New to Crohn's 20 Year Old Female.

[dconnell1]

Hello everyone,

So I guess I am just writing to you all to try and better understand what my disease is all about.
The doctors are saying all sorts of confusing things but none of them really making sense?
I am currently on predisone at 30mg and the side effects are strange to say the least! I am confused, have mood swings and I have no idea what is going on with my weight?! I am small then I am big and well I don't know whether the scales are just broken or whether I am being paranoid!
My main concern though is that I want to know how I can do the best for myself? What do I eat? What do I avoid? How do I manage this condition and avoid surgery?

Thanks,

Danielle x

 

[niki27]

Hi Danielle!
I am 20 as well and have been dealing with crohn's for the past 10 years.
I had a lot of downs and some ups but as of now I am all off all medication and doing only a diet. I have been doing this for 3 years now and never felt better. Are you thinking about alternatives? I know my best friend is rice! it's supper easy to digest and it's completely safe for almost all crohnies. I would stick to only white rice, brown rice has a shel covering it and it can scratch the intestine if you are unhealthy. I still don't work well with brown rice.

Safe foods:
White rice
Quinoa
Milet
Buckwheat
potatoes
cooked carrots
sweet potatoes
Chicken
Turkey
cooked beats
cooked snow peas
cooked squash (It's not good for me but most people think it's safe)
any squash

Stay away from:
Spicy food
Fried food
uncooked vegetables
high with acid (like tomatoes)
corn
dairy
seeds
nuts


these are the really basics you should stick to but there is a lot more to know if you want more information please don't hesitate to ask I would always love to help or just be there for support I know how difficult it gets. I was on prednisone several times when I was flaring and it is not fun, I get it trust me.

I hope you feel better and best of luck with everything!
Best, Niki

 

[Crohnus]

Hey, i am a 22 yea old guy. got sick like 5 years ago. i too had massive weight change but mine was just low. i dropped to 112 pounds. that was a rough first year but i wasnt on any strong meds. for the whole first year i pretty much just ate white rice steamed green beans and chicken breasts. it gets tired but its worth it to push really hard to eat right for the first bit until you can get sorted on meds that work for you and start to take back control of your body.

As said above stay away from spices, nuts, seeds, fried foods, greasy foods, anything that seems like it would be hard to digest. the one thing my specialist said is a MUST NOT EAT is corn/popcorn. she said with crohns, because the intestines get inflamed and can get scarred(scarring comes with having bad crohns for a while), the corn, which to be fair doesnt digest in healthy people anyway, will build up and cause a blockage which could result in needing surgery to remove the blockage. its like putting a handful of rocks in a funnel... or like a blood clot. she said shes had to do more emergency surgeries on people leaving movie theaters than most anything else. pretty crappy because popcorn rocks...

Ive been on remicade and imurane for like 4 years now and it work pretty good for me. i was stuck at 130 pounds for a few years but once i got everything under control and could start working out and doing physical activity and being able to absorb nutrients and what-not, i am now at 165 pounds and feeling pretty good. im not in remission though. sometimes im bad and have fast food or something naughty like that and pay for it for the next few hours.

im kind of rambling here eh...sorry
drink lots of water. take vitamins. chew well. eat good food. stay happy.
unfortunately its alot of trial and error. this forum is pretty cool. i wish id have found it 5 years ago haha. i just joined today...

oh hey, also baby wipes can be your best friend for the first while until you get it all figured.

Good luck everyone.

 

[dconnell1]

Thank you both so much for getting back to me its really great to know there is people my age dealing with this too! How are you both coping with the medications? I think they are moving me onto Imuran, is that a steroid too??

 

[AJC - Australia]

hi D,
Sorry to hear you have Crohns.
I am 39, got it when i was 18.
Best advice is to try and enjoy your food - try not to blame the food…or yourself. Everyone with Crohns is different. You might thrive on bananas and someone else with crohns might not be able to tolerate them. You might thrive on something now, but in 5 years time it may give you issues. Physically, if you know where the crohns is and if you can determine if the bowel is narrowed at the site of the crohns, when it is narrowed it makes getting food through the narrow hole very difficult (and painful). If it is narrowed, then you probably should avoid fibre and be on a low fibre diet….but if it is not narrowed, if it is simply inflamed and ulcerated, then pretty much any food can and probably will give you grief. The food part of crohns is one of the biggest parts of the journey, if you can call it a journey. I hope you, somehow, manage to continue to enjoy your food.

Prednisone is like and short term WHAM. Instant fix for just about everything….thing of a rugby player who hurts their knee and the 'trainer' gives them an injection at half time when they can hardly walk….ten minutes later they are back on the field running, but deep down their leg was probably really injured and by continuing to play on that leg, they injured it further……prednisone and crohns is a bit like that, in my opinion. OK and sometimes great in short stints, but you need to find others things, drugs, lifestyle changes, yoga, meditation - but probably a drug (of which there are now dozens to try and all work differently on different people) so keep trying, while treading carefully.

I think trying to get happy within yourself is a big part of it.
Just try to get mellow and be at peace with the world and things around you.

Good luck and enjoy the love you hopefully have from friends and family,,,it is a tough disease to cope with, for everyone concerned.

It could be worse!!!

 

[AJC - Australia]

Imuran is an immune suppresant, they use it for lots of diseases…Imuran, 6MP and Methotrexate are all immune suppresant drugs that have had a fair success with Crohns.

lately they are having a lot of success with biologic drugs like Remicade and Humira.

 

[24601]

Hi! Welcome to the forum!

Sorry to hear you're dealing with Crohn's. It's certainly very confusing to deal with, especially early on. I was diagnosed at 17 back in 1996 and there's so much I wish I'd known then.

I second the view that it's important to know the location of your disease and any finding from scopes and imaging, like narrowings.

The thing that most increases your chances of a positive longterm outcome is mucosal healing. While your doctors have chosen steroids for your first line therapy, you may in the future (or if the steroids don't work for you) want to discuss Exclusive Enteral Nutrition for flares. It's basically drinking a liquid diet instead of eating normal food for usually 6-8 weeks. It's not easy but promotes mucosal healing more effectively than steroids.

Imuran can be very beneficial for Crohn's patients but studies have shown that surgery rates seem to stay the same for patients unless you use top down therapy which likely helps with mucosal healing. Top down therapy at the moment means starting with the big guns of biologics rather than working your way up to them. So if your doctor agreed with this approach and thought it appropriate for you they might start you on Imuran and infliximab, for example. Infliximab has been shown to be better for mucosal healing than Imuran. Of course many doctors want to know that you are in the moderate to severe category before proceeding with that course, and it's simply not something that can be accurately predicted, so that's not always the approach a doctor wants to take and can be difficult within the constraints of funding protocols too. Sorry if that's too much info at this time - I just think it's something I wish I'd known!

As to diet, it's easy to get very anxious about what you should or shouldn't be eating but the reality is there is no one size fits all Crohn's diet. If you're interested in diet then there have been some studies recently on diets used in combination with meds to induce and maintain remission. One such diet is the IBD-AID diet - here are some links
http://www.umassmed.edu/nutrition/ib...aid-reference/
http://www.umassmed.edu/nutrition/ibd/ibd-aid/
diet chart with phases

If you're interested you could discuss it with your doctor and see what they think.

Good luck! I hope you're off the steroids and feeling better soon!

p.s. there's a whole sub-forum for prednisone here and you'll find lots of people riding that rollercoaster here on the forum. Hopefully it helps to know you're not alone in what you're going through.