What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

The emotional effects of IBD

Today has been a hard one. Not because of pain as you may automatically suspect, but mentally.
Even when I try and explain the implications of living with IBD to people, I still never mention the thoughts and emotions that come with it.

I will now try to put this into words but this is not something that I have done before so please bear with me while I ramble on about irrelevant things (My usual avoidance techniques when It comes to talking about ‘feelings’)

Even the word ‘feelings’ makes me cringe. Ugh!

Today I have found out that all of the recent tests I have undergone to see if my recurrent Pouchitis is in fact Crohn's disease are inconclusive. There are aphthous ulcers and granulation tissue in my pouch and narrowing of the intestine that may just be caused by scar tissue or may be due to Crohn's disease. In my head, today was the day I was getting answers and a plan of action. In reality, I came away knowing I am waiting for an appointment to see a new surgeon at another hospital as I have refused to see the one I had previously and 3 weeks’ worth of Fortijuice in an attempt to stop my weight loss due to vomiting. On the agenda to be discussed with the new surgeon is whether my narrowings can be dilated by balloon as my current hospital don’t want to try or whether dilation by radiology is an option. If not then it may come to pouch excision, I am currently in limbo awaiting an appointment and discussion.

To say I am disappointed would be an understatement.

I was diagnosed with Ulcerative Colitis in 2007. By the time I was diagnosed I was already hospitalised and my bowel had been removed within the week. When it comes to life or death it’s not really even an option is it.

Shocked, confused, upset to name a few. A long stay in hospital followed, being drip fed, losing the ability to walk etc, etc. You all know what happens when shit gets serious! I left the hospital at 6 stone 2, having just learnt to stand on my own two feet, literally.

I hated ‘the bag’. I shouted, I screamed, I cried and the only thing that kept me going was the promise of reversal down the line as soon as I was well enough to make it through another op. Had this ileostomy been a permanent fixture then it is safe to say I wouldn’t still be around today. I was depressed, I wanted out, I wanted it to be over. Never had I felt so alone at all times, even when I was in a room full of people.

I rarely went out anymore, I didn’t want to socialise, I didn’t feel like me. In fact, I hated me, how was anyone else going to like me when I was so full of self-loathing? I hated ‘the bag’ which I always thought of as a separate entity. I called my stoma ‘it’.

Forums were suggested, online and physical meet ups with other IBD / stoma patients. I was in denial, I didn’t even want to think about it so the last thing I wanted to do was talk about it!
Ignore it, it will go away. But it doesn’t does it.

I hopped, skipped and jumped my way to my appointment with the surgeon to discuss having my j pouch created only to be told when I got there that the operation may have a major effect on my fertility. I would be left with a 33% chance of conceiving or 0%. I’m no gambler but even I know they aren’t great odds.

Now that was a jaw dropping revelation that I wasn’t expecting, I was gutted I had not been told before.
Like a right hard kick to the face.
A punch in the stomach from David Haye. And it hurt like hell…

Some things are still too hard to talk about so I  will leave that where it is for now. Not as brave as I thought I was!

The time came when I was travelling to the hospital on the morning of my jpouch operation. You would think I’d have been scared wouldn’t you, or at the very least nervous, but no. The ONLY thing running through my mind in the days coming up to the surgery and right up until being put under anaesthetic was this… “This is the operation that could take away my god given right to have a baby”
You’ll be glad to know that I am no longer a nutcase. I sought counselling, I worked through it and now everything is as OK as it’s ever going to get.

I think it’s the drugs, prednisolone specifically, that lead to my depression. High doses make me think like someone I do not know. It’s funny because even whilst I am thinking something or feeling a certain way, I know that these are not my ‘normal’ thoughts. This is not the way I would usually feel about this situation. It’s hard when you feel like you have someone else’s thoughts but you can’t make them go away. That’s all you’ve got for now!

I knew that the discussion of pouch excision would come up shortly but when it did I couldn’t hold back the tears. Seeing it written in black and white made it a fact that this was a highly possible option now. When it was just a thought floating around in my head I could almost pretend it wasn’t real. I was told just before Christmas that if my pouchitis returned (which it always did) the preferred option would be to admit me for intravenous steroids and discuss removing the pouch.

Depression struck again, it would seem I hide it pretty well from those around me but it’s made a lot easier by the fact that I often hide myself away from people at the same time! I still go to work, in a foul mood of course, get home, lock the doors and keep the blinds firmly closed.

With symptoms recurring in early January I called up my IBD nurse with a list of medication that I had correlated through online research and chatting to people in Facebook Groups and on Twitter. I was completely thrilled when the decision was made to let me try two different meds before deciding pouch excision was essential! Happiest I have been in a good while but also aware that removing my pouch, leaving me with a permanent ileostomy IS going to be a part of my future.

I have always considered suicide as a completely selfish act. You leave the people that love you behind to pick up the shit you have left them with because you weren’t strong enough to carry on, because that was easier for you! Those people for the rest of their lives are left wondering what they could have done to make things better for you. Wondering why you didn’t feel you could talk to them. Why they didn’t notice that something was wrong and save you.

That said, that was where I was at in my head. Not now but when surgery time came. I’d thought about it a lot, I had made a decision and I was happy with it. That’s what is weird. Once you’ve made a decision you can stop worrying for now. It doesn’t eat away at you anymore. It’s like closure and everything is now at ease, no longer scary because you have a plan.

I have been thanked so many times for starting the #GetYourBellyOut campaign. I’ve been told how wonderful I am, how brave and strong and inspiring.

The trouble is these people don’t know where I was in my head only a short while ago. It may sound stupid and it may sound dramatic but the people that have supported the #GetYourBellyOut campaign have saved my life. They have inspired me to a point where I now know that I AM going to be ok, no matter what happens next.

I can’t even put into words what I want to say so thank you will just have to do!

The new #GetYourBellyOut video has brought tears to my eyes repeatedly. I have already watched it 8 times and I know I am nowhere near done yet!

Sometimes I am selfish, sometimes I get angry, sometimes I am weak and sometimes I am downright pathetic, but you know what? That’s ok!

I’m only human, and I bleed when I fall down, I’m only human, and I crash and I break down…

BUT, I can fake a smile, I can force a laugh, I can dance and play the part :)

Please give our new video a watch! You can find it here

We need people to understand what IBD really means to live with and I need people to know just how frigging awesome this campaign has been and why I am so proud of everyone that has taken part!