New to crohn's.

[monroe]

Hi, my name is Katie, I am 19 and have been just diagnosed with Crohn's Disease this past friday. I went to the emergency room because I was sick of feeling the way I was, but now I may be more confused than ever.

When I left the hospital, the GI gave me a prescription for Entocort EC 3 mg. I'm supposed to take 3 a day, usually before meals. I still feel abdominal pain when I eat, and especially when I try to sleep. Also my diarrhea has not gone away. Is this normal? How long does the medicine take to kick in? Will all my symptoms go away? If they come back does it mean I need different medication?

Also, when they let me go, they told me to follow up with both my pcp and the gastrintologist(sp?), and to make appointments with both for the next week. Will I need to see both, or just te specialist? Will I need to make regular appointments with both doctos?

And last, I don't understand what I should be eating. My stomach usually hurts, so i don't know the difference between food I should and should not be eating? Any recommendations on how to tell the difference between what kills my stomach and what doesn't? Is a "flare up" when your abdominal pains hit, or when its time for the bathroom? Asyou can see I'm pretty confused, and my boyfriends mother tried convincing me that its only fatty and greasy food that causes the pain, but obviously that isn't the case. Any help will be appreciated =].

katie.

 

[MINI Cooper]

Hi Katie!!!!

You have all the same questions I had when I got diagnosed.
I haven't been diagnosed for that long, myself.
I wish there were straight forward answers to all those questions,
but there aren't.

• medicines work differently for everyone (mine isnt working and I'm going
to have them intravenously put in today) MAny people have taken multiple
meds throughout their time with crohns. what works for some, doesn't for
others. Symptoms are the same way. Drugs in general are just so unpredictable.

•Food is also different for everyone. Something that hurts one person or causes
a flare is a good food for someone else. Check out the 'food and diet' thread for
a lot of great ideas!

•As far as which doctors to see, I would see anyone and everyone if I were you.
The more suggestions and check ups you can get, the better. Many doctors
overlook things that other doctors may find. Which has happened to me on
countless occasions.

Welcome to the forum, glad you're here! There's a lot of great info on this
site and many people who will be willing to help you out with your
questions!

 

[monroe]

Hi to you too!!

I figured there weren't really gonna be straight answers to my questions, but it was worth a shot to ask

I'm glad im here too, where I can talk to people dealing with the same thing I'm going through. I plan to make plenty of friendss

 

[soupdragon69]

Hiya Katie,

Welcome!!

Keep right on asking questions - even if its the same ones over and over and over again til you get your head round it ok? Its alot to take on board and a huge shock to you but at the same time at least you know now why you have felt so terrible.

Some folk find they feel better replacing dairy products with soy or rice milk and cheese etc. Others are ok with it.

Some find cutting out anything with Gluten helps - that includes Wheat, Rye, some oats and Barley.

Most of us cant tolerate much fried stuff. So in some sense your boyfriends mum is right but you will find that it is very much about learning to listen to your body and "tuning into" it.

Crohns is about looking at things from an overview and tying it all together in a parcel of care that suits YOU as the individual. It can be frustrating travelling the path but you will get there!

Look at diet, pain meds, how long you should wait for meds to work, how often you are running to the loo (make a note of it and whether its pure diahorrea or part formed etc) as it gives you a chance to see if there is any difference in changes that have been made.

Am sure others will post too once they see you around.

Looking forward to seeing you more. Hang in there honey. We are only a post away!

Thinking of you. ((hugs))

 

[katiesue1506]

Hi Katie!

My names Katie too, I'm 20 and was diagnosed at 18. I just wanted to welcome you to the forum.

I was placed on Prednisone (its like Entocort only a bit stronger) and Imuran (an immunosuppressant) at the same time when I was first diagnosed and they didn't do anything for me. It's possible that your Entocort might not be enough for you. But then again its possible that it could kick in soon. Part of having this disease is listening to what your body is telling you and knowing when to go to the doctor for consultations.

The easiest way to start to rule out foods is to eat a bland diet. Start with those foods and if they don't bother you, introduce more of your favorites. It really is trial and error... and some days a food that sat well with you on Friday will kill your stomach next week.

One big thing that will help you is to drink lots of water (cut out the fizzy sodas and anything sugary... including things sweetened with Splenda or other such sugar substitutes.) For some reason the sugar substitutes hurt my stomach moreso than normal sugar. But anyways... its important to stay hydrated since dehydration can be a common battle of someone with crohn's disease.

A flare in my mind is a period (can be days, months, even years) of time in which your disease is active. I've had an 8 month flare when I was first diagnosed and I'm currently recovering from a 6 month flare.

Also something to warn you about if you haven't already found out... Crohn's symptoms get WAY worse during your period. I'm not sure if its a hormonal issue, but just wanted to warn you.

I think that's all I have to say right now. I want to apologize that this post is a bit unorganized, I have to be at class in a couple minutes so I type it up fast! Anyways, welcome to the forum... and don't hesitate to ask questions. This place is full of great resources and research. The best way to control your disease is to research it and know what you are dealing with!

Katie

 

[monroe]

Hi Katie!

Yeah, I guess right now i'm still in my "flaring period" but i hope the medicine kicks in soon. Oh trust me, I know exactly how it feels to be on on your "little friend" while flaring, the whole time I was in the hospital I had mine :ymad:

Right now I've been eating toast, but i think I should cut out bread completely because some nights my stomach just kills me. But I'll be buying some books and looking into diets and recipes to see what doesn't work, plus I'd love to be a bit healthier. I heard fish cooked with hardly and oil is good on the stomach, which is great because I'm a seafood person!

Thanks for the support

 

[jed]

welcome Monroe!

if you ever get bored or want to chat to people in real time, there is a group of us that often chat (sometimes serious, othertimes idiotic (not my fault...)) in here

http://gabbly.com/http://www.crohnsforum.com/

 

[monroe]

Thanks I'll def be in there one of these days

 

[RHOV]

hi katie. welcome to the forum!

 

[monroe]

hi pen, yes i finally found you all! i can't believe there was a website like this and all you seem super supportive of one another. Ill take your advice about the foods ..ehh bland not my choice but hey ive got to learn. can't wait to get to know all of you.

 

[pb4]

In order to find out which foods really bother your gut it's best to keep a food journal...it sucks but it's about one of the best ways to know for sure (or at best anyways) what causes you the most grief since every IBDers differs with food issues...some don't even feel an effect of food while others do.

Getting tested for lactose tolerance is a good idea as well if you haven't already because lactose intolerance symptoms can be easily masked by CD symptoms, D, gas, bloating, ect.

 

[GregD]

Hi Katie. Welcome to the forum. I started having CD symptoms when I was your age as well. The Entocort is supposed to reduce inflammation and help get you into remission. However, it not typically considered a long-term solution to manage this disease. Your GI, will probably put you on one or a variety of maintenance drugs, which are designed to keep you in remission. There are literally dozens of drugs and combinations, so I would search around the forum's archives to find info on what's out there.

In terms of eating, many of us adhere to a "low-residue diet." It is basically eating things that are soft, easy to digest, low-fiber, and won't get caught in the grooves and possible strictures in your intestine. My GI gave me a good rule to figure out what you can and can't eat: If you were to put a food on a sunny window sill and after a week it would still be edible, that is a food to avoid (e.g. raw fruit, vegetables, nuts, ect.). If it would be some sort of decomposing mess, then it is probably easy to digest and okay to eat. That being said, everybody tolerates foods differently. I never really had a problem with greasy food, but it makes some people feel horrible. It is going to take some time for you to figure out what you should be eating.

My only other advise to you, until you see your GI, is to start taking a probiotic. I take one called Primal Defense, by Garden of Life. I think probiotics have helped me a lot, but there is some debate over their efficacy.

Good luck and keep us updated.

-Greg

 

[MINI Cooper]

My only other advise to you, until you see your GI, is to start taking a probiotic. I take one called Primal Defense, by Garden of Life. I think probiotics have helped me a lot, but there is some debate over their efficacy.
-Greg

+1 to that.