Need help dealing with family and lack of answers

[lilninja]

need help dealing with family and lack of answers

Hi everyone,

I found out a week ago that i have crohn's, so until i get to see my dr. on the 15th i'm reading as much as i can about it. None of my friends or family have crohn's. Im wondering if the test results are right. My biopsy came back as crohn's. I guess i dont understand how one day i'm fine eatting whatever i want and the next day im in the hospital learning it could be crohn's and my eatting and lifestyle will need to change.


The problem with my family and friends is since i was in the hospital for a week they all want to know what i have. i understand that they are worried and care alot about me. But when i tell them it crohn's they all act like i was told i have 3 months to live. also they need to tell me everything they learn about it online or by calling their dr. I'm for the most part a very quiet person. i dont tell people what im going thru in my life, ive always believed that everyone is fighting some kind of battle. so when they tell me what they learned its starting to make me more worried and scared. i'm trying to stay busy and not think about this. im trying to be strong for all of them, but in the inside i dont know how much longer i can keep my self calm. i want to know what my test results found? is there any chance this was just an infection? What can I eat? Etc...

Sorry for long rant...

 

[saidinstouch]

That sounds a lot like what I experienced when I was being diagnosed. The best thing you can do is talk to your parents and let them know how you are feeling right now and that you need people to back off. Have them talk to your family and let them know they need to respect your space for a few weeks while you come to terms with knowing you have the disease. Accepting the disease is a lot harder to do, but also an important step to work on since you can't get rid of it you might as well just take whatever it throws your way to the best of your ability.

You have all of us here to answer any questions you might have about the disease and to lean on for support. All of us have gone through this same process, so we understand the inner turmoil. Just try to let people in your family know you need space and tell them how much you appreciate their concern and that you will talk to them in time. You can't handle this disease alone so you will need them, but at first it is a bit easier to have some more space.

 

[imisspopcorn]

I totally understand where you are coming from....Feeling a little overwhelmed becomes very overwhelmed once you start to learn more and more about this disease......My symptoms were mild compared to where I am now...I am hoping for you, since it seems to have been diagnosed rather quicky, that you will go into a fast remission with mld drugs....(sorry, i can't remember what you are currently taking)...Take it one day at a time...try to resume the things in life that give you joy....If you need to have a break down, have it. < sometimes crying and releasing all that frustration does a world of good.

It is so normal to be in denial about a disease...Here is a great web-site called IBD 101...there is an article about grieving the loss of good health. I hope it helps.

http://ibdcrohns.about.com/cs/mentalhealth/a/mourninghealth.htm

 

[CrohnsHobo]

I am the only person in my family that has Crohn's or any digestive problems at all. I had never really been sick at all. I competitively lifted weights, played football, wrestled, and then BAM! I lost 40 pounds, got PG, Fistula, couldn't walk, had to be carried into the hospital by my father. All within a six month period.

This was 14 years ago and people I know still cut every newspaper article they see about it and send it to me. My GF's mother sends me every research article she can find. Constantly nagged by my mother about what I should and shouldn't eat. Annoying right?

Yes and no. Yes I don't need to be reminded about all this stuff. In 14 years I have become my own personal expert. That being said they are doing it because they care about my well being. I can't fault them for that, they mean well.

We have all been dealt a crappy card in life (pun intended), but we need to learn to roll with the punches, know there is people out there that care about us, even if they show it in an annoying way.

Being shut off from the world and bottling everything up from the world is only going to exacerbate things.

 

[Pirate]

lilninja, there will most likely be a day when things really hit home and you will probably really let loose. Its normal. Most of us have gone through stages of accepting the fact that we have a chronic disease. First comes a sort of numbness, than a little denial which is followed by anger and depression (not everyone suffers depression) and finally acceptance. During the whole period you will have people that you love try to help and it does get annoying but remember they do it out of love. You will really want to scream at some of them but it doesn't change the fact that you are your best source of education. Research everything you can about CD. Ask every question that comes to your head and if you don't understand the answer ask again.
No one is going to be able to give you all the answers because everyone is differant so learn to read your body. Make a daily diary of the foods you eat and how they affect you. Write down what time of day you feel the worst and when you feel the best.
Do not let it take control of your life. It will if you let it. It will always be a big part of your life and you have to learn how to work around it. Its hard, but you will learn everything over time.
Just remember, your CD will be what you let it be.

Hang in there kiddo. We got your back.

 

[Crohn's 35]

I have had Crohns for years and even my mother just didnt get it, my husband really studied the illness and my daughter lived it since she was four. They all read this book Crohns's disease & Ulcerative Colitis by Fred Sailbil, MD (Key porter books) . Since they read it and has even the biologics mentioned, it tells you in layman's terms so anyone can understand it. Good luck, and with time you will get to know your Crohns and how you and your family will react to it. Give yourself time ok?

 

[shazamataz]

Welcome to the forum - so glad you found us!

It is definately hard to adjust to! And having people in your face about it can't be any fun Especially if they are feeding you information you can find when you are ready, in your own time. I agree with what's been said above, let them know it's nice they care but you need your space to get your head around things.

Also, as far as tests go, if a biposy shows Crohn's then I would expect the diagnosis to be correct. On the plus side a fast diagnosis is a rare thing and you will be able to start getting treated quickly. Are you on any meds at present?