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What life with my chronic illness is really like 

Sometimes I worry what people think, I worry that they may think I’m overplaying my illness, faking it or being dramatic.  I worry that they will see me on Instagram laughing or out with friends and wonder how it is that I cancelled my plans the day before. 

I worry that people think I’m being lazy when I sleep in till 11am or making excuses when I don’t want to go out. And so I thought I’d try and explain how life is with MY chronic illness. 

Have you ever had a stomach bug or food poisoning? That feeling of crampy pain, constant diarrhoea and a concern you might not make it to the loo? Well that’s how I feel most days, for months and months now I have been going to the toilet 20+ times a day, I have accidents and to top it all off, my poo is so acidic that it’s burning open sores into the skin around my bum which bleeds and is very painful. 

I often go to the toilet 5 or 6 times through the night which means I’m thoroughly exhausted most of the time.   I have pouchitis which is an infection in my Jpouch so I feel unwell with temperatures, pain and generally being under the weather. 

My immune system is rubbish, IBD is an auto immune disease, meaning that my body is attacking itself.  Between this and years of meds that batter you down, I literally catch every single bug going.  This means I’ve had a cold and cough since October.

There are days when the fatigue and pain is too much to bear. When the painkillers don’t do anything and I just need to sleep.  I take anything from 4-16  immodium a day and codiene every day. The immodium gives me stomach ache as it attempts to slow the process of food through my system and the codiene make me fuzzy headed and sleepy. 

  
There are days when it all gets too much emotionally, I cry, I hide away, I wonder if it’s all worth it.  The never ending treatment and the feeling this could be for the rest of my life is soul destroying.  Times when I can’t find a silver lining and wish I could just be normal. 

Sometimes I simply pysch myself out, I worry so much about having an accident in public that I talk myself out of going anywhere, preferring the safety of my bedroom to the scary, judgmental outside world. 

When I do manage a day out, it comes with planning. No food the night before, codiene to help me sleep and lots of Imodium on the day to get through without shitting my pants.  It takes a mental strength to just get out of bed.  I pack supplies of meds, wipes, bags and spare underwear. 

So please try and understand, I know I sometimes appear flaky but it’s only because life is so damn hard right now. I try my hardest to lead a ‘normal’ life, to keep in touch and come to your events but sometimes it is all just too much and I apologise for this. 

Just remember how it felt when you had that food poisoning/tummy bug. Did you feel like partying, going shopping, going to work, going to someone else’s house? 

No? Well, please have patience with me. 
Sam X 

Shit happens…

“So the decision is made? I’ll book you in for another ostomy”

Yep, the decision is made. This journey that started 2 years and 2 months ago when I had my colon removed and an ileostomy formed, is coming full circle and in early 2016, I will be going back under the knife and having a permanent stoma formed.  They will remove my Jpouch and make an ostomy from my small intestine and I will once again, have a bag. Though, this time it will be a bag for life. (Not the Tesco kind…)

I am still in hospital recovering from this latest bout of pouchitis and this week I have had to make some tough decisions. Do we continue to fight fires and keep having medication, hospital stays, exhaustion and generally spending 20% of my day on the toilet? Or do we go back to the ileostomy. 

I’ve had to be quite logical and unemotional about it all, thinking in terms of quality of life, work, family and prognosis of the jpouch.  I have been listing pros and cons till the early hours of the morning, imagining life with a stoma versus life with a Jpouch and all that comes with both scenarios. I have googled my heart out and spoken to Timm, the kids and to my fabulous consultant Mr Brown. 

And I have made the decision.  I’m booked on the urgent list for a pouch excisionand permanent stoma.  There will be no going back from this, I believe I’ll have the full on Barbie Butt! I feel relief in this decision, I know it is the right thing for me.  The pouch is fantastic for some people, but for me, it isn’t working. 

Only now, as I sit on the hospital ward, the lights dimmed and only the gentle hum of machines and whispers of nurses at their station, I feel very alone and very emotional.  

This isn’t fair. 

That’s how I feel. Like a bratty toddler. That I never signed up for a life of illness and surgeries.  I don’t want to live with a bloody ostomy bag stuck to me. I don’t want to spend so much time in hospitals. I don’t want to have to make life altering decisions that seem to have two crap endings. I don’t want to worry about being a burden to my family. I don’t want to be sick. 

And you know what, I’m totally allowing myself this rant. I think I’m entirely entitled to feel shit about all this. It’s ok for me to have a cry and feel sorry for myself. Because this is all not fair. 

It’s not fair that I’m looking at my fourth surgery in three years. It’s not fair that I have this illness, these complications. It’s not fair that my three kids are now used to seeing me in a hospital bed. It’s not fair that my husband has the options of a wife who shits herself or a wife with an ostomy bag. 

I have no positive spin today. No fun little meme with a quote by the Dalai Lama. 

Nope, I have pain. Raw, emotional, angry pain.  And that’s ok. 

Sometimes life throws absolute crap at you, we have to deal with rubbish situations that are difficult and make you sad and angry. Sometimes shit happens.  And it is completely fine to not be ok with that. 

Accept your sadness. Revel in your anger. Acknowledge your pain. 

Tomorrow is a new day and we can figure out the positive shit then… 

Sam x 

Back in hospital

Hello you lovely lot. 

Firstly thank you so much for all the beautiful, supportive and caring messages I have received on social media, email and text. I was feeling very sorry for myself and your words really brightened my day. 

So I am back in hospital, I saw Mr Brown in clinic on Tuesday and he recommended I was admitted for some IV antibiotics, some fluids and tests. 

I’m still here and also on some pentasa foam and another drug to try and slow down my output. I’m still going to the loo 15+ times a day and its thoroughly exhausting. 

 
My blood tests have actually shown that my inflammatory markers have gone down which is good, but also a little concerning that I’m still feeling crap. I’m waiting to have a pouchogram which is an X-ray test where they fill my pouch with a fluid then X-ray me to see where it goes. 

I love that just when you think you’ve had the most embarrassing tests known to man, you then have to crap out X-ray fluid whilst a team takes images of you… The joys of IBD, eh?! 

 
But anyway, I have news. 

After much discussion with Timm, the kids and Mr Brown, I’ve decided that this pouch is just not for me. It’s been 20 months and 3 bouts of pouchitis, plus so much time feeling exhausted, ill and unable to cope. Going to the loo 15-20 times a day. I have concerns about the amount of drugs I take every day and the effect on my body and liver. And now the issues with my prolapse.  
I was so well with my stoma. I know it’s not ideal, but life isn’t ideal now. It’s about quality of life and currently my quality of life isn’t great. 

  
Mr Brown has put me on the list for January and so 2016 will be a new start with a new stoma. 

I feel relieved in one way as I just want to be well. But in another way, I’m just done in. I am feeling pretty sorry for myself and wondering when I get a break.  I’m so fucking fed up of this illness, it’s taking so much from me. It causes so much stress and makes life difficult for my family and friends. 

Poor old Timm is dealing with the kids, work and home life as well as my mental rantings and emotional breakdowns. I’m so bothered about being a burden to him that I’m actually being MORE of a burden by stressing about it. 

  
He brought the kids to see me which brightened my mood. I spoke to them about the stoma and they immediately said  “do it mum!”  I asked why and they said that when I had my bag, I was really well and we could do everything normally. They said my pouch means I’m always poorly and sick in bed.  This makes me so sad. But firms my belief that this pouch isn’t right for me.

I know it changes some people’s lives and is perfect for some. I don’t want to put anyone off Jpouch surgery because of my experience. As much as its not good for me, I am glad I tried as otherwise I would have always wondered ‘what if’. 

So there we go.  I shall update soon and as always you can find me on Facebook Instagram and Twitter

Sam 

Pouchitis. Still. 

So I still have pouchitis. For those who aren’t sure what this means, pouchitis is inflammation in the pouch that was formed from my small intestine.

“Patients with pouchitis typically present with bloody diarrhea, urgency in passing stools, or discomfort while passing stools. The loss of blood and/or dehydration resulting from the frequent stools will frequently result in nausea. Extreme cramping and pain can occur with pouchitis.” (Source: Wikipedia)

This is my third bout since my pouch was formed 19 months ago. The first two were treated quickly with antibiotics, symptoms were relieved within a couple of days of starting the meds. This time is different, I’ve had one lot of meds that did nothing, I’ve then had a pouchoscopy (a camera into the pouch) and biopsies taken. These tests show I still have pouchitis. And so now I’m on my second lot of antibiotics.  I also take fluconazole whilst I’m on the antibiotics to ward off the dreaded thrush.

I’ve been on them a couple of days now and not feeling any better but I’m hoping that things will improve. I’m in pain and so exhausted!!! This teamed with my other problems are really getting me down. We have a ton of stress at the moment, house problems, family issues, car problems, work stress. Everything is getting a bit much.

But I remind myself of perspective and know that in the grand scheme of things, all is well.  I have my husband and kids and some bloody wonderful friends and family around me and I’m going to my fall back Sheffield stance of “It’ll be reyt!”

Sam X

Pouchitis again

Sorry I’m not about much right now, I’m getting over another bout of pouchitis and its knocked me quite a lot.

Pouchitis is when an internal pouch becomes inflamed. It is a common complication in people with an ileo-anal pouch or continent ileostomy.

Symptoms of pouchitis include:

diarrhoea, which is often bloody

abdominal pains

stomach cramps

a high temperature.

So after a trip to the hospital, I’m on a course of antibiotics called Ciprofloxacin that are definitely helping with the symptoms but are making me very dizzy and nauseous too. I’m also taking fluconazole to counteract against the dreaded thrush that I get with any antibiotics now.

I’m back at hospital on Tuesday for a scope and to reassess whether to keep going with the meds.

Sorry this is so brief but I’m struggling to put sentences together right now!
Sam X

Feeling like crap but carrying on regardless

It’s ironic that today on World IBD day, I spent the morning at the GP surgery. For a week or so I’ve not felt quite right, increased toilet visits, urgency and a couple of accidents. I have also been struggling massively with joint pain.

I had a Twitter chat with IA Support (isn’t social media brill?!) who suggested possible Pouchitis and recommended I visit the doctors. I put it off as my anxiety over being taken back into hospital kicked in and I wanted to hide from any medical professionals but then yesterday my son held my hand and it hurt so much I had to let go.

I realised it was probably time to call the GP…

So with a temperature, bad joints, increased poos with urgency and blood and feeling like I have the flu I am so fatigued, my dr thinks the same and I have some big boy antibiotics to try and kick this bout of pouchitis in the ass.

Yet it is world IBD day which means though I’d rather be in a duvet den I am actually on the bus into Sheffield ready to go on BBC radio to talk about IBD!

Because though I am a BIG fan of listening to your body and stopping when you need to, today is just too important to me to cancel. I do everything I can to keep raising awareness, to #stoppoobeingtaboo and to help as many people as I can. And I do it all whilst fighting my own battles.

I know today I can reach a large audience of people with IBD, as well as carers, family and friends of those with Crohns or Colitis. And so I will carry on regardless because it means EVERYTHING to me to make a difference.

This shitty disease that keeps knocking me down every time I am feeling better. It has to be for a purpose. I have to believe that my life isn’t a struggle for no reason, and I choose to believe that reason is for this Sheffield lass with a big gob to help others.

And so Ill keep going today, through running to the loo and grinding aching joints and I will make a difference.

(Let’s not even DISCUSS my day trip to London tomorrow for business meetings!!!!)

Luckily I am going on holiday at the end of this week with my lovely Timm and the kids to see my fab in laws in Lanzarote. Not great timing as I’m worried about ruining the trip but at least I have some down time and can relax and rest.

Love Sam x

Pouchitis. Suspected.

No confirmation as yet through my blood tests if my inflammation markers are up and obviously I’ve not had the camera test yet but man, I’m feeling pretty dreadful. I’m on the loo 10-20 times a day and I’m so drained and exhausted.

Just so it’s clear, I haven’t been admitted to hospital, I had a few messages worrying that I was inside again. I’m being treated as an outpatient but my doctor is pushing it through as an urgent case and so fingers crossed it will be sorted soon.

I think the tiredness is the worst part. I’m up several times a night and so I’m so exhausted. I also feel like this is a big step backwards in my recovery, mentally I’m feeling a little battered. I’m trying to push through physically and emotionally but to be honest I feel pretty damn rough.

The thing that floods back as soon as I start to feel ill is guilt. I know I shouldn’t feel bad, but my illness is such a burden on those around me and I fear the day that everyone has had enough. I worry my friends and family will get sick of me being sick.

I know the feeling as I have had enough of it. Because that’s the other feeling. Self pity. Such an ugly feeling and one I generally despise but right now I feel sorry for myself. Poor me, poor my arse…

Sorry this post is such a bummer. I actually do know that I’m a lucky cow and have loads of lovely things in my life. I’m still on a high from our amazing wedding renewal and we have a honeymoon booked! An actual honeymoon with just me and Timm, no kids, no work! So I need to concentrate on getting better because in three weeks come hell or high water, I WILL be off to Lanzarote with my boy!

I think the emotional and mental side of living with a chronic illness is often overlooked. On the outside I may have painted my face with makeup and a smile, but inside it is a struggle. Logically I know I need to just buckle down and get through this dip in my recovery. I need to count my blessings and try and find the positives in life. And I do that. But sometimes you just need to lay in a dark room under a duvet and cry like a baby. Perhaps today is one of those days.

I’ll leave you with a laugh with this photo that my mother put on Facebook past night of my hen night… I thought Id escaped without any reaaaallllly embarrassing photos but it seems she was saving them up for now!!! Here’s me looking more than slightly squiffy…

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Love Sam x

Pouchitis

So for the past two weeks I have been bleeding, Ive kept it to myself as we had our wedding renewal on Saturday and I just wanted the day to be about Timm and I, not about my illness.  Our whole lives had been about my illness for the past year and so I kept my mouth shut and just dealt with the symptoms.

After the wedding I got in touch with Mr Brown, my consultant and today I saw him in clinic, because of the quite heavy bleeding and increased pooling along with a hefty load of fatigue he suspects I have pouchitis.  I had bloods taken today and Ive been booked in for an urgent flexible sigmoidoscopy.  Im pretty gutted and feel like my recovery is being hindered once again, but Im glad my doctor takes it seriously and is getting me sorted asap.  The treatment is a course of antibiotics but we are waiting for confirmation that my markers are up from the blood tests before starting that.

Pouchitis is when an internal pouch becomes inflamed. It is a common complication in people with an ileo-anal pouch or continent ileostomy.

Symptoms of pouchitis include:

  • diarrhoea, which is often bloody
  • abdominal pains
  • stomach cramps
  • a high temperature

Im trying to keep my chin up but to be honest I do feel a bit down about it all.  After the massive highs of the wedding renewal it feels like a real bump back down to earth.  I spent the whole wedding day rejoicing on just how far I have come, thinking about how there were points when I was really ill and in hospital that I couldn’t imagine making it to that day.  But all the while I was thinking about this bleeding and worrying about the causes and feeling set back.

wedding renewal sheffield rock n roll

Pouchitis is a common problem for people with a pouch and so Im relieved that its probably just that but in this recovery it seems to be two steps forward and one step back.  I need to remember that though this is a step back, I am always moving forward and things are getting better.

I have been given picolax to prepare for the flexible sigmoidoscopy which seems pretty scary.  I have of course had so many camera tests and so had all the laxatives before but now I have no large bowel, I can’t imagine what the results will be!! I had a flexi sig last time I was admitted to hospital and though I was terrified before I went in, it was actually less painful than I imagined.  Im not happy about having to have more tests but I am glad it is getting under control and I feel heard and cared for.

Ill keep you all updated!

 

Sam x

 

PS My AMAZING ‘prickly tits’ dress is from Syd and Mallory in Sheffield.

Back to hospital

So yesterday morning I saw Mr Brown in clinic and after examining me, he thinks I have pouchitis. He said I need antibiotics, fluids, blood tests, X-days and a pouch scope. And so I was admitted back to the Northern General.

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I had blood tests, X-rays, a night on the wards and a pouch scope and though my white blood cells were high there was not much else showing any problems and so I have been sent home with a course of antibiotics to knock anything nasty on the head.

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My first jpouch scope was a lot easier than anticipated. I was TERRIFIED going in, I’ve had plenty of colonoscopies and flexible sigmoidoscopies but this is my first since getting the pouch. I didn’t have sedation and it was all over in 10 minutes. It was a walk in the park compared to a full colonoscopy, a little uncomfortable and the worst thing was the air pumped in. I had a bit of gas and air but it was all fine.

Releasing (ahem!) the air was interesting… It’s already loud enough when I go to the loo now, expelling a load of air that been pumped in sounded pretty fucking amazing. If I weren’t so embarrassed I’d have called out to the rest of the ward “DID YOU HEAR THAT?!!!”

I saw the inside of my pouch which was odd but good and Mr Brown said it looked ‘beautiful’ – I had no idea what the appropriate response up that was so I thanked him… Then giggled.

He is my favourite doctor, it’s always a pleasure to see him and I trust him implicitly. Though I’m still concerned as to the cause of the pain and struggle to poo, I’m happy that he wouldn’t send me home if were worried.

So I’m home and hoping that the antibiotics will make me feel better. I’m still having quite a bit of pain and will have to wait and see how the crapping goes as I haven’t eaten in 24 hours so haven’t been.

Apologies for not replying to any messages (most only came through once I got home!) The internet signal in that hospital is ridiculously bad. It’s like the dark ages!!!

Thanks so much for all the love

Sam xxxxxx