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Dearie

Joined
Apr 13, 2012
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Curious~ Does anyone know what is the likelihood that since I have one child with Crohn's disease, one of my other children will have it also? Besides my 9yo son who has Crohn's, I have two younger children and every time I notice any health concerns I fear it may be another case of Crohn's :( I don't want to be so paranoid but I don't want to miss any early signs either..
 
I think it's actually higher... I thought siblings had a 30% higher chance of developing Crohns :( (Hopefully, I'm wrong!)
 
Hey Dearie,

When my second child developed Crohn's the GI said that when one sibling has Crohn's there is a 30% chance of another sibling also developing it. Literature/studies are a little conflicting but the majority I looked at at the time supported that figure or something very close to it.

Dusty. xxx
 
YIKES! I distinctly remember the doc saying 5% chance and thinking that was a pretty low number. I have also been using that figure to keep myself calm about the other goings on around here with the siblings. Wonder why such a large discrepancy? I will add that to the list of questions to ask him about tomorrow only to forget once he hits me with "his plan".
 
Well, all I can add is that out of 3, I am the only one diagnosed with Crohn's. I will, however, tell you that the oldest of us had an ulcerated colon at age 21, apparently from stress and treated, healed, and never had to treat again (he's in his 50's now), and the next oldest from childhood on had what doctors called a "spastic colon"...but has never been to a G.I. and is almost 50 years old.
 
I don't want to be devils advocate but I have never seen a figure that low quoted. Some lump the chances of parent, child, family altogether and suggest there is a 20% chance of developing Crohn's but over time the most quoted figure I have seen in reputable studies is a 30% chance with a sibling and a 10% chance of a child developing Crohn's if one parent has it.

I think it goes without saying that with no known cause even these figures are highly variable and I personally believe that some families must have far stronger genetic marker than others. There is only one other family member that has Crohn's in our extended family, a first cousin of my husband. She has two brothers and they are unaffected yet I have two children and they are both affected and not only that but the Crohn's of my two exactly mirrors each other. When Sarah was the only one with Crohn's I believed that genetics/trigger/environment likely played equal parts in the equation but when Matt also developed it and even the Crohn's specialist stated his surprise at their disease being exactly the same in nature and outcome, well in our case I would be hard pushed not to believe that genetics is by far the major factor. I don't think it would be unreasonable to suggest that perhaps in our case it is closer to 50%. I have absolutely nothing to support why I think that I just do. :lol:

I have asked the same question here and there are many members that have one or more siblings affected by IBD BUT just as many, nay likely far more, that have no siblings affected.

Dusty. xxx
 
30% chance?? Wow, that's kind of high! As if one child with Crohn's isn't enough to worry over! Well, I'm praying that my concerns with my other children amount to nothing more!

And, God bless all the parents with the task of worrying over this illness and extra :ghug: to Dusty and all the parents who have to deal with double the concern!
 
Nine per cent of patients with Crohn's disease have a first-degree relative with either Crohn's disease or ulcerative colitis. The risk of siblings developing the disease is almost 30 times that in the total population of Cardiff, which has a high prevalence compared with the rest of Wales.
Click to expand...

From:
http://www.bmj.com/highwire/filestream/227841/field_highwire_article_pdf/0

It has long been recognised that Crohn's disease has environmental (eg, smoking) and genetic components. A sibling of a patient with Crohn's disease has a 30-fold increased risk of developing the disease compared with the general population. However, this level of risk is less than that among siblings of patients with single-gene disorders.
Click to expand...

from:
http://www.lancet.com/journals/lancet/article/PIIS0140-6736(00)05091-1/fulltext


Siblings of patients with Crohn's disease are 17-35 times more likely to develop the disease than members of the general population.
Click to expand...

from:
http://ukpmc.ac.uk/abstract/MED/3805664/reload=0;jsessionid=CjrkOe8XXUZBpK5y1wTI.0

Assuming a population prevalence of 170/100 000 for IBD, the relative risks for IBD in siblings, parents and offspring of patients with Crohn's disease calculated from these data are, respectively, 24.7, 12.5 and 4.41.
Click to expand...

From:
http://journals.lww.com/eurojgh/Abs...lence_of_inflammatory_bowel_disease_in.7.aspx



So 30 looks about right.:ywow:
 
Well there you have it! Now I can go back to wondering about my other two...and now I will disclose that I went to doc for simple fever/virus..blood test came back anemic..second blood test anemic and low B12...stool test for occult blood positive for blood. They are sending me to a GI.
 
Hey crohnsinct so sorry to hear that! Same boat here though, I've had symptoms longer than my son GI is fairly convinced I have CD but I'm not so sure. Pill cam next oh yay! Hope they get to the bottom of your problems quickly and get it resolved! I'll be sending good thoughts your way!
 
Hi Crohnsinct, can understand your worry.

My daughter second daughter is very short but no other signs.

You may like to try and have a feacal caprotection testing done. My gp has order it for me, due to long standing dx of ibs and now daughter with crohn. (He had not heard of it). After reading the information on it, we have decide that if it positive will go down the path of looking for crohn's or if not will start the FODMAP diet because then more like ibs.

My test order has clinical notes daughter with crohns disease.

Did they tell your the cause of the anemia? Has treatment plan for anemia?
 
crohnsinct said:
Well there you have it! Now I can go back to wondering about my other two...and now I will disclose that I went to doc for simple fever/virus..blood test came back anemic..second blood test anemic and low B12...stool test for occult blood positive for blood. They are sending me to a GI.
Click to expand...

I haven't had any blood tests done but my daughter had a couple canker sores in her cheek and has complained of stomach and throat pain at times that come and go on their own. I don't know what to make of her complaints. But, I don't want to make more of it than it really is...
Anyway, hope all goes well with your GI appointment :ysmile:
 
Good to see the figures in print. I asked my sons ped. to pull an IBD panel when she lead tested this year after a few months of diarrhea...negative, thankfully, but I have my eye on him!!
 
Clash: I actually do not have any signs of anything! I feel fine. Just tired and have been getting sick with everything that comes my way...flu..strep..fever viruses etc. I of course explained all away with stress and not taking care of myself. Sunny dreamland! I guess I am lucky that I have a paranoid GP who went looking for something.

Catherine: cause of anemia for me? The GP is all over the board on possible reasons...range from Celiac to colon cancer. Given O's dx she is pretty convinced it has something to do with absorption but I having no other signs makes me think simple anemia. She says occult blood doesn't usually point them to Crohns but better to have a look see to see what is going on in there. Joy of joys...maybe O and I can get a buy one get one free:) Funny thing I am not worried at all about me. Too hyper focused on O.

I think I might take your lead and ask for that stool test at the ped or like izzi's mom a IBD panel for my little one. I love, love, love my ped and it is a simple test so I could see her totally going for it. Thanks for mentioning it.
 
Crohn's runs on both sides of my family but neither of my parents have it, they are just carriers. They had four children and me and my second oldest sister both have Crohn's.

Early signs for both of us were flu like symptoms that lasted for many months. I should have been checked out earlier before I started bleeding but eventually I got a diagnosis and the long process I went through made for a quick diagnosis for my sister.
 
As I understand it, crohns is familial rather than hereditary. I had a bit of difficulty getting my head round this but it means that it can occur in families but this is not necessarily for genetic reasons alone. It takes into account the fact that families live in the same environment, may eat the same things and come in to contact with the same viruses etc

Kaz xxx
 
Very interesting reading all this.:smile:
I've NEVER thought about this link in siblings before.:ybatty:
Great, one more thing to think about.:yfaint:


Farmwife
 
So had O's appointment this a.m. and asked the GI again about risk for a sibling and he said 5-7%. I tried to tell him the committee says about 30%:lol2: but he stands by the 5-7%.

The good part is he wanted to know why I asked. I told him about my little one. He says still not enough to worry him but he wants to enroll O's sisters in a sibling study and with that comes blood and poop tests so looks like I will get some sort of testing without having to bother ped and look like the totally paranoid crazy Crohn's mom that I am!
 
Hi crohnsinct, every time I see your name I wonder how far you are from my family who lived near candlewood lake (squantz pond) in new Fairfield ?

Kaz xx
 
Interesting...out of 6 kids (2 are half-siblings) I am the only one with bowel issues/Crohns-colitis.....
 
Kaz: Not far at all. About 30 minutes. Would be faster if there were a highway connecting the two but it is mostly local roads...the charm of New England. Candlewood lake is great!
 
Yes it's gorgeous. Their property backed on to the lake. Spent many holidays there and still have friends in that area xx
 
KazT17 said:
As I understand it, crohns is familial rather than hereditary. I had a bit of difficulty getting my head round this but it means that it can occur in families but this is not necessarily for genetic reasons alone. It takes into account the fact that families live in the same environment, may eat the same things and come in to contact with the same viruses etc

Kaz xxx
Click to expand...

I thought about the familial aspect of things before too. But, if that's the case then shouldn't we be able to prevent Crohn's or induce remission simply through just environmental changes and diet???
 
Dearie, not sure it works like that with regard to achieving remission.

I think we ( as crohnies ) were predisposed to develop crohns and when the right conditions occurred the disease was activated.

Once that occurred, as we are all aware, no one has a definitive cure. It may be possible to protect our other family members from developing crohns if we know the triggers.Eg smoking could be a trigger. We don't know this for sure though, although we know smoking has a detrimental affect once crohns is diagnosed.

Interesting though. Let's hope someone somewhere comes up with the answers very soon.

Kaz xxx
 
For over 20 years now, since my G.I. sat me down and told me that I have Crohn's and explained what it is, I think about him telling me that some people really believe it may have started with a virus that lies dormant in our bodies for awhile, then activates or reactivates during a stressful period in our lives, leading to Crohn's. He told me most doctor's joking referred to it as "finals syndrome", as many get it in young adulthood during college.
 
Brings back memories of just a couple of months ago when my younger son was complaining of tummy aches every morning before school along with with the big d.. of course my mind went straight to Crohn's since he was at the same age as his brother when diagnosed although he did not have the weight loss that his brother had, called the pediatrician for a referral to his brother's GI so insurance would pay and they ran a bunch of tests for crohns, celiac, etc. Blood work all came back great no inflammation no markers of crohns or celiac in bloodwork. Big sigh of relief! Turns out he is lactose intolerant just like me and does not have Crohn's like his father and brother. As you can imagine making a meal that everyone can eat in our house is always fun!:lol:
 
I also always worry about crohns in my other kids. We have a lot of sensitive stomachs. My oldest received a workup for crohns after my second was diagnosed. It was negative and decided the he had IBS. Then my youngest started with the severe constipation issues. I have not had her checked out. We are keeping an eye on her at this point to see if anything else comes up and if it does then we will have her checked. I have a friend who is a GI fellow and is doing research on the genetics of crohns. I only talked with him briefly about it. Next time I see him I plan to ask him more details.
 
So hear you all on the siblings issue, my oldest daugter katie age 7 started having some pains in her tummy about 6 weeks ago, I was so worried, marched her off to the GP and demanded he do all the IBD blood work and stool sample. I think he thought I was slightly mad to be honest, but I was glad we did because everything came back clear so I was able to relax. But I do find I check their poos (hard with the 7 year old as she does tend to give me the slip most times she goes at this stage:ybiggrin:) far more than is necessary and I worry about the slightest little thing. Luke age 2 had a bit of a tummy bug last week and I spend the entire week fretting over crohns. But then I pull myself together, remember how sick Lucy was prior to diagnosis and then I breathe and let myself know that the others are ok.
 
Ok ... some math here ... I think may help explain your doctor's numbers.
There is a huge difference between a risk being "30 times higher" and "30% chance "

I do not know what the risk of Crohn's in the general population is (and imagine it varies from country to country) .... but lets say it is 1 in 500, that is .2% chance for general population ... times 30 ... that is 6%.
 
dannysmom: ah thanks! I was thinking something like that but couldn't figure out how to say it. Thanks...and I am sure my doc thanks you also cuz you saved his rep:)
 
My paternal grandmother has had UC for over 40 years. None of my cousins on my fathers side have the disease, but both my brother and sister have been diagnosed with IBS. As little kids we all had "sensitive" tummies, and are entering our early twenties now, with even more sensitivity. Neither of them have had severe problems or have had any work ups, though I know if my sisters problems persist she will follow up with my GI.
 
I am sooo worried that my youngest has crohns. She has had problems with chronic constipation. Some blood in her stools and is now having diarrhea, it just started today but it is really bad and she is complaining of stomach pain every time she eats. I plan to call the doctor tomorrow. I am hoping it is just a bug no one else is sick though.
 
I so hope she has a bad bug!
Keep us updated.
I pray she gets better sooner than later.

Farmwife:ghug:
 
Oh my Kim...:hug:...I hope it turns out be a bug! Good luck and let us know how you get on. :goodluck:

Dusty. xxx
 
Sophia was better yesterday no diarrhea or any BM at all. But she is still complaining her tushey hurts on and off. I called my friend who is a pads GI fellow and spoke to him about it (you guys will get a laugh out of this). I told him I am worried she could have crohns like her sister. He says oh I wouldn't worry about that at this point, kids that young (she is 3)don't get crohns disease. It onsets at a later age! I wanted to tell him to check out this forum and all the young kids on it who have crohns but I held my tongue. I didn't want him to think I was questioning his doctorly wisdom. Meanwhile Sophia is still complaining of tummy aches. I think as soon as we get moved. ( we are moving next week to Florida) I will speak with her new doctor about a referral to a GI there!
 
Your Quote- Kids that young (she is 3) don't get Crohn's disease.:ybatty:

Oh, thank God! Grace is off the hook. I can sleep tonight in my bubble.:yfaint:

Farmwife
I'm glad she's feeling better.
 
Ooh I am afraid I spoke to soo, the diarrhea is back. I am wondering if maybe I can get an urgent referral to take her to get seen right away. I will speak with her doctor I guess tomorrow. This is so complicated with moving in the middle of everything going on!
 
Farmwife: LMAO:rof:

Kim: omgosh you seriously are not kidding. I can't believe you are moving in the middle of all this. Did your doc find a new doc that is pro LDN? Where in Florida are you moving? It is a bit exciting though...no? I would LOVE to move to another part of the country...I said part of the country not to the country Farmwife...my favorite is Chicago! I hope your little Sophia settles down and everything is just a small virus.
 
I hope so too, Kim, that Sophia is just fighting a bug... (just getting caught up on this thread).

It is a constant worry of mine as well ! We're actually finally going to get the final results from Emily's tests at the rheumi (remember that little finger that caused all sorts of commotion! :lol:). The rheumi did say she was 99% sure there were no concerns BUT she did want to follow up with more tests - since then (March??), there have been a couple of cancellations due to Emily's schedules. Finally seeing her first week of July!

Good luck Kim! :ghug:
 
Kim, could it be that she's feeling nerved up about the move? My family moved when I was 18 and I remember have "issues" with it. Stress can do that. TRUST ME.


Farmwife
 
Farmwife,
I think she is to little to really understand the moving although I guess you never know. Today she seemed to feel a lot better this morning. She ate well for the first time in days. I am keeping my fingers crossed it was just a bug. No we do not have a GI doc lined up yet in Florida although we do have a primary care doctor. I plan to schedule an appt with him right away.
 

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