About

Crohn’s backstory

I only have vague memories of once upon a time having normal bowel movements, that was up to the age of about 12 (now being in my mid-forties, it is indeed a distant memory).

I first remember ‘something wrong’ at the age of 12-13, going on a family trip of several hours in the car, and having pain like I had swallowed a giant ball bearing in my stomach. My parents were fairly unsympathetic at the time, I now know annoying sick kids in the car can be a real trial, so don’t really blame them. I had terrible diarrhoea at the destination, and for several days afterward, put it down to food poisoning. When it didn’t really stop, it was put down to side effects from other medications, first tetracycline (I strongly suspect this to be the main culprit in starting my long-term digestive issues), then isotretinoin (Accutane), (has since been suspected of links to Crohn’s/colitis), then prednisone. These drugs were taken in regular courses through teens and into early twenties, and so my stomach problems were explained away by Doctors as drug side effects over this whole period. From early twenties when I was off these drugs apart from occasional courses, it became clear that the diarrhoea/stomach pain was not going away. I continued to see Doctors and Specialists over a number of years, with no satisfactory answers (a process I’m sure many readers will be familiar with) tested for various bacteria, diseases, and conditions, and eventually told ‘You probably have IBS” medical speak for we don’t really have a clue.

 After things continued to worsen over several more years I was admitted to hospital and had a colonoscopy that found I had damage consistent with moderate crohn’s disease, and one stricture in the small bowel. It was good to have a diagnosis, but it soon became clear that the medical community don’t have much idea about the causes and treating crohn’s either (lots of theories, and lots of drugs, with nasty or risky side effects, but not a lot of concrete information).

I began working through prescribed treatments for Crohn’s, amino salicylates (Asacol), prednisone ( I was wary after earlier experiences, and suspecting it may have contributed to the condition in the first place). After about a year of treatment, I felt that the treatments were not making any difference, and were possibly increasing the pain I was experiencing. I continued without medications for a period of about three years, making some diet and lifestyle changes that helped, and improved things somewhat. Then my symptoms started changing somewhat, less pain and diarrhoea overall, but pain in different places, and a lot of stomach noises. Seeing a new gastroenterologist, I discovered through MRI’s and colonoscopy that the damage in my large colon was similar, possibly slightly less than previous, but one stricture in the small bowel had turned into eleven.

I then proceeded to work through a series of prescribed drugs, starting with Azathioprine which I had an immediate allergic reaction too (body rash, severe joint pain, almost unable to walk) then 6-TGN (thioguanine), this produced minor side effects, and I was taking it for a number of years, but it seemed to be doing nothing much in terms of managing  Crohn’s disease. I was then put on a wait list, and eventually tried Biologics (Adalimumab). This seemed to show some initial good results, but these regressed after a few months, then after about six months I developed some nerve issues(tingling in extremities, fingers curling) these went away completely about 5 weeks after ceasing injections. Following this I was prescribed Budesonide, this was moderately helpful, but again any benefits seen seemed to disappear after a couple of months.

Over the many years of being prescribed drugs for Crohn’s disease, I researched and trialled many alternative therapies, supplements, and diets. Eventually I reached the point where I had my own protocol that was managing and improving my disease better than anything I was ever prescribed.

After three decades with symptoms, and two decades with an official diagnosis, my condition has improved dramatically, but still impacts my life severely.

I continue to work on improving this protocol with the same goal we all have, to be Crohn’s-IBD free.

Guy

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