Just got diagnosed today :(

[sara88]

Hi guys..I just got diagnosed with crohns today. It all started with a lower right abdominal pain that felt like a knife. I was told it may be an ovarian cyst and sent for an ultrasound..when I got to the ultrasound the tech told me my appendix is inflamed and there is a partial blockage in my bowel and sent me straight to the ER. A CT was done at the hospital and they admitted me. They kept me for 4 days on antibiotics then sent me home for another two weeks wih more antibiotics to bring down the inflamation and remove my appendix...I went back to emerge with pain and they ordered a colonoscopy....my terminal ileum and sigmoid and appendix are all inflamed and it is a bad crohns flare...I know nothing about the disease or how to manage it and I am waiting for my follow up to get medication...any suggestions on diet to help calm things??

Thanks!

 

[Gra]

Dear Sara, regarding diet.
What works for one person won't necessarily work for the next. One of the basic rules of IBD is that we are all different.
My suggestion is, make a diary of everything you eat and what symptoms you have, and when. Use the diary religiously. After a few weeks you will begin to see what foods work for you and what foods don't.
The best food plan for you is the one you discover yourself.

Footnote: there is a phone app called gi monitor which is set up to help you keep track of your diet and medications etc. Very useful, I use it every day.
Gra.

2

 

[Noonie]

Hi Sara,
I am sorry to hear about your pain and hospital stay. I hope you are feeling better today. Tough diagnosis to hear. I have Crohns (Regional Enteritis) amongst a myriad of other ailmants.. so I can relate. I was diagnosed in 2008. I have been use the diet called the FODMAP.. here a link and PDF file you can take a look at if you like:
http://ibs.about.com/b/2014/03/12/printable-fodmap-diet-chart.htm (fodmap-intolerances.pdf)
I try to eat real low fats, low caffeine, low sugar, no NSAIDS (Tylenol, Advil, Aleve, Aspirin.at all ever, never ever) No wheat... etc.. It is hard! But worth it.. and there is still lots of stuff to eat.

It seems to help a little.

I have tried all the Biologic medications as well and Cimzia is the best for me as well as an immnosuppressent called Azithoprene...and lots of others.. but those two are the main ones.
Everyone is different and it takes some time to get the right concoctions sometimes that works best for your chemistry and body.

Hang in there! At first it is scary and I know ya feel like crap...It will get better and it sounds like you are in good hands! Hugs!

 

[BuzzyBee]

OK, so you have inflammation sites at both ends of your colon. Did the hospital send you home with any meds? Dietwise, as long as you have inflammation you will have some degree of stricture. You will definitely need to avoid chunky or gristly food, nuts, fruit & veges with skins, seeds, long fibres (celery, rhubarb, pineapple, etc.). For many of us, avoiding all non-soluble fibre during flares helps a lot.

As Gra recommended, keep a food diary, there's nothing so good for figuring out what you can and can't eat during flares and in normal times. Unless you have food *allergies*, it's generally the texture, particle size and fibre/gristle content that provokes the pain and diarrhoea during flares. A good quality blender is a good investment, believe me. A baby food mill doesn't cut it! (pun intended!) If you get really severe flares, smoothies can end up being your saviour, literally.

Another life-saver is V8 juice and, for quick meals on the go when the going is tough, buy in a few jars of baby food and some baby cereal. Oh, and if you drink instant coffee, give it up completely and use an espresso machine or a plunger. Instant coffee has detergent in it to make it soluble and it can play havoc with your gut.

 

[baistuff]

Hi Sara,
I am sorry to hear about your pain and hospital stay. I hope you are feeling better today. Tough diagnosis to hear. I have Crohns (Regional Enteritis) amongst a myriad of other ailmants.. so I can relate. I was diagnosed in 2008. I have been use the diet called the FODMAP.. here a link and PDF file you can take a look at if you like:
http://ibs.about.com/b/2014/03/12/printable-fodmap-diet-chart.htm (fodmap-intolerances.pdf)
I try to eat real low fats, low caffeine, low sugar, no NSAIDS (Tylenol, Advil, Aleve, Aspirin.at all ever, never ever) No wheat... etc.. It is hard! But worth it.. and there is still lots of stuff to eat.

It seems to help a little.

I have tried all the Biologic medications as well and Cimzia is the best for me as well as an immnosuppressent called Azithoprene...and lots of others.. but those two are the main ones.
Everyone is different and it takes some time to get the right concoctions sometimes that works best for your chemistry and body.

Hang in there! At first it is scary and I know ya feel like crap...It will get better and it sounds like you are in good hands! Hugs!

One small but important correction- Tylenol is NOT an NSAID. NSAIDs like advil, aleve, motrin, aspirin should certainly be avoided by those with IBD. Tylenol is NOT included in that list.

 

[sara88]

Thanks for your help guys...any idea approx how long these flares last or is that different for everyone? ballpark time??

Thanks again