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Crohn's Disease Forum » Your Story » Recently diagnosed with Crohn's and hoping for some answers


03-20-2017, 05:32 PM   #1
Richard_
 
Join Date: Mar 2017
Location: Sydney, New South Wales, Australia
Recently diagnosed with Crohn's and hoping for some answers

Hello Everyone,

My name is Richard, I'm 33 years old from Australia and was diagnosed with Crohn's disease approximately 5 weeks ago. Before the diagnosis I had 3 instances of fistula (very painful and debilitating) and this was over the course of the last 16 - 18 months. For the first and second occurrence of fistula I underwent lay open procedures on both, and also received a sigmoidoscopy and colonoscopy. Neither of these picked up on the Crohn's disease initially and I recently had my third fistula lay open and colonoscopy, from which I was diagnosed with Crohn's disease.
I will be honest I felt a brief moment of relief that something had at least been found after such a length of time, however I am struggling to come to terms with it now. I had convinced myself after the first colonoscopy that I didn't have Crohn's or UC, and so when I was told 5 weeks ago that I did actually have Crohn's it kind of came out of nowhere. The Dr got straight down to business and prescribed me with with Budenofalk and Imuran and advised that I start taking them right away. Well I went away and decided to read a little about Immune suppressive drugs and what I found definitely worries me.
The main thing I want to understand is if anyone has had success in controlling the disease through diet/lifestyle/hygiene alone? I haven't begun taking the medication yet, and I have informed my GP that this is my intention for the next week or so whilst I try and get my head around it all. I have heard so many differences in opinion on treatment options and best practices that I just feel lost now.
I was reading a book recently "Self Healing Colitis and Crohn's" by Dr David Klein and a lot of what he says really strikes a cord with me. I was intrigued as to if anyone had read and implemented the methods of diet and hygiene that he refers to in the book, and if they had any success with it?
I appreciate any thoughts or information at all, many thanks.

Richard
03-20-2017, 06:32 PM   #2
cmack
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Location: British Columbia

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Hi Richard,

Welcome, I'm sorry to hear about the struggles you have been faced with. Everybody is different. Personally I found that quitting smoking and eating more fruits and veggies helped me. This approach works to an extent. Sometimes meds or surgery are needed to achieve remission. After that you may be able to manage your disease with diet, and lifestyle choices, reducing stress etc.

You have found a good place for support and useful information. I look forward to getting to know you.


All the best and welcome again,

cmack
03-20-2017, 07:05 PM   #3
Scipio
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The Dr got straight down to business and prescribed me with with Budenofalk and Imuran and advised that I start taking them right away. Well I went away and decided to read a little about Immune suppressive drugs and what I found definitely worries me.
Welcome. You are still in a little bit of shock from the diagnosis of a serious, incurable disease. So it's very understandable at this point to be worried about all the scary-sounding risks associated with the powerful medicines that are used to treat Crohn's. And the attraction to diet an hygiene as alternatives is also very understandable.

Diet and hygiene are important of course, and you should use them as much as possible to help with your disease. They can only help. But unfortunately they are relatively weak in their beneficial effects. For a serious illness such as Crohn's, a large majority of patients require stronger measures to control their disease - hence the powerful medicines.

The risks of serious adverse events from the immunosuppressive drugs are real, but they are small risks. By far the biggest risk to health that Crohn's patients face is not a risk from the drugs but the risk from untreated Crohn's. Accordingly, my advice is to listen to your GI. Take the medicine and get your disease under control. Without it your odds of suffering serious complications requiring multiple surgeries and hospitalizations are quite high.

You've already seen how nasty fistulas can be. With uncontrolled disease you are going to facing a lot more of those, with high risk of strictures, bowel blockages, and abscesses thrown in for good measure.
03-20-2017, 08:06 PM   #4
cmack
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Richard,

It never hurts to eat a healthy diet and avoid smoking. It is by no means a cure all. It does help though. You can use all the help you can get right now. I would take the meds and discuss your concerns with the doc. Your disease has to be brought to remission, whatever it takes.

I wish you the best,

cmack
03-21-2017, 07:36 AM   #5
Richard_
 
Join Date: Mar 2017
Location: Sydney, New South Wales, Australia
Thank you both CMack and Scipio for the quick response, much appreciated. I understand that there are many factors involved in trying to return to some kind of normality and good health after what feels like forever.
I think I'm still trying to get to grips with the diagnosis and what it all means, hence my initial reluctance to jump straight into treatment. I had heard of Crohn's disease up until 6 weeks ago but I had no idea exactly what it was and how it affected so many people.
I am beginning to realise the importance of getting the disease into a remmisive state to avoid more potentially dangerous health problems.
Thanks again to both of you, I am greatful for your advice and time.

Cheers,

Richard
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