Advice Please

[Lisaleigh]

Hi I am five weeks old newly diagnosed- with crohns- that is my 45 year old hubbie was diagnosed with crohns five weeks ago. His GI says he has moderate to severe crohns in his ileum and patches in the colon. He has been prescribed cortisone for 2 months- meticorten and mezavant an anti- inflammatory.
When I last spoke to his GI he told me that he thought my hubbie would require more aggressive maintenance therapy for his crohns ie immunosuppressants.

I have virtually collapsed in a heap with all this bad news!!! It's been such a shock. Anyway he has also seen a dietician and has adjusted his diet, although he hasn't quit smoking yet.
I have spent the past five weeks having a freak out and googling everything I could possibly read up on crohns.

I was hoping for some hope .....really badly....like the chances of a cure in the future? Or finding medication without too many side effects.?
I even looked into ayurvedic treatment options.

So now I finally want to advice please.
I'm versy scared of him going onto immunosuppressant drugs. What options do we have?

Knowledge is power- and your experience can really help us....THANKS:ack::ack::ack::ack::ack:

 

[DJW]

Hi and welcome.

I'm sorry your hubby's diagnosis. It takes time to come to terms with this disease. There is a grieving process that we go through. That's perfectly natural. Allow yourselves to go through it.

Google and the internet are a double edged sword. Great place for quick and easy information. It's also filled with worse case scenarios; not the least bit helpful for the newly diagnosed. Even with this forum you can get that same freaked out feeling. But remember, people doing well are out enjoying life.

I was told by my GI that if you have to be diagnosed now is the time...lots of breakthroughs. When I was diagnosed there weren't as many treatment options available. It was tough.

Regarding treatment: biologics and immunosuppressive drugs come with risks. They are actually very small. Risks associated with no treatment or under treatment are significantly higher.

Right now I would suggest keeping a food and symptom journal. Try and pinpoint trigger foods.

Sending you both my support. It gets better.

 

[Lisaleigh]

Hi thanks so much for this.....it really has been traumatic for me the news alone.....I sometimes wonder how my husband can be so strong. So there really are a lot of breakthroughs at the moment? What about possible cure breakthoughs predicted? Is there some hope? Like with the Map vaccine? Do you know anything about the Indian Ayurvedic treatments or natural treatments? I am a bit scared of them incase they aren't effective and he really does need the stronder prescribed western medication. Shame though I really don't want to see him on immunosuppressants.
He has always been a smoker- that's the first thing everyone says is you must stop smoking.....are there any smokers out there?
If he were on an immunosuppressant could he have the occasional Windhoek light beer or never?
It's dramatic changes we have to make and it's been scray with him not able to eat any wheat or have much dairy.
I wonder if things like reflexology etc help?
I've done sooooomuch googling.....even heard of a "faecal transplant"tee hee......talk about over anxious wife:ysmile:

 

[DJW]

Regarding alternative treatments: many people uses them because they help you feel better and give an added measure of control. I do not believe they can replace proper medical treatment. Under treating crohn's can cause serious complications. When I was younger none of the meds worked. It lead to many abscesses, fistulas, strictures, obstructions, etc. and ultimately my permanent ileostomy.
I've researched different treatment options and have not found quality research into its success. But it can help with symptoms. Keep in mind no symptoms does not mean no active diseased. Inflammation can still be present causing irriversable damage.

Try reflexology and other natural treatments. Keep your doctor informed. Natural doesn't automatically mean safe.

Cures: things are being tested...we can certainty hope. Fecal transplant has been proven extremely effective in treating c diff which many CD suffers get.

Smoking and such: smoking can agrivate CD and make meds less effective.
I'm on remicade and imuran and still enjoy a beer or glass of wine with no issues. If I have to much I'm on the toilet a lot before I get drunk. I never get drunk.