Nervous about Genetics of Crohn's

[dodson1435]

I am the wife of someone with Crohn's and have been for 18 years. He was diagnosed about 30 years ago. Two years ago, our daughter (then 11 years old) began experiencing severe cramps and fever for about three weeks. She had also not grown in about 2 years. We took her to our family doctor 3 times in those three weeks, and he finally got her in to see a GI pediatric specialist. After an examination, colonoscopy, and MRE, she was diagnosed with severe Crohn's. Both my husband and daughter are on Remicade treatments ($$$$). She has been in remission for about 6 months, but he still suffers daily (has had 2 bowel resections in 20 years). Now, our eleven year old son has started having complaints of cramps, along with not having a huge appetite. He seems to be growing fine. I am nervous that he might also have this disease. Has anyone on here had a situation similar to this? I am not sure what the chances are of genetics affecting BOTH children, but this really scares me!

 

[Susan2]

Hi and welcome to the Forum. :bigwave:

I'll tag DustyKat as she has two children with Crohn's and might be able to help you.

 

[afidz]

I don't have kids yet but I just wanted to let you know that I was listening. Check out the parents of kids with IBD, I am sure you can find a lot of support there. Also, there is a teens only section on here, I am sure your daughter would really love to talk to kids that know what she is going through. Keep your chin up for your kids and your husband, you are their biggest support system :ghug:

 

[Clash]

Just wanted to welcome you to the forum. The parents thread does have some really great members, hope you swing by. Sorry to hear of how much you and your family have been through. My son is on Remicade also, as well as methotrexate.

 

[Jennifer]

Hi dodson1435 and welcome to the forum!

My sister and I (out of 4 children) were diagnosed with Crohn's within the same year. I was hospitalized from lots of blood loss while she silently dealt with the illness until my parents were able to start taking her complaints seriously. Her symptoms were less severe than mine. There's actually a fair amount of people on the forum who have siblings with Crohn's. All you can do is have him checked out. Hope he's all clear though.

 

[Pirate]

Welcome to the Forum, Dodson1435. Its difficult enough to be the spouse of a CD patient, but to have a child with this disease and another with symptoms is unimaginable to me. I have 3 sons (all grown now) and when they were young I always worried whenever they had stomach aches.
I worry about you though. The support person of someone with CD is also someone that needs support to help them stay strong and you need more strenght then most because of your family situation. Everyone is here to listen so when ever you need to vent just let it go here.

 

[acheallova]

Hiya n welcome dodson. I do hope in the future they can find out if there is a genetic link. I do worry about it as I've gone 30 years undiagnosed and now it seems my 7 year old is showing the same symptoms as i had. It's a scary thing, but if we keep looking forward and trying to stay positive, hopefully, answers will come! Welcome again to the community. Muah- hugs-

 

[DustyKat]

Hi dodson1435 and :welcome:

I am so very sorry to hear of your husband and daughter, bless them, and you too! :hug:

As Susan has said, I have two children and they both have Crohn's. Neither my husband nor I have it but he has a first cousin with it. There are varying statistics out there as to the likelihood of siblings contracting the disease and the one I see the most quoted, it is also the one the GI quoted to me, is 30%. The cousin with CD has two brothers and neither of them have it. Similar questions to this have been asked on the forum before, I have asked it too, and it seems some families have a very strong genetic presence whereas others have very little. If you put the words...siblings and Crohn's...into the search you will find the threads that discuss this question.

My daughter went undiagnosed for 18 months and eventually was diagnosed on the operating table. My son was diagnosed within two weeks of showing very mild symptoms for a few days. They presented differently to each other and where my daughters bloods showed nothing my son's showed everything. They were so different in presentation but their disease is an exact mirror of each other.

I didn't think my son had Crohn's but I guess something must have been niggling at the back of my mind so I asked the GP to run inflammatory markers on him, they were elevated so repeated a week later. It was at this point the GP palpated his abdomen and was able to feel a mass in his right lower quadrant, the GP said there and then he thought he had Crohn's and it was verified by scope.

I hope your lad is going to be okay Mum. What do you plan to do?

Dusty. xxx

 

[DAVID KINGHAM]

Funny you should ask.I've had 2 bowel resections in the last 20 years and am also on remicade treatment but that doesn't seem to be helping me very much.When i was first diagnosed 21 years ago,i was given a dvd by John Cleese by my gp. On that dvd at the time,he stated that crohn's was not hereditary.Proves how little they knew back then because my youngest sister was diagnosed 5 years ago.After treatment and controlling what she eats,she manages her illness very well.I'm part of a family of 6,3 boys and 3 girls but only 2 of us have it and we are all grown up now so pretty sure my others won't be getting it.Lucky them!Yes it's hereditary but 2 out of 6,means odds are better than worse for your family.I don't know about your family but i've found the new treatments are a lot better than just keep pumping our selves full of steroids all the time which i did for years.That drug is dangerous but effective as it caused my kienbock's disease in my wrist,which i had fused last year because of the bone's disintegrating. To make matters worse,i have drug induced pancreatitis from years of steroids.I don't drink alcohol as never agreed with my illness but i now have a alcoholics disease without all the fun they have..lol.I do hope that it comes back negative but being experienced in crohn's,at least you can all support each other through it and we all know that there are very different levels to this disease and maybe,cross fingers that it can be easily controlled.Lots of love and courage to your family and i hope they manage to have some xmas dinner in free

 

[dodson1435]

Thanks everyone for listening. I found this site through a web search as I was searching key words "genetics and crohn's". I didn't know what a gem I had stumbled upon. My husband is in a support group and my daughter has gone to Camp Oasis for two years now in the summer. Both have started dealing emotionally with their disease. They were named the Fort Worth Take Steps Honored Heroes this year. I, on the other hand, obviously need to seek support as a spouse and parent. I know that God has a plan for this in my life....just hard to see it sometime! I've never been a part of a forum, but from the suggestions I received here, I obviously need to connect with other parents and spouses that deal with this. The advice about getting my son's markers checked is key here. Thanks so much for the advice! I'll definitely be a regular! (as soon as I take the tutorial!)

 

[Crohn's Mom]

Hi dodson, and welcome
We're glad you stumbled upon us !

I see you have found the parents forum, but maybe you want to post your story there as well so all of the other amazing parents can say hi!
It certainly seems you have your hands full, but also that you're handling it very well :hug: You are right tho, you need to take care of yourself as well and deserve some support. You've got a hard job!

Hope you stick around and get to know us better, and share more about your journey.
Best of luck, and I hope your son's lab work comes back all clear !

 

[Jmrogers4]

Welcome Dodson
I have a husband and a son with Crohn's. My son goes to Camp Oasis as well and he was the Take Steps honored hero as well. I completely understand about the other children. My younger so was having lots of stomach cramping, diarrhea. Of course my first thought was Crohn's as he was the same age as Jack when he was diagnosed. Had blood test to check for markers, came back normal (Yay) Turns out he is lactose intolerant but I still watch like an eagle afraid that it may still happen.
I'm glad you stumbled upon this forum the support and information is invaluable.