Newbie

[Gully]

Hey guys imdavid from Perth wa Australia
Had Crohn's since I was 15 I'm 23 not in recession
Had a few colonoscopys they put me on 500mg
Of pentasa haven't really taken any just been working at the gym
Eating right and having mm even though its illegal
In Australia it's the only thing that helps for it so anyways that's me
Hope to read some story's about how everyone else
Deals with it cheers

 

[scottsma]

Hi David and welcome.Glad to hear something's helping.There are a good few people on the forum doing the same, so someone will be along to chat with you soon I'm sure.Those from the USA will still be asleep,although there are quite a few Aussies on here too.

My son lived in Perth,Edgewater,but is in Kalgoorlie now. Enjoy what's left of your day.

 

[Gully]

Ahh yeah edge water is only about 20 minutes drive from me and thanks hopfully get some info about my swollen lip I've had to see a specialist for he gavw me 18 injections into my lip for the swelling to go down apparently due to my Crohn's but few weeks later it just swelled up again where can I post this for some info? Cheers mate

 

[strawberrys78]

Hi David!

I'm 21 and also have Crohn's Disaease. Been dealing with it for the last couple of years or so. I tried pentasa as well first when I got diagnosed, and it didn't help me at all! Since then I've tried a ton of meds but don't really feel any better lol.. hoping there is a light at the end of the tunnel! Such a hard disease to deal with, especially when you're young. I don't have a social life sadly! Good luck with everything.

 

[Gully]

Sorry to hear that strawberry I didn't really notice any difference taking it or not so have been off all medications for about 2 years it has its ups and downs I still try and have a social life makes it hard sometimes though all the best to you though hope you cope alright

 

[Robrich]

Hi gully
Some people will tell you get the meds even humira to. Control the inflammation otherwise you will face more severe problems down the road.
Others will tell you to try other drugs and others will. Advise the natural and healthy way. You will literally have to choose your own poison.
I ve had this disease since 15as well that was a long 50 years ago and i have had a pretty darn god life with way more than my share of sufferings to with it.
5asapentasa etc usually doesn't work for crohns maybe move on.
It is very important your symptoms and inflammation are under control
in the 70s that meant prednisone which gave me a life along with a macrobiotic diet, cannabis and some good luck. No SCD or paleo then. But I did that later on with some success. And today you have entocort, maybe you can get remission with that and get off or stay on a low dose. If you do all the other healthy stuff that is what I would recommend save the biologics and 6mp for when you are desperate. None of them or anything will work forever for 95% of us!
Not to forget there are some great treatments coming in the next 5 y ears or so.
So hang in there.

I Only needed 5 mg pred. day and sometimes none for many years and I had a great lifestyle and social life but after about 15astricture and abscess reared it's ugly existence like the creature from alien and about the same time.
Colon resection
Not so bad still have both ends but within a year PA fistula disease returned and so it goes.
Remicade now entyvio along with a strict paleo, work from home.
Make the adjustments in your life, healthy low stress find a good life partner and try to enjoy yourself and not suffer.
If it means drugs so be it.
Good luck to you

 

[syzygy]

Gully, glad to hear that you're feeling well. It might not be a bad idea to get blood markers checked or even some imaging now and again to make sure there's no simmering inflammation.

 

[alex_chris]

Hi gully
Some people will tell you get the meds even humira to. Control the inflammation otherwise you will face more severe problems down the road.
Others will tell you to try other drugs and others will. Advise the natural and healthy way. You will literally have to choose your own poison.

If you do all the other healthy stuff that is what I would recommend save the biologics and 6mp for when you are desperate. None of them or anything will work forever for 95% of us!

I know you said others will say try other drugs and here I am . I was in the same shoes and mindset as Gully in my early years after diagnosis. Was prescribed pentasa, which for Crohn's is pretty much useless. I did not use any other drugs for the first years and probably had constant inflammation despite trying to work out and eat foods that did not get me into trouble. As with the majority if untreated young Crohn's patients that ended up with surgery. Unfortunately, if untreated, if there is regular activity/inflammation it is just very likely that strictures form in the smaller intestine.

So there is a reason the view today of modern Crohn's treatment is to use effective drugs in combination with diet, stress relief, treating vitamin and mineral deficiencies etc., simply because the potential long term use consequences (over decades) of immunosuppressives such as 6mp/aza or biologics are a lot less likely than the severe consequences of untreated Crohn's.

I am not saying that people can't stay in long term remission without drugs, actually that is my own goal as well and I tried it from 2008-2010 and again this year and will try it again. What I am saying is, it is hard and for the vast majority of patients very hard at the onset of Crohn's before they were able to be in long term (drug induced) remission for several years.

 

[strawberrys78]

Hi gully
Some people will tell you get the meds even humira to. Control the inflammation otherwise you will face more severe problems down the road.
Others will tell you to try other drugs and others will. Advise the natural and healthy way. You will literally have to choose your own poison.
I ve had this disease since 15as well that was a long 50 years ago and i have had a pretty darn god life with way more than my share of sufferings to with it.
5asapentasa etc usually doesn't work for crohns maybe move on.
It is very important your symptoms and inflammation are under control
in the 70s that meant prednisone which gave me a life along with a macrobiotic diet, cannabis and some good luck. No SCD or paleo then. But I did that later on with some success. And today you have entocort, maybe you can get remission with that and get off or stay on a low dose. If you do all the other healthy stuff that is what I would recommend save the biologics and 6mp for when you are desperate. None of them or anything will work forever for 95% of us!
Not to forget there are some great treatments coming in the next 5 y ears or so.
So hang in there.

I Only needed 5 mg pred. day and sometimes none for many years and I had a great lifestyle and social life but after about 15astricture and abscess reared it's ugly existence like the creature from alien and about the same time.
Colon resection
Not so bad still have both ends but within a year PA fistula disease returned and so it goes.
Remicade now entyvio along with a strict paleo, work from home.
Make the adjustments in your life, healthy low stress find a good life partner and try to enjoy yourself and not suffer.
If it means drugs so be it.
Good luck to you

I know what you mean with the prednisone - is it literally the only thing that helped me (in high doses), most times I felt like I didn't even had crohn's.. however it also made me extremely hyper and my thoughts went a little crazy, it's like a deal with the devil. Wish it wasn't so hard on your body! I'm on remicade as well.

 

[sammyb22]

Hello.
Being new to all of this, please forgive my ignorance when I ask, what is mm?

 

[syzygy]

MM = "medical marijuana"