oddly enough used to work with my consultant and surgeon Mr Brown!  She was lovely and examined me and said she believed it was a virus that was going round.  I was so relieved and came home to plenty of fluids and rest.

So a month after surgery I am now going to the toilet around 15 – 20 times a day, this is mainly because it is quite difficult to actually open my bowels, it feels so different to before and it may take 3 or 4 trips to the toilet to feel like I am ’empty’.  It is very tiring going so much and I feel down about it.  I have to wear a pad in my knickers ‘just in case’ which makes me feel like absolute crap.  I feel really embarrassed talking about it, which is odd for me as I usually am happy to talk about anything but I think because my self esteem and confidence feel at an all time low, it is hard for me to open up and talk about it.

I know it is early days and I was warned that this recovery process is very long and drawn out, it takes a lot of time for the pouch to work properly and so I know I just have to be patient and accepting that this is how it is right now.  But honestly, I am feeling very low.  I feel sad, scared and weak.  Im worried that I have done the wrong thing, I feel like I am ill with Ulcerative Colitis again and that I am back to where I was before the first surgery.  I feel quite panicky and anxious a lot, like Im on the verge of tears.  And Im finding it very difficult to open up and talk about it to those around me.

I am so lucky to have such wonderful, caring people supporting me.  Timm, as ever, has been amazing, my awesome friend Caroline has been here looking after me and the kids, cooking, cleaning and just being there for me, my mum has been here cooking for us all and looking after the kids.  I have had visits, messages and calls from so many fabulous friends and family and I feel so grateful.

But part of me feels like I need to be bubbly and happy, I don’t want to be a Debbie Downer whinging on and on and I find myself just saying “yes, Im fine!!!” to the question of how am I because Im worried that if I open up and say that actually I feel horrible that I will be letting people and myself down.  I know that sounds mental, and if I think about it logically I know that it is absolutely fine to be feeling rubbish, I just had major surgery! I also know that people are there for me.

I think I find it difficult to voice my feelings because I honestly don’t really understand them myself.  I just feel that under my day to day smile, there lurks this gloom.  A heavy hearted sadness coupled with a chest thumping panic.  I feel worried at the thought of being in public or around too many people, I feel safe here at home with Timm and so Im worried about leaving the house.  We went to a shopping centre last week for an hour and it was quite scary but ok as I was with Timm, I was exhausted by it and went straight to bed afterwards.

I just need to keep plodding on, take each day at a time and accept that right now, things are shit.  But as I recover, things will get better each week.  This is a lonnnnnngggggg post so have a shiny star if you have managed to get this far!  Thanks for reading and I will make myself keep on blogging, because no matter how difficult it is for me to get these words down, I know that I feel better for it and hopefully I can help someone else too.

 

Much Love

 

Sam xxx