Our Crohn’s inflammation is outside of the bowel

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My colon was so inflamed and had started to rupture. It needed to be taken out – as well as my rectum, anus and gall bladder. The surgery was very traumatic. When the surgeon came to see me afterwards, he said that my colon and rectum had stuck to the womb, bladder and other organs. They tidied it up as best as they could without causing further damage and gave me an ileostomy. It saved my life.

Within four months I was eating again and felt more positive, then I went back to work nine months later. However, five years on, I started getting strange painful sensations in the pubis above the clitoris. It felt bruised and sore. I don’t have periods anymore and a procedure a few years ago means that I don’t have a womb lining, but I started to notice some mucky blood. The GP wasn’t sure what was wrong and sent me for blood tests.

I was given strong antibiotics because I struggled walking. It felt like I was walking with a tennis ball between my legs, the inflammation was so bad. My consultant examined me and said: “You’ve got a hole where you shouldn’t have a hole, just above your clitoris.”

I had to be on the medication back-to-back as further infections would develop as soon as I finished each dose. Then I realised I had another fistula further back, near where the exit point had been for my anus.

Eventually, after much toing and froing with different consultants, I was told that I might have vaginal Crohn’s, which is where the disease has communicated itself into tissue my colon had been attached to. Luckily, it was in the early stage as I was told if it’s left too long you can start to develop ulcers as tissue breaks down.

I was referred for a second opinion and they said, “I won’t call it vaginal Crohn’s because you’ve got fistulas in more than one location. I’ll call it Ectopic Crohn’s as it is occurring outside of the intestinal tract.”

I’m now on adalimumab injections and there has been an improvement, but the infections and bleeding are still happening. I think the most important thing is for people not to ignore any symptoms – just because they are not in the place where they usually are doesn’t mean it isn’t connected to your Crohn’s.

If you have Crohn’s the symptoms you have might not be normal so please pay attention to anything unusual. Listen to what your body’s telling you and don’t let your GP or your consultant dismiss you.

WHAT IS ECTOPIC CROHN'S?

Crohn’s Disease develops in the digestive tract between the mouth and anus. In rare circumstances, it can spread to the vulva or vagina following a fistula in the perineum and/or rectum. This is known as Ectopic Crohn’s as it occurs outside the digestive tract.

It started out as one or two mouth ulcers and got worse over the course of a week. Eventually I had ulcers all over my lips and tongue. Eating, swallowing liquid, and talking became impossible. I was admitted to hospital and stayed for a week on antibiotics until my symptoms got better.

As I hadn’t been diagnosed with any type of Crohn’s or Colitis, the medical staff treated it as herpes even though I’d never had a single cold sore. After a week it cleared up slightly, so I was able to eat and drink, which was good because my weight had dropped. The hospital wasn’t sure what was happening but I seemed better so I was told I could go home.

It was difficult to eat and drink while I was healing and I’ve still got scars on my lips from then, although I haven’t had ulcers since.

The following month, I went into my local hospital to have a colonoscopy, and that’s when ulcers were found in my colon and I was diagnosed with Ulcerative Colitis. Unfortunately, during that procedure my bowel was perforated, so I had a total colectomy. I spent seven weeks in hospital and my weight dropped even more.

At first people wouldn't believe there was anything physically wrong and said it was all in my head. It was around June last year that I finally got a diagnosis of Oesophageal Crohn’s after an endoscopy found a stricture that made my throat only 3mm wide, instead of 20mm. I also had ulcers in my oesophagus and was prescribed prednisolone, which helped a bit, and then I moved on to infliximab.

Now, around once a fortnight, I have my throat opened by endoscopic balloon dilation. When my throat is first opened, I can eat normal foods like pizza and the like, but as it closes, I have to eat much softer food with smaller pieces and then liquids until it is opened again.

WHAT IS ORAL CROHN'S?

Crohn’s affects the mouths of more than half of patients with the disease. Inflammation manifests as open sores that can appear on the tongue or between the lips and gums, making eating and drinking difficult. These ulcers may appear during a flare-up and can be treated with Crohn’s medication.