"Diagnosis and treatment for Crohn's Disease"

About: Raigmore Hospital / General Surgery Uist & Barra Hospital / General Surgery Western Isles Hospital / General Medicine

(as the patient),

One night in August 2010, I woke up with severe stomach pains and vomiting. I assumed I had some sort of stomach bug, but after several days the symptoms persisted and continued to develop. I began to have nagging pain in my pelvic area and lower right quadrant and all the symptoms of a urinary tract infection.

Over the next four months, I made several trips to the local GP surgery in Benbecula where I was treated with antibiotics for a suspected UTI but also advised that I might have a grumbling appendix. The UTIs persisted and I was tried on a different set of antibiotics. During this time, I began to lose weight rapidly and I realised that eating made the pain and other symptoms worse.

Eventually, feeling very ill, run down and concerned, I made an appointment to see my favourite GP who agreed that there might be something underlying these symptoms - possibly another ovarian cyst, as I had had one years ago which had caused me a lot of bladder problems. She referred me for an ultrasound which showed no problems with my appendix or ovaries, but did show that there was an issue with an area of my bowel.

At my post test appointment with my GP, the possibility of Crohn's was first mentioned and she referred me to a specialist. It was a bit of a shock to me really and we were both a bit surprised as my symptoms were not all the typical ones experienced by Crohn's patients.

I saw the specialist about a month later and he referred me to Western Isles Hospital in Stornoway for a Barium Follow Through and I finally had the confirmation that it was Crohn's Disease. In ways it was a relief to get this diagnosis as I finally had an answer to what was causing these very distressing symptoms.

I was then referred to a gastro specialist from Stornoway and my battle against the disease began.

I began to improve a bit on steroids and an immunosuppresant, but the bladder issues persisted and a CT scan confirmed the GIs suspicion that I had a fistula from the bowel to the bladder. When this didn't heal on medication, the GI advised me that I would probably need surgery to correct this and sent me to Raigmore in Inverness for a pre-op assessment. By the time I got there, tests showed that the fistual had indeed closed but that there was still severe inflammation in a loop of bowel and they advised me to try a course of Infliximab.

I was flown to Inverness three times from October to November 2011 to attend the infusion suite at Raigmore for the treatment. I responded well, felt better than I had in over a year and a colonoscopy in February confirmed remission.

I stayed on immunsuppresdants for maintenance, but six months after the final infusion, the symptoms began to return. At Raigmore, I had met the only IBD specialist nurse for the whole of the Highlands and Islands who had told me to contact him any time I had any questions or issues. I emailed him and he spoke to my consultant at Raigmore who called me over there for tests.

As the fistula had opened again I was advised that surgery was going to be my best option at that point. I had an ileocaecal resection and partial cystectomy at the end of September 2013.

Since that time I have been in remission and am not on any drug treatment as my disease had proved to be drug resistant. I am very happy to have the opportunity to share my story. Crohn's can be a difficult disease to diagnose, but once it had been I felt I was treated quickly and appropriately. I am so thankful to the NHS medical professionals involved in my care - my GPs, consultants, nurses and hospital auxiliaries. At all points I was treated with concern and respect.

I worked abroad for several years and if other patients had, they would not take for granted the NHS service.

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Response from Lillian Crichton, Patient Focus Public Involvement Development Officer, Clinical Governance, NHS Western Isles

Dear “Haloona”,

Thank you for taking the time and trouble to post these comments about your experience of diagnosis and treatment for Crohn's Disease at NHS Western Isles. I am sure the time before diagnosis could be very worrying. I am pleased to learn that once you had your diagnosis confirmed our staff did everything to treat you well and provide you with the information and reassurance you needed.

I will pass your comments on to the staff concerned.

Kind regards

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