sam cleasby author so bad ass sheffield

The time has come…

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

0 replies
  1. Jo Hudson
    Jo Hudson says:

    Well I had yet another cry reading your blog, you do know how to get us going! 🙂 Sending huge hugs babe. I am not surprised you feel down with everything you have been through. However, you are a warrior remember and you will be better. You should be proud of yourself, you are so brave. Xxx

    Reply
  2. Jo Hudson
    Jo Hudson says:

    Well I had yet another cry reading your blog, you do know how to get us going! 🙂 Sending huge hugs babe. I am not surprised you feel down with everything you have been through. However, you are a warrior remember and you will be better. You should be proud of yourself, you are so brave. Xxx

    Reply
  3. Jenny Warmington
    Jenny Warmington says:

    Look after yourself Sam, you will be ok given time and until then just lean on those around you. Thank you for sharing your experience with us, i can’t tell you how much it helps people like me who are trying to choose a path for their future. Xxxx

    Reply
  4. Jenny Warmington
    Jenny Warmington says:

    Look after yourself Sam, you will be ok given time and until then just lean on those around you. Thank you for sharing your experience with us, i can’t tell you how much it helps people like me who are trying to choose a path for their future. Xxxx

    Reply
  5. Gem
    Gem says:

    Hey Sam, I’ve been reading your blog for a few months now (a friend of mine has UC and I wanted to know more about it). Just wanted to let you know that I think you’re so super strong and brave! I’m really glad that the surgery went well and I guess feeling rubbish post operation is normal. I hope you start feeling better soon.
    PS the bit about going into the garden with Timm made me cry!

    Reply
  6. Gem
    Gem says:

    Hey Sam, I’ve been reading your blog for a few months now (a friend of mine has UC and I wanted to know more about it). Just wanted to let you know that I think you’re so super strong and brave! I’m really glad that the surgery went well and I guess feeling rubbish post operation is normal. I hope you start feeling better soon.
    PS the bit about going into the garden with Timm made me cry!

    Reply
  7. Nicola Goodlad
    Nicola Goodlad says:

    Hang on I there Sam as it WILL get better for you Hun, I felt exactly the same after my surgery in January which I now call my ‘dark days’ but they are over and I am living my life to the full again and you will too very soon! Take it easy and don’t rush things xx

    Reply
  8. Nicola Goodlad
    Nicola Goodlad says:

    Hang on I there Sam as it WILL get better for you Hun, I felt exactly the same after my surgery in January which I now call my ‘dark days’ but they are over and I am living my life to the full again and you will too very soon! Take it easy and don’t rush things xx

    Reply
  9. gymbunnymummy
    gymbunnymummy says:

    You’re so brave, I don’t know how you’re managing to cope but you are! I hope you start to feel better soon, more so emotionally. Good luck on your journey, I hope you’re back smiling soon xx

    Reply
  10. gymbunnymummy
    gymbunnymummy says:

    You’re so brave, I don’t know how you’re managing to cope but you are! I hope you start to feel better soon, more so emotionally. Good luck on your journey, I hope you’re back smiling soon xx

    Reply
  11. Cath
    Cath says:

    Hi Sam. I just want to tell you you’re amazing! You’ve been through so much, and you’re so strong. Much stronger than you seem to think you are right now. You’ve been on one heck of a journey and you still have some tough terrain to cross, but its getting better day by day. And like all journeys, you can only take one step at a time. I hope I haven’t bored you. I wish you all the luck and love in the world. Once again, you are amazing x

    Reply
  12. Cath
    Cath says:

    Hi Sam. I just want to tell you you’re amazing! You’ve been through so much, and you’re so strong. Much stronger than you seem to think you are right now. You’ve been on one heck of a journey and you still have some tough terrain to cross, but its getting better day by day. And like all journeys, you can only take one step at a time. I hope I haven’t bored you. I wish you all the luck and love in the world. Once again, you are amazing x

    Reply
  13. Helen Scriven
    Helen Scriven says:

    It’s nice to need tissues for a reason other than hay fever so thanks for that 🙂 Your happy days will come back. You’ve had to make some momentous decisions that have huge implications for you and your fabulous family. There is no wonder you doubt them sometimes. Be strong, like you always have done, and those happy days will come. In the meantime cry when you need to or of course write another fabulous blog so we can! Sending you enormous hugs xxx

    Reply
  14. Helen Scriven
    Helen Scriven says:

    It’s nice to need tissues for a reason other than hay fever so thanks for that 🙂 Your happy days will come back. You’ve had to make some momentous decisions that have huge implications for you and your fabulous family. There is no wonder you doubt them sometimes. Be strong, like you always have done, and those happy days will come. In the meantime cry when you need to or of course write another fabulous blog so we can! Sending you enormous hugs xxx

    Reply
  15. dpawson
    dpawson says:

    Good to see you back Sam, especially so with a pen in your hand. The cyclozine episode must have been a bit … Scary! Stay on the mend.

    Reply
  16. dpawson
    dpawson says:

    Good to see you back Sam, especially so with a pen in your hand. The cyclozine episode must have been a bit … Scary! Stay on the mend.

    Reply
  17. Lisa
    Lisa says:

    You are so brave and and inspiration to others you had a rough time of it haven’t you and admire how you have dealt with it keep well snd take care glad you had a better experience with the nursing staff this time I am so pleased you did the other nurse gave the rest of us a bad name.

    Lisa xx

    Reply
  18. Lisa
    Lisa says:

    You are so brave and and inspiration to others you had a rough time of it haven’t you and admire how you have dealt with it keep well snd take care glad you had a better experience with the nursing staff this time I am so pleased you did the other nurse gave the rest of us a bad name.

    Lisa xx

    Reply
  19. Tonks
    Tonks says:

    Sam you are amazing, inspiring, painfully heartbreakingly honest and just utterly awesome. I was happy to hear that your stay this time was much better and that you were well looked after. Your friends and family sound fabulous and I am rooting for you to have a steady progressive recovery. Lots of love xxx

    Reply
  20. Tonks
    Tonks says:

    Sam you are amazing, inspiring, painfully heartbreakingly honest and just utterly awesome. I was happy to hear that your stay this time was much better and that you were well looked after. Your friends and family sound fabulous and I am rooting for you to have a steady progressive recovery. Lots of love xxx

    Reply

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