Help! Sitting here sobbing my eyes out. How do I cope??

[Song of Stars]

I've just been diagnose with Chron's Disease. I have a little girl and I love her more than life itself. As I write this, I'm sitting here sobbing in fear.

I don't know much about the disease but everytime I google it all I see is stories about surgeries, pain, suffering, death etc.

How do you cope? How do you do it?



I have severe anxiety to begin with and I just don't know what to do. I spend all my days crying and panicing. I don't want to die, I'm so scared!!

How do you stay positive? Will I be suffering my whole life?? Will I die young??


Help me! Please, I'm so scared and uninformed. PLEASE tell me everything is going to be okay!!

 

[tiloah]

Well step one is treatment. With a good treatment plan your disease should be kept in remission for a long time. Also, are you on anything for your anxiety/panic attacks? If you are perhaps a review is in order, it sounds like your anxiety is not being well managed.

Sometimes there are days spent crying. But the reality is people with Crohn's can have normal lives. It is extremely unlikely you will die young (even less likely you will die young from Crohn's). It's not a death sentence. It's a chronic disease and it requires treatment but it's not the end of your life.

Surgery may happen at some point in your future. I am currently five months out from surgery and it's the best thing I could have done. I am so much happier and healthier now.

Welcome to the forum. I hope we can offer you some peace of mind. Maybe check out the "success stories" forum to help ease your mind.

 

[Song of Stars]

You are such a kind hearted person. Thank you so much for your reply. I've been sitting here refreshing the page in hope someone would offer some kind words. Crying, feeling sick... so scared

I will see my doctor tomorrow about a medication/treatment review for my anxiety. it is severe, it's landed me in emergency many times. Wouldn't wish it on anyone.

I am SO relieved to hear it's unlikely to die young! That's amazing news! Whenever I google Chrons I get sites saying you will die or get cancer. I always wanted to live to my 70's... but it makes it feel impossible.

Does anyone know of anyone with Chrons that is that old? Can it happen?

Thanks again so much, you're an angel...

 

[handle]

When I was in hospital years ago I met a lady in her 70's who had Crohns. She was knitting away while the doctors buzzed around her. When they left she said to me "I don't why they always have to fuss like that. I feel fine really." She went home the next day. She also said it got milder as she got older...

 

[Lisa]

Song - I too have a little girl (6) - however I have had Crohns/Colitis for over THIRTY YEARS.....have been through ups and downs - no surgeries - all different nedications over the years...

The important thing is to get your disease under control - when it is, there isn't much you can't do.....I have a FULL plate being a wife/mother, full time career (which can be pretty stressful), a home, horses.....travel.....

I agree too that you should have your anxiety addressed too - that can have SUCH a negative impact on everthig else......and you need to be there for yourself and you little girl.

Welcome to the forum.....

 

[xX_LittleMissValentine_Xx]

There are so many treatments and help available. Yes, there is no cure and it is daunting to think you will have this for the rest of your life.
But we don't know what the furture will hold. We don't know when we first get the diagnosis how life will be for us, which is scary, but it can also give us hope!
It can be horrible to live with but you will go though good times too, its not all bad!
I find that having this disease gives me a different outlook on life than other people, it makes me appriciate the good things more.
And my best advice: Take it one day at a time. Thinking about it as the rest of your life is too big with too much uncertainty, but you can make choices and decisions day to day.
Good luck with everything! And welcome to the forum

 

[Crohn's 35]

I've just been diagnose with Chron's Disease. I have a little girl and I love her more than life itself. As I write this, I'm sitting here sobbing in fear.

I don't know much about the disease but everytime I google it all I see is stories about surgeries, pain, suffering, death etc.

How do you cope? How do you do it?



I have severe anxiety to begin with and I just don't know what to do. I spend all my days crying and panicing. I don't want to die, I'm so scared!!

How do you stay positive? Will I be suffering my whole life?? Will I die young??


Help me! Please, I'm so scared and uninformed. PLEASE tell me everything is going to be okay!!

:welcome: Song of stars! You have been given great advice so far. The incidence of death is like .08 or something close which is extremely rare. Being misinformed of Crohns is why we need awareness. Cancer is very low also.

As anxiety is clearly a way to get your crohns up to a bad flare, that is something only you can control! Getting a mild antidepressant can help.

I had a 4 year old and now almost 24 and she is healthy and is a well rounded young adult, she was worried as a child too but they will see that you are ok.

Get the treatment you need, a counsellor is recommended in the early stages of this disease. :hang: we all can lead productive lives, we are here to help. Ask away. :thumright:

 

[Gwen pippy]

We are all here for you honey.
I have crohns for 25yrs and two girls under 4, like Pen and the girls said anxiety is one of our biggest enemies and getting that under control can be a major bonus. Don't spend too much time on the net on sites that may give you the wrong info, Just shout out your questions here, we are all going through the same things and are only to happy to help and listen. Have a good look around the site and you will see sections on every topic you could imagine like diet, meds and how we cope in the support section, there is even a section on success stories and many here have achieved remission for years, and look out for the funny stories they are a naughty bunch and have turned my tears to laughter on more than one occasion. I'd be lost without them.
Gwen xxx

 

[mario]

The problem with these sites is that people like me don't use them often enough!!
I have crohns and I am fine. I lead a perfectly normal life controlled by meds. I eat, drink and be as merry as the next person! Stress is a big trigger in crohns so you should have your anxiety issues addressed.
Take care
Hugs
Marie x

 

[ginny44]

hi

when i first found out earlier this yr i too was just like you,i cried more times than i can remember and i have 5 children,the smallest being 3.Yes its hard but one day at a time and you will be fine,this site is wonderful and gives you fabulous encouragement.I have days where i cant cope but many more that i can,keep your chin up and you will be just great,stay strong.

 

[Paul G]

Well I just typed in a huge reply to you that was lost as I was apparently not logged in when I hit submit!

Basics of what I said - stay positive, don't stress to much, talk to your Doctor and talk regularly if you need to.

Ask about the medication Endep. It's a mild anti-depressant, not habit forming, but it helps to get to sleep at night but obviously has mild anti-depressant benefits as well.

I'm Paul, 38, have had Crohn's for over 22 years and now have two boys who will be 5 and 3 early in 2012.

My Dad also has Crohn's; diagnosed at an early age too and he's now 64.

 

[DustyKat]

Hi Song of Stars,

I don't have Crohn's but both of my children do and I have certainly run the gauntlet of emotions!

With monitoring, care and treatment you will okay hun...:hug:...it doesn't mean there won't be ups and downs in your journey but the thing is you will get there.

Both of my children have had many of the things you speak of...pain, suffering and surgery, one of my children even came close to death BUT she was undiagnosed at the time and I don't ever expect that circumstance to happen again now that she is diagnosed. And you know what, now that they have received treatment they are both in remission and living life to the full!
I encourage you read, read and read some more. Knowledge can be scary but more importantly it gives you power, the power to know your body, the power to know your disease and the power to be the best possible advocate for yourself that you can possibly be.

I have found the emotional side of things to be the most difficult to comes to terms at times but you will get there. Be kind to yourself and allow yourself to at least grieve a little, it is normal and natural and keep doing what you are...Come to a place like this, where there are like minded people that understand exactly what you are going through, share your fears and worries and we will do our best to help lighten the load.

I think your little girl will have her Mummy for a very, very, very long time.

Dusty. :heart:

 

[Mountaingem]

Welcome Song of Stars! So glad you found us, I hope we can put your mind at ease. I am 39 years old and have had Crohn's for 25 years-since I was 14 years old. Crohn's started off attacking my colon and has since expanded to my joints. However, it took about 15 years for that to happen. I have never had a surgery that was Crohn's related, and even though I've had many complications I believe I manage pretty well.

Yes this disease can get ugly, but not everyone is worst case scenario; Crohn's is incredibly complicated and even if you experience certain things doesn't mean you'll end up with ALL of the things that can happen.

I remember when I first started learning about Crohn's; I literally gave myself a panic attack from info overload. Try not to take in too much at once; what helped me was to pace the amount of info I took in and I gave myself time to digest and absorb it. And here on the forum you can actually talk to people who have gone through it; the stats on the Internet never factor in how adaptable and resilient we can be, even under the most difficult circumstances.

Just take it one day at a time; you're a Mom and a tough cookie, you can do this! And we're all here to help and support you.

 

[Jennifer]

Of course you'll live a long life as long as you stay with your treatment plan. Staying on medication even when you're symptom free and in remission is the best way to go because it keeps your disease in check. Yes people have died but its not often due to modern medicine. I believe most causes of death now would be human error (waiting to be seen/delaying your own treatment), having to wait for insurance approval of tests or medications (or waiting for the specialist to order them in the first place) or not being able to afford treatment but all of these issues happen with every disease/illness out there.

I also have panic disorder (got that well after my diagnosis of Crohn's though) but that seems to be more annoying than the Crohn's diagnosis. I was diagnosed 20 years ago when I was 9 so I've pretty much grown up with the disease. I take Klonopin for the panic attacks. Had a bowel resection 12 years ago and have been in remission ever since. Everyone can get into remission in their own way so don't look at Crohn's as a death sentence.

Get treated and come and post your success story with the rest of us here: http://www.crohnsforum.com/forumdisplay.php?f=72

 

[jaggartini]

Welcome Song of Stars.

Sorry to hear you are feeling so down, you have come to the right place where you can vent, cry, swear or say what's on your mind without being judged..... and that helps .

I suffer from Ulcerative Colitis, have done for 8 years, was diagnosed just after I had my 1st baby. I cried and freaked at the thought of long term medication but here I am, 4 children later and living a life as well as the person next door. Sure I've had my weeks but it is an illness that can be managed. It's not a death sentence, as someone else said, death is more like refusing treatment or misdiagnosis etc.

Stress is a big trigger for me, if I'm stressed or feel anxious about work then it does me no favours so try to relax your body as much as you can. (Easier said than done but one day at a time)

I also like to class Ulcertaive Colitis as an "illness", "not a 'disease" as such. Just a thing I have between myself and I. When people start saying I have a disease I flip a little, saying it's an illness, I know it's something that can be managed.

Do you feel you have a great doctor to lean on because that can make the world of difference.

gx

 

[kllyeve]

@jaggartini - I like the "illness" approach as well.

Just like if I was diagnosed with diabetes, Crohn's means some lifestyle/diet changes, some medications and a long term approach to staying well.

I am still struggling to get into remission but I see so many people acheive it here on the forums so I know it is possible.

Song of Stars - take it slowly, one day at a time and most important as a mom remember to look after yourself as your health and well being will be important to your family.

 

[Sarahjh]

Awwww don't get upset. Crohns isn't a death sentence at all. Yes it can be tough sometimes and the pain isn't nice, but with the treatment it can be put in remission and controlled. Dont always read the Internet because some sites might exaggerate the truth. Best thing to do, is take each day as it comes, be strong for you and your little girl. If you need advice just come on here, don't bother with sites off Internet. I found they scared me and got me thinking about the negative side of the disease. Disease is such a horrible word, but it doesn't death, I call it an 'ongoing, disease.


Chin up xx

 

[Snap]

You got guts, girl!

Hi star--I am brand new to this site, just signed up today. Where is your Crohn's--large, small, or both? Regardless, you will do just fine. Follow your treatment plan to the letter. You will learn what foods work, what foods don't. You will also learn to realize when you are starting to flare, because the first sign may not always be the dreaded diarrhea. You may have a swollen joint, extreme gas, fatigue, erythema nodosum nodules on your skin (esp. the shins). Anyway, learn to enjoy the little things that we take for granted like a beautiful sunset, your child's laugh, a nice lady at the grocery store that compliments your hair, etc. When your heart is happy, it spreads allllll over. I truly believe that. And, when you get sick with a flare, just tell yourself that you WILL get thru it---what helps me a lot is that I have 2 wonderful sons that are my absolute everything. Finding a purpose is paramount to staying focused and somewhat healthy. I was diagnosed with Crohn's Disease in July 2000. It's been a roller coaster, and I will be undergoing my first surgery in a bit over 2 weeks. Remember, the disease affects all of us in different ways--ya just gotta find what works best for you. Stay strong and stubborn! Best Wishes, Snap:wink:

 

[jack_t_barrowman]

Hello Song of Stars,

I've also recently been diagnosed with Crohn's and am slowly getitng my head around it, but wanted to say that despite it, I have been able to get back into doing things I love - live action role playing, public speaking, singing with a choir and simply getting on the train and going to work. It's been a learning curve, finding out what works for me and what I need to avoid, and also establishing what medication I need to be on... and I will admit to having my ups and downs along the way. The medication I'm on is helping a great deal, as is managing my diet (it's led to me improving my rather basic cooking skills, which is a bonus!)

I totally agree with the comments here about taking one day at a time and finding out what works for you - it's something I keep having to remind myself about! I have found this forum to be a brilliant source of information, support.

Take care, hang in there and I wish you the very best!

 

[zilla7777]

Hey and welcome to the forum! It's so sad to hear you're all in a mess, but just rember that you are not alone, and there are people who can help you cope. That's why I came here! People can and do lead normal lives with Crohn's, and achieve remision for years. I had around 1 and a half years where I wasn't even taking any meds. Just try to think of it as the occasional rock on an otherwise smooth road. Most of the time people with Crohn's are treated with medications but only in very bad cases, will people need surgery. You need to stop worrying. Although it may be difficult it's probably the worst thing you could be doing. Jaggartini said, stress can play a part in your flare ups, it sure does with mine. Take care, and I hope you can find some useful information here. See you around!

 

[loosewheels]

Hi There, Crohns although not pleasent will not kill you, you can lead a full life, but it will have problems, you could feel ill at times, but there will be more good days than bad, I have been ill since 1997, yet changed career, (now teaching) have travelled, even to Oz ( and I have seen the wooden men on Geelong beach !!) but needed a Dr's letter to take on the plane to get me to the front of the toilet Q. you will live to see your little one graduate, so don't worry, life is good, you're alive, you came out of the front door of the hospital, many with other illnesss leave by the back door. Good luck.

 

[kat-y]

Hi I was diagnosed last year and was on steroids and then in surgery very rapidly. In these early stages everything is a blur and it is hard to focus on day to day life as you are coming to terms with the uncertainty. I think this is worse as a parent because you assume you will always be fit to do everything with and for your children - I have two. Try to give yourself a break, take a deep breath and get through each day. Time makes it easier and you will get your focus back but it's not overnight. Deal with one day at a time and try not to scare yourself on the internet with worst case scenarios. It's taken me over a year to accept I have this and feel I can use a forum. It helps a lot with the confusion and isolation ... good for you getting here now. thats a great positive step