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

So I just keep going, the scenery never changing.

I have spent the last few years telling myself that IBD will not define me. It did before, I let it take over and I was damn sure I wasn’t going to let it happen again. It broke me, and then it made me, but right now, I feel deflated and on the verge of breaking again.

I have never let it stop me doing what I want to do and I still don’t. If I am in pain I take pain meds and as long as I can physically stand and walk, no matter how many meds it takes to pull myself out of bed in a morning, I will do it. I will go to work, I will do my shopping, I will pay my bills and look after my dogs, and attempt to keep on top of the housework, and sustain relationships with people I care about.

I will leave the house packed up to the eyeballs with emergency supplies for accidents and sore arses, and pain relief because you never know when the pain is going to try and cripple you. I have done this for years, and I still do it, but it has come to a point where I feel like IBD does now define me rather than just live alongside me. I feel like all I am is my disease because it controls everything I do. It may not stop me, but I always have to think ahead and prepare for what IBD might throw at me.

Everything that is in my diary is health related.  This month I have already attended two hospital appointments and a doctor’s appointment and I’m not done yet. The only thing I take time off work for is health related and I would much prefer to be off enjoying myself!

March 10th – Gynaecologist: Cervical erosion – book Cryocautery
March 12th – IBD nurse: Upped Loperamide, book flexi, bloods
March 13th – Doctors: Hydrocortisone and Diprobase for Psoriasis and antibiotics for acne
March 25th – Flexi sigmoidoscopy (camera up my arse for those of you not in the know)
March 28th – Belly Ball (yes, party, but again it’s all about IBD)
April 2nd – Northern general: Book procedure to discuss removing stitch, discuss pain – expect X-ray
July 14th – Cryocautery (freezing abnormal tissue of the cervix)

At some point (probably to fill my time between April 2nd and July 14th) I need to go back to have the stitches sorted and I assume another X-ray to find the cause of the pain in my side. My fingers are well and truly crossed that no Pouchitis is identified or I’ll need to start Imfliximab too.

My iron is low but no action is being taken. I am exhausted and when the iron gets bad I get dizzy and ‘thick’. I can’t even see straight sometimes and I fear walking in case I topple over.

I don’t talk because it’s pointless. Because no one can help. Because it makes people sad knowing that I am sad. Because I hate people trying to give me advice when I have already considered all options.

And what right do I have to complain when other people have it so much worse than me? I just look like a wimp.

So I just keep going, the scenery never changing. No end of the road to look forward to reaching. Surviving, not living.