Recently diagnosed

[nyc2pdx]

Hello,

I am just starting my journey post diagnosis.

For the past 4 years, I have had constant daily diarrhea, cramps, and "leaking". It was having a profound affect on my life. I actually gained weight because I couldn't exercise with the diarrhea, was spending half my day hiding in the bathroom (checking to make sure I was alone first)-afraid that someone might notice the gurgling in my abdomen...the worst was in meetings when there was a moment of silence-all of a sudden you would hear my abdomen gurgling and everyone would look over. The whole experience was so embarrassing. Finally, when I noticed some blood, I spoke to my doctor.

After a colonoscopy, and a consult with a GI, he diagnosed me with small bowel crohns. Thankfully it has not yet gone into the large intestine, but it appears some family members also have Crohns, and the progression was from the small bowel to the large-then it gets pretty bad. So, hoping I caught it early. My doctor has placed me on entocort first at 9mg, then titrating down to 6mg after 2 weeks, and then after another 2 weeks, down to a maintenance of 3mg for the next 4 months.

I am astounded. I feel like I have my life back. I am having almost no symptoms, no side effects, actually felt confident enough to wear off-white shorts (!!) and went for a long walk today. Wow!

So now, I want to start learning all I can about this. Alternatives to treatment, diet-I don't want to take meds all my life if I don't have to!

Any ideas where I can start?

Thanks

 

[DustyKat]

Hi nyc and :welcome:

So glad to hear that everything is under control and you are feeling much better. You'll find lots of great advice and support here. Search the forums and for something more light hearted, play some games! Hope to see you around.

All the best,
Dusty

 

[Dexky]

Haha, like your travel plans nyc2pdx!! Welcome to the forum. There is a great deal of advice on here about diet and treatments. If you can't find what you are looking for, you can ask any question and someone will have "had that, done that, tried that etc.etc". Stick around

 

[Crohn's 35]

:welcome: Glad you found us! There are a few ways other than meds to go to. One is a very strict diet, doesnt cure it as nothing does but it helps. LDN which there is a lot of information on here about it and Dan Bergy is our most informative person who is active on here.

Holistic approach is available but you have find a naturalpath or nutritionist who specializes in bowel disorders.

Hope you find what you are looking for.

 

[Astra]

Hi nyc
and welcome

glad the Entocort is working for you, altho a milder derivitative of Pred, it does the trick! I'm pain free and on my 3rd month of entocort, down to 3mg now, it certainly hasn't got the side effects of Pred!
As regards to diet, if I'm flaring I tend to stick to the low residue diet for a while, works for me, you can find this in the diet and treatment threads, but I have to say, with the best will in the world, no diet will stop inflammation when it strikes, great to combat the D, but usually a maintenance med like Pentasa will/can/may prevent it!
glad you found us, see you around
lotsa luv
Joan xxx

 

[Claire617]

Heya nyc,

It's strange how a diagnosis, whatever it may be is sometimes a relief! Hope everything stays good for you, to be honest I have never chosen to go on a diet, willpower and motivation being an issue, however I do stay away from anything I know can trigger symptoms.

Best of luck and welcome!