Very new and extremely confused

[loosiee_k]

Hey guys. I'm Louise, I'm 19 and I've just been diagnosed with Crohn's Disease in the past few months. Before I was told I had it I'd never heard of it in my life so everything is all very new to me really. Since they diagnosed me, all the drugs they've given me have pretty much put most if not all my symptoms in to remission, which is great, obviously! But to be honest I haven't made any dietary or lifestyle changes along with it, every other person I ask all have different opinions and I'm told not to read too much into internet advice. My consultant doesn't give me the time of day and sends his med students to answer my questions instead, though none of them can seem to agree on the same answer :/
I know everyone's different and I hope not to be on loadsa different medication for the rest of my life. Should I be on a special diet? Should I stop smoking?(strictly from a Crohn's point of view) Should I stay off alcohol?(I'm an Irish teenager, this was always gonna be a tough one lol)
So many questions!!
I'm on Asacolon and Imuran everyday and have an infliximab infusion every couple of weeks.
If anyone else is on any of these, have you noticed any hair loss/thinning??

I'M SO LOST!

 

[Cross-stitch gal]

Hi and welcome to the forum!:welcome:

Glad to hear that for the most part you've been in remission! Dietary and lifestyle changes would be a benefit to all of us. Not quite sure about a special diet. However, I'm sure that you will find the best things to eat for you. We do have a section on here called: Diet, Fitness & Supplements that may help some.

There are a few on here who've talked about quitting smoking. Some have even succeeded! Here's some info about alcohol. There are many on asacol & infliximab. If you'd like, you'll see some info in our treatment section. I hope you'll feel free to look around and please let me know if you have any more questions! Again. Welcome! :hug:

http://www.youandibd.com/en/living-with-ibd/drink-alcohol-expert-video.html

 

[a1000lies]

Welcome! Glad you are in remission! I smoked for a while when before I was diagnosed and I can't say wether or not it made things much worse at the time or not personally, but they say it helps many people.

I also love drinking and while it definitely doesn't make things any better when I do, I still tend to get away without it causing any major issues that evening or the next day as long as I follow a few precautions. Try and stay away from drinking much of the very yeasty, complicated, wheat, and specialty beers if you are a beer drinker. I find if I drink crappy light beer when I'm out I can manage not to get sick from it that often. Just try not to get smashed or drink ALL the time because that WILL start causing you issues.

That being said everyone is different. I know people who can't even have a sip of the stuff without being sick for a few days from it. As far as food is concerned I find that staying away from anything too complicated/spicy/caked in refined sugar is almost a definite for any crohny. I tried gluten free for about 6 months and found it not to help all that much and was expensive and not so tasty. As of late I've been sticking to simple things like eggs, chicken, rice, rye bread, and bananas and it's been pretty good to me.

If you go back into chronically flaring up its always a good idea to try new things or elimination diets because pretty much everyone has their trouble foods that can cause serious misery. For me that's anything high in sugar, doughy, white breads/pastas, anything with tomatoes (ugh I love Italian food), and broccoli. I find broccoli to be especially evil and give me bloating and gas like you wouldn't believe.

Anyway, goodluck to you and I hope the meds don't cause you too many side effects and you stay in remission as long as possible! Don't hesitate to come here any time you have questions everyone here is so helpful. I've gotten so much info on here its really great.

 

[iriechic]

I'm like you, newer to this stuff. So I just want to WELCOME you! I'm glad you're feeling better on meds.

 

[KarlieK]

I am taking Imuran. I was diagnosed when I was 16 and started getting sick when I was 13. GI doctor put me on Imuran when I was first diagnosed at that time I attributed my hair loss to the Imuran, I was taken off the Imuran and put on pentasa after that. When I turned 18 I stopped taking any meds and was controlling it just with diet...unfortunately it didn't work. I had a major flare and my hair started falling out again. I am 24 now and to this day when I have a flare my hair falls out, Doctors told me that my body was just getting rid of the things that it didn't really need to take care of. Some of the best advice I have been given about my hair loss came from a older woman that I met she (also has crohns) told me "hair grows back, intestines don't"
Good luck! This site has made it so much easier to cope!

 

[ASM]

Hello, good to hear you are in remission. I was a smoker when I was diagnosed. The doctors told me it would help if I quit, so I did. It was one of the first life style changes I made and I have to say that it was worth it. As for alcohol, I rarely drake when I was diagnosed, but I do now and very much enjoy it (in moderation) with no ill effects.

 

[AJC - Australia]

hi Loosie - i rekon you are on the right track.
You are diagnosed, well done.
You are asking questions = very good. (most newly diagnosed go into denial and pretend to their friends they dont have crohns)
You are thinking that there are things you can do - there is.
You are wary of internet advice and information - you should be! Most internet places are made up of people complaining and seeking sympathy for their pain.

I would suggest looking at your diet - if you are eating loads of meat, gluten or dairy then consider bringing that back a bit and replacing it with the most nutritious foods you can find.

Smoking - there is research to suggest it is bad for people with crohns - but i think it depends if you are smoking 20 a day or a few a day....and if you are smoking to try and ease stress....or if you are smoking and drinking heavily.

above all, try and smile and be happy - happy mind happy body and 'all that'.
keep an eye on your health, by having blood tests every now and then and monitoring your weights... and be wary of taking any advice to heart, because your body is unique it what it likes and doesnt like.

if you start losing your appetite, you are probably getting ill.
so keep an eye on your weight.

avoid situations and people that upset you emotionally.

good luck!!!