- Joined
- Oct 23, 2024
- Messages
- 2
It all started on a winter sun holiday to Lanzarote. I had stomach pain severe enough to make me stop eating, and sudden profuse rectal discharge. I thought holiday tummy but saw a local Doctor who offered to refer me for investigations. I decided to wait until I got home.
On my return I went to A&E having eaten nothing for weeks and still in a lot of pain. I was admitted for further investigations, but the following morning I was sent home by a Colorectal Consultant, who felt the necessary investigations could be carried out on an outpatient basis.
A week later, and before any of the investigations were carried out, I started vomiting and felt very unwell. I called an ambulance who told me 'Well, we can take you but they won't do anything for you' - as if they felt I was a timewaster. Two hours later I was vomiting altered blood and called again. This time when they came, and repeated what they said the first time, I insisted on going in.
Next time my husband saw me was in ICU, given a less than 50% chance of recovery, with a ruptured sigmoid, sepsis, delerium and a colostomy.
I won't described the disgraceful treatment I received on the ward, where they assumed the after effects of delerium were dementia and treated me accordingly - not realising I would recover to tell the tale.
Histology post surgery showed evidence of Diverticular Disease (which I was aware of but without symptoms) but was also suggestive of Crohns. What followed was a 4 year conflict between Colorectal and Gastroenterology as to which it was.
During those years I would have hospital admissions during bad flares, that only responded to IV Steroids. The vast amount of investigations would sometimes come back Crohns, usually if an outside consultant carried it out. I would be regularly discussed at MDT, but still - no diagnosis. Meanwhile, the gut damage increased. First just one fistula, now three. Now a stricture resulting in blockages. Finally this year a letter to my GP stated 'Perforated Sigmoid Colon due to Crohns.'
Having struggled alone and without any help for 4 years flaring on and off, and with Consultant appointments few, I thought I would be getting support now from the IBD Team. It turns out that they are fixed with the 'classic' presentation of uncontrolled Crohns - profuse diarrhoea with blood and loss of weight.
Mine presents as autoimmune guerilla warfare, ranging around the body and attacking at will. I am fat, mostly due to repeated courses of steroids and immobility caused by reactive arthritis. I have always been constipated and need regular laxitives. In a flare sometimes the gut is the focus, sometimes the joints, sometimes eczema or psoriasis breaks out, sometimes profuse mucus discharge, but the main issue is bleeding perianal ulceration which has caused damage that never fully heals. I'm never without some of these symptoms.
I was finally trialled on Infliximab but was unsuccessful. I am due to start Ustekinemab soon but, to be honest, have little hope of change.
On my return I went to A&E having eaten nothing for weeks and still in a lot of pain. I was admitted for further investigations, but the following morning I was sent home by a Colorectal Consultant, who felt the necessary investigations could be carried out on an outpatient basis.
A week later, and before any of the investigations were carried out, I started vomiting and felt very unwell. I called an ambulance who told me 'Well, we can take you but they won't do anything for you' - as if they felt I was a timewaster. Two hours later I was vomiting altered blood and called again. This time when they came, and repeated what they said the first time, I insisted on going in.
Next time my husband saw me was in ICU, given a less than 50% chance of recovery, with a ruptured sigmoid, sepsis, delerium and a colostomy.
I won't described the disgraceful treatment I received on the ward, where they assumed the after effects of delerium were dementia and treated me accordingly - not realising I would recover to tell the tale.
Histology post surgery showed evidence of Diverticular Disease (which I was aware of but without symptoms) but was also suggestive of Crohns. What followed was a 4 year conflict between Colorectal and Gastroenterology as to which it was.
During those years I would have hospital admissions during bad flares, that only responded to IV Steroids. The vast amount of investigations would sometimes come back Crohns, usually if an outside consultant carried it out. I would be regularly discussed at MDT, but still - no diagnosis. Meanwhile, the gut damage increased. First just one fistula, now three. Now a stricture resulting in blockages. Finally this year a letter to my GP stated 'Perforated Sigmoid Colon due to Crohns.'
Having struggled alone and without any help for 4 years flaring on and off, and with Consultant appointments few, I thought I would be getting support now from the IBD Team. It turns out that they are fixed with the 'classic' presentation of uncontrolled Crohns - profuse diarrhoea with blood and loss of weight.
Mine presents as autoimmune guerilla warfare, ranging around the body and attacking at will. I am fat, mostly due to repeated courses of steroids and immobility caused by reactive arthritis. I have always been constipated and need regular laxitives. In a flare sometimes the gut is the focus, sometimes the joints, sometimes eczema or psoriasis breaks out, sometimes profuse mucus discharge, but the main issue is bleeding perianal ulceration which has caused damage that never fully heals. I'm never without some of these symptoms.
I was finally trialled on Infliximab but was unsuccessful. I am due to start Ustekinemab soon but, to be honest, have little hope of change.
