Living with IBD – World IBD Day

So if you have Inflammatory Bowel Disease you maybe aware that today (the 19th of May) it is World IBD Awareness Day. It is the official day (although most of us do it 24/7) to raise awareness of the ins and outs of our disease, how it affects our daily lives and that it isn’t just a pooping disease.

This is the NHS definition of IBD is :

Inflammatory bowel disease (IBD) is a term mainly used to describe two conditions: ulcerative colitis and Crohn’s disease. Ulcerative colitis and Crohn’s disease are long-term conditions that involve inflammation of the gut. Ulcerative colitis only affects the colon (large intestine).

I myself suffered with Ulcerative Colitis from a very young age and have had two surgeries because of the disease and at least 8 different types of drugs varying from tablets to biologics (infusions) and chemo (injections). They gave me some relief and some gave me none; steroids unfortunately were the ones that gave me the most relief but also the dreaded moon face. I was offered surgery for a temporary ostomy at 14 which I refused as I had plenty of other medications I could try and at 21 I was told I didn’t need one. Although hindsight is a beautiful thing and looking back I feel like I should have had one, by the time I got the official diagnosis of Pouchitis at 28 I was ready to have my ileostomy and I haven’t looked back once. I do understand others aren’t so lucky.

Low FODMAP diet

 

Throughout my time with my treacherous colon I suffered with constipation (and taking everything from syrup of figs to hardcore laxatives through NG) bleeding, overflow, mucous, tears, bloating, joint pain and a lot of food intolerances. With the food issues we didn’t know as much as we did back then and it was still trial and error but no specific talk about trigger foods – which if I knew about would have helped me big time; sure I would still have been in agony but it wouldn’t have been as bad after eating! I would suggest looking into the Low FODMAP diet if you think food may be attributing to your pain as it is often the case. The diet mentioned is basically an exclusion diet of the main trigger foods and then a slow reintroduction group by group. The premise of this is to work out what gives you grief; I did this once diagnosed with Pouchitis and found red meat and onions were my main culprits.

I spent a lot time in and out of hospital whilst I was at school which to an extent I believe hindered me slightly but not at GCSE level as I managed to do quite well with them; not amazing but enough to get into A Levels. IBD is a stress related disease which basically means when you are stressed your symptoms can become worse or more prevalent and we obviously find different things stressful than others. For me it was being told I needed to hit consistent grades to stay in sixth form; which I did and handed in work on time regardless of being in hospital…that however for my new head of year wasn’t good enough and kicked me out which was wholly unfair as all the other staff knew about my disease, one of which had it himself and had an emergency ileostomy formed. I didn’t know about appeals etc then and just accepted it as what was done is done, but if you are in that situation fight it! As long as you are meeting “expectations” within your capability you should fight it.

I asked my lovely friend Natalie over at The Spoonie Mummy what it is like for her with Crohns disease;

Hi, I am Natalie, a mum of two and stepmum to one.  I have a lovely boyfriend Ste and we have been together for nearly two years.  I enjoy reading, writing, spending time with family and friends, colouring and exploring.  I am currently studying part time for my degree through the Open University and hope to work with children and young adults diagnosed with chronic illnesses to support their mental health.  I have been a ‘spoonie’ for as long as I can remember.  I was diagnosed aged 15 months with juvenile rheumatoid arthritis.  When I was 7 I was diagnosed with Iritis which is inflammation in the iris of the eyes.  It is often diagnosed in children who have arthritis and can lead to blindness if not picked up and treated in time.  My bowel problems started when I was around the age of 8 or 9 but my Crohns disease was not diagnosed until I was 26.

I was already on quite a lot of medication for my arthritis so my pooing problems were always put down to those.  My main issues were severe constipation, blood in my stools (which was put down to tearing as I was so bunged up) and pain.  I already suffered from things like anaemia and fatigue due to the arthritis so this wasn’t picked up as a symptom that something else could be going on.

Fast forward to the age of 26 and I had just returned from my honeymoon in Greece.  I started about a week later to have severe diarrhoea.  It was completely water whenever I ate or drank anything, smelled funny and there was a lot of mucus.  I thought I had picked up a bug on holiday and it calmed down after a couple of weeks.  For a week!  Then it started with full force again.  I went to see my GP who believed I had IBS but due to my medical history, was referred for a colonoscopy.  When I got to the hospital and was lay waiting for the procedure to start even the gastro specialist was assuring me it was IBS and he would do a test for coeliac disease too, as it is a simple blood test and worth ruling out.  Until the camera went in that was!  He was horrified at the state of my large bowel and the amount of small bowel which he could reach with this sort of scope and soon apologised!

Natalie from The Spoonie MummyAs I was already on Methotrexate and a biologic, it was decided the treatment would stay the same.  However, they would swap the biologic I was on to Humira as this would hopefully settle both my arthritis and Crohns.  I was also put on a reducing plan of steroids to get my current flare under control.  Unfortunately I did not tolerate the Humira very well, in fact, it made me feel much more poorly.  I was then told there was a new biologic that I could be given – Cimzia.  This was being used to treat arthritis and my gastro doctor said they were seeing some positive results in America when using it to treat Crohns.

I went through a lot over the next couple of years trying to come to terms with another diagnosis and not getting much support from my team at the hospital.  I completely avoided the hospital for a year at one point.  I don’t recommend this but at the time I was not coping well at all and wanted to bury my head in the sand.  It was eventually my rheumatology nurse who made me come back in to clinic and everything came spilling out.  She was super supportive and then I went back to my lovely GP who managed to sort me out with appointments and medication.  The Cimzia was working really well for my arthritis but unfortunately was not doing a lot for my Crohns.

In November 2015 I had my first Crohns related admission.  Looking back I should have probably been in many times before that but as I was not given much information or offered a lot of support from my gastro team I thought I was expected to manage at home.  Losing over a stone in 6 days once should have probably sent me in, but I coped at home as always!  By this point though I could barely stand, I honestly felt like I might be dying.  I visited the out of hours doctor on a Saturday and I only got as far as the nurse – my urine tests were enough to say I needed admitting, never mind anything else.  I spent a week in on drips and having tests – CT, MRI’s etc which showed my potassium and protein were low, I had a mass in my terminal ileum (luckily turned out to be inflammation and nothing more sinister) and my Crohns was raging through my large and small bowel.  I won’t go into the terrible care I received over the following few months as this would become a book, but I finally had to go back though A and E in early April and was admitted again.

I again needed a battery of tests, medications, build up drinks and was eventually visited by both the gastro doctor and a surgeon.  The surgeon said I needed a right hemicolectomy to remove a part of my small bowel, the terminal ileum and the beginning of my large bowel.  And due to the extent of damage and inflammation, and the fact that I was on long term steroids and biologics it would be a huge risk to try and reconnect the bowel.  I was getting a stoma.  Not the news I really wanted as I turned 30.  I really wasn’t expecting to spend my birthday in there, never mind be told that.  My surgeon was fantastic and was able to do a keyhole procedure which minimised the scars I now have.  Stanley was born.

Since getting my ileostomy life has changed dramatically.  I felt so much healthier and put on the weight I had lost.  I moved back to Derby to be closer to my family which has been great.  I met Ste and my romantic fairy-tale started.  I also set up my blog which has been one of the best things I could have done.  I was able to resume studying and although still not back at work yet, it is a huge aim of mine.  I am passionate that people need to be educated about their chronic illnesses to be able to make the best decisions about their life, medications and care.  Once I did this with my Crohns I felt much more in control and happy with treatment plans etc.  I hope to use my blog to help support people that don’t have that – my Mum has been a huge advocate for me since I was first diagnosed with a baby and I was lucky to have a great team of doctors growing up, but I know many don’t have that.

I am currently still on Methotrexate but have started a new biologic – Stelara, which I hope will calm everything down for me.  I try to do some gentle exercise including walking and pilates as well as take some supplements to give myself a boost.  Resting when needed is something that is really important.  Pushing myself too hard for too long results in days of feeling awful.  My ileostomy is just part of life now and I cannot be more grateful for the second change I got given and all that has happened since.

I also did a quick 24 hour poll (yep I am a fan of those) asking people what type of IBD they have and most people in the group I asked had Crohns rather than Ulcerative Colitis. I think this is because once people with UC have had their stoma they don’t need the support of the groups anymore for IBD and whilst that is great I believe these are the newly diagnosed patients need support from the most.

 

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