About Me

Me today – 2017

Finally decided to blog about my life and illness after being persuaded and given the confidence to do so by my partner, family and friends.

So here it goes…….

I’m a 31 year old female and have had the pesky little sod Crohns for 13 years.

I was diagnosed with Ileo-Crohns in December 2004 after severe weight-loss and when a fistula popped itself through my belly button.

I had on going symptoms for 18 months prior to diagnosis.

My start up symptoms for this was gastric flu and then a really bad case of cellulitis in both legs. My GP physically laughed when he diagnosed the above as its apparently only common in the older generation (nan&grandad).

I explained about the severe stomach cramps, sickness, the dry heaving whilst eating, diarrhoea and constipation. He referred me to wait for it……… A Dietician and the mental health team for Anorexia. Now I’m a girl who always had a healthy attitude to both food and exercise so i was not best pleased when the referral came through the post. Neither was my mother who proceeded to stuff me with as much complan and high fat foods as possible(still hate milk to this day).

Me Pre-diagnosis – 2004

So one appointment in the dietician and mental health team discharged as i was clearly not Anorexic or mentally unstable. however they referred me back to the GP and advised i needed to see a Gastro team due to the symptoms . That got lost somewhere and never materialised.

During this time i moved from the family home and moved to med-way with my now ex partner. I was still losing weight , severe pains and so forth.

To be perfectly honest I just buried my head in the sand and got on with it as didn’t trust the Doctor World and thought I was inventing the issues I was experiencing.

Roll on mid November and that’s when the real fun and games started. My belly button and tummy were severely swollen and my innie was turning into an outtie. Same symptoms again only with this i was getting flu like symptoms and severe night sweats. Good old Louise just continued on working as I was an agency temp at the time and didn’t get paid for taking time off sick.

This continued until December, now I will always remember that morning. I woke up with a sense of relief and then holy shit I’m dying. My belly button and proceeded to rupture through the early hours of the morning. I had puss, mucus, poo and blood all over my stomach and bed clothes.

So I get up , change the bed(it ruined the sheets) to hide the evidence, shower then proceed to find the biggest plaster my medicine cabinet contained, covered the offending belly button and went to work(dedication to the job lol ).

Roll on 5 pm and my shift has finished, I managed a full day with numerous toilet visits to change the dressings as it was still spewing whatever it was out if my belly button and me going Ewwwwwww every time I changed it.

I drag my sorry state of affairs body to A&E to see what was going on and this clearly isn’t bloody normal and i was scared witless to be perfectly honest.

The bastards sent me home with antibiotics and paracetamol even though I was in tears begging for a second opinion(turns out they had never seen a fistula).

Roll on 3 days later the antibiotics clearly are not working, I cant eat or drink and am in a very poorly state. By this time I’d lost the will to live but managed to drag myself back to med-way hospital at 2 am and hey presto another doctor agrees this isn’t normal and I get admitted onto a ward.

Post Diagnosis – 2005

My mum didn’t know I was in hospital at the time and got informed two days after being admitted as the ex partner wasn’t very concerned at the time and only told her when she phoned as I’d left my phone at home during all of this (she broke the land speed record getting there ).  I had never been so relieved to see my mum by this point.

The next few days are a blur. I’ve had a barrage of tests and procedures carried out:

  • Barium X-Ray – little tube back down through the fistula to see if they could locate the original abscess site and where it started (I think I broke the doctors finger during the procedure)
  • Ct scan
  • MRI
  • Gastrocopy
  • Colonoscopy
  • Arterial bloods(they hurt a lot)
  • X-Ray on my chest and lungs
  • And finally the best one ever, also got screened for every STD known to exist.

So D-Day arrives. I have my Mum & Nan extremely worried waiting for Dr Kitchiner( Gastro consultant) to give his diagnosis. So I get one of the best one liners I’ve ever heard, I’m ever so sorry to tell you but you have Crohns disease and its not curable ( he needed to improve his one liners).

There’s me sitting here thinking what in the hell??? Im 19 years old and just managed to sink in the words crohns disease let alone the fact its not curable.

My Mum and Nan burst into tears because they’ve already been at the old readers digest medical encyclopedias (my Nan had the whole set) and have decided that between them its a life sentence I’ve been handed.

There’s little old me just relieved I finally have a name for whats caused me 18 months of pain and discomfort and its also just proved I’m not mental ( yeay me).

So this ladies and gentlemen is how I finally got diagnosed.

My diagnosis over the years has changed. Initial diagnosis was

  • Ileo-Crohns Diesease
  • Fistula-ting Crohns
  • To it now being refractory penetrating Crohns disease (turns out the little bastard is as stubborn as its host and its immune to the majority of medications they’ve tried .

Me after giving birth to my Daughter – 2009

I’ve had two ileostomies 2009-2012. And now Bertha 25/11/2016 shes permanent there’s no going back from this one and I’m actually happy with this . Its given me back some of my life and I’ve lost my body issues in the process.

I also have a few other little nasties they don’t tell you about that is related to having a Auto-Immune disease.

  • Cellulitis
  • Psoriasis
  • Rashes
  • Red eye
  • Severe Anaemia
  • Severe Bile Salt Malabsorbtion(surgery related)
  • Osteo Arthritis brought on by heavy long term usage of steriods
  • Raynaud’s
  • Septicaemia
  • Fecal Peritonitis
  • Acute renal failure x2
  • 18+ operations since 2009.

I’ve set this blog up as everyone likes to hear stories from fellow IBD Sufferers and they can maybe relate to some of what I write about.

I want this blog to be Inspirational and a guide to help others and to advise those who are newly diagnosed or long term sufferers like myself.

I’ve had my ups and downs since being diagnosed, tears and laughter. but one thing I have proved to myself is that I’m a lot stronger  and capable than I ever thought possible.

Over the years as I’ve got stronger I’ve turned it around so I’m not defined by this little bugger and I have defined it and put it into a little box that occasionally rears its ugly head.

Through out this blogging I would like to think I’m amusing in my perspective of this illness , I think they call it gallows humour (now this I have a lot of). My toilet humour also holds no limits lol.

This blog has been set up to be interactive, so please ask questions and I will reply to as many comments as possible.

Hope you enjoyed the first post.