Crohn’s Disease is a real pain in the….mouth?!

Crohn’s Disease and I have been living together now for nearly 38 years. It’s not always been a happy relationship; we don’t send Christmas cards, and anniversaries are quietly ignored. We do communicate a lot though. It lets me know how it’s feeling every day, and I shout at it – quite often. In all that time, there’s hardly been a day when we haven’t talked.

It’s put me in hospital a few times; it’s been the cause of three resections; it even got within a hair’s breadth of killing me on one occasion. It has left me with quite severe Chronic Fatigue, and treatment for it has left me with Osteoporosis, which so far has fractured six vertebrae, making me two inches shorter.

After such a long relationship, I know my Crohn’s and my body pretty well. Anyone with a chronic illness does; you recognise the effects of your condition – and of any medication you take for it. You can tell fairly accurately if a particular symptom is ‘normal’ or if you need to treat it as something new.

We have all seen doctors who will react to virtually anything you show them with “Oh, I expect it’s your Crohn’s…”; finding a good GP who will work WITH you is crucial. In this I have been quite lucky in recent years; I just wish I could say the same for gastroenterologists (although my current one is the best for some time).

Now in my experience, everyone I’ve ever met with Crohn’s – and I have met quite a few over 37 years – has a different set of symptoms. There are a few that seem common to most, but beyond that, more or less anything goes. And we have all met people with symptoms that surprise us, and make us realise that, yes, things could actually be worse. 

Well, it now looks like my Crohn’s has found a new way to talk to me.

After Christmas, I needed some emergency dental work, which included some root treatment, along with a course of antibiotics (necessary, but always a cause of major fatigue for me). Shortly afterwards, the inside of my cheek started to puff up and show white marks and cracks. We thought it might be oral thrush, so I got an anti-fungal; no change. My GP then thought it might be an infection, so another course of antibiotics; no change. 

So this week, I’ve been back to my GP. She was a bit mystified, so I suggested it might be Crohn’s, even though my disease is fairly inactive at the moment. We both knew it could affect the mouth, but neither of us had ever seen it. She did a quick bit of research, and agreed it was a possibility. So we agreed that I would contact the IBD nurses at the hospital. 

Now I know that this is somewhat different to the norm, but I have had access to specialist nurses (in 2 or 3 different hospitals) for at least the last 25 years. And in my experience, they have always been…what shall I say…less than useful. This occasion didn’t prove any different. As it was in my mouth, and not in my intestinal tract (?!?) it didn’t come under them, so I would need to go back to my GP or dentist for referral to an oral & maxilliofacial specialist. I was disappointed, but not surprised.

So I went to my dentist; really just to confirm that it couldn’t be a dental issue. He took a look, and immediately said that although there could be other causes, it did look like other oral Crohn’s symptoms he had seen. He even went to get some books to show me some pictures! Did I want him to refer me to a consultant? He even offered to try and speak to the hospital that afternoon to speed up the referral. All this, not from my GP, not from my Gastro team, but from my dentist!

So now I just have to wait – we all know that feeling. The symptoms at the moment are more annoying than painful, so I can live with them. But I hope it can at least be looked at before it gets any worse, and becomes more difficult to treat. 

I’ll keep you posted.

If you have Crohn’s or Colitis, you’re probably aware of Crohn’s & Colitis UK. If not, then please visit them; and why not join them?