My story - I got better

[Rog]

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.

 

[helena101]

Thank you Rog for your uplifting story!
I agree that alternative medicine has a lot to do with the person you happen to fall upon. As its not such an exact science as western medicine, it has more to do with intuition, instinct, intention and talent, and those things just can't be taught.... Unfortunately I have not managed (yet!) to be drug free, but I do think it's possible to beat this disease, and its great to hear stories like yours!

 

[PVail]

Interesting storey and why wouldnt it work . God knows the doctors are grasping at straws unless your illness has a big red flag on it . I have often though of trying alternative diets and have had positive results from no sugars and processed foods too. I think the problem being that I believe the damage has been done and we will never be the same . Its more a matter of being happy to deal with what you;ve got in a logical way. Im past just taking any drug thats handed to me . Its important to gain some knowledge in order to keep control of your life .
I have not found the answer yet but I suppose its the best of a bad job. My thoughts are if they dont know exactly what it is then surgery aint gonna fix it .

Peter

 

[Beach bum]

Just wanted to say Hi as I also live in your neck of the woods! Glad you found something that has worked for you. I haven't tried any alternative treatments yet but I wouldn't rule them out in the future if I did get poorly again.

 

[UnXmas]

Hi, thanks for sharing your story. I tried alternative treatments for a long time (I wasn't diagnosed correctly at the time, my doctors had assumed Irritable Bowel Syndrome and had not done any tests).

The problem I had was that I tried things one after the other with no good results. I notice you had to try a couple of things which failed before you found something beneficial. Do you think you would have carried on trying alternative treatments if the acupuncture and herbs hadn't worked? I'm just curious, because I found the whole process of trying and failing to help myself incredibly distressing. I think I kept trying far longer than I should have done, because it was just making me miserable. My revelation turned out to be accepting that my illness was outside of my control, and through that freeing myself from the blame I placed on myself for failing to get better, and coming to terms with the reality that I would always be sick. I similarly stopped expecting successful treatment from mainstream medicine, though later mainstream medicine saved my life, even though it couldn't cure me. And funnily enough once I'd realised all this, I was much happier and content to carry on with life with my illness.

You said the success of alternative treatments has a lot to do with the practitioner. Do you think your own view of alternative treatments also played a role in your success? I often see people saying the benefits they've found from alternative treatments, and I wonder why I was so completely unable to feel any better from any of them.

Glad you're feeling good anyway, and I hope your good health continues.

 

[Astra]

Hiya Rog and thanks for your story, I'm glad you're feeling ok xxx

I feel a bit like UnXmas, wrongly diagnosed for 15 years, had tons of drugs over the years, then got a dx of Crohn's, went all blase and complacent, nearly died, the tons of drugs saved my life, blah blah blah!! lol
But I've accepted it too, I've got Crohn's, but it hasn't got me! I now know what to do, I can work full time and manage it, not always control it, but manage it, and that's good enough for me.
And to quote UnXmas cos I feel like this too
'And funnily enough once I'd realised all this, I was much happier and content to carry on with life with my illness.'
Hope you stay well Rog xx

 

[Rog]

Just to add to my first post.
I guess initially you do put all your trust in the conventional doctors.
After a number of visits however, I came to realise that it was not the answer.
They were not able to answer my questions:-
What causes this disease, what is the cure, has anyone been 'cured' with the meds you are giving me?
The alternative responses are: - you body is unbalanced, there is excess heat in your stomach.
Both did not give me the answers I wanted to hear.
However from the alternate method - there are people who have been cured.
I used the word cured because that's just how I feel, everyone talks of remission but its such a negative word ie: you are going to get ill in the future - do I really want to live my life with that hanging over me.
I look at it like this, I got chicken pox when I was a kid, now I may get it again as an adult but I am not in remission, I don't have any chicken pox symptoms so I don't regard myself as still having it, I look at the crohns the same way.
I would dearly love to help others, I know what it was like to have this.
I know that I previously posted what happened to me and the turning points. A big one was the SCD diet, my routine for a week which led to my first solid BM was this:-
NO sugar, black tea, coffee, gluten grains, fruit, processed food, milk.
I lived of tuna salad, herbal tea,organic meat (beef is good, really slow things down in you gut), veggies (hard greens ones mostly, not too many root), rice.
Basically you move away from the western diet and go towards a mixture of asian and medieval. It hard on your system but worked brilliant for me.
Talking about all the things that I tried and that failed....
exotic herbs, combined with massage and some kind of electrical pressure point stimulation - COMPLETE QUACKERY.
Homeopathy - rubbish, no effect whatsoever.
anti parasite cleanse - tried a few time, lost all feeling in my fingers one time, it was wormwood, black walnut and cloves - again quite hard on your system, effect - marginal.

If I were to get ill again and the acupuncture and Chinese herbs did not work then I would look at some of the more extremes - I was actually considering these just before I started improving, these are ingesting worms (immune system fights them rather than gut lining) and fecial ingestion (taken from a close family member after you have had a large does of antibiotics, to replace your gut flora with one that works).
Guess both of these would have to be done under very close supervision and with an open minded doc. But I would have probably just gone on ahead anyway, I have lost a lot of faith in the conventional system.

I guess I just read too much, like I said, I treated this disease like a problem that had a solution, I just had to kinda go round the houses to get there. The solution was found mostly by trial and error and when its your body that's the subject of the trials its quite hard and scary.

 

[UnXmas]

I get what you're saying about remission making it seem like the disease is still hanging over you. There can be quite a lot of debate about how to define remission - by test results? by the presence or absence of symptoms?, and how long would a person have to be symptom free or with negative test results to qualify? These are real questions to consider, but what's more important to the person going through the illness is whether or not they feel cured.

I've heard people with cancer talk along similar lines - once the cancer's in remission, they still can't shake the fear it will return because they know the risk is never completely gone. So I can understand why it's important for you to consider yourself cured from Crohn's, and how you can live much more freely with that frame of mind.

I've tried the type of diet you describe, tried many variations of it, and it didn't do me any good at all. I think perhaps that's one reason why it's so difficult to establish an accepted alternative treatment for Crohn's - even when something works for some people, the number of people who benefit is too small for it to be worth those in mainstream medicine researching. The medications used to treat Crohn's don't guarantee success either, but they have helped enough people to be recognised as something worth trying.