Crohn's Grrrrr

[usmcfox]

I was told I have Crohn's in November of 2009, I spent 3 months in the hospital until I walked out in Janurary of 2010. I couldn't take anymore of the testing, sticking things in every hole of my body, no food, and rapid weight loss...basicaly I didn't know what I really had til I did alot of research on it. I just got out of my second outbreak 1 month ago that landed me in the hospital for another 3 months but this time it was not so bad because of a better understanding of my Chron's and what I was in for. My doctors insist that it was passed down to me through my family but I tell them time after time that I am the only one in my family who has Crohn's, I tell them I think I got it while I was in Iraq or Afghanistan. I got Chrohn's when I was 28 so I have a couple of questions 1.) My son who was born when I 20 (way before I had Crohn's) should be safe right? 2.) My son who is due to be born early this November might not be safe from Crohn's? 3.) The VA pays my 3 month hospital visits and I've seen some of the bills and lets just say their high enough to buy a mansion, but how (if my one of my sons gets crohn's) am I going to afford to pay their hospital stays??? How do the people who have crohn's pay their hospital bills, I mean in 2 years ive spent 6 months in the hospital, if it wasn't for the VA paying for it I don't know what I would have done!!

 

[scottmyster]

HI Usmcfox, Welcome to the forum, I am sorry you went through so much six months in hospital's is a long time! Actually there is a big chance neither will have crohn's i have had it for 21 years now and neither of my son's has it. so, actually it may not be passed down. and i am afraid to tell you, you didn't get it from Iraq or Afghanistan it doesn't work that way, it has to do with you auto-immune system breaking down. and there are other factors involved. I am sorry you don't have any medical insurance besides VA. It might be a good idea to look into it maybe not for you at the moment but, for your family's sake just in case. Are you on any medications now?
This forum is very supportive and very well knowledged so keep on firing questions. The forum will respond. best wishes.

 

[tiloah]

What's going on with your treatment that you're spending so much time in the hospital? Are you on maintenance medications? Have you had any surgeries?

There is some evidence that there is a genetic component to Crohn's. I know if a person has Crohn's their siblings will have double the chance of having Crohn's (in other words, instead of 1/100,000 chance, they have 1/50,000 chance), which is still pretty rare. I'm not sure the rate of passing it from parent to child. It's very low, but not non-existent. There is no reason your first child would be more or less likely to have it than your second.

Welcome to the forum. I hope we can provide some answers for you.

 

[Jandeacs]

Hi .. This Genectic theory fascinates me ... None of my Grandparents had .. Crohn's or colitis , but I have it , my brother was diagnosed 50 years ago .. none of his or my children or grandchildren have it .. so its quite sporadic .. I cant answer your Qustion re costs Im in The Uk .. and we pay into an insurance , everone does , its run by the gorvern ment ..., its been going for some 80 yrs now . i understand America is going to adopt the same system ,, but we are running out of money now . so its a long wait for appoinmtments .

 

[usmcfox]

Reply

Yes I am on medication, I don't have them all in front of me so I don't have all the names but I take steroids, one for extending the time between my outbreaks and several others that I can post at a later time when I'm at home and see the bottles. Hearing that my kids might not get Crohn's is a great feeling and I hope neither one of them have to go through what we all go through. I spent so much time in the hospital because the first time I went they didn't know what I had and didn't know where to begin (that's the valley for you) lol. The second time was because one side of my intestines paraliyzed and shut down and it was a long process getting them going again (and alot of pain). I have not had any surgeries yet by the way and I have been told that should always be my last option. I see what you mean when you say I could not have gotten it in Iraq or Afghanistan, I guess I was looking to put the blame somewhere else other then my own body, I bet we all say "why does this have to happen to me ?"

 

[tiloah]

Jandeacs - the most likely explanation is that there is a genetic component that leads to susceptibility to the disease. It's possible many people in the family have the genetic mutation, but only some are exposed to the right combination of "triggers" that leads to eventually developing the disease.

usmcfox - It is estimated that Crohn's is ten times more prevalent in the U.S. than in Afghanistan. It is unlikely that you "got it" over there. Keep in mind that in most cases, this disease has been building up for a long time before any actual symptoms show up. It's possible you already had the building blocks in place when you went overseas and maybe the stress was the final straw.

 

[Jandeacs]

That Pain of Blockage is just the mostinhumane thing I could care to experiance ., the surgeon said that my bowel was like leather , the bit he cut out anyway .. I understand that feeling of Im alive again ! diesand.. Ive had emergency surgery twice this year. both times I was resusitated..............now im just waiting for reversal ........

 

[j.bug]

Yes I am on medication, I don't have them all in front of me so I don't have all the names but I take steroids, one for extending the time between my outbreaks and several others that I can post at a later time when I'm at home and see the bottles. Hearing that my kids might not get Crohn's is a great feeling and I hope neither one of them have to go through what we all go through. I spent so much time in the hospital because the first time I went they didn't know what I had and didn't know where to begin (that's the valley for you) lol. The second time was because one side of my intestines paraliyzed and shut down and it was a long process getting them going again (and alot of pain). I have not had any surgeries yet by the way and I have been told that should always be my last option. I see what you mean when you say I could not have gotten it in Iraq or Afghanistan, I guess I was looking to put the blame somewhere else other then my own body, I bet we all say "why does this have to happen to me ?"

They are finding more and more genetic factors to IBDs. That of course, does not mean that your children will suffer!!!!! ive heard Crohns called "a rich mans disease.' I know that ONE of my meds runs about $1200 a MONTH!!!! i also have a very agressive disease, and a very rare form of CD (only less than 1% of CD patients have esophagial CD, I am one of them) I have been put on Remicade also, and each of those treatments costs upwards of $10,000. It wouldnt be a bad idea to make sure that your children have proper insurance now. And not just due to the possiblility of them having CD, but for any illness/ailments they maay have.

As you know, CD can be debilitating. You have found the best forum that you could have. We are all very honest and open, and as you know, having found last one wins, we all make sure to laugh about it from time to time. This forum site is huge, and there is boundless amounts of info on it. If you dont feel like taking the time to look it up, ALWAYS feel free to ask.

I think for a while, we all ask 'why me'...but eventually, that too should pass. Soon you should be able to think, who will I b able to help today. CD is still rather new as far as numbers go (about 500,000 in the US) hoever, that doesnt factor in the amount of people sufferening with no diagnosis.

Just stay strong. Our generation is fortunate enough to have treatments that help, and eventually help you gain remission. A big mistake (in my eyes anyway) is when I see people talk about remission and going off all of their meds.

Also, every person's disease is dirrent. What may 'trigger' some poeple, may not do a thing for you. I would keep a food journal if you dont already.

I cannot tell you enough, how many amazing people there are on this forum. NEVER EVER be afraid to ask anything!!! And if for some reason you dont feel comfortable asking an entire forum, than most definately send me a private message. I will always do what I can to help!!!

WELCOME to our wonderful online home!!!! You will quickly find, that you will meet amazing people. I know that I have met some that I will never let go of. we call and text eachother, and want so much to figure out the means to meeting eachother face to face. This is not an easy disease to fight alone. And I am sure that you have support in your friends and family, but this is a different support. We have been there, and we have a decent idead of what is next to come.

As you have found out, LOW is a great thread. We are all friends and love eachother. We laugh, we cry, we even get angry. But at the end of the day, I KNOW, we will always be here for one another!!!!

So WELCOME!!!!! You have found us!!!! SMILE, and never be afraid to just jump on it!!!!! :hug:
~Bug

 

[usmcfox]

Thanks for the great info and warm welcomes!! It feels great to be around people who know the pain. I look forward to many great story's and spending time with you all. Thanks!!