Posts

J Pouch surgery

So this morning I had an appointment with my lovely surgeon Mr Brown, it was an 8.30am appointment and so with it being half term we got the kids ready and set off at 7.30.

We got to the hospital, parked and was in the clinic for 8.15. The receptionist said she couldn’t check me in as she was medical and I had to wait for the surgical receptionist to get there. At 8.35 she arrived and then told me we were at the wrong hospital!!!

I showed her my letter that said it was at this hospital and she said ‘oh yeah, we sent the wrong letter!’

We then had to drive across Sheffield in rush hour traffic to get to the other hospital right on the other side of the city and just wait to be fitted in.

I could have cried! You work yourself up for these appointments, worrying about what the outcome will be and to then face more travel and time is a total pain.

so bad ass sam cleasby ibd awareness

Anyway we eventually saw the surgeon. Timm came with me for moral support and to remember the questions I always forget I want to ask and the answers given that drift out of my head before I reach the lifts.

Mr Brown is so nice, he’s my favourite doctor and always makes me feel better. We discussed the hernia that I have developed (Ill be doing a separate blog post about that) and then we talked through the pros and cons of pouch surgery.

I have to have a test done to check the muscle strength in my arse… Lovely. Basically they put a tube up your bum and it checks the pressure and sensitivity of your butt muscles. If they aren’t strong enough, it’s a good indicator that post pouch surgery you could be incontinent.

I’ve never had issues with that before so were all hopeful it won’t be an issue. Once that test is done, he is happy to go ahead with the surgery. Due to work and family commitments we have asked for the surgery to be done at the end of September or beginning of October.

Our photography business The Picture Foundry is sooooo busy at the minute, I also work with arts collective Responsible Fishing and this summer is crazy busy for us with creative workshops for children, arts installations and festivals.

I also am beginning to get busy with presenting talks on self esteem and body image and working with teenagers on a whole host of projects. I’m writing a lot more and got a few guest posts on blogs, magazines and even a bit of copywriting and blog writing for other companies on the go.

Oh yeah, and I’m moving house and renewing my wedding vows!!! So I have just a bit on my mind right now.

But come October things will calm down a bit and I can afford to have the time off work and timm will be less busy and able to look after the kids and me.

so bad ass sam cleasby ibd awareness

So the surgery…

colectomy and ileostomy diagram

The first picture is a normal digestive system, the second is after a colectomy and showing an ileostomy.  Im currently at the second picture stage.

J-pouch diagram

This is what the digestive system looks like after j-pouch surgery. You can see that the entire colon has been removed and that only the small intestine is left.  The end of the small intestine currently forms my ileostomy, during pouch surgery the surgeon constructs a pouch out of the small intestine by folding it up on itself and making it into a reservoir.  This is then attached to the anal canal.

This is called pouch surgery or ileo-pouch anal anastomosis or IPAA… Also known as J pouch, Internal Pouch or ileo-anal pouch.

After this surgery I will no longer have my stoma or ileostomy bag, my waste will go through my system and then be stored in the pouch, because I still have control of the muscles in my bum I’ll be able to hold waste and pass it normally into the toilet.

There are a few issues surrounding pouch surgery, one is that as the pouch is no where near as big as my large intestine was, Ill need to go to the toilet quite a few times a day.  Most people after everything is settled go 4-6 times a day or whenever they pee.  This may seem like a lot to someone without IBD but when I was having a flare of of Ulcerative Colitis I could be going 20-25 times a day with urgent, bloody diarrhoea and painful stomach cramps.  Currently with my ileostomy I go to the toilet and empty my bag around 5 times a day plus once or twice during the night, so this part doesnt bother me too much.

Other problems can be butt burn… basically, the large intestine neutralises your poo, when you don’t have that, the waste that leaves your system is quite acidic.  Currently with an ileostomy if I get waste on my skin through leaking, it can burn my skin and leave it really sore.  So after pouch surgery that same waste will be coming out of my butt.  Hence the butt burn.  Using a barrier cream and baby wipes is told to really help with this and apparently the skin soon toughens up and learns to deal with it!

Pouchitis is inflammation of the pouch, it is treated with a course of antibiotics.

Mr Brown would like me to have the one step surgery.  This means that the pouch will be formed and connected in one step, Ill wake up without an ileostomy.  It requires at least 10 days in hospital, during this time I will be on a liquid only diet and have a tube placed into the pouch that will irrigate it three times a day.

The alternative is the two step surgery in which the pouch is formed and attached, but another ileostomy is created further up the digestive system to divert waste from the pouch till it is full healed.  Then after a few weeks, the second surgery is performed to close up the ileostomy and the pouch begins to work.

There are risks to both, as with any surgery.  The one step is quite a tough recovery but I trust my doctor and having researched a lot I am happy to go with the one step. (I think!!!)

There are risks associated with fertility, but as I already have three kids and Im definitely not planning any more this isn’t a problem for me.  Other potential problems are internal leaking which can lead to all manner of bad juju, incontinence, abcesses, fistulas and all manner of other scary stuff.

I really want to go into surgery as informed as possible, its so important to me to feel like I know exactly what Im getting into BUT I have just spent the last hour terrifying myself by reading forums of people with pouches.  I need to remember that people are more likely to write about bad experiences than good ones.  There are always complications and problems possible with any surgery, its not good to get caught up on every single what if.  Ive done my research, spoke to my surgeons and specialised nurse and I *think* I have made up my mind.

Its not an easy decision.  My ileostomy is now healed and I have very few issues with it, I eat pretty much what I want with only a few exceptions and my life is a million times better than before I had surgery.  So it does feel like a risk to have another surgery that could possibly make things difficult again for a while.

They say it takes around 18 months for your body to become used to the pouch.  Thats a bloody long recovery time, but the chances are good that my life will be better and I won’t have the ileostomy bag any more.

As for success rates of pouch surgery, the generally accepted figures are these…

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

So I have an 80% chance that things will be fine.  I need to remember this when Im stressing out and crying because Im reading yet another forum with people screaming their woes.

Im feeling quite stressed about the whole decision process, but Im lucky to have a fab husband to support me and a great doctor who in knowing my worries has given me his email address so I can talk any concerns through direct with him.

Thanks for reading

Sam xxx

A to Z of IBD

When I talk about IBD Im often faced with blank stares and so here is my A-Z guide to Inflammatory Bowel Disease… Please remember that I am not a trained medical person and these are my opinions only.  Always speak to your GP, doctor or nurse about any worries or concerns you have. xx

A is for Ass – IBD covers both Ulcerative Colitis and Crohns and is a disease of the digestive system, Ulcerative Colitis is a disease of the large intestine whilst Crohns affects anywhere from the mouth to the anus.  They cause diarrhoea and bleeding and so sufferers have to deal a lot with their ass (or arse if you’re from the UK) – My site name came from my nearest and dearest regularly asking me ‘how’s the ass?’ and my reply being ‘I’m so bad ass right now’

bad ass

B is for Bowels – Your bowels or intestine go from your stomach to the anus and consist of the small and large intestine, the small intestine begins at the duodenum, which receives food from the stomach, the duodenum transmits food to the ileum.  The large intestine consists of the colon and rectum.  The colon connects to the rectum, and finally the anus.  IBD can affect all the parts of the bowel and causes pain, cramps, bloody diarrhoea.

stomach intestine anus diagram

C is for Colectomy – A colectomy is the name of the surgery that I had in 2013 and consists of the surgical resection of any part of the large intestine.  I had a sub total colectomy which means they removed all of my colon apart from the rectum.

C is also for Colostomy – Most people have heard of a colostomy, which is a surgical procedure in which a stoma is formed by drawing the healthy end of the large intestine or colon through an incision in the abdomen and suturing it into place.  This allows waste to leave the body and be collected in a bag.

ulcerative colitis quotes

D is for Diarrhoea – not the nicest thing to talk about but one of the biggest symptoms of IBD.  Imagine that time you got horrific food poisoning or the worst stomach bug ever, you know that one time when you couldn’t control your bowels and it felt like an alien was about to burst forth from your stomach… Remember that? Yeah, thats what IBD diarrhoea is like.

E is for Endoscopy – Endoscopy plays a key role in the diagnosis, management, and surveillance of IBD. Because there is no single test that can diagnose IBD, endoscopy is useful in establishing the diagnosis, distinguishing Crohn’s disease from ulcerative colitis, defining the extent of the inflammation. In established IBD, endoscopy helps define the extent and severity of the disease which aids medical and surgical decisions.

Colonoscopies and sigmoidoscopies are commonplace, they are undignified, embarrassing and uncomfortable but as someone who has had so many of these procedures I can tell you that they’re not as bad as you may fear.  Sedation is offered and in my opinion should always be taken!  I also remind myself that the nurses and doctors do this everyday and there is nothing they haven’t seen before.

F is for Flare Up – people with IBD are not always sick constantly, they have periods of remission and illness.  These periods of being unwell are referred to as a Flare Up.  Flare ups can vary in strength and length of time and can’t be predicted.

ileostomy bag bikini swimwear beachwear holiday

G is for Gastroenterology – Gastroenterology is the specialty of diagnosing and treating diseases of the gastrointestinal tract and so these are the fellas who deal with us IBDers.  If you have IBD you will get to know your doctors and nurses very quickly.  If you do not feel that you are getting the right treatment, don’t be afraid to speak up.  I was under one team for years before I decided to change to another local hospital and a new team.  It was easy to do, all through my GP and I am so much happier with my treatment since then.

H is for Hospital – IBD is managed by a consultant and team of doctors meaning that sufferers spend a good chunk of their time attending hospital appointments.  Severe flare ups can require hospitalisation for more aggressive treatments and medication.  If the disease gets to the point of requiring surgery then hospital unfortunately can feel like your second home.

sam cleasby ulcerative colitis ibd ileostomy surgery

I is for IBS – IBD is not the same as IBS.  Not at all.  And it kinda pisses off IBD folk when people say “ohhh yeah my sister/brother/uncle/neighbour has IBS!!”

Irritable bowel syndrome (IBS) is classified as a functional gastrointestinal disorder, which means there is some type of disturbance in bowel function. It is not a disease, but rather a syndrome.  IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn’t result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD. People with IBS are not at higher risk for colon cancer, nor are they more likely to develop IBD or other gastrointestinal diseases. IBS seldom requires hospitalization, and treatment does not usually involve surgery or powerful medications, such as steroids or immunosuppressives.  This information is from the CCFA.

Im not belittling IBS, I know it causes great distress to those who suffer from it but it is very different to IBD and the two shouldn’t be confused.

I is also for Ileostomy – An ileostomy is a surgical opening constructed by bringing the end or loop of small intestine out onto the surface of the skin. Intestinal waste (shit) passes out of the ileostomy and is collected in an external bag that sticks to the skin.

woman with stoma ileostomy ostomy stoma images

J is for J Pouch – A J Pouch or Ileoanal Reservoir is a surgical treatment option for IBD patients who need to have their large intestine removed. It is an internal pouch formed of small intestine. This pouch provides a storage place for stool in the absence of the large intestine. Several times a day, stool is passed through the anus.  This is the next step for me and will mean I no longer have a stoma or ileostomy.

K is for Keep Calm and Carry On – because in reality, it is the only thing we can do.

keep calm and carry on

L is for Laughter – Now I know that this disease is serious business, it affects every part of your life and the pain and embarrassment can just feel too much so having L for Laughter may seem like an odd one.  But I really believe that laughter is the key to getting through the bad times.  The fact is that poo, bums and farting are a bit embarrassing for most of us, but they are also funny.  Seriously, toilet humour is hilarious and the quicker you can laugh and make a joke of something, the quicker it feels like less of a big deal.

M is for Medication – there are a variety of medications used to treat IBD, my experience has only been of Ulcerative Colitis meds but most have side effects and some people find the treatment as unbearable as the disease itself.   I believe that its really important to educate yourself on the medications and treatments available to you along with the benefits and side effects.  Take control of your disease and make sure the treatment path is the right one for you.

If your symptoms are mild you may not require specific treatment as mild ulcerative colitis often clears up within a few days.

Moderate ulcerative colitis is often treated using a medication called aminosalicylates. If this is not effective, alternatives such as corticosteroids (steroid medication) and immunosuppressants (medications that suppress the workings of your immune system) can be used.

Once your symptoms are under control it may be recommended you continue to take aminosalicylates as these can help prevent further flare-ups; this is known as maintenance therapy.

If you experience a severe flare-up you may need to be admitted to hospital where you can be given injections of corticosteroids or immunosuppressants.

There is also a relatively new type of medication called infliximab that can be used to treat severe ulcerative colitis where corticosteroids cannot be used for medical reasons.

This information comes from the NHS website.

stoma ileostomy photo shoot woman beauty ibd surgery ostomy

N is for the NHS – Only since my surgery have I realised just how lucky we are in the UK to have the NHS.  Though I had some difficulties (I changed hospitals and consultant once and had a bad nurse experience) I am a big fan of the NHS and feel so lucky to have had the level of care, treatment and support that I have received.  When I read about IBD patients in the US I am appalled at how their system works and realise the value of our countries medical care.

I can’t thank my doctors and nurses enough for the amazing care Ive had in the last year, they have truly saved my life and Im eternally grateful.

O is for Ostomy – The terms ostomy and stoma are general descriptive terms that are often used interchangeably though they have different meanings. An ostomy refers to the surgically created opening in the body for the discharge of body wastes. A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.

end ileostomy ulcerative colitis

P is for Pain – Pain is a common side effect of IBD, abdominal cramps and pain as well as a literal pain in your ass.  Living with pain is really difficult and has such a negative impact on the lives of those with IBD.  It can become difficult to manage as sufferers should not take anti inflammatory drugs or Nonsteroidal anti-inflammatory drugs, usually abbreviated to NSAIDs.  Other pain relief can also have an affect on the bowels and some are really addictive and should only be used short term.

P is also for Poo – in a post like this, how could it not be??

bristol stool chart cake

Q is for Quality of Life – This is a biggy for me, one of the main reasons that I wanted to go ahead with my colectomy surgery was because Ulcerative Colitis was really affecting my quality of life.  That is an understatement to be honest, my life with IBD was literally shit, it made me miserable.  I was exhausted both physically and mentally, I struggled to work, I dislike going places where I wasn’t near a toilet, my body was being wrecked by meds, I had little sex life, I was moody, angry with life and just felt hard done to.

I was pissed off that I had to live like that, it seemed so unfair.  Since my operation my quality of life has gone through the roof, though it is in no way an easy option it was definitely the right option for me.

R is for Rectum – Let me tell you about Phantom Rectums… Phantom rectum is a complication that can affect people with ileostomies. The condition is similar to a “phantom limb”, where people who have had a limb amputated feel that it is still there.  People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

Weird, annoying but hilarious to tell people about!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

S is for Support – Support is key to surviving IBD, from medical teams, friends, family and IBD groups.  It really is a shit disease to have to live with, and due to its taboo nature sufferers not only have to deal with the physical problems but also with the huge emotional toll it takes on your life.  Embarrassment, shame, humiliation, anger and a deep sadness are all emotions that Im at war with every day and it is only with the support of my husband, family and friends that I get though it.  My blog is a coping mechanism for me, if I can write it down and feel that Im helping someone else then it feels that the crap I deal with has a purpose.

Im also a member of the IA Support (Ileostomy and Internal pouch support) and I visit the Colitis and Crohns site regularly.   Whoever you choose to talk to, just talk to someone.  I guarantee you that it helps, I get many emails and messages through this site and always try to reply to and support anyone that I can. xxx

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

T is for Toilets – IBD sufferers are well acquainted with not only their own toilet but those of all friends, family and all public toilets in their surrounding area.  I can’t even imagine how much time I have spent on the pot in the last ten years, considering that during flare ups I could be going to the loo 20 + times a day.

As a side note, you can request from Radar a key to use disabled toilets around the UK as when you need to go, you need to GO… Having washing facilities by you is a life saver when you have IBD.  So next time you see someone who doesn’t look ‘disabled enough’ using the facilities, wind your neck in..

U is for Ulcerative Colitis – I was diagnosed with Ulcerative Colitis in 2003, it was a life changing moment and I struggled to deal with the idea of having an illness for a while.  UC is inflammation and ulceration of the large intestine or colon, it presents itself with bleeding, diarrhoea and pain.

ibd warrior inner strength confidence ostomy ileostomy bag

V is for Vegan, or Vegetarian or the raw diet, or the beige diet – There are a million and one people across the internet who claim to have the ‘cure’ for IBD through diet and pills.  The fact is that if you are suffering from IBD you should NEVER start any massive change to your diet without speaking to a doctor first.  Doctors do recommend a low residue diet during flare ups but please talk to an expert before trying to heal yourself with foods, drinks or any herbal remedies.

W is for Weight – IBD can really negatively affect weight, for many the disease stops the body absorbing nourishment which means drastic weight loss and those people really struggle to keep themselves at a healthy weight.  For others the meds and illness cause weight gain, puffiness and bloatedness.  Neither is healthy and neither make the person feel good.

X is for X ray –  Or Xylophone.  But I can’t think of a way to connect IBD to a xylophone so we will talk X rays.  X-rays form a  series of tests that may be done on people with IBD.  Sometimes using barium and at other times without, X-rays are used less these days as clearer tests are more commonplace.  I have had a couple of X-rays before to check for toxic mega colon, which is not a Muse song but an acute form of colonic distension where the colon becomes extremely swollen and massively enlarged.

stoma ileostomy photo shoot woman beauty

Y is for You – How IBD affects you comes down to how you choose to deal with it, it is bloody hard work to be ill and it can be depressing and make you angry, sad and broken.  But your courage and bravery of just getting through each day is something to be proud of, remember that.

Z is for Zzzzzz – Or sleep (give me a break, Z is hard!!!)  IBD can not only affect the amount of sleep you’re able to get but the quality of sleep as well.  Whether it is through medication, pain or getting up through the night with diarrhoea and bleeding, lack of sleep can cause all sorts of problems such as

  • Difficultly getting to sleep
  • Difficulty staying asleep
  • Problems with concentration
  • Headaches
  • Poor attention
  • Changes in mood
  • Fatigue throughout the day

Side effects from many medications that are given to an IBD patient can also cause sleep problems.  Steroids such as Prednisone can keep a person up all night.

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

My hospital complaint – an update

Im fuming.  So super angry.

You remember the problems I had with one nurse in particular whilst in hospital? You can read about it here and here.

Well the ward manager just called me to let me know he had spoken to the staff concerned and that he hoped I would feel the matter was resolved.

Not so much, it turns out.

The nurse who laughed at me when I lay crying, who offered no help in changing my ileostomy bag or in showering, who wrote on my chart that I wasn’t in as much pain as I was telling her I was and who withheld pain relief, that one… Yeah, her response is that I only ever asked her for a towel so how should she know I needed help in the shower? No remorse, no realisation that she could have done more – its my fault for not asking.

He says that he told her as a SENIOR staff nurse that she should have been aware that a patient who has had major surgery three days prior should get more support and that she could have done more.

He says he showed her my chart and questioned why she didn’t give me more pain relief.  I asked her response he said “Well, nothing really”

He says that she “point blank” denies that she laughed at me.

What. The. Actual. Fuck??

I asked if he was ok with this? That his senior staff nurse had lied on a chart and withheld pain relief.  (I didn’t sleep at all that night, I sat up crying in pain, asking for pain relief again and again.  I was told I couldn’t have anything else till the dr prescribed it the next day.  When asked how much pain I was in 0 = none through to 3 = extreme, I was telling her 3, more than 3!!! Agony!!!! The next morning Timm came in and checked my chart, she had been writing 1s and 2s.  In the morning when they changed nurses, the new nurse came in to find me crying in pain, she checked my chart and immediately gave me a higher dose of Oramorph and said the doctors had prescribed me a higher dose than Id been given all night and that I could have been having it every two hours)

He says that the nurse has worked there for years and he knows her personally and he has never had another complaint against her so it is her word against mine.  He went on to say that *some* patients when they are on a lot of pain relief can be “confused” – he went on to say that of couuuuurse he wasn’t suggesting that *I* was confused but that it does happen.  I told him that two other patients on my ward were so appalled by what they heard and saw from this nurse that they gave me their names and phone numbers and said should I complain that they wanted to be able to say what they witnessed.  That one patient told me she was trying to reach her mobile phone so that she could film the nurse laughing at me whilst I lay crying and sobbing.  That I had been on the phone with my husband as she was laughing at me… That yes, I may have been tired, stressed, in pain and on painkillers but I was not making this up and I had witnesses.

He says that he has spoken to her and none of it will happen again, so do I feel it is resolved?

Is he crack-a-lacking me??

No, I told him, no.  This isn’t resolved as the nurse is showing no remorse and is denying she did anything wrong so how can I believe she won’t do it again?  If she thinks she did nothing wrong then who else is she doing it to? I said if that is as far as he can go then I will be making a formal compliant.  He asked if I would speak to the matron first.  I said I wanted to make a formal complaint as I need to know that she won’t treat others like this.

He said that sometimes complaints are valid and sometimes they aren’t and then went on to tell me that a patient had threatened to complain about him today but it was only because that person had “learning difficulties” – WHAT??? Surely these things should be confidential and he shouldn’t be telling me about other patients?!

So there’s my update, Im sorry if it is badly written but Im so ANGRY at them.  That they think it can all be brushed under the carpet.

I WILL be making a formal complaint and will take this forward as far as I have to.  I need to do it for peace of mind that next time it isn’t my mum, your nannan or Joe Bloggs’ uncle… That it’s not a frightened old lady or a young person who don’t have my voice.

Thank you for reading

 

Love Sam xx

Recovery

Hello everyone

I thought Id do a little update, later when I’m fit and well I’m planning some posts, vlogs and helpful stuff re stomas and ileostomies etc

I’ve also had some amazing offers to do some work and events to raise awareness and money so I’m very excited.

But I’m still recovering and so trying to not take on any stress. So my post today is just a little update.

Recovery from a major operation is hard slog, man. Your whole body has taken a beating and it’s a slow and steady recovery. You are taking so many different drugs, have lines in and out of your body. Your legs are bound in surgical stockings and you are laid up in a hospital bed.

The pain is a toughie. For the first three days I had an epidural in that I could top up as and when I needed it. Ill be honest, I didn’t think it was doing that much… I thought I was a proper bad ass.

Seriously, I was walking to the toilet two days after surgery thinking ‘I am so hard’

Then they removed the epidural.

And I cried.

A lot.

Oh my god! I’ve never felt pain like it!!! My wound felt like it was blazing on fire and my whole stomach area felt like I’d been beaten by a rhino. My back was sore, my head hurt, the passage of food through my gut felt like a thousand snakes…

Now I’m getting on top of the pain, I’m on strong painkillers but the time between them is widening each day. Last night I didn’t wake for pain relief which is the first time since the op so I’m starting to feel like I’m turning a corner.

I’ve had a lot of issues with my ileostomy bag leaking since the op. This is hard to deal with. The first time it happened I cried a lot. I felt so embarrassed. I felt like a baby. I looked down and there was just waste everywhere and I flipped. I got so upset and my mum was here. She got really upset too. Not that it had happened but that I was upset.

Since then it’s happened a few times and though difficult, it get a little easier each time. Well perhaps not easier but less shocking, I’m more adaptable and I know how to deal with it now.

Yesterday morning the stoma nurses tried me with a different bag. It’s a two piece system and has so far been a massive success. It feels really solid and has had no leaks – I feel quite confident on using it.

I’ve had a couple of set backs in the last few days too. The first is I developed thrush in my mouth and throat. This is gross. It’s apparently quite common after surgery and also due to the large dose of antibiotics I received after surgery. It sounds like not that big a deal but because its so bad, it’s stopping me eating and drinking. My throat is so sore and feels like its full of bits and my mouth tastes disgusting. Because I’m not eating and drinking, my weights dropping fast, my blood pressure is low and my output from my bag is just green fluid which is not good!! I am on a remedy for the thrush though so hopefully it will clear up soon.

The other setback was a bit of a weird one. I had a full blown panic attack.

I’ve not had a panic attack before and kind of thought it was mental rather than physical thing so it was a total shock. I was sat with my stoma nurse and she was cleaning my stoma, it was a little sore but ok. I started to feel really queasy and thought I was going to vomit. All of a sudden I just couldn’t catch my breath, she got me to lie down on the bed and my hands, lips and legs went numb. I lay there gasping and my hands froze into claws – I had no control over my body, it was like I was frozen in fear.

After five minutes it passed and I was totally back to normal! They said my body was reacting to stress and it was a panic attack. I’ve never felt anything like it, and at the time I didn’t feel particularly stressed out or panicked. It was terrifying and I hope it never happens again. I feel for anyone who experiences anything like this now – so scary!

Alongside recovering from surgery I am still on the dreaded steroids. I have to taper off from the IV high dose steroids I’d had the week before surgery. So I’m dealing with all the nasty side effects of the evil prednisolone too!! Palpitations, insomnia, anxiety, hairiness and many more. It is shit but necessary. My body will have stopped producing cortocoids and so I have to taper off in order to allow it to start producing them naturally again. Because I take the steroids I also have to take two other medications, one is a calcium supplement the other is a gastro tablet to avoid ulcers.

But I AM off all my Ulcerative Colitis meds which feels AMAZING. Once I have tapered of the pred, I can come off the other meds which means apart from any pain killers I may need, I could be totally med free!!!

This is an awesome thought…

So tonight I was finally released from hospital – it’s been 7 days since my surgery. I pushed to be discharged as I had just had enough of being in hospital!! Also I knew I had a great support system in place here at home and that I believe ill recover better here. Timm and I run our photography business from home – The Picture Foundry and so he is about every day. He is doing all the school runs and taking card of the kids and so is here to cook and help take care of me. For times when he needs to be away for work I have my amazing, wonderful kind friend Caroline taking over and looking after all of us. I call her my back up Timm because she is so much more than just a friend. She is someone I can rely on for everything. I just hope in the future I can support her as much as she is doing me right now. I am blessed to have her and her partner Jamie in my life.

My mum is also on call to help out. She has been great in having the kids, helping Timm with cooking and cleaning and visiting me. It’s been a relief to know that Timm has had support from others. And mums cooking meals in advance for him has been just fab!!!

Getting home was a tough slog. The walk to the exit of the hospital exhausted me so much I thought I’d fall asleep! We picked the kids up from Caroline’s on the way back – I wanted to go in and collect them and it was good. But it totally took it out of me. We stayed a few minutes and then I was done! I just couldn’t concentrate and needed to be in my bed.

So I came straight home and home felt WEIRD after two weeks away!!! I came to bed and Timm sorted all my meds and put the kids to bed. Then he came and we just had a quiet cuddle.

Bliss.

Though I’ve seen him every day we haven’t had a second alone. So the best feeling in the world today was laying in Timm’s arms, eyes closed and enjoying the quiet, sure and calm feeling that I was home.

Love Sam xxx

An update

I thought I’d do a quick update on yesterday’s debacle but before I do I just want to reiterate that apart from this problem with three staff members (one in particular) the other doctors, nurses and support staff at both Hallamshire and Northern General hospitals have been outstanding.

They have shown warmth, caring and have gone above and beyond in helping and caring for me.

I appreciate them very very much and will not be letting the actions of the very few mar my experience with many others.

Last night was awful. After the problems with the nurse I was left feeling alone and upset. When I needed help with my bag in the night I was told there was only that one nurse who could help me so was left with someone who seemed to dislike me quite a lot in care of my stoma which was awful.

My pain didn’t decrease at all, my sleeping tablets didn’t work and I was in agony.

The steroids have made me suffer with the insomnia again and despite the sleeping tablets I could not sleep. The pain was just unbearable – I told the nurses overnight that my pain levels were so high. They ask you for a score of 1-3 – I told them it was as high a 3 as I’d ever had.

So between the lack if sleep, the steroids, the insomnia, the stress of the evening I was not a happy bunny. I had the ‘laughing’ nurse and the evening nurse to see to me. They gave me codiene paracetamol and orimorph.

I felt really uncomfortable in their care through the night. They did nothing to make me feel any better and by 630am I was in agony. I asked for more pain relief and was told I’d had everything I could and that I’d have to wait till the dr came later in the morning.

I lay crying in pain till the next nurse came on. She took one look at me and said ‘right lets get you sorted!’ She checked my chart and immediately gave me orimorph that helped within 20 minutes!

Around 9am Timm arrived. I don’t think I’ve ever seen him so angry… He’d spent the night getting every piece of information to do with complaining about the NHS, protocols, phone numbers, etc etc and was ready to ensure I got care! My hero!!!

20130907-175503.jpg

Once here Timm looked through my chart and said that as I’d been telling them through the night I was at a 3 for pain – they had been putting 1s and 2s.

The day nurse also said that I had only been on half doses of all my meds and that I could have 10mls of orimorph every two hours and 2 tablets of codiene every 4 hours.

I have no idea why both nurses would not give me the pain relief that I needed and that had been prescribed to me rather than leaving me wide awake in pain all night.

So today’s care has been much much better. My nurse was lovely and kind and has helped me get back on top of my pain. She explained all my meds and was fantastic.

She got a sister to come and see me who I have explained all my concerns and complaints and is helping me move forward with them. Timm and I are also seeing the hospital manager on Monday and have our routes sorted with how to complain.

We are complaining because I need to know that this sort of thing is not acceptable.

I need to know that if a nurse acts like this to me, that she can’t get away with mistreating an old lady without a voice or a person who doesn’t have the support to shout about it.

Huge love to all the amazing comments I’ve had today and yesterday. I’m blown away by the 2000 views of my last post!!! 2000!!!

Thank you for caring and thank you for supporting me in standing up for myself and for other patients!!!

It matters. We matter. We have a voice and we will use them.

Love Sam xxxx

Poor nursing = Poor care

20130907-020304.jpg

I’m sorry to have to blog such a negative piece today but I need to be talking about the negatives as well as the positives. As I have said many times so far, my care experience has been amazing. The nursing and care support have been just fantastic and I am a huge supporter of the NHS and nurses. My best friend is a kick ass nurse and I think they do a very difficult job in tough circumstances.

So it pains me to write about my experience over the last day, it really does.

Yesterday I had a bad time with my bag, I had a lot of leaking and my stoma was leaking into my wound. This was making me sore, embarrassed, stressed out and upset. The nurses helped me to clean up a few times, they dealt with the accidents with kindness and helped me to maintain some dignity whilst I lay being cleaned up. It was very tough and left me feeling humiliated and weepy. But we got through it.

This morning I woke to find my bag had leaked again and as I looked at my wound I saw the whole thing was swimming in the output from my stoma (poo to me and you!) I pressed my buzzer and a nurse came over, she said she was doing her tablets round and would be over later. I left it a while and then asked again, she quite huffily said she would do it later. I explained that my skin was sore and I was freaking out about infection from the poo being inside my staples!! So could I do it myself. After an hour she came back and said ‘are you expecting me to do this?’ I said yes and she said ‘fine’ I said I could try to do it myself but wasn’t sure where to start. She then cleaned my wound and bag in silence. No comment and no eye contact. I was mortified. I felt like she was a bit disgusted and didn’t want to help me. I felt like sinking into the bed and disappearing.

From then on today I have asked a few times for support. I’ve said that my bag was leaking, I’ve said that I was nervous and didn’t know what up do. I had very briefly seen a stoma nurse the morning before who had fitted one bag but then I’d leaked so many times snc tried so many different things that I was confused.

I asked if I should try to empty the bag in the loo and the nurse said ‘yes, obviously’ – the whole day felt difficult. I was trying to ask for support but not getting it. I had no idea if I was doing it the right way or not and the nurse seemed not to care.

Other nurses I’d seen so far had been open and kind and just asked ‘how can I support you?’ ‘Would you like help with this’ etc. this nurse just looked mad. She looked and sounded like she didn’t care and that scared me into not wanting to ask any more of her.

She was quite rude and abrubt to visitors and just came across in a very uncaring manner.

This afternoon I asked for some water. I’m trying to increase my water input to help with a number of things mainly blood pressure and stoma care. I asked 3 staff for an hour and a half for water.

I asked if I could get it myself and was told no, I’m not allowed in the kitchen. I know they were busy but I was parched and being postop I really needed to keep my fluid levels up.

My stoma nurse came at 530 and was shocked to hear that I had been struggling. She had not been told that I’d leaked 6 times the day before and was distressed. She said that my output needed more fluid and I needed to drink more. I pointed out that I’d been asking for water for an hour and a half. The student nurse then took my blood pressure which was again low an said I needed to drink more.

No shit Sherlock!!!

Anyway I was looking forward to todays nurse ending her shift and hoping that the evening staff would be of more support.

So this evening towards to end of visiting I found my bag was leaking. I had to ask friends to leave and I was quite upset. I found the evening nurse and said ‘my bag is leaking, maybe I could have a shower? Could you please help me and get a towel. She got a towel an just pointed to a cubicle. I waited for her to come but she didn’t.

If I’m honest I thought she would come and help me. I just had my epidural out today and so I’m still unsteady on my feet and in a lot of pain. When she didn’t even come in, I was too embarrassed to ask her. Of course I’d rather not have a person helping me wash my fanny in the shower! But realistically I needed the help.

I felt very exposed and childlike. I couldn’t lock the door and there were blokes sat outside. The nurse was talking to another staff and kind of shrugged as I pulled at the door.

I dragged the disabled chair into the shower and managed to half sit, half stand in the shower. I struggled to remove my surgical stockings and knocked my stomach.

I sat crying in the shower, not know whether I was supposed to remove the bag or not. Not knowing if I should use soap near my stoma or not. I was in a lot of pain and wished I’d not bothered trying to get clean.

I managed to get somewhat clean and then realised if need to do my first ever bag change. Wet. Alone. In pain. And sat in a disabled shower with a door that didn’t lock. Score!!! Well done me!!!

As I shuffled back to bed a lady from the ward said ‘you need more support love, I can’t believe she didn’t help you in the shower. Can I help?’

I got into bed and then looked down an realised my bag was once again leaking A lot.

I pressed my buzzer and a support worker came, I told her my bag was leaking and i was stressed – I didn’t know what to do. She brought a bowl of water, plonked if down and said ‘is that what they do?’ I said I’d not been getting any support but that I did need help. She just shut the curtains and walked off.

I thought I’d better just give it another go. It’s tough, there’s a lot to learn and I was promised to get stoma education and that the nurses would help me every step of the way over the weekend. This just wasn’t happening

The support worker came back and said ‘you done? Ill open the curtains.’ I replied somewhat snarkily that no I wasn’t done as I had no bloody idea what I was doing but that if they wouldn’t help me that they could at least leave the curtains for privacy. ‘Suit yourself’ she shouted back.

That’s the point I texted Hannah, my awesome nurse friend. I’m a strong independent head strong woman but right now I’m a wilted, broken woman in pain. I’m someone who wants to be able to do things for herself but currently needs help. I needed to speak to Hannah as I sat crying looking at this bloody bag wondering whether my wound was I infected.

Hannah quite rightly told me I needed to speak to someone and to demand some care.

I made a last dash for the loo and when I came out a lady from the ward said ‘Sam I’m worried for you love, why aren’t they helping you? I have buzzed them, this is ridiculous!!!’

I saw the nurse who’d not helped me to the shower and it all built up and fell out!!!

‘I had the whole of my large bowel removed three days ago, I’m in agony, I’m frightened and I am not getting any support from the nurses today. This isn’t fair. I’m in a state and I need some support!’

She replied and said ‘well ask then, it’s not just me’

I looked up quite surprised And said ‘I’m struggling and I haven’t got good enough care from you or the other nurses today.’ I started crying and she said ‘well if you want something just ask!’

She was really defensive and aggressive and I couldn’t believe it! I started crying and said ‘I really hope you are never in a situation where you are in pain, frightened and need help and you’re surrounded by people who don’t care’

She shouted ‘why are you wishing pain on me?!’ I replied that I wasn’t, that I was hoping she would never struggle the way I had. She repeated that I was wishing evil on her…. *sighhhh*

Another patient said ‘The lady’s upset and saying that she hopes you won’t ever be in her situation as we’ve all seen her struggle today and no one helped her!

She was told to be quiet and not to did us other patients.

Then she walked off leaving my curtains drawn and myself crying a lot inside my bed.

I called Timm as I was getting into a right state, I couldn’t believe how things were going and just felt frightened and alone. I was crying hard to Timm and it was obvious you could hear me around the ward. I looked up and the nurse was stood outside my curtain just doing her meds round. I said ‘timm the nurse is standing here doing nothing, I’m in pain, I’m frightened and she’s just stood here.

She did not try to improve the situation, she didn’t try to make me feel better or to pass it on to a superior. She just carried on.

Eventually She said ‘what do you want me to do? You’re just complaining and I’m saying ill do whatever you want.’

I said I wanted to speak to whoever was in charge. The nurse laughed in my face.

I was desperately sad, crying and in a state and she laughed.

Finally the ward manager came over. She asked what was going on. To be honest I’m not sure what took her so long. I tried to explain how unhappy I was at the lack of care and support given all day. I mentioned the shower and the Nurse stepped back I shouting ‘you only asked me for a towel, how’d I meant to know you wanted help?!’ I’d think it was common sense as a nurse to at least offer wouldn’t you?

I said she’d not offered any help and she laughed. Again. I almost lost my head. I can’t believe that when being confronted by a desperately unhappy patient who is three days out of major surgery that anyone would LAUGH I’m their face.

Unforgivable in my opinion.

So I spoke to the ward manager and hopefully pulled in my crazy. I know I wasn’t at my most rational but I’m in pain, I’m distressed and I feel let down so in the circumstances I think I did ok!!!

She has apologised and said that communication needs to be clearer. I think she is suggesting that I need to clearly say the words ‘I need you to get me a care kit and clean up my waste as well as bathing my wound’ – I tend to think that other nurses don’t need it spelling out so clear and asking for help as my bag is leaking should suffice. But perhaps these are particular nurses who suffer from a lack of empathy and common sense….

All I can do is move forward from here, ill be complaining about certain members of staff and making sure the hospital know what has happened.

It’s not just me, other patients have commented that we have had the most awful day of staff being rude, unhelpful and not caring.

I have had another leak tonight and pressed the buzzer. The nurse came over and I told her my bag was leaking into my wound. I asked if there was anyone else who could help me. She said no. So I have had to let her clean me.

I just want you to imagine how it feels for a grown woman to ask another person to help clean faeces off them. Now think how it feels knowing that you’d asked before and that person had already not wanted to help. Now imagine that being the only person who is available to help you.

Feel good?

Nah, me neither.

Well let’s get this blog post out into the ether, eh?! It’s not to slag off nurses or to be nasty. It’s about real experiences of patients of the NHS.

Im laid here raw, exposed and totally frail to these things happening to me and experiences like today have made the whole thing so so much harder.

I really hope tomorrow will be a more positive day.

Thank you for reading

Sam xxxx

Day two after op

Helloooooo! Well today is two days post op – it’s been a tough couple of days and I’m struggling a little but thought Id attempt a post.

Tuesday was op day, thanks to Mr C for updating the blog. I went down to theatre around 2pm and after getting my sexy surgical stockings on and going through consent forms etc, the anaesthetists put in an epidural for post op pain relief. She was fab and from Barnsley and sounded *just* like my sister in law Nancy so it was so comforting having her with me! We were talking whilst I got sorted and so as I drifted off under the general anaesthetic, she told me to imagine laying on a beach in Australia next to my sister! What fab personal and kind care!!!

I awoke in recovery a few hours later to my first question ‘Is Caroline here?’ She wasn’t but whilst I was out I had overheard a nurse who sounded just like her discussing the programme Doc Martin… I have to admit that I was a little disgruntled that she was talking about Martin Clunes over talking to me!! Haha!!! Poor Caroline!!!

I had a little pain when I woke, the nurses soon got it under control by altering my epidural and then Timm was there. It was amazing to see his face smiling down at me, he held my hands and made everything feel better.

Around this time there was some concern over my lactate levels, (genuinely described as ‘deranged’ LOVE it) they were on the high side and so needed to keep me in recovery for a whole longer, but Timm could stay and so all was fine. A couple of hours later the levels were still rising and so the decision was made to move me to the High Dependency Unit. Timm went home as he needed to get back to the kids and the staff needed to do their job.

I was moved to HDU which was a little scary and movie like – they explained things really well and though I was frightened, they kept me informed and I felt safe and comfortable. I had a nurse with me all the time and the care I received was just outstanding. I was covered in monitors, tubes and wires including an arterial line that was inserted into my wrist and SEWN into place!! Eek!!! But they did give me a local and so I had no pain.

20130905-213403.jpg

Wednesday saw my levels improve and so around 2pm was moved back to my ward to recover. My potassium levels were off and so I still had to keep an IV with potassium in it. I had my epidural for pain relief that I have a button to add extra relief if needed and a catheter in as I couldn’t get up and down to the loo.

I felt shattered but on the whole, ok!! The nurses are fantastic here, so warm, caring, professional yet open. They make a difficult time so much easier, it’s embarrassing to be cared for, washed and have your toilet needs to be sorted by another person but they’re so relaxed and laid back about it that you feel at ease. It’s an amazing skill to have and I salute our nurses!!

20130905-220113.jpg

Turns out IV potassium BURNS like its on fire!!!! Really really hurty arm after this one so trying the oral version (tastes awful but not painful at least!!)

Wednesday also saw my meds being dropped! Hooray!!! The 8 Pentasa I have been taking a day since June have been stopped! I know this may not seem like a big deal but it really gets to me having to take so many tablets every day so it felt like a real landmark. My IV steroids have been replaced by tablets that we have to taper down from now over the next few weeks.

To be honest, I think I was still on a bit of a high on Wednesday – Timm and Caroline visited me in the evening and I think they were surprised at how well I was. I mean, I felt exhausted and drained but emotionally I felt relief, happiness and quite elated that the ‘hard bit’ was over. I didn’t sleep particularly well but on the whole I felt in a good place.

So it came as a bit of a shock that today (Thursday) kind of hit me like a thunderstorm. It’s been a bit of a roller coaster today. It’s been kind of tough – there’s a couple of small problems with my stoma – it’s quite small and flat and it’s close to my wound. This means that the stoma itself doesn’t have enough of a ‘spout’ to sit in my ileostomy bag and is leaking.

This afternoon it leaked for the first time. My mum and sister were visiting and I looked down to see a lot of waste all over my stomach. I was devastated. I think it was shock more than anything and I just burst into tears. The nurses were AWESOME they came and cleaned me up, wiped away my tears and offered me comfort, support and kindness.

I was embarrassed and the reality of what was happening hit me like a ton of bricks. I felt like a baby, I felt dirty amd humiliated.

I had a big cry. (A snotty Chinese baby cry!!!!)

Then I manned up and got it sorted! The nurses cleaned me and discussed why it was leaking. They told me to trust them and let them care for me. I did something I’m probably not great at doing and let go of control.

Unfortunately I have leaked quite a few times since. The lay of my wounds mean that my stoma is leaking INTO my wound so I’m feeling very sore and I’m having to be cleaned a lot.

It’s just going to be a bit of a learning curve, trying different bags and seeing what works for me. They say it will be much easier once all the swelling goes down and my wound heals.

20130905-222142.jpg

The wound!!! Scars are cool, right?!

Timm and the kids came to see me tonight which was fab but a little overwhelming. It was great to see them but difficult as I don’t want them to see me upset or in pain. Once they’d left I had a visit from my two oldest friends Tania and Hannah and had a bit of a weep. I just felt really emotional and ragged. I had to let go and it was good to have my old dear friends there to make it better.

What I’m finding from this situation is that my struggle is in being out of control and I need to learn to accept this and be ok that sometimes you can’t paint a smile over it. Sometimes it’s ok to say ‘I’m struggling’ because you know what? It feels good to have people around you who love you and who say ‘that’s ok, let me help’

So ill leave you with a couple of things, firstly is the shot of my ileostomy pouch…

20130905-223530.jpg

And secondly, a nurse told me I should name my stoma!!!

Any ideas?

Sam xxxx

Post op

Too tired to blog but I’m back on the ward. Spent the night in HDU but all ok now.

Very sleepy but pain under control with epidural.

Will try to update soon

20130904-160549.jpg

Oh and dude… I have no belly button any more!!!

Sam xxx

Surgery day is upon me

After last nights epic transfer stress (told me to pack up at 6.45 and I finally got into bed at the other side at 1.30am!!) I’m finally in the Northern General. I had a terrible nights sleep, my fears and anxieties just got the better of me and I spent a fair chunk of the night in a state of panic.

This morning the surgeon has been to see me and has made the final confirmation that surgery is definitely the right decision and will be going ahead today! I don’t have a time yet but I’m on nil by mouth and they’re attaching IV fluids and the like to me so I’m thinking it won’t be too long.

So how do I feel?

It’s odd, at times I feel total abject terror. The thought of the actual surgery is such a frightening thought – I’m scared of the whole cutting and removing and all… I’m frightened of pain and if there’s difficulties. I’m frightened of this feeling of being alone. I have the best husband, kids, family and friends and I’m so well supported. I’m overwhelmed by the kindness I have been shown. But in these hours of waiting and those long, dark evening times I’m so very alone with my thoughts.

20130903-085534.jpg

But on the other hand I know this is the right thing to do. It’s the start of a journey that should end in me being well. I’m excited to think of a life that won’t include Ulcerative Colitis. To think Ill be able to plan in advance without the fear that Ill be crippled by a flare up.

I’ve said for years that I really just want to be a ‘normal’ person without having to take a host of meds to function. Some people who know me may say Ill never be normal but hey!!!

So this morning I’m going to sit, try to relax and think about the things in my life that make me blessed. My husband. My kids Charlie, Ellie and especially Thom! My family. My friends.

The fact that we live in a country that means my care is free! I read American IBD blogs and I’m shocked at the stress they endure on top of their illness with money and insurance.

I know it’s a terrible clique but I do feel that today is the first day of a new life for myself and my family.

I’m on the emergency list which means the surgery is imminent but if another priority comes in ahead of me, my surgery will be dropped back.

I’m quite weepy still today, I wish I could say I’ve got my big girl pants on and a brave face but more often than not its a slightly panicked, puffy moon face with red eyes!!! I swear in my head when I weep I look like this…

20130903-093607.jpg

In reality it’s more like this…

20130903-100914.jpg

Thank you for all the folk reading the blog, I’m blown away. Yesterday over 400 of you were reading and the numbers are going up all the time. It’s amazing and I’m so honoured to have you share my journey with me. The whole reason for this place is to break the poo taboo and to get people talking about IBD, Ulcerative Colitis and Crohns – I just hope my ramblings can help others. The other reason is that getting it all down is very cathartic for me. I know some people might think I share a little too much but I really think if I’m going to do this I need to do it openly and honestly.

So Ill see you all on the flip side! Still rollin’ with no colon!!!

Much love

Sam xxxx