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I was diagnosed with Chrons in Oct 2008;I was told it was a rare form since its in my stomach.  I dont have any of the normal symptoms and Im finding it hard to find people that can relate.  I dont understand the concept of "flare ups" b/c I dont believe Ive ever had one.

When I was told that I had Chrons I pretended to stay strong for my parents and friends sake. Im still in the denial or anger stage. Ii would love to push all of this away and run!  Where are those rose colored glasses?  All the information I keep reading and everyones stories are just daunting.

Ive been on 3 medications so far and Ive had bad reactions to all of them.  Im currently doing research on Humira and Cimzia.  Is there anything out there that the side effects wont kill you?  I feel like my doctors personal guinea pig.  Do they really know what theyre doing?  My doctor wants me to see a shrink.  So I need to pay out more money for another doctor to tell me that Im in denial. 

I was always called the "glue" that held everyone together.  The fun-loving person that anyone could go to in a time of need.  I was the problem solver.  The glue is falling apart.  I cry myshlf to sleep at night and I cry at work; this is not me.  I feel like Im drowning in my own personal h*ll.  I just want a drug that will work to cure the ulcer and I can then move on with me life. Pretend this little mishap/bump in the road never happened.  Some will probably think Im crazy for my next statement but sometimes I feel like I pissed someone off in a past life and now im paying for it.

 Reply posted for lotsoffun2375.

Wow, you are an "adrenaline junkie".  Good for you!!    I can't believe you are doing a three day bike tour.   Is that for CCFA?   Just wondering, I was considering doing the 1/2 marathon this yr.  

Do your very best at those things you can control and try to keep the stress level down with those things you can't. (your gut will thank you for it)   I had gone to an business conference once and one of the speakers said something that just stuck.......he said when stuff happens that just really pis--es you off..."Build a bridge and get over it"!    At first, I didn't get it, but by the end of the day, it had become my motto....that and "NEXT".  I find that helpful too, just oh well, didn't work out too well .....move on and say "next".  The diagnosis of my daughter changed my outlook forever.   My priorities are so different than they used to be.   At the end of the day what really matters is her.   Not the jobs, money (or lack thereof), or really not much of anything else......family.

I hope you are finding some healing power for your gut and can get the much needed relief...it will come, just stay the course.

Be well.

Lizzies Mom

 Reply posted for youdontlooksick.

Do you ever get tired of being asked "how are you feeling"?  There's more to a person than just their disease.  My wish is stop being so angry.  Today I informed my mother that I sort of accept that I got screwed in this life that you deal with the cards that were dealt.  She's still pushing the whole shrink thing. 

People keep telling me to "think positive"; I'm trying

I hope your weekend looks brighter and you get out of the hospital soon.

Casey

 Reply posted for lotsoffun2375.

I could introduce myself as the Queen of Denial.  I was diagnosed with crohn's disease 22 years ago and my disease has almost always been active. I don't really enjoy many "remissions" I tend to live in the "exacerbation" phase.  I have undergone multiple surgeries and some horrific complications due to those surgeries and I have tales of hospitalizations that could curl your hair...yet here I am 40 years old and I am just now joining the crohn's and colitis foundation.  When at the age of 18 you are told that you have a lifelong, chronic condition, that has no rhyme or reason, and can "flare" at anytime,  it's no wonder denial took hold.  It is inconceivable to look back now and have imagined what my life would look like because of this disease.  But looking back I am.  I find it fascinating to read stories from young people just starting out on their journey on this forum.  I am writing this from my hospital bed.  This is day 8 of an active flare of crohn's and the treatment and care has been very thorough, careful, slow and purposeful.  I have only ever had "one year in a row" when I was NOT admitted to the hospital and treated for crohn's related illness; 2009 was that year.  As December 2009 began I knew that streak was almost over, I was very symptomatic and getting worse.  I made it until January 7, 2010 and unsurprisingly, found myself in the ER at 3am once again.  Thankfully, I feel a shift and this admission and "flare" has me looking forward now.  There is so much support and information out here to be had and for all these years I didn't want to "belong" or talk about 'my disease this and my symptom that'.  But while here my daughter gave me her laptop so I could have something to do.   This is where I found myself and I am proud to have joined.  How many of you spent years trying to 'avoid' it even though you really did have to deal with it?' 

 Reply posted for Lizzies Mom.

Lizzies Mom

Good Morning.

I’ll be sure to pass along the message to him.  I tell him everyday of how proud I am of him.

I do exercise.  Each season has a specialty sport that I do.  Winter being my favorite; I snowshoe, dog sled, snowmobile (you would be surprised how much work it is to control those machines) and cross-country ski.  To de-stress I zip line; yes I’m an adrenaline junkie.  I’m an avid camper love the outdoors!  Last summer I hiked two 4000 ft mountains and for this summer we’re training for a 3 day bicycle tour.  So with all this said and done I’m no stranger to exercise, lol.  I have tried yoga but it’s just too slow for me I end of falling asleep.  I’m contemplating hypnosis.

Yes stress and ulcers is a vicious cycle and I have a high stress job but I love it.  Just try not to sweat the small stuff.  I’m trying to have that mentality with the Chron’s but it’s hard when it’s your health.

No one in my family has Chron’s but they do have the other variables of the IBS family.  Of course, you only find this stuff out after the fact.  I can’t complain really b/c my bad days were only for 3 months before I was officially diagnosed and the ulcer pain only happens when I’m having an issue with the medication or I’m under a lot of stress.  Azathioprine put me in the hospital; I don’t want to ever go through that again.  Luckily, I can tell my b/f anything we like to keep everything open and honest no surprises.  So he knows my concerns about me physically having children.  He’s the one that suggested adoption.

Thank you so much for your honest input.  Good luck with your tests I hope everything works out for you.

Casey

 Reply posted for lotsoffun2375.

Hi again,

First, I want to thank your b/f for doing what he does.....the single most important job.....protect our country!    I am thankful to our service men and women each and every day.   I just want them all to be home safe.

You are right with the stress factor and ulcers.   It is simply like adding fuel to the fire.  Unfortunately, sometimes it takes a few tries to get the meds/combo of meds right before results are achieved.   Do you exercise?  Yoga is a great discipline to study....great for flexibility, strength and good for stress relief.  I do that, pilates, and run alternating so it doesn't get boring.  For me, exercise helps manage the stress of the day-to-day.

Now as for children????   I need to tell you, I am part of this forum because one of my daughters was diagnosed with CD when she was 4.  She is now 10.  Having children is a very personal/private matter, but one that really needs to be carefully considered.  Passing it on to a child is a role of the dice.   We didn't know of a family history when she was diagnosed, but now are beginning to put pieces of a much sprawled out puzzle together.....guess what, I may have it!   Not sure yet, got scoped just yesterday.  There are ups and downs with this chronic condition and sure we have our bad days, but the good ones out weigh them by far.   I wouldn't trade her in for the world!!  Just be honest with your mate when he returns and take it one step at a time.   You may just be making that mountain out of an aunt hill.   If there is one thing you don't need, is the added stress of it......

Lizzies Mom

 Reply posted for lotsoffun2375.

Have you ever heard of helminth therapy?  Check out

Autoimmunetherapies.com 

My 15 y/o son was diagnosed with Crohn's in August.  We are going to try that vs. the Remicade, 6mp, etc.  The only problem is that it is not FDA approved (no money in hookworms for the drug companies to study it).  But, to me it is the more natural way of teaching the immune system to re-focus.  You can find a lot of information on it online.  We are most likely going to go to England for it.  If you have any other questions let me know, but definitely check it out.  I hope you start to feel better soon.  I know how hard it is to deal with this diagnosis.

Take care,

Jon's mom

 Reply posted for Lizzies Mom.

Lizzies Mom:

Thanks for the words of encouragement.  I'm not trying to be difficult in my next sentence but food doesn't bother me at all.  My issue is that I have a giant ulcer in my stomach.  I don't have any of the "normal" Chron's symptoms.  The only symptom I have is the ulcer pain.  What bothers the ulcer...stress!  So I'm obviously running a vicious circle at the moment trying to find a drug that's going to work and not get freaked out by all of the horrible side effects; which in turn causes me stress.

I recently read about Chron's patients and pregnancy that the child has a 10% chance greater to getting Chron's if the mother has it.  I wouldn't want to pass this on to anyone! My b/f and I have discussed marriage for when he gets home from Iraq and he wants kids.  How do I break this to him?  I have no issues with adoption.  I'm probably making a mountain out of a mole hill but I have to think of the future.

 Reply posted for lotsoffun2375.

There are lots of people on this forum that understand your feelings perfectly well because we are living with the disease (either as patients and / or caregivers).   My daughter was dx @4 after many hospitalizations and mis-diagnoses.

You sound very much like me, which encouraged me to respond....I can really relate.  I too am the "glue" for the family, the life of the party, fun loving, the go-to person.   It was hard to get my daughter's diagnosis six yrs ago.   I thought someone wake me up from this horrific nightmare. ......my world was spiraling out of control.  

Good news, eventually, it does get better.  We have attended a number of support group meetings, which I think were helpful to both my daughter and me.  There were other children there so she saw she wasn't the only one with a "special belly" and I was able to meet with other parents at the same time.  Check with your local CCFA office and /or your doctors office to see if there are any support groups you could sit in on.  There generally is no cost and it could only help.  This on-line community is also a good source of support.....lots of info/ideas flow right here every day.  

Once you get the right combo of meds and a good sense of foods / triggers, etc., you will start to feel better physically, then the emotional, social, and a lot of other aspects will begin to fall into place.   Like my brother once told me, I always seem to come out on top.    When given lemons, what is one to do.......make lemonade!   Really, we have to do the very best with the cards we are dealt.  Hang in there, it will get better.

Lizzies Mom

 Reply posted for runnergirl10.

One person understanding my feelings is better than none.  At least I'm not alone anymore. 

My b/f wants me to tell him how I'm feeling to help me unload what's going through my head but he as enough to worry about being overseas in Iraq. 

I've lost faith in modern medicine.  I'm seeking out alternative methods like Chinese medicine.

 Reply posted for lotsoffun2375.

i cant say that i know what it's like to have your specific affliction or that i understand your symptoms but i can defintely understand your feelings....you put to words what i've been feeling/thinking for the last several months...thanks for letting me know there is someone else out there who gets it...