Posts

Hernia surgery update

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

When the dark cloud hits…

I don’t suffer with depression.  People I know who do, have educated me about the soul crushing symptoms of true depression and so I don’t want you to be under any impression that what I’m talking about here is the same as that.  But sometimes, without warning, I get this dark cloud that floats along and then sits heavily on my shoulders.  It is like a deep sadness and it is hard to shake.

My blog is about positivity and finding the silver lining in all situations, and I do genuinely believe in that.  I practice what I preach, I try to deal with the hand dealt to me in the best way I can.  But sometimes that makes it difficult for me to admit when this cloud approaches.

Things aren’t bad at the moment in my life,  I was on the radio and had a brilliant interview about Ulcerative Colitis and ostomies.  I had some fantastic feedback from this and have been invited back to be on Radio Sheffield again soon.  I went to London at the weekend to do a talk at the Sunday Assembly about IBD and body image.  I have a few more events coming up and I’m off to the gorgeous Clumber Park Spa this week to review it, a day of relaxation is just what I need right now!

So why is it that I feel like I could cry at the drop of a hat? Why do I feel so sad and low?

I think most people have the odd ‘off day’ and I am sure that is all this is.  I have had a really hard year and have had to overcome a lot and so I accept that I will have times when it is all a little overwhelming.  I think it is really important to learn to accept this, to be ok with having moments where I want to build a duvet fort and hide from the world.

I am very good at painting a smile on, this is both a good thing and also a curse.  Despite how easy I find it to share my feelings through writing words, I sometimes struggle to speak those words to the people closest to me.  I find it easier to make a joke and act the fool.

But sometimes the weight of that painted smile becomes a heavy cross to bear.  The feelings of sadness, guilt and anxiety swirl away just under the surface.  I feel overwhelmed.

My pouch is still playing up, new meds made me into a zombie and so it is back to the drawing board.  Oh, and my hernia is back.  The only treatment is surgery which I just can’t face right now so I am going to just have to deal with it till it gets too painful.

I feel like I have been through so much this year and I hoped that I would feel better by now, I was told it was a long recovery period from the pouch surgery (18 months to 2 years) but I thought I would be doing ok.  Instead I feel like I have taken a big leap backwards.  I am sick and tired of being sick and tired.

Timm is, as ever, being awesome.  He tells me to rest and leaves me to sleep in whilst he gets up with the kids and sorts them for school.  He then goes and does a full days work before heading home to look after kids and me… I can’t help but feel sorry for him.  He deserves better.

When I say this, he gives me a hug, then tells me to stop being a dickhead.

So there it is.  My whinge is out.

I am trying hard for normal service to resume, so please bear with me.

 

 

Love Sam xxxx

 

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

Feelings about surgery

I am struggling to write this post.  I just don’t seem to be able to find the words, which is an odd feeling for a loud mouth like me.  I am due to have my pouch surgery in the next 5 weeks though I don’t have a date yet, and Im terrified.

I was scared before the last surgery but I was so ill that I knew I had little option but to have my bowel removed, but this surgery is different.  I am making the choice to have this one, I could choose to keep my ileostomy forever and the idea is tempting.  Now I am used to the bag, it causes few problems day to day, my hernia is a problem but that could be fixed and I could keep my bag.

sam cleasby so bad ass ulcerative colitis blog sheffield

But I am choosing to go for the pouch surgery to give myself an opportunity to have a more normal digestive system.  The surgery means that my small intestine will be formed into a pouch and connected back to my rectum so I will no longer have a bag and will go to the toilet ‘normally’.

I say ‘normally’ but it will never be back to normal again.  The pouch will be a lot smaller than a colon and so can’t hold as much, so I’ll be going to the toilet 5-10 times a day.  Also the colon takes a lot of the liquid out of food which is why normal poos are reasonably solid, as I don’t have a colon, my poo will be liquid all the time.  The colon also neutralises a lot of the stomach acid from our food, with my bag if I get the poo on my skin it can burn and make it really sore.  I will have this same issue with my bum when I have the pouch getting the dreaded “butt burn”.

The surgery itself is a long one, 6-7 hours I have heard and then Im having the hernia repair as well and so I am really nervous about the actual surgery and being under anaesthetic for all that time.  I have huge fears that something will go wrong and I won’t wake up.

The recovery is meant to be very difficult.  Ill have at least ten days in hospital as I am having the one step pouch surgery which means I won’t be allowed solid food for 10 days and all liquid has to be measured in and out…

I haven’t used my bum muscles for over 6 months now and so that combined with the new pouch and my intestines being forced to perform a job they were never meant to do means there is a good chance of incontinence in the first few months.  I am embarrassed to talk about this but this blog is meant to be about honesty I suppose.  There is a chance Ill have to wear some kind of sanitary device at night to keep clean.  Im devastated about this possibility.  I literally feel sick at the thought of it.  As I write this I am unsure whether I can hit publish as Im so upset about it.

Full recovery can take 12 -18 months, this is the length of time it can take for the pouch to be at full working order.  It is going to be a long hard slog, I am trying to prepare friends and family for the difficulty of my recovery as I feel that people are expecting me to bounce back from this surgery as I did with my bag but the fact is that this recovery is going to take longer and affect me a lot more.

I feel quite a lot of pressure actually.  Pressure of others expectations, which I know is daft and what will be will be, but I do worry that people are going to be shocked at how tough this op is to get over both physically and mentally.

Im scared.  Terrified to be honest.  Im scared that I won’t be able to cope, that Im going to be house ridden for months and months.  Im scared I won’t be able to deal with it emotionally and mentally as well as physically.  Im quite good at being tough, but Im not so good when I feel out of control.  Im worried I am making a mistake, should I just keep my bag forever? Logically I know that this is what I want to do, I know that if the pouch recovery goes terribly wrong that I will be able to go back to a stoma and bag, but if I choose to keep the bag now there is no going back as the removed everything in the rectum and anus and sew it all up, so I want to at least attempt to live with a pouch.

Timm is, as ever, being amazing.  He listens to all of my worries and we talk through everything, he tells me he will be there every step of the way.  I suggested we sleep separately whilst I recover and he has just plain refused, which I am secretly pleased about.  I just felt that I should give him the option of sleeping away from me during the first tough months but he says we will always share our bed no matter what.  He talks with me about coping strategies and if all else fails, he makes terrifically sick jokes that make me laugh.  A lot.

sam cleasby so bad ass ulcerative colitis blog sheffield

So there it is, this is how Im feeling right now.  Shaky, emotional, frightened yet oddly looking forward to the surgery just being over and done with.  I will, of course, be blogging as much as I can through my treatment.  Please keep commenting, emailing, calling, texting and messaging me.  Your support means the world and I feel properly blessed to be able to share my journey with you all.

Much love

Sam xx

Things I hate about IBD

Although Im a big believer in positivity, I also think it is healthy to expel all the things you hate, to write them down and cast them out and so I though Id do a list of things I hate about IBD, ileostomies and chronic illness.  With my surgery looming I am possibly not feeling at my most upbeat so bear with me…

I HATE not being a ‘normal’ person.  Not in the personality stakes as Im ok with being a bit odd and weird but in the health stakes, I HATE that I can’t just have normal bodily functions, that I have to have medication or surgery or different treatments to just function the way everybody else does.

I HATE being flaky.  By this I mean backing out of plans at the last minute because I don’t feel well, being unable to fulfil responsibilities whether they are family, work or friendships.

mr grumble hate ibd

I HATE that I can’t plan things in advance due to not knowing how I will be health wise on any given day.

I HATE that I feel weak.  That sometimes I can’t do the things I want to do and I have to ask for help.

I HATE that my illness becomes all I talk about.  Sometimes the last thing I want to do (believe it or not!!) is talk about my arse.

I HATE that my kids see me ill and unable to do the things I need and want to do.  I HATE that they miss out on things because of me.

I HATE that my illness and treatment upsets those around me.

hate IBD

I HATE that sometimes, no matter how confident I am, that slight rustle of my bag can, at times, make my self esteem plummet.

I HATE that my husband becomes my carer.

I HATE that I feel exhausted and broken a lot of the time.

I HATE that sometimes my disease makes me selfish, I am so snowed under by how the illness is affecting me that I am not aware of the people around me.

I suppose the key thing in all those things is the word ‘sometimes’.  Life isn’t always shit, most of the time I can overcome anything! But ‘sometimes’ these things get to me and it is easy to think life sucks.  When I feel like this I let myself have a good old wallow, because we do need to lay and weep eating our own body weight in ice-cream whilst watching a box set of My So-Called Life (or is that just me?) then I make myself think of all the awesome things in my life and I suck it up buttercup and move forward.
Love Sam x

Feeling emotional – Stoma and Ileostomy worries

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

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

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

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

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

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

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

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

talking through problems

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

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

99 problems

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

 

Love Sam xx

 

Feeling unattractive

Today has been a bit of a write off, after last nights abysmal sleep I spent the day feeling exhausted, emotional and just a bit crap.  There is no rhyme or reason to my emotions at the minute, sometimes Im feeling fantastic, really positive and raring to go, at other times I am feeling low, Im teary and finding things tough.

Today I am feeling very down.  I look in the mirror and see my scar and the bag and I feel so unattractive.

Before the surgery I was kind of upbeat and didn’t think I would feel bad about my appearance, I think after being ill for so long, vanity was the last thing on my mind.  But now the dust has settled and life is going on, it feels like an issue.  Im very conscious of smell – I worry that I smell of poo.  Timm tells me in all honesty that I don’t, and logically I know I don’t, the bags have filters and the output actually doesn’t smell like poo anyway!  I think its just that I am aware that I have waste sat in a pouch on my stomach and the fear of it sets in.

At times when Im feeling down, I can’t imagine how Timm can bare to be near me.  Surely it must put him off? He can’t really want to hug me or lay next to me in bed? With my gurgling stomach and bag of poo, why would he want to put his arm round me?  These feelings are tough.  My eyes are filling with tears now because those thoughts make me feel like Ive been punched in the gut.

Its hard to look in the mirror at the minute, Im both intrigued and disgusted by my new body.  Having to clean my skin and stoma means touching it and being aware of changes to my skin, but there are times when Id love to just cover it all up and not look at it, empty it, clean it.  There are times when I just want to stick my head in the ground and pretend its not there.

I worry Timm will not find me attractive any more, after all, if I don’t then how could he?  We had a chat today after I cried a LOT.  He is a wonderful fella you know, he tells me that this will never affect our relationship, that he loves me and everything will be ok.  He says all the right things and he makes it better.

The kids are honest.  Im glad of that but its still hard.  They tell me its ‘weird’ and that they don’t like seeing my stoma, they say that it upsets them and avert their eyes if they are with me when I don’t have my bag on.  We have always talked openly and honestly with the kids and the same goes with my surgery.  Its been a tough few weeks for them and Im so proud of their resilience and courage.  I can’t imagine how scary it is for a child to know their mum is having an operation and I was away from them for two weeks!  But I do feel sad, I feel like the bag is a barrier between us, they don’t like it and so they’re not as likely to sit on my knee or cuddle me and that is hard.  But I won’t push them, they need to deal with it in their own way at their own pace.  Im sure as time goes on, they will get used to it and it will just become normal.  Its such early days so I am sure things will get better.

Things WILL get better, I know that.  I will get used to my bag and it will become more normal for us all.  I keep threatening to do a quote a day on my bag a la Matt Helders (Arctic Monkeys) drum skins…

matt helders drum skins

Im thinking if I have to wear this bloody thing, then I may as well rock the shit out of it!  Im trying to think positively by looking at how I can still feel like me through all of this so Im looking at clothes that will work better with a bag, ostomy covers and even some nice underwear and swimwear.

I struggled with whether to post this today.  I do not want to come across as needy or whingy.  Or as one of those girls who say ‘oh Im ugly’ so that others say ‘noooo you are SO pretty’ – you know the type!  That’s not what this is about.  Anyone who knows me, knows Im a fairly confident person.  But I thought it was important to chart the negative feelings that come about with having this surgery.  For others who are going through this to know that there are other people who are feeling that their confidence has taken a bit of a thrashing.

I refuse for this to be an entirely self pitying post, so thinking of the positives…

It was our son Charlie’s 13th birthday party yesterday, Timm planned it all and made him a BMO cake from Adventure Time and it was fab, he just had some friends over to watch a film, Timm set up the projector in the living room so it was like a cinema and made a ton of pizzas and popcorn.  A lot of Charlie’s friends are budding musicians so they brought their guitars and all had a bit of  jamming session.  It was a lovely night made better by the fact that Charlie said we weren’t an embarrassment to him… High praise from a teenager!

BMO cake adventure time

Timm and I are continuing to plan for our trip to Vietnam and Australia in December – Im so excited.  I can’t wait for us all as a family to experience so many new things and it will have been 14 months since I saw my sister and her family so it will be fantastic for us to be together again.  The fact that I don’t have to worry about a flare up just makes it all so much better.  I joined the Ileostomy and Internal Pouch support group and have been looking on the forums for travel advice.  I got a Travel Certificate which explains to airport security that I have an ileostomy, you can get one either from your stoma nurse or the IA using the link above.

Just three more days till I am off the steroids! Woohoo!! I am hoping that once I have finished the steroids that problems such as insomnia and mode swings will stop too.  There’s a good possibility that my down mood today has been magnified by the meds, so thinking of being steroid free is a real positive thing for me to look forward to, I have been on them now for almost three months.

Im sorry that todays post is a bit of a pity party.  My negative feelings today have been really overwhelming, I have cried a lot and just felt really sad.  I haven’t been out of my pyjamas and barely made it out of bed.  But I know that there will be good days as well as bad and as rubbish as today has been, I have got through it and tomorrow will be a better day!

Thanks for reading, please feel free to keep sharing the blog with anyone you think it could help.

Love Sam xx

How Im feeling today

Firstly thank you so much for the wonderful response to my last blog post about Why Im Choosing to Have my Bowel Removed. I had so many messages and emails of support and so many from people facing their own battles. Every message is so greatly appreciated.

Today Im writing about feelings. About how I feel dealing with Ulcerative Colitis and how it affects me mentally and emotionally.

On Thursday my consultant upped my steroids again, I had tapered down but started flaring again. The meds don’t seem to be working. Im feeling worse and worse each day… Im waiting till 2pm so I can call my specialist nurse for advise on what to do next.

So here’s what Im feeling today…

ulcerative colitis feelings

Fear – Im afraid of what is going to happen to me – afraid of the medications, the thought of surgery. Im fearful that people will get fed up of me always being ill.

Sadness – Man, I feel so sad right now. It’s a sadness so deep it feels like a punch to the gut. Im VERY good at pasting a smile on my face and being the silly, happy joker but this sadness is creeping right through even my fakest of smiles.

Frustration – Im frustrated with my body, I wish I had a magic wand that would just make me not be sick…

Envy – I suppose this leads on from frustration. I envy people who are well and just wish I could have a normal body.

Anger – Im angry that this is the hand I have been dealt – I want to shout like a toddler ITS NOT BLOODY FAIR!

Anxiety – My anxiety levels are sky high, I lay in bed at night worrying about EVERYTHING.

Confusion – With all these other feelings going on it is probably not unusual that Im confused. At times I feel like I just want them to operate. Today. Then other times Im terrified and wonder if there are any other options. Should I be looking at a raw juice diet? What if I were more spiritual and started meditating and doing yoga every day? Perhaps if I could just lose weight it would be better? Or maybe it’s because I am stressed? Logically I know that I have a disease and this disease needs treating with medication, I didn’t do anything wrong to get this but at times I can’t help but blame myself.

Guilt – This is my biggy. I feel so guilty. All the time. I feel guilty that Im not the mother I should be because Im ill in bed. I feel guilty that my kids worry about my health. I feel guilty that the steroids make me have flashes of anger and I tell the kids off when they probably don’t deserve it. I feel guilty that my husband doesn’t have a ‘normal’ wife. I feel guilty that my friends and family have to help me out with childcare. I feel guilty that Im not pulling my weight with the business because Im laid in bed. I feel guilty that my husband has to take on both our roles. I feel guilty that I ruin days out because I need to be somewhere near a loo and then spend most of the day in the bathroom. I feel guilty that we can’t plan to do things because we don’t know how well I’ll be. I could go on forever… Guilt is a shit feeling.

Love – I thought Id end on a nice feeling. My husband is fab, he deals with my illness so well. He doesn’t pander to it, or treat me like a sick person. He takes the piss out of me. He makes me laugh. He sits with me when the insomnia kicks in and listens to my random questions about giraffes at 2am. He sends me to bed when he sees I am struggling. He takes on the roles that would usually be mine without complaint. He pinches my bum and tells me Im beautiful even when we both know I look like shit. He sits in bed with me and we play dice for hours. He tells me everything will be ok. He comes to my appointments and makes sure my voice is heard. He say ridiculously inappropriate things and makes me howl with laughter. He makes me feel better. He loves me.

Thanks for reading xxx