Posted 11/29/2007 2:43 PM (GMT -6)
I thought it was a gene for susceptibility... Not for inheritance..
Male 36yrs old. Indeterminate Colitis 6 yrs.


Pro-bio

Protonix
multi vitamin

Posted 11/29/2007 3:16 PM (GMT -6)
You know... I have UC, and a year into dating my boyfriend he started having a lot of stomach issues, and I'm beginning to think he either has IBD or at least IBS, which he never had issues with before dating me... But that's besides the point. Him and I have talked about kids and I most definitely want to have kids even though I know they will probably have colic (him and I both did) and will probably need glasses (we both do) and might have IBD. I've never had thoughts of not having children cross my mind because it's my main goal in life *shrug*
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...

Posted 11/29/2007 4:34 PM (GMT -6)
Harpo, that's just one link...there are genes of inheritance, it's written up in my CCFC journal (more to follow)....here's another link....
 


My bum is broken....there's a big crack down the middle of it!  LOL  :)

Post Edited (pb4) : 11/29/2007 2:36:01 PM (GMT-7)

Posted 11/29/2007 4:36 PM (GMT -6)
If I were to choose not to have kids, it would not be b/c I have UC. UC is treatable and manageable. Yes, it would suck if my DD got this, but there is a good chance that she won't. My mom has colitis, and I'm the only one out of 6 kids that has UC. [shrug]. You just never know.

And when you adopt, you get all other kind of health issues you don't know about that could prop up. What if the birth mom or dad develop UC after they put their baby up for adoption? Just b/c they didn't have it when they gave birth, doesn't mean they won't get it later.

My DH is clueless about his families medical history. So if you were to adopt from someone like my DH, you might be told all is well, but in reality it isn't....KWIM? I have always taken an interest in my families medical history and know probably more than I care to know, but not everyone does or cares or is open to discussion. My DH's family doesn't talk about it at all. My FIL is dying of cancer and it's like pulling teeth from them to find out the status, etc. Forget about distant relatives. No telling what they have or died of. My family is different.

My dad had high BP, my mom has sleep apnea which caused a stroke and heart attack, my brother has diabetes, my dad died of cancer, my GPa died of cancer, my GMa died of cancer, I have a cousin who had cancer, but survived, I have 2 aunts who died of cancer, and the list goes on. I still chose to have a child and I would never change that for the world.
Best Wishes,
Trixy (39)
dx Pancolitis, mild, w/more activity on left side & IBS
12 Asacol a day;
1 Rowasa at night during flare/1 a week during remission;
Nexium; Probiotic; Multi-Vitamin; Flax Seed Oil
UC manifesting to other organs: joints, eyes (Iritis) & skin (Erythema Nodusom)
Controlling w/MEDS & DIET (eliminating animal protein, white flour, sugar, dairy, eggs, & nightshade veggies)
Current Status:  11/2/07 Ending 5 month remission w/mini-flare :-(

Posted 11/29/2007 4:42 PM (GMT -6)
Wow, it is so great to hear about other people struggling with this issue.

To answer Quincy's question I am male, so my concern is less about the actual pregnancy and birth and more about the heredity. Although due to the nature of my job (hopefully) after I am done with graduate school as a professor, I may be responsible for a lot of the day to day care due to schedule flexibility.

I have never heard of a genetic counselor, but that sounds interesting!

Also, another reason why I am really concerned is because my Dad has Crohn's, so it just seems as if my children would have an even higher likelihood of having this disease.
Posted 11/29/2007 4:46 PM (GMT -6)
This is so personal, there are no cookie-cutter answers that fit for everyone facing this decision. There are no guarantees. If you are ready and you believe you have gifts to offer a child, I say go for it. I believe in the future, we cannot imagine what will be available to treat the illnesses that we struggle with today. Life is a crap shoot.

I personally did not have children and I am 52. Part of the reason that didn't happen for me is because in my 20's, I was not ready, in my 30's and 40's I was struggling so with depression, and in the end, time passed me by.

I do not have an unmanageable (by any stretch of the imagination) variety of colitis. I was much, much, much more concerned about passing on my chronic and much more debilitating depression onto a child. Besides, I was in no frame of mind or emotional condition to be able to meet the needs of a child when it was possible that I could actually conceive and deliver one.

Best of luck in whatever you decide. I wish more people would think about it ahead of time like you are and prepare themselves.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri

Posted 11/29/2007 4:50 PM (GMT -6)
A research doc in Canada had this write up regarding the genetics and inheritance of IBD....

Genetic influences have long beein suspected to play a role in IBD based on the following clues.
1. a significant percentage (~20) of IBD patients have a relative that also suffers from IBD.

2. certain ethnic groups are at substantially higher risk for IBD than the general population (jewish desent).

3. there are extream cases of familial IBD where nearly every member of a family suffers from the condition.

4. in studies of identical twins, if one twin has crohns, there is a 40-60% chance that the other wtin will also have the disease.

In the past few yrs, advanced genetic techniques have allowed scientitist to discover at least 9 different gene clusters that CONTRIBUTE to the development of IBD and DEFINE THE SEVERITY AND behaviour of the disease overtime.

some of these genes encode factors involved in reconginition and defense against bacteria (why probiotics are key!!!!) Mutations in immune response genes may adversely affect how the immune system reacts to harmless bacteri and this probably contributes to the development of IBD.

Several different genes have been identified that are associated with IBD and it's very likely that many more IBD genes exsit and await discovery...how genes are passed from parent to offspring is still poorly understood (especially since not necessarily does every IBDer have a parent with IBD)...some have other family members with it, grandparent, cousins, ect.

For CD, cigarette smoking is one KNOWN trigger for CD....so if any of you smoke, you shouldn't smoke around your kids as second-hand smoke is included in this environmental trigger.

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 11/29/2007 4:58 PM (GMT -6)
This is definitely a really interesting question and I've enjoyed reading the responses here.

I've always been on the fence about whether I want to have kids and I've decided not to. The thing I have noticed is that the decision NOT to have kids seems to require justification in our society. Having kids in the norm. If you don't, then you should have a good reason. UC sounds like a good reason and maybe for some people it is. I'm sure that there are other people besides me who maybe weren't psyched about having kids and decided not to have kids in large part because the idea of taking care of kids when you feel like heck is horrifying to us. BUT, I think that if I'd REALLY wanted to have kids, I would have done it anyway. People tend to figure out how to get through the hard stuff when they want to. So the UC might be the reason I give to myself or others because it's the easy reason.

But in reality, I don't actually think that's the best reason not to have kids. Extended family or babysitters (if financially feasible) could provide backup during flares when child care might be too difficult. And the heredity issue, like others have said, is just part of being human. We pass things on to our kids and we can't know what it will be.

Thanks for the opportunity to think about this "out loud" and share some thoughts.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

Posted 11/29/2007 5:01 PM (GMT -6)
There's also this info...

Clinical, epidemiological and molecular data reported in the last 5 years have provided strong evidence that genetic factors are important in susceptibility to both Crohn's disease and ulcerative colitis. The model of disease inheritance which best fits the epidemiological data is that Crohn's disease and ulcerative colitis are related polygenic diseases. However, genetic heterogeneity is likely to be extensive, and may well underlie the variability in clinical presentation associated with inflammatory bowel disease. Considerable progress has already been made in identifying potential disease susceptibility loci using the technique of genome-wide scanning. There is optimism that international collaborative studies will allow fine mapping of the loci implicated on chromosomes 16 and 12. The identification of novel susceptibility genes has become a realistic goal for investigators. Once this has been achieved, there are likely to be immediate clinical benefits, both in understanding disease pathophysiology, and in disease management.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 11/29/2007 5:32 PM (GMT -6)
I'm in the same situation right now - recently married, talking about kids. I would feel so guilty if my kids turned out to have UC.

But, on the other hand, they could cure it tomorrow, or next year, or ten years from now, and some above have pointed out the odds are small of your child getting it (though my mother had it as well.)

What I'm also concerned about is whether the stress of caring for children would give me a nonstop two decade flare.
12 Asacol
100 mg Imuran
6 or 9 fish oil pills
4 Acidophilus pills

Posted 11/29/2007 6:04 PM (GMT -6)
lol, UCinGV, kids might cause a two decade flare! I did not think of that = )

Just a couple more cents from me. My Mom had UC and she had it 50 times worse than me. I am very glad that she did not make a decision not to have me b/c of it and I am very glad to be here = ). (I intend this comment to be taken as I am not angry at my Mom for me having UC).

Also, my brother and sister are both smokers and do not have UC (ages 42 and 27 respectively).

For the people that decide not to have kids, I think that is great. I don't think that anyone should have kids, 'just to have them' or for any other reason than a conscious decision to want to be a parent (and all that comes with it.....). Like I said before, it's a very personal decison and whatever the factors are of deciding not to have children or to have children as long as the people making them are comfortable with the decision that is what matters.
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 11/29/2007 6:30 PM (GMT -6)
We chose not to have kids. Not only am I concerned about possibly passing gut troubles along to my children, I'm worried about how I would handle the stress of having a baby/small child. I have no idea how pregnancy would affect my UC and frankly, I don't know how I'd manage caring for a baby/small child while trying to take care of my own health and hold down a full-time job. (I'm the primary bread winner in the family.)

I've learned to manage my UC and am mostly in remission now, but I think back to the first couple of years when I was diagnosed and how sick and desperate I was. There were many times when I was stuck for hours in the bathroom, bleeding and in pain, that I thought, "Thank God I don't have children. What would I do? Lock them in the bathroom with me?" There are no guarantees I won't someday be in that same shape again. For me, it's not worth the risk.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

Posted 11/29/2007 8:25 PM (GMT -6)
Most definitely if kids don't fit into your lifestyle then don't have them...when they turn legal age, it doesn't end there, once a parent always a parent, no matter how old they get, you'll always have the parental worry and everything eles that goes along with being a parent...

I have to say though, although I didn't get sick with my crohns until my first baby was a yr and a half old, most people assume that at that age she'd be heading into her "terrible 2's" and she was a peice of cake until she became a teenager (which she currently still is, but being in Canada, she's legal at 18), my second child I had aprox 3 yrs after the first, was a colicky baby, didn't sleep worth a darn, but grew into a great kid and although he's also a teen now (14.5) he's been a dream kid, he really made up for being a brat just as my daughter made up for being an angle when she was little, funny how it can work that way...the yrs go by so fast and I've always been in some degree of a flare througout their childhoods and we still managed quite well even with little bumps in the road our daughter put us through....but seeing them growing into such beautiful, responsible and productive people is reward enough especially when I look at how one of my sisters kids turned out (very bad news from the time they were little to now, mid 20's and early 30's and they're hellish people)...

It's all a personal choice, no one can tell you whether or not to have kids and IBD can sometimes be the deciding factor especially if your disease activity is more on the severe and constant side compared to an IBDer who is more mild and has more frequent/long lasting remission...as this is something to consider as well maybe.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 11/29/2007 10:25 PM (GMT -6)
I was diagnosed as soon as I became pregnant...Had no clue what was in store it was a challenge but I was very glad to have had my daughters however wound up in the hospital when my first daughter was a year old for 2weeks and my second daughter I wound up in the hospital for 29days. I thought at time I would never see them grow and my friends and family had to take care of them....Well I am happy that I had them and I am desperate for a cure.. I know there is surgery and they say thats next for me... I am not quite ready as I just came off prednisone after 6 months and finally feel like myself... Don;t want to leave my kids again very hard on them...These are personal choices, this last flare was a big problem on my body and my mind but I think it makes me stronger and my kids stronger that I want to get well for them,,, My little girls bring me the biggest joy on earth and even thu my body may never be right my heart has such love from them!!!!!!Good luck to those who don;t want to have children I completely understand.. I pray my girls don;t get this. I keep a journal just in case something happens and I die and they do get UC they can read it and hope they follow some things to help them, and everyone who has kids and struggle enjoy every minute you have they are precious....God Bless all of us with this terrible disease....




12 Asacol,1 protonix, Remicade every 6 weeks, mulit vit, probiotics
Asacol 400 mg 12 a day
Remicade every 6 weeks
Proton ix
Xnanx
Anitriptalyn

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