Why I Chose To Not Stay In The Dark Over My Diagnosis

So this is the story if you like about Why I Chose To Not Stay In The Dark Over My Diagnosis. When I was diagnosed in December of 2003 I was told I had Crohns Disease and a Fistula because of this. I did as I was told. Took all the medication, relentless examinations and countless hospital admissions because they could never ever get the Crohn’s into remission or the fistula closed up. The consultant at the time was also reluctant to consider surgery due to the level of inflammation. At the back end of 2008 my Crohns was finally in remission and then I found out I was pregnant. I had to stop the wonder drug that was Infliximab due to being in the first trimester of pregnancy. I had a slight flare at 26 weeks and was put on high dosage steroids after a two-week stint on the maternity unit as the baby was more important than my Crohn’s.

Last 5 years of correspondence

Last 5 years of correspondence

 

Why I chose to be copied into all correspondence

In 2009 I had a pretty torrid time. By the time I was discharged in December I asked to be copied into all correspondence purely for work purposes as was aiming at the time to not actually go back to work but use my prudential health cover to pay my salary as I was on full pay maternity leave at the time. I needed the letters as proof of work and in the end used all my holiday leave to delay my return until the June of 2010. I also had to attend wound clinic every other day and needed the proof so I could work constant late shifts as was on a rota basis for earlies/lates as per my contractual status.

It was only because of the letters and correspondence I got myself a referral to Guys & St Thomas’s Hospital, I had previously asked for a second opinion and got told I didn’t know what I was talking about and they was treating me to the best of their abilities and a second opinion wasn’t needed. Suffice to say my Initial diagnosis letters and correspondence got me my greatly needed referral and I’m lucky I had the correspondence as nearly 5 Years on Guys & St Thomas’s still don’t have access to my Medway notes as they magically disappeared and they had to start from scratch with me and any treatments to ascertain what was wrong.

Being under this hospital has finally got me on an even keel with my health and apart from the odd accident or surgery. I haven’t been admitted for long term stays in the last 3 years just purely because of a Crohn’s flare which is fantastic for me.

I swear my consultant thinks I’m a pain in the butt but he’s also happy that I’m always fully aware of what’s going on with my insides and I always research and check what is said and treat my Crohns as a life lesson and make sure I’m always in control and stay fit and healthy.

My Diagnosis

My diagnosis has changed over the years. I may have had Crohn’s for nearly 14 years and know the symptoms of a flare but never really had a true understanding until 2012 when I did a self-referral via GP after losing faith in my consultant as I wasn’t getting the answers or treatment needed. Suffice to say I have researched the Ins & Outs of everything since then as I dont completely trust the medical professionals when they’ve put my health and sanity at risk on more than one occasion.

My List

My list of Crohns Diagnosis and things tried

Here’s my full diagnosis over the years

  1. Penetrating Ileocolonic Crohns disease 2003 with a enterocutaneous fistula around the umbilicus
  2. Emergency Ileocaecal resection in September 2009
  3. Sepsis & Faecal perontinitus 2009
  4. Pneumonia & necrosis of the laparotomy open wound 2009
  5. Biological mesh implant 2009
  6. January 2012 reversal of Ileostomy
  7. September 2012, abscess removal along with undissolved stitches
  8. Osteo-Arthritis due to long term steroid use 2013
  9. Severe Bile salt malabsorption December 2015
  10. Microscopic Crohns disease throughout after endoscopy & colonoscopy august 2016
  11. Refractory Penetrating Crohn’s disease November 2016
  12. Permanent Ileostomy November 2016
  13. Just a general Pain in the arse

Yes that looks like a long list and a few changes but I decided to use the god that is google and have a  better understanding as to what happened to me along with understanding my illness in the aide to help other sufferers as well as impart good solid advice and not giving wrong advice to these other sufferers.

My speciality and everyday words and brain are Crohn’s disease because I have to live & breathe with it on a daily basis. By gaining understanding and teaching myself how to live with Crohn’s, I’m better managed with consultant appointments and will argue with them as to what the best treatments for me are along with having an understanding so I’m not just fobbed off like before.

I think having the better understanding has also helped with my mental health as I now know what’s wrong with me and I’m not just imagining or making up what goes on in the inside of the medical mystery that is inside my abdominal cavity. Every time I see an article on new medical treatments specifically for Crohns I research it and ask my consultant if those will help me in some way. The refractory part of my diagnosis means I’m immune, allergic or intolerant to all of the drugs they have used so far ( Vedolizumab so far so good). I’m a prime candidate to test the new drugs available and am up for anything to try and get this blasted illness into remission.

So this is that for why I chose to be copied into discussions and letters. These letters help with a lot of things. If you’re unable to work then they can help you obtain certain benefits such as DLA/PIP or employment support allowance. They will also help you with work if you have extended hospital stays or have time off sick as its tangible proof of what you are going through.

Ask your consultant

Ask your Consultants secretary and they can issue you with what’s discussed

If you contact your consultant’s secretary and ask to be copied into all discussions and correspondence they will facilitate that request.

There’s also outsourced links on this post so you have a better knowledge or can read what I have written down as medical Jargon.

If you have any questions, queries or responses please comment below.

Colitis To Ostomy
4 Comments
  1. Can see where your coming from had mine 18 years and told 5 people and 4 are family never take a t shirt of only time of is when in shower then it’s the first thing I put back on is getting harder now to keep shhhhhhhhh as on palitive care and support from nurses and hospice they can see and no sometime wrong but they don’t ask let me get on with it of on holiday with 38 of my m8s so it’s going to be really hard but can do it

    • Hi Paul,
      Thank you for taking the time to read my blog. From what you’ve replied are you currently under palliative Care? My family & friends have also been really supportive of all my decisions and my bag flashing. it also helps my partner is also extremely supportive. I do like to stay in the know so I can keep my health in check and also have a full understanding of what’s happening to me. I hope you have a good holiday and enjoy yourself.
      Many thanks
      Louise xx

  2. I think being in the know helps because the communication between departments is shocking #sundayshareup

  3. I think it is so important to really understand what is going on, so you can be empowered to work with your team (and challenge when nessecary) to get the treatment you need. #Sundayshareup

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