This is my true story, please don't flame me and as you all know everyone is different - what I did that helped me may not help everyone.
I am now 47, 4 kids happily married and have not had any Crohns like symptoms for probably 5 years or more.
I am drug free, eat what I want, do what I want. My only restriction is I don't drink anymore than 2 coffees a day and alcohol seems to badly affect me.
It all started in 1999. I believe my illness was triggered from some buffet meats that I ate at Christmas - kinda gave me a bad gut. That bad gut didn't go away.
In 2000 I finally went to the doctors who did some stool tests - blood was in the stools, so I had a colonoscopy and they told me it was crohns.
I also was found to have damage villi which is celiac.
Nice....
So with this bad news I got on a bit of a downer, I was pretty bad at the time starting a new business and eating too much convenience food.
I started to see the regular GI docs and was taking pentasa - a sulpur based anti inflam. I remember one holiday in Cyprus the meds and the sun caused me to rash all over - this again was a real low point.
As a job I am an engineer - I design quiet complicated things, I started to look at my disease in the same way, I kept a detailed food diary, noted down how many times I went to the toilet, was there blood and/or mucus, did I get the night sweats... I could see patterns but I think it was all too complicated with a stressful job and busy life style.
The hospital were great in some ways, I got a regular check up and weighed in and got to see a doc who would reassuringly prescribe some more meds. I never really got any further than the anti inflams, I was not going to go down the conventional route and did my darnedest not to surcome to the quick fix steroids.
At this point, everything I ate went straight through me, I would have night sweats that would wake me up and I would have to have a couple of BM in the night before I could get back to sleep - its pretty lonely at 3am in the morning when you feel so god damn awful!!
My nature means that I generally need to know everything about everything and when I started researching crohns I got a lot of different view about diet. The docs were adamant that diet has no effect. However I didn't just listen to them.
Searching on the internet I cam across an Indian ex doctor who was pushing his own herbal remedy, I think 'they' have shut him down now, but I bought 6 months supply.
What I found was that the herbs were a mixture but the most predominant herb was tumeric. I took these and it actually calmed things down, BM going from a 9 (bad) to a 5 - yes I used to rate BM as well...
Ok so its not the answer but if a herb can have an effect then so must food.
So I bought a couple of books, most notably 'breaking the vicious cycle'.
I started on this anti yeast SCD diet.
Now by this time I had had about 4 years of constant loose BM, every day and most nights. 4 days into the diet and I still had not had a BM, in fact when I eventually went it was solid - I came out of the toilet crying!!!
The diet was extreme and in all honest I could not stick to it and the effects were also temporary. However it did show the way.
So I changed my lifestyle, eat local organic vegtables, lots of meat, no processed food what so ever, no sugar, no take aways.
The symptoms became less bad - I guess falling into the 6 BM scale.
I tried homeopathy - did not work.
I tried reflexology - did not work.
Acupuncture - did not work.
Some weird herbs from a nutritionist - did not work.
Then I found him - a guy who does acupuncture and Chinese herbs. This was the biggest change. To be honest I think alternative medicine is so subjective that its not only the treatment but who is giving it and your relationship with them. I saw this guy for about 4 years and he did the acupuncture which seemed to really calm things down and sometime would make my whole body glow and warm - a bit weird but nice (had to be in right mood however).
But the Chinese herbs they were the real mackoy.
I took this nasty tasting tincture twice a day, it was foul - I even started smoking again, so I would have a roll up after it to reduce the taste as I was told not to eat any thing after it.
The real affects were at night. The usual 3 oclock night sweat and rush to the loo. Tummy gurgling and pain in right side - I used to monitor where the pains were also. But sitting down drinking the tincture the pain and rumbling would subside. If I was a medical man I would say that there is a natural steroid in this herb - there may well be but I got no side effects what so ever.
Roll on to today, I no longer see the acupuncturist - he is still doing his stuff and is well recommended locally. I take no drugs am no longer on the hospital lists - in fact they kicked me off when I said what I was doing and that I didn't want any more of their meds - in fact I was threatened - take the meds or you cannot come to the hospital anymore - what kind of joined up thinking is that?!?!?!
So anyway, just to say maybe I was different, maybe I had it mild, maybe you could try something similar - I can only recount my experiences but I remember the pain and I sympathise for anyone with this illness.
The bout of crohn has taken its toll however. I get a lot of headaches some nausea, I have I think inflammation in my joints. I get tired a lot and when I get ill, like the flu my immune systems struggles a lot. But I am no longer doubled over with pain in my guts.
Thats my story - I don't think I am the only one, I got a phone call from the hospital a year or so ago following up on patients they had lost track of and want to come in to see how they were doing - I asked about others - apparently a third or so 'get better', you just don't hear of them because they are better and no longer contribute to forums like these. It also maybe due to the fact that where I live is in SW England near a town called Tones which is a bit of a hotspot for alternative medicine.
Last thing to say is don't give up - there is light at the end of the tunnel, when I was sick I tried everything, took me a while before I found what worked for me.
Take care and good health.
I am now 47, 4 kids happily married and have not had any Crohns like symptoms for probably 5 years or more.
I am drug free, eat what I want, do what I want. My only restriction is I don't drink anymore than 2 coffees a day and alcohol seems to badly affect me.
It all started in 1999. I believe my illness was triggered from some buffet meats that I ate at Christmas - kinda gave me a bad gut. That bad gut didn't go away.
In 2000 I finally went to the doctors who did some stool tests - blood was in the stools, so I had a colonoscopy and they told me it was crohns.
I also was found to have damage villi which is celiac.
Nice....
So with this bad news I got on a bit of a downer, I was pretty bad at the time starting a new business and eating too much convenience food.
I started to see the regular GI docs and was taking pentasa - a sulpur based anti inflam. I remember one holiday in Cyprus the meds and the sun caused me to rash all over - this again was a real low point.
As a job I am an engineer - I design quiet complicated things, I started to look at my disease in the same way, I kept a detailed food diary, noted down how many times I went to the toilet, was there blood and/or mucus, did I get the night sweats... I could see patterns but I think it was all too complicated with a stressful job and busy life style.
The hospital were great in some ways, I got a regular check up and weighed in and got to see a doc who would reassuringly prescribe some more meds. I never really got any further than the anti inflams, I was not going to go down the conventional route and did my darnedest not to surcome to the quick fix steroids.
At this point, everything I ate went straight through me, I would have night sweats that would wake me up and I would have to have a couple of BM in the night before I could get back to sleep - its pretty lonely at 3am in the morning when you feel so god damn awful!!
My nature means that I generally need to know everything about everything and when I started researching crohns I got a lot of different view about diet. The docs were adamant that diet has no effect. However I didn't just listen to them.
Searching on the internet I cam across an Indian ex doctor who was pushing his own herbal remedy, I think 'they' have shut him down now, but I bought 6 months supply.
What I found was that the herbs were a mixture but the most predominant herb was tumeric. I took these and it actually calmed things down, BM going from a 9 (bad) to a 5 - yes I used to rate BM as well...
Ok so its not the answer but if a herb can have an effect then so must food.
So I bought a couple of books, most notably 'breaking the vicious cycle'.
I started on this anti yeast SCD diet.
Now by this time I had had about 4 years of constant loose BM, every day and most nights. 4 days into the diet and I still had not had a BM, in fact when I eventually went it was solid - I came out of the toilet crying!!!
The diet was extreme and in all honest I could not stick to it and the effects were also temporary. However it did show the way.
So I changed my lifestyle, eat local organic vegtables, lots of meat, no processed food what so ever, no sugar, no take aways.
The symptoms became less bad - I guess falling into the 6 BM scale.
I tried homeopathy - did not work.
I tried reflexology - did not work.
Acupuncture - did not work.
Some weird herbs from a nutritionist - did not work.
Then I found him - a guy who does acupuncture and Chinese herbs. This was the biggest change. To be honest I think alternative medicine is so subjective that its not only the treatment but who is giving it and your relationship with them. I saw this guy for about 4 years and he did the acupuncture which seemed to really calm things down and sometime would make my whole body glow and warm - a bit weird but nice (had to be in right mood however).
But the Chinese herbs they were the real mackoy.
I took this nasty tasting tincture twice a day, it was foul - I even started smoking again, so I would have a roll up after it to reduce the taste as I was told not to eat any thing after it.
The real affects were at night. The usual 3 oclock night sweat and rush to the loo. Tummy gurgling and pain in right side - I used to monitor where the pains were also. But sitting down drinking the tincture the pain and rumbling would subside. If I was a medical man I would say that there is a natural steroid in this herb - there may well be but I got no side effects what so ever.
Roll on to today, I no longer see the acupuncturist - he is still doing his stuff and is well recommended locally. I take no drugs am no longer on the hospital lists - in fact they kicked me off when I said what I was doing and that I didn't want any more of their meds - in fact I was threatened - take the meds or you cannot come to the hospital anymore - what kind of joined up thinking is that?!?!?!
So anyway, just to say maybe I was different, maybe I had it mild, maybe you could try something similar - I can only recount my experiences but I remember the pain and I sympathise for anyone with this illness.
The bout of crohn has taken its toll however. I get a lot of headaches some nausea, I have I think inflammation in my joints. I get tired a lot and when I get ill, like the flu my immune systems struggles a lot. But I am no longer doubled over with pain in my guts.
Thats my story - I don't think I am the only one, I got a phone call from the hospital a year or so ago following up on patients they had lost track of and want to come in to see how they were doing - I asked about others - apparently a third or so 'get better', you just don't hear of them because they are better and no longer contribute to forums like these. It also maybe due to the fact that where I live is in SW England near a town called Tones which is a bit of a hotspot for alternative medicine.
Last thing to say is don't give up - there is light at the end of the tunnel, when I was sick I tried everything, took me a while before I found what worked for me.
Take care and good health.