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Quick update – j pouch problems

A super quick update as I’m not up to blogging.

I’m having some problems with my pouch and so I’m going back to see my consultant tomorrow morning.

I can’t pass anything without a lot of pain, straining and basically feeling like I’m about to pass out.

Lots of pain in my belly and bottom and also passing what looks like coffee grounds which can be a sign of bleeding higher up.

I’m really exhausted and fed up but hoping that I’ll get some help tomorrow.

I’m feeling really sorry for myself right now. I’m regretting the operation and feel like my illness and recovery is just a massive burden to everyone. It all feels pretty sucky at the minute but I’m hoping that things will seem brighter soon.

Sam xx

On the mend and my first day out

It’s been six weeks post pouch surgery and since I started on the loperamide last Monday, things have improved massively.  Last week I was going to the toilet around 20 times a day and having 2-4 accidents a day which was heart breakingly depressing.  Dr Brown said I needed to figure out how much or how little of the meds to take to slow down how often I need to empty my pouch, I started high at 4 tablets which was too much, I ended up with a lot of bloating and terrible stomach pains.

I have brought it down to 1-2 tablets and this seems to be working well for me, I am now going about 5 times a day and accidents are a lot rarer! I have found that most days I am ok in the mornings as my stomach is empty but it gets worse in the evenings and so I’m taking the loperamide at tea time.

It is embarrassing to talk about this, I cringe at the thought of people knowing how it has been but this blog is about honesty and I am going to document the bad times so I can appreciate it when the good times come.  There is also a lot of bad press about j pouches, I have seen in many forums people saying they wouldn’t ever have pouch surgery as it’s too much like going back to illness with the recovery.

I still have some discomfort but I am down to just occasional pain relief rather than every 4-6 hours as I have been.

On Sunday I had my first day out. It was tough mentally, I had a little cry as I tried on forty outfits to find something I was comfortable. I’ve lost quite a bit if weight and everything just looked ODD. I’d developed a good wardrobe that worked well with my ileostomy bag but now I’ve lost my way a little. Wearing pyjamas for six weeks does that to a person!

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We had a family day out at Cliffhanger, a family activity festival in Sheffield and then on to L’eroica in Bakewell, an Italian bicycle event with music, food, drinks and general loveliness.

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It felt weird being out in public and I felt quite self conscious and a bit fearful. I was very glad to have Timm’s hand to hold, which is an odd feeling for someone like me who is usually confident and independent. But it was really lovely. A tiny bit of normality in a family day out and it lifted my spirits hugely.

Even having to use outdoor portaloos was ok. I felt the urge to go and panic washed over me a bit, but is told Timm and he just took my bags and said “go! We’ll find you!” So I set off on walking, fast enough that I wouldn’t shit myself yet nonchalant enough that I didn’t look like I was about to! It was all fine though and it felt like a little victory for me.

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It was a big step for me to be out for the day. I felt quite emotional, it just felt so good to feel like a real family after weeks of me being a patient whilst Timm cared for me and the kids. It reminded me why I have gone through the last year, that I wanted to get to a point in my life where it wasn’t all just about illness.

I still have a long way to go,but this first day out felt like a really great first step on that ladder.

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Love Sam xx

Hospital check up

I had my four week check at the hospital yesterday with my awesome surgeon Mr Brown. Everything is looking good!

At some point I need to learn when it’s not ok to make inappropriate comments though. He needed to *ahem* examine me and so a nurse was present. She was asking me to assume the usual lay on you left side, knees up position when I said “yep I’ve been here before!”
“Oh” she replied sympathetically “have you had problems and had to come in after surgery?”
“Nah I’ve just had years of this so I’m used to literally being in this position”

Anyway, Mr Brown was happy that everything seemed ok with my pouch. But when we discussed my bowel habits (actually is it still correct to say bowel habits? You know what with me missing my large bowel…) he wasn’t happy with the amount of times I’m going.

It’s currently around 15 times a day, it’s very sudden and urgent and I’m having continence issues. I’m having to wear pads to deal with that and it makes me feel like absolute shit (excuse the pun) My confidence is very low and I feel embarrassed and really fucking sad about it.

Anyhoooo Mr Brown asked how much loperamide I was taking, the answer is I’m not because no one told me I should be or prescribed anything. He wasn’t happy about that and said I should have been taking it. So he prescribed that and was hopeful that it would solve a lot of the issues I’m having, which would be AMAZING!

He then asked if I knew someone who runs a certain shop in Sheffield, I said I didn’t think so but that I did run this blog so perhaps they had read something here. He said they had told him that and so he’d better do a good job incase I wrote anything mean about him. I assured him I had only put lovely things about him!

It was a bit weird to know people are talking about this place and that it’s got back to my surgeon!! But it’s all good and I can hand on heart say, without any persuasion from him, that Mr Brown has been fantastic from the beginning. He always comes across really caring and like you are important, I’ve never felt like just a name on a sheet and his care has been amazing.

Going from 8 years at Rotherham hospital to asking to be moved to Sheffield my care had improved so much. Both the Hallamshire and Northern General (with the exception of bitch nurse from last year!) have been awesome and I can’t thank them enough.

You know you have a good doctor when both nurses and other patients have nothing but good words to say about them. When I speak to other IBD patients in Sheffield, everyone gushes about him and one nurse in hospital said “Ohhh he’s like a fine wine, he’s just getting better with age!”

So Mr Brown, if you happen across my little blog (because let’s face it, most people would DEFINITELY google themselves if they heard they’d been blogged about!!) you are doing an awesome job and I thank you from the bottom (fnarrr!) of my heart for your care over the last year.

I have to say loperamide isn’t the instant cure I was (stupidly) hoping for, it made me feel quite queasy last night and there was no impact on the amount of times I’m going to the loo. But obviously it’s something that’s going to take time to get in my system.

I had a pint of Orange juice yesterday as I was craving for it but it was not good. At least I’m assuming it was the juice! It passed thru my system in about an hour and left me on the loo about 10 times in an hour. OJ is now on my pouch kill list…

But I have to keep reminding myself that it’s early days. I’ll keep plodding on and I’m sure things will get better soon.

Love Sam x

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.

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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…

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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!!

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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!

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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.

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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.

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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!

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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.

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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.

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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

Apologies

I just wanted to say a quick ‘I’m sorry’ for not blogging much at the minute. This surgery has hit me so much harder than last time and I just have no inspiration to write.

It’s an odd feeling for me as usually writing is my escape and feels so cathartic but right now I’m struggling to put pen to paper and I’m not sure why.

I think I’m filled with chaotic emotions at the minute and I’m struggling to share that with anyone. Everyone around me is being so kind, supportive and loving but a part of me still feels numb to it. I can’t really explain my feelings. I don’t understand them so it’s nigh impossible to get them out on paper in any way that makes sense.

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I’m definitely starting to feel more human, the painkillers are working well and so at least I’m pain free, I’m still in the phase where I have to go to the loo every 3 hours, including through the night so I’m quite tired. But everything seems to have gone well, my pouch is functioning properly and my wounds are healing really well.

Physically I’m doing good but emotionally I’m a bit all over the place. I’m finding it really tough to communicate this with anyone though as I really don’t understand it myself. It’s easier to smile and say everything’s ok than to be a stuttering idiot who can’t explain how I’m feeling.

I’m just having to remind myself that I’m only three weeks out of major life changing surgery and so I’m bound to be a little mixed up.

I’ll get there. I know I will. I just need to take one day at a time.

Sam xxxx

Finally…

I am home.

Thank you to everyone who sent me messages, cards and gifts. Who called, texted, visited and helped us out as a family this last 10 days.

I’m exhausted and still in pain, not ready to write down my experience yet but just wanted to do a quick post now I’m back home after my pouch surgery.

Everything has gone well though recovery is tougher than I could ever have imagined.

Thanks so much to my amazing husband Timm. For updating the blog, looking after the family, home and business whilst visiting me, being on hand constantly to speak to me and care for me. I honestly don’t have the words to say just how much I love that man.

Will update more when I can. Till then, here are a few photos from my week in hospital.

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When things aren't going so well

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading

Love Sam x

Its my six month no coloniversary!

Can you believe it? It has been six months since I had my colon removed, on 3rd September 2013 I had a sub total colectomy.  Six months of having my ileostomy bag, six months of no going to the toilet for a poo, six months of no farting!!

Six months ago at this time, I was waiting on my ward nil by mouth.  I had told Timm not to come in as I wanted him to take the kids to school and wanted him to be there when I woke up after the surgery.  I sat alone terrified.  I knew it was the right thing for me to do but the future seemed so frightening, so unknown.  What would life be like with a stoma? How would my family and friend react? What would my kids think?  Would I feel like less of a woman after?

All these questions circled around my mind as I lay in that hospital bed waiting for the call.  Finally I was taken down to theatre and had just the best care and support before the op, my final thoughts as I drifted off with the anaesthetic were of laying on a beach in Australia with my sister…

ulcerative colitis surgery sub total colectomy with end ileostomy

I woke in recovery, tired, in pain but relieved to be waking up.  Timm was there, he leant over me and hugged and kissed me and though I was in this entirely alien environment, it felt ok because he was there with me.  There were issues from the surgery, concern over blood tests and infection and so I spent my first night in HDU.  One small room where my bed was in the centre, I had so many wires, tubes and bandages all over me.  I had one nurse all through the night who watched over me and kept checking, rechecking and checking again.  It was scary but I felt safe and that everything was going to be ok.

recovery from sub total colectomy and end ileostomy

I can’t believe that was all six months ago!  There have been ups and downs in my recovery but in the last six months I have felt better than I have in the previous ten years.  My Ulcerative Colitis has gone and I no longer live in pain and on the toilet.  For anyone going through the surgery at this time, just hold on in there, it is a hard slog but things will get better.

In the six months since my surgery I have been to Vietnam, on boat trips and cycled round a Vietnamese island, I have snorkelled with fish and rays in Australia and hiked the Blue Mountains.  I have gained an enormous respect for my body and my confidence has gone through the roof.  I’ve realised who my true friends and family are and seen the best in human nature in those around me, I have been supported by the kindness of others and Ive helped people going through life problems by blogging my journey so far.  I have had a realisation of the frailty and briefness of life and it has made me want to do all those things that I dream about, in my work life, home life and with Timm.  It’s made me braver, the things that scared me before suddenly seem so small and easily overcome, after all I had an organ removed and have marched on from it so how can anything else stop me?

Who knows where the next six months will take me.  Despite a great recovery so far I am struggling at the moment with a hernia behind my stoma, I do feel like this week has put me a couple of steps back in my recovery.  This has hit me emotionally as well as physically, Im frustrated that Im back on bed rest and need to learn the best way to deal with this hernia and the issues around it.

Im planning my pouch surgery with my consultant, Im also moving house, starting a course to improve my writing skills and renewing my wedding vows!  All this plus work, running our photography business, a summer tour with arts group Responsible Fishing and raising three kids!  It will be a busy year and Im sure there will be ups and downs but in the words of a true Sheffielder, it’ll be reight….

So Happy Six Month No Coloniversary to me!!

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Love Sam xx

Post Surgery check up – moving forward

Last week I went for my post surgery check up, it was 10 weeks post op and I was feeling a little nervous.  Timm and I went to the Hallamshire to meet with Mr Brown, my consultant.  He came into the room, looked at me and said “Mrs Cleasby?!” He looked at his notes and said “3rd September? How are you?”  I replied that I felt great.  He was genuinely shocked and said I looked a lot better than he would expect someone 10 weeks post colectomy to look, which was a great boost!

He went through my histology which as predicted showed severe ulcerative colitis through my large bowel, but nothing more sinister.  We also chatted about a few problems I have had, my hair is falling out by the handful which has been quite alarming, Mr Brown says it is a result of just how poorly I was before the surgery.  Im also having a few problems with my joints, especially in my hands, they believe this will go in time and again is a consequence of the ulcerative colitis.

gold boots

I rocked my gold boots at the hospital – why do I feel the need to dress up for the consultant?

I am feeling great right now, Im pretty much recovered from the surgery and getting used to my ileostomy bag.  I have had no leaks for weeks since finding the right bag for me (still using the dan sac nova 1 easifold convex) and I have been swimming, walking, going to the gym and even been to a spa.  I was really nervous that the steam room or sauna would cause my bag to just peel off but I had no issues at all!

I had my first communal changing room experience with the bag.  As most women know, the communal changing room is a fearful place.  There is always someone with a really hairy fanny that has no problem in drying themselves with one leg on the bench, there is always a super skinny woman with pert breasts proclaiming loudly about how terrible she looks in a bikini and the rest of us just trying to dry off and get dressed under a towel without making eye contact with anyone else.  Well I was nervous and initially went into the loo to change.  I emptied my bag and checked there were no leaks or any problems and then I decided to bite the bullet and change in the communal area.  After drying and putting on my underwear I realised I could do with blasting the bag with a hairdryer so my clothes didn’t get damp.  And I did it!  I think I got a couple of people having a sneaky glance, which didn’t bother me as it was more curiosity than anything else.  I helped that I was with my good friend who always boosts my confidence.

Anyway Mr Brown and I talked about how I was getting on with my ileostomy and what my options were to move forward.  My options are that I can keep my ileostomy bag permanently – this would require a further surgery to remove my rectum and anus giving me what is known amongst ostomates as “Barbie Butt” as there is nothing left there!!

barbie butt

My second option is to have pouch surgery.  Pouch surgery is also known as ileo anal pouch or j pouch surgery.  Surgeons will form a pouch from the end section of my small intestine that is then attached to my rectum.  Another ostomy will be formed whilst the new pouch heals, then in another surgery that will be removed so I would have no external stoma or bag and I would be able to poo in a ‘normal’ way.

pouch surgery

There are pros and cons to both options and my answer to Mr Brown was that I just don’t feel ready to make a decision yet.  He is happy with this and gives me 3-5 years to make the decision! After this time my risk of cancer and other problems in my rectum and anus increase and so they like to have a decision by then.  I have arranged another appointment in six months time and hope to have made the decision by then.

I really don’t know what to do for the best.  Part of me really doesn’t want to have a bag for the rest of my life but I kind of feel like ‘better the devil you know’ – there are quite a few possible side effects of the surgery that don’t sit well with me.  I am just so undecided right now that I think it would be silly to try to make such a huge life changing decision right now.  Ill look into everything in the next few months and see what I think.

Life is busy at the moment, business is booming and I am planning for our family trip to Vietnam and Australia!  We are going for almost 6 weeks to visit my sister and have a bit of an awesome adventure! Ive spent a lot of time researching travel with an ostomy and feel pretty organised and confident that all will be well.

Love Sam xx

#gettingstrong

I blogged recently about joining the gym and also swimming with an ileostomy bag and wanted to do a catch up post about the first week in my quest of #gettingstrong – the hash tag is what Im using for both instagram and twitter.

I just want to explain a little more about my reasons behind this lifestyle change.  I laugh and joke about shedding the fat and getting skinny, but I have to admit my main reason is fear.

Im scared, man!  After my surgery and during the first few weeks of my recovery I was shocked and so frightened by just how weak my body was.  I *know* it’s normal to be wiped out ofter surgery and that was explained to me but the reality of it was extremely difficult.  The total lack of control was the hardest, the inability to even walk to the toilet, the need for help in the shower and the extreme tiredness freaked me out.  Im an independent woman and Ive always done everything for myself.  I moved out of home at a young age, and then once married I spent 9 months of the year raising the kids alone as Timm’s job took him away from home so much.

post surgery ibd ulcerative colitis colectomy ileostomy

Post op

So to suddenly have to entirely rely on other people was HARD.  Timm stepped in and did so much, along with help from family and friends (for which Im so grateful) I didn’t need to raise a finger.  The first weekend after I came out of hospital Timm had to work away for the weekend and so my mum and best friend Caroline came and looked after me, they cooked, cleaned, helped me shower, changed bedding and just cared for me.

The weeks of laying in bed were really difficult, as much as I knew it was necessary to allow my body to heal, meant that my muscles became even weaker.  After the hardship of the ulcerative colitis, then the huge amounts of medication pushed into me and then the surgery itself, I have never felt so completely drained, weak and helpless.  The steroids I had been taking for months had made me gain weight and made me feel like crap.

I know that whatever decision I take in the next year, whether I keep my ileostomy bag or have the take down pouch surgery, I will have to have at least one more surgery.  The thought of this terrifies me, not so much the surgery itself (though that’s pretty scary too) but the recovery… The idea of being reduced back to a weak, out of control being is kind of heart breaking.

And so I have two options.  I can spend the next year worrying, panicking and being upset at the thought or I can take control of the situation and do everything I can to ensure that going into that operating theatre I am as strong, healthy and fit as possible.  I know that this won’t stop me needing to recover and that Ill still feel like shit after the op whatever I do, but if I can go in feeling strong, I have a better chance of an easier recovery.

This week I joined the gym, I have been swimming, been to the gym twice, once with a personal trainer, done an aqua fit class, a deep water fitness class and a Pilates session!  My ileostomy bag held up for all of the activities and I have been careful and made sure Im not straining myself too much.  All of this just 8 weeks after surgery!!

getting fit after surgery

In my gym gear – can you see my bag?

This surgery saved my life, it has improved my quality of life vastly and meant I could come off the vast amount of medication I was taking before.  In stopping the meds I already feel a million times better.  I realised that I have been taking my body for granted for so long.  Now Im missing my colon I need to use this time to start looking after myself.

And so that is what Im doing.  I refuse to choose fear.  I choose #gettingstrong

Love Sam xx