Nature Vs Nurture.. IBD & Heredity

[Kev]

Hey folks.. I'm not new here, (you can find my original intro thread here someplace) but I've recently come into some new info on IBD that I felt I needed to share. It is very personal, I haven't even told my family about it (nor my GI yet, still on leave).

Anyway, since you can't really share yourself on this site w/o getting a little personal at times, and since I view this illness as a common cause (we're all in this together) I thought it only appropo to share it here.. One of the problems I've encountered with getting accurately diagnosed stems from my origins. You see, I was adopted, never knew my birth mother, so I was never able to give the doctors any info on my 'family' medical history. During the course of my illness, I've had time on my hands. Time to reflect, and to cross off some of those things on my life's 'to do' list, just in case... So, long story short, I investigated my birth mother, with a great deal of help from local adoption disclosure agency. She's alive, and though we haven't met/made contact, I was able to get some of my family medical history. I've got four half siblings, which if you count my birth mother AND myself, total six. Of these six, four of us have Crohns and a fifth is possible... Now, having been separated at birth, the old nature/nurture aspect of how one gets crohns seems to favour nature in my case.. Sure, I probably came into contact with the MAP virus someplace, but obviously that alone isn't the major key.. Think about it.. If it was just the fault of the virus, a lot more people would be suffering from IBD... Think it's fairly obvious that some genetic flaw in my family tree make us prime targets for the MAP virus. Just my opinion.. It reinforces my fears that one or both of my children are prone to it as well, and that all of the milk products I forced upon them when they were young may be ticking timebombs waiting to go off... And with this nasty illness being so radically different betwen individuals, and it being so problematic to accurately diagnose, I wonder how many other family members there are out there who should be watching what they eat, and seeing their doctors WHENEVER some of the common warning signs of IBD start to show..

Just an FYI - update to all

 

[Jeff D.]

Hey Kev, I think you are right in an aspect. I think that you have to be predisposed to Crohn's to get it whether it be genetics or somethig else. But what I think takes place is this. Your DNA has a flaw in it, they found a scar or something in our DNA, and what I think this causes us is it allows for the MAP virus to easily get into our system which then gives us our system. The thing I am wondering though if the reason why everyone seems to have different symptoms and different levels may be caused from the length or where on our DNA the "scar" is formed.

Thanks for sharing yet another perspective of your life, it is great that more and more people are able to open up.

 

[Dekar]

There is a theory that Crohns itself is actually a bunch of diseases at once. My belief is that it was a combination of the MAP virus which few people aren't able to fend off for a number of reasons mixed with finally some outside influence that gave it a shock and started the disease.

For some people they're immune system simply can't fight it, which is hereditary, while others CAN fight it, but they are so emotionally depressed / weakened at a certain period it slips through.

 

[kix66]

Wow! So many half siblings with this DD! I only have an aunt that I know of with crohns, but there has always been talk of this or that relative that had "stomach" problems.

I just want there to be a cure!!!!!

 

[mikeyarmo]

Kevin,

I am truly touched that you told this to us first. It must have been a mixed bag of emotions going through the process of getting all of this information, and I do not think this is something anyone would have thought would have been the result. Make sure you don't tell your doctors about this... I am sure they will want to get you and your half-brothers and sisters together to do some experiments and testing on you all!

This really is a highly unique case that may do more to prove a heredity link to IBD (or at least Crohn's Disease) than anything else has done yet (or ever will do). Did you ever think you would be so personally involved in the development of Crohn's Disease research?

This is something that I hope you are seriously considering sharing with your doctor and the medical community. I think this is something important for the medical community to be aware of, as it definately is not a common occurance (that I am aware of).

I think it is important though to take a moment to realize you are not to blame for any actions you took to affect your disease, or whatever happens with your children. We both know that you did not maliciously intend for your children to be affected by this disease. You had no knowledge or evidence to make you even think you could be doing anything wrong. Any doctor would not have accused you of doing anything wrong, and would have even commended your efforts. Today is exactly the same. There is no scientific evidence that all doctors agree to. There is also no evidence that your children will be affected by this disease at all. So have some faith, and try not to over worry yourself over this.

I hope that your research provided you with better understanding of your past and has slolved some previous mysteries. Good luck taking the next step (whatever that may be).

 

[Cara Fusinato]

Wow Kev! That is truly amazing that you are such a large related group. Wow. I agree wholeheartedly that some of us are predisposed to this illness and the MAP and the other life stresses seem to set it off. I have used that ticking timebomb reference so many times myself. Hang in there. We are all here to support you. Not only is finding a birth family a brave thing, but battling this illness certainly is. We will all be thinking of you this weekend as you make choices and assimilate information.

 

[ruthymg]

Firstly, congratulations on finding your birth mother and half siblings, hope you all get to meet someday. I come from a large family and its great to have the love and support of so many siblings. The mere fact that you haven't discussed this with anyone yet shows how personal this is to your heart which is very touching. Its important to know where you came from and you are one of the few lucky ones that has had a good result. Both my mum and elder brother are adopted, my mum traced her birth mother with disappointing results, but my brother doesn't want to know his birth mother. I think its important to add that even though my brother is adopted and his bloodline is different to mine, he is still my big brother and I feel no differently to him as I do to my younger biological brother. The link of nature and crohns in your situation is extremely important and further research would make interesting viewing. I am so pleased you have made this discovery, it may help you to understand your disease in ways that some of us will never experience.


Ruth

 

[skeet]

Mahalo Kev, for sharing such a personal part of your life with us. I agree that the information you've learned could be very important in helping the medical community understand the disease and it's origins. But it is your story, and is entirely up to you whether you are ready to share it or not. From what you've said here and in other threads I think you will eventually, but it needs to be in your own time, on your own terms.

Congrats on finding your birth family. I'm imagining that there must be a great deal of personal satisfaction in knowing that there are others out there who share your heritage, regardless of how satifying your experience as an adoptee has been. I can also see how t might cause some inner conflict (ie: Do they want to meet me? Do I want them in my life?) Some advice that you didn't ask for: trust your gut (pun intended.)

 

[kellybirdk]

How bittersweet to find your birth mother/family and also find out some share the disease. Both my brother and myself have UC and I was the lucky one to continue on with CD. Whoopie! We always think back to childhood, "was it the well water" "the diet we grew up with" who knows. I have one sister who has escaped both UC and CD to this point. "sibling with colon" is how she is introduced to the doc's. ha ha. Both my brother and I were in a Boston hospital having our colons out at the exact same time. we weren't allowed to share a room but we were right next door to one another. bad memories. but its been nice to be able to share the experience with someone i love so much. good luck, keep us posted.

 

[Kev]

Hi again folks... First, I want to thank one and all for the kind words & warm wishes. Whether I ever meet my birth mother or half siblings is really not up to me, I've done all I can in that regard. At least I've made the attempt. Getting some of my 'family' medical history just put a few missing pieces of my own medical puzzle into place.. I don't live in the past, so the thought of whether it was something that I drank or ate really isn't material.. I was born in a time and place before milk was homogenized, & with an uncle in the dairy business, our family consumed gallons of that white stuff. Yet none of my adopted family ever developed any IBD illnesses. Even though our environment was identical.. My biological family, ..well, you all know the score there.. My point is... During the upcoming holidays, when my own sons visit, I plan to sit down with them, break the news about my family health history, discuss what it means to them from both a personal & physiological perspective, and what they should look out for and guard against... My youngest has some troubling health issues that, in restrospect of my recent diagnosis and now 'family' history, need to be re-examined more closely by his doctors.. In any event, avoiding milk products possibly contaminated with MAP (or whatever) is a bit too late for me, possibly too late for my youngest.. BUT my oldest, and any kids either of my sons eventually have, should be raised/fed in a manner that takes into account a possible 'genetic' link.. I mean, if I knew someone was allergic to a bee sting, I wouldn't take them to an apiary or orchard during blossom season..

Or maybe it isn't too late to watch what dairy products I consume, or any of us... I wasn't always lactose intolerant (or whatever it is/was - if I consumed too much dairy, I paid the price - BIG D) For the bulk of the last 20 years, I could tolerate skim milk, no problem.. But 2% or 3.5%, watch out! Then, I went to the DR 3 yrs ago.. Whatever their milk was (cows/goats) I don't know... but instead of it being refrigerated (for us coffee/tea drinkers) it was kept hot.. essentially in a hot urn by the coffee & tea urns.. I was able to take as much of it in my coffee and tea as I wanted.. no problems at all.. In retrospect, I wonder if this method may kill off any 'bugs' that we Crohnies are susceptable to? And if yes, then maybe that glass of ordinary milk is possibly 're-infecting' us? Wonder if there's any info out there that offers a method of 'heat treating' milk to keep it from spoiling Vs just relying on the standard HTST method? Wouldn't it just be a kick in the pants if an ounce or two of milk containing fresh MAP bugs periodically came our ways and caused flares!!!