I've had Crohn's for around 25 years (diagnosed when I was 14). Since coming off the drugs a couple of years later (sorry so long ago I can't remember what they were) I've had only minor bouts and never been back to the Doc's. I do get weird allergies from time to time, periods of tiredness (sometimes due to a missed night's sleep) or fever and various joint aches & pains. I would say I've basically been in remission for 20+ years.
I'm happy to say it has mostly unaffected my life. I have an interesting and demanding job, run a business in my spare time, got a post-grad degree and travelled reasonably widely (including cycling through Tunisia and other countries).
Things I found helped me.
Mixing stuff up. It seems to me that sticking with particular proteins eventually resulted in becoming allergic to them for a few years (at least). So if I eat a lot of soy or milk - they will eventually cause minor flare ups (ie a sleepless night). I now vary protein based food stuffs and keep them to small doses. I'm vegge btw. I also found this happened with bathroom products too - use the same shampoo or shower gel for a while and eventually my skin would start stinging or itching. I now mix and match between my stuff and the missus'.
Stress management and relaxation. I started out doing Yoga - and found it very beneficial. Obviously not every pose is possible when your tummy is cramping but the deep breathing and tension releasing exercises are very useful when you are facing a sleepless night due to stomach cramps.
Visualisation. I was very determined that I wouldn't go back to the Doctor again. After being undiagnosed for 2 years, dropping to 4 stone and being on steroids for 6 months I felt I wasn't going back if I could help it. It was partly a side benefit of the yoga and other stress management stuff that I spent a lot of time visualising what the ideal might be and aiming for it.
Regular exercise. OK there are some days when after a bad night it is terribly hard to drag myself out for a long run but I try and manage 3 runs a week.
Go with the flow. Some months I have bags of energy, then I'll have weeks when I feel like a power nap before cycling to work. I vary my workload (inside and outside of work) and playload to take into account energy levels.
Experiment. I recently caught a very nasty stomach bug. Laid me out for nearly a month. Despite having a milk allergy - I thought I would give one of the probiotic drinks a go. It helped clear up the bug - and gave me some of my best weeks this year Crohn's wise. I'm trying the probiotic drink once a week now to see if it continues. Maybe it's a placebo, maybe not - but it seems to work.
I'm happy to say it has mostly unaffected my life. I have an interesting and demanding job, run a business in my spare time, got a post-grad degree and travelled reasonably widely (including cycling through Tunisia and other countries).
Things I found helped me.
Mixing stuff up. It seems to me that sticking with particular proteins eventually resulted in becoming allergic to them for a few years (at least). So if I eat a lot of soy or milk - they will eventually cause minor flare ups (ie a sleepless night). I now vary protein based food stuffs and keep them to small doses. I'm vegge btw. I also found this happened with bathroom products too - use the same shampoo or shower gel for a while and eventually my skin would start stinging or itching. I now mix and match between my stuff and the missus'.
Stress management and relaxation. I started out doing Yoga - and found it very beneficial. Obviously not every pose is possible when your tummy is cramping but the deep breathing and tension releasing exercises are very useful when you are facing a sleepless night due to stomach cramps.
Visualisation. I was very determined that I wouldn't go back to the Doctor again. After being undiagnosed for 2 years, dropping to 4 stone and being on steroids for 6 months I felt I wasn't going back if I could help it. It was partly a side benefit of the yoga and other stress management stuff that I spent a lot of time visualising what the ideal might be and aiming for it.
Regular exercise. OK there are some days when after a bad night it is terribly hard to drag myself out for a long run but I try and manage 3 runs a week.
Go with the flow. Some months I have bags of energy, then I'll have weeks when I feel like a power nap before cycling to work. I vary my workload (inside and outside of work) and playload to take into account energy levels.
Experiment. I recently caught a very nasty stomach bug. Laid me out for nearly a month. Despite having a milk allergy - I thought I would give one of the probiotic drinks a go. It helped clear up the bug - and gave me some of my best weeks this year Crohn's wise. I'm trying the probiotic drink once a week now to see if it continues. Maybe it's a placebo, maybe not - but it seems to work.
