Do you want children knowing they could have crohn's?

[zyamase]

hi there,

i am young female, diagnosed a month now with crohns, strugglin with abdominal pains, and i wonder as i am single , if i want children knowing there's a 10% chance that i could pass this onto them.

do you have children? did you pass crohns onto them ? is it like watching them suffer ?

or did you decide to not have children ?

i was always on the fence with respect to having children, now i wonder ?

what is your opinion ?

 

[StarGirrrrl]

I am undiagnosed, but for me children are now a no. Even if my problem turns out to be something I can't pass on, there is the potential I will get into my current state again- can barely look after myself let alone kids too.

It's a very personal and individual decision :ghug:

 

[liv]

My mother has UC and I was just diagnosed with Crohn's. She told me about her illness when I was old enough to understand what UC was. For me it's been a benefit to have her support and knowledge. I think it's been very hard for her to see me suffer because she feels like she did this to me but I have never blamed her for anything and I would never in a million years ever want any other mom. It's kind of cute that we take our medication together in the morning. I think if you want to have children Crohn's should not stop you.

 

[Silvermoon]

I was diagnosed at the age of 11, so went trough the same questions you are asking. "Fate" dealt with it for me... been married for 14 years and couldn't get pregnant... and am now looking at having the 'plumbing' removed as it is causing more problems than what it is worth.....

My hubby and I often discussed adoption/fostering and were all for that - even got most of the paperwork in place at one time, but like Starrgirl, I often wondered how I was going to be able to take care of children when I couldn't, at times, take care of myself? Sure my hubby would help out - but after you go to all the trouble of adopting/fostering a child or two, and then can't spend any time with them because you are in bed all the time, is it fair to them? To you??


Plus the fact that even healthy parents can (unknowingly) pass genes on to their children that can cause issues in their life. So like liv has said, if you want to have children, having CD should not stop you from that .

I often wonder why, when it comes to the idea of having children, why it takes something like a chronic illness for us to think about the pros and cons of having children. To me, a totally responsible parent/family would be asking these questions of themselves anyway..... but that is TOTALLY just my opinion, and some of you know how whacked out THAT can be at times.... :redface: ......

Nothng wrong with asking the questions - just don't let the name of ilness stop you from doing what you want to do in life - whatever that may be....

 

[xX_LittleMissValentine_Xx]

I always thought I wanted kids. In recent times I have wondered why that is? And I think its just the way I was brought up, they way society lets us believe it is the norm. I have also thought about the same sorts of things about passing crohn's onto my kids. I think If I did I would be really upset. But I also agree with what the others have said, I don't think it should stop you doing anything you want to do. So I'm still on the fence, I am also single as well so I guess that makes a difference.
I think I could live with not having children, but if the right time and the right person came along then I don't think I would say no because of crohn's!
This has actually reminded me, my ex boyfriend (who at the time said he never wanted kids, although we were only about 17 anyway) once tried to suggest it wouldn't be ethical for me to have children! I think him suggesting that is actually unethical!

 

[Manzyb]

Gosh, I was just writing about how pissed I was hearing about other people with Crohn's (on another forum) saying that we have no right to have children. That it is unfair to the children that we have.

I think it is a personal decision, and I completely respect other's opinions, but for me, I wanted kids, and I am happy I did.

I was in a horrible flare, starting when she was about 6 months old is when it got really bad until I had my surgery in January. I honestly think that if I didn't have her to keep me going, and I knew that I had to be okay to take care of her every day, it seriously kept me going. I believe I would have been in way worse shape if it had not been for her.

Anyway, I had a child, and she's amazing and healthy. I know that I am going to give her everything I can and she will know how amazing and loved she is.

It's a hard choice, but I have a perfectly healthy husband. I was born to two healthy parents, and here I am!!! Sick with Crohn's.

 

[Irene3]

I had my little girl before I was diagnosed with crohns. She's 8 now, and every time she has a tummy niggle, I just pray, please God don't let her inherit it!
But I love her so much, so to say that people with crohns shouldn't have kids, I think is a bit far. She can put a smile on my face, even when the crohns is flaring the worst some days. Iv told her about crohns. And in answer to your question, yes I do say she has more chance of getting crohns, and she understands at age 8, when I say, not having lots of chips and chocolate is probably best for your tummy. I gave her fish oil for a while, because she was having a bit of trouble going to the toilet, and it's something I want to start again. Also a much healthier diet, which I think over time as she's growing up, will be a benefit to be in a good habit of healthy eating, even though I hope she won't 'need' to thanks to crohns.
Would I have another child though? I don't think so. I didn't have a regular menstrual cycle before my first surgery, and since, crohns up and down because in that first resection, I had 70cm of bowels recected, so I dont know if I could absorb enough nutrients for a baby. But each to their own I guess

 

[stella_luna]

Thank goodness I didn't get Crohn's until after I had my daughter. If I had gotten Crohn's first, I would not have had a child (and I will not have another, now that I have it). But she is the light and joy of my life, and I am so glad she is here. I hope with my whole heart that she doesn't get it. The thought of her getting it makes me more upset and angry than anything else. It's one of my worst fears. But despite my guilt over the fact that she might get this someday, I love her so, so much, and am so glad I had her.

 

[Katelyn.S]

Yes! I was diagnosed almost 3 years ago, after some tough times, and finally being put on humira, I am in remission, and have been for almost 2 years. I have always wanted kids, and this isn't going to change that. My aunt has UC but no one else in my family has anything. I was fed antibiotics like they were candy when I was younger, military "cure all" drugs, and I am determined not to do that for my child. I don't think that something like this should end all hope of a family, it ends enough dreams as it is.

 

[jvancil]

I have 3 children, ages 6, 3, & 10 months. I was diagnosed with Crohn's 12 years ago so I knew I had it when I had them. I have a very supportive husband and my mom, sisters, grandparents, & in laws all live close by. I feel guilty sometimes having my mom watch my kids so I can get my Remicade infusions, but i really try not to think about any of them getting my disease. I guess it's just one of those things that I will deal with if it happens and will pray that it never does!!!

 

[DustyKat]

Speaking as a parent that doesn't have Crohn's but whose two children do I don't think there are any right or wrong answers here, just personal ones.

To me a 10% chance isn't huge but of course that matters not if your child is that 10%. There are so many hereditary conditions out there that people don't give a second thought to when having children...heart disease, cancer, diabetes, mental illness....and on it goes. I personally don't think that if my children's desire to have children is so great then that shouldn't be denied on a what if. I wish with all might that my children didn't have Crohn's but it has also shaped them into the young adults they are today. They are driven, compassionate, resilient, funny, warm individuals that live life to the full and do not waste one second. They never cease to amaze me and I can honestly say that if they didn't have Crohn's I don't think they would have achieved to the extent they have.

I know it is cliche to say that nobody is perfect but nobody is. Many people say they don't want children until they can afford them, well short of being rich that is never going happen. I understand your concern about being there for them but children are very adaptable and it is far more important that you spend quality time with them rather quantity time. I think having Crohn's makes you more aware of that quality time and you are therefore far more in tune with not wasting it. My own Mother had her own health issues when I was growing up and I did not resent it one little bit but it did make me appreciate the special moments I did have with her. It made me realise that life isn't always easy and a given and some people struggle to get through from day to day. I don't think that is a bad lesson for a young person to be exposed to, it certainly makes you appreciate what you do have.

The choice is yours hun and whatever path you choose is the right one for you. There is no need to explain yourself to anyone just do what sits right with you.

Dusty. xxx

 

[Jennifer]

My fiance and I have decided to have children (when we're financially stable) even though Crohn's is in my family and his family has an undiagnosed history of bowel issues along with colon cancer.

Will I tell them about Crohn's? Of course I'll let them know that I have it because I may get sick often or take medicine in front of them and they will be curious. I don't see Crohn's as a death sentence and know that people can live (close) to normal lives. Remission is possible for everyone. I'll let my child know about the facts of the illness and if they ask if they can get it too I'll be honest and say that its possible but for now they don't and if they did I'm one of the best people they could possibly have at their side while they go through it (if they even really do get as bad as I did cause medications are always improving and some people have much more mild cases of it).

I went through the illness as a child myself and know how bad it can be (I lived in the hospital for almost 3 months, had a central IV for a year after, went through countless tests, was hospitalized again and had a bowel resection etc). Tests and medications have improved A LOT since then plus I know the best place to go for great GI doctors just 4 hours away from where I live (where I went as a kid, Lucile Packard Children's Hospital in Stanford Ca.). Kids are stronger than we think they are.

 

[Chuck78]

My wife and I asked this same question. I have crohns and she has UC. We were told there is a 50% chance that our child could get one of the conditions. We felt that life is still worth experiencing even with the risk, and a cure could be found at anytime. That said, first trimester down, hurry up and get here September!

 

[Sybil Vane]

I have two children and was diagnosed after I had kids. I couldn't have kids now because my disease is so severe, but I can't imagine not having children because there's a chance they might have Crohn's. There's a chance something even worse can happen and if we dwell in the negative, life's not worth living.

 

[Bamagrl]

My daughter is 11 and I was diagnosed 4 years ago

I was on another forum with same question and I had a long reply

I'll make this one short - I do believe that it is everyone's personal decision to make and had I been diagnosed prior to having my daughter, then no, I definitely wouldn't have planned a pregnancy but if I had become pregnant, which I did, I would not have ended the pregnancy either

I would just always be worried about what I had potentially passed down to her

However, I do believe that is someone is contemplating having a child that they take everyone involved feelings into account, even the unborn child

It really isn't enough that you are desperate to create this child and expect it to just roll with the punches because all kids are so "adaptable" or that your spouse, parents, or in-laws are expected to pick up the slack when you can't function - you may be lucky enough to have a wonderful support system in place and no one around you resents the extra burden that you are laying on them but is that your choice and only your choice to make

 

[CLynn]

I was diagnosed with my Crohn's in college. Maybe I was young and naive, but I never considered NOT having my kids. I was warned the beginning of pregnancy and right after are critical flare times, but honestly, I felt better during both pregnancies than I had since having Crohn's. Knowing there was no one in the family above me that had Crohn's possibly diluted my fears of having children who inherit it. I guess I left it in God's hands all around with my health and theirs. My husband was diagnosed with juvenile type I diabetes at 35 years of age (I know, right?) while I was pregnant with our son. Diabetes is also an immune system disease. So I do share the predisposition to both diseases to our daughter (she's a senior this year) but haven't my son yet, he's 10. I tell her in hopes that she will make wiser choices in eating and what not now, so she can start with a healthy body, but alas, she is a teen so this falls on deaf ears. Plus just knowing it's a possibility, if she starts presenting symptoms, she will be aware of what it can be, not clueless as I was for the first year. So, even the weeks in the hospital here and there since she was born, the surgery, etc, I still would not let the disease deprive me of being a mother. This was my personal choice, can't say it would be everyone's.

 

[KWalker]

I have crohns and although I'm a male, I can't wait to have children, when I'm ready of course. I read that there's a 7% chance if one partner has crohns and 40% if both have it. To me, it's worth the risk. There are much worse things that could happen and I personally wouldn't hold back from giving a person a chance at life because of it.

Like another person has said though, if I ever found out that I could not have children because of crohns or medicine I've taken, I would sign the adoption papers the second I found out.

 

[Manzyb]

It really isn't enough that you are desperate to create this child and expect it to just roll with the punches because all kids are so "adaptable" or that your spouse, parents, or in-laws are expected to pick up the slack when you can't function - you may be lucky enough to have a wonderful support system in place and no one around you resents the extra burden that you are laying on them but is that your choice and only your choice to make

This is irritating to me, because it's not that I was "so desperate" to have a child. No, I will not be "burdening" my husband or the grandparents if I'm sick and need a little extra help. It was a decision that I made with my husband, who also wanted kids. We both knew possibilities of the slight risk I will pass this on to my child or that I might not always be able to do everything for her. However, that doesn't mean that neither one of us should be able to bring a child into this world and that our child will not be able to lead a normal or happy life with us.

 

[Jennifer]

Everyone is entitled to their opinion. Children however are not a burden. If someone gets sick or breaks their leg they don't expect others to pick up the "slack." If others want to help then that is their decision (for instance my parents were physically abusive when we were very small and child services asked my father's parents to care for us, all 4 of us and they said "no," yet my mother's parents offered to care for us because they wanted to). Life happens and yes we all have to roll with the punches and that includes children. Not everyone has a support system yet that's not and never will be a requirement for having children.

 

[Bamagrl]

Obviously my opinion has angered a few posters

I stand by everything that I have said

I said that the other feelings of everyone should be considered and that the sole decision should not be based solely on your wants and desires

From what has been posted in response to my earlier post, it would appear that a lot of thought went into your choices

That was my point - if hubby, mom,dad, in-law's are all up for it then fine and dandy but how many posts are devoted to the unsympathetic spouse

My husband is wonderful and I consider myself blessed that he is so understanding but on the flip side, I've seen spouses leave one another when it really counted because they couldn't take the stress of it anymore

For me, had I been sick before my daughter was born then I would have been good with the decision of not having children

I don't see why that statement seems to cause such an uproar

To me, anyone who suffers from genetic disorders and decides to go ahead and have children is playing Russian roulette with someone else's health - you may end up shooting yourself in the head and that was your choice to make but everyone around you lives with the consequences

Currently, I am living with the consequences and I do worry about the "what if"

I don't see what is wrong with aknowledging that not everyone feels the same way

 

[Manzyb]

I do respect other people's opinions. Whatever you do or would have done is your choice, and that's great.

It wasn't necessarily your opinion that made me mad, it was the way that you put it.

Yes, I got defensive. Which I don't really do too often because I take things with a grain of salt, but it was the way that I perceived what you wrote, it almost seemed accusatory to me.

 

[Bamagrl]

How can it be accusatory when it was not directed to any particular person but to the general public instead

The only person I have directly responded to was on another forum with same thread and I thought it was very insightful because she grew up with a chronically ill mother and she did not have a rainbow view of growing up like that and did not want to pass that down another generation

I have a child whom I love very much and I would not trade her for anything but I would not have another now knowing what I do

 

[littlefreebird]

To me, anyone who suffers from genetic disorders and decides to go ahead and have children is playing Russian roulette with someone else's health

you've said a couple of times that it is the individual's personal decision to make yet you say the statement quoted above?
i think that's a slightly judgmental and general statement to make. just saying.
you haven't been in the position many of us are in i.e. living with the disease and not yet had children...you have a child, therefore you may never really know for sure what you would have done in this position.

for me personally, i am aware of the 10% chance of passing the disease on, i want nothing more in life than to be a mother, i don't think i'm being selfish, my grandmother had crohn's- had she have chose not to have kids i would not exist. i've been through a lot with my crohn's but i am so thankful to be alive and i enjoy my life.....

a great % of people in the world are going to either develop or already have some kind of serious illness- many of them being genetic, should they not reproduce? hmmm.

 

[Bamagrl]

Yes, I did say Russian roulette - it represents my thought process and how I view my daughter's chances of all ending up well with her

You make a very valid point of, I've already had my child - I say yet again, I would not knowingly get pregnant knowing what I do now but I would not end a pregnancy should I become pregnant

I just would always be worried and it would kill me if she ended up in my shape or worse

I don't see why my comments are so controversial - I would be lying if I said anything different

 

[Jennifer]

I don't see why my comments are so controversial - I would be lying if I said anything different

A lot of people say that they wouldn't have kids because they don't want to have their child go through the same thing they did and that's their choice yet they leave it at that. You on the other hand go further as to almost judge/put down others by what you say. It's how you say things like, "...did not want to pass that down another generation," or "the sole decision should not be based solely on your wants and desires," or "I've seen spouses leave one another when it really counted because they couldn't take the stress of it anymore," or "anyone who suffers from genetic disorders and decides to go ahead and have children is playing Russian roulette with someone else's health," or "everyone around you lives with the consequences," or "desperate to create this child and expect it to just roll with the punches because all kids are so "adaptable"," or "your spouse, parents, or in-laws are expected to pick up the slack when you can't function," and finally "resents the extra burden that you are laying on them..."

All of those comments are very negative and that's why people are reacting the way they are because those comments above paint us as disrespectful, uncaring, neglectful, wicked, rude, lazy, abusive, murderous, irresponsible, the list goes on and on. You pick a negative term and it fits with those quotes above.

As littlefreebird said, "a great % of people in the world are going to either develop or already have some kind of serious illness- many of them being genetic, should they not reproduce?"

That's what this topic eventually boils down to which is why we don't debate the issue just share our own personal choice. If we left the judgement out of our posts then it wouldn't turn into a debate at all. We've had this discussion on the forum before and many have had the same views as you and we all respect each others opinions, we really do. Its just that we like to keep it civil on the forum and do our best to try not to judge or label others. That may not be what you were trying to do but as you can see, some of the things you said struck a chord with some people. That's all we're saying.

 

[Bamagrl]

With all respect, my intent was not to insult; be dismissive, cruel, hurtful, etc

If my choice of words were out line then I do sincerely apologize

It doesn't change my mind but I am only responsible for myself and my actions, not everyone else's

I was attempting to explain my views and why I hold them, nothing more, nothing less

Life isn't always rosy and I truthfully don't see the problem with reflecting on the thornier issues instead of always looking at the beautiful bloom and ignoring the thorns

I will from now on be very careful in how and on what I respond

 

[Johnnysmom]

I have wondered if my husband and I should have another child now that we know we already have one with crohn's. The only thing that really gives me hesitation is that I don't want to be too busy with a baby to take care of my son. Everyone has these sorts of issues when facing having children and we just have to work through them the best we can.

I will say that crohn's disease treatment has changed dramatically in the last 20 years and will continue to do so. But there are more kids being diagnosed now than ever before. There is every reason to hope that this disease will be much more manageable in the future.

The only thing I would have done differently was to put both of my kids on Vitamin D when they were little. I have read a bit of research on this and I think it is an important link in all autoimmune disorders. And it won't hurt them.

I will say it would break my heart if I thought my son wanted children in the future and decided not to have them because of his crohn's. I wouldn't want the disease to take something as wonderful as being a parent away from him. And although it is hard having a child with this disease the joys far outweigh the sorrows.

 

[Bamagrl]

hi there,

i am young female, diagnosed a month now with crohns, strugglin with abdominal pains, and i wonder as i am single , if i want children knowing there's a 10% chance that i could pass this onto them.

do you have children? did you pass crohns onto them ? is it like watching them suffer ?

or did you decide to not have children ?

i was always on the fence with respect to having children, now i wonder ?

what is your opinion ?

I think that answering your question honestly has taken a back seat to a debate in ethics and morals which as several people have pointed out is not conducive to a pleasant forum

You do not currently have children and it would appear that the question is a hypothetical one, so here is my hypothetical answer

When you do meet the person that you want to spend your life with and if the question of children arises, I think that you need to honestly and openly evaluate your individual situation with your significant other and bring your support network into it also and get their opinions before a final and irrevocable decision is made to have children

If you and all around you feel comfortable with the idea of having children and everyone is on board with the fact that they may need to help out more than is usual and customary, then go for it

However, if there are any dissenting opinions amongst your family unit, then their feelings need to be carefully weighed and considered

If the desire to parent is strong but there is the fear of passing on Crohn's to any unborn children, then weigh the option of adoption

I know the argument to that will be, you don't know what an adopted child has the potential of developing and that is true but you do know what you are capable of passing down

The decision is personal and apparently, highly controversial but you do owe it to yourself and your "living" loved ones to hear their opinions and to consider them before diving into the pool

 

[CLynn]

Bamagrl, while I understand what you are trying to convey, I just want to say that even at it's worst, my Crohn's is never going to make me say that my life isn't worth living, or is less. That's a slippery slope to head down, to me. I have Crohn's. Plain and simple. While it would be nice to know the exact cause, I don't know that we ever will. It is what it is, but I will not let it defeat me. And should my children develop this, or any other disease, I hope they will go into it and thru it with a positive attitude and a knowing that it's not a doomsday sentence, but cross to bear.

 

[Silvermoon]

There are so many hereditary conditions out there that people don't give a second thought to when having children...heart disease, cancer, diabetes, mental illness....and on it goes....

Thank you!!! You always are able to write out EXACTLY what I try to mumble out in my posts! From now on I am just going to let you do the posting for the both of us....LOL!!

 

[KWalker]

Yes, I did say Russian roulette - it represents my thought process and how I view my daughter's chances of all ending up well with her

You make a very valid point of, I've already had my child - I say yet again, I would not knowingly get pregnant knowing what I do now but I would not end a pregnancy should I become pregnant

I just would always be worried and it would kill me if she ended up in my shape or worse

I don't see why my comments are so controversial - I would be lying if I said anything different

My response to you is that anyone to avoids having children because of their problems would be considered as selfish. You have a 7% chance of passing that on... which leaves a 93! (NINETY THREE) percent chance that baby will be born perfectly healthy. Why should you be the one to stop life from happening?

Also, I find it a little insulting when people talk about not having children because of crohns. I was diagnosed when I was just two years old. Sure I've had some difficulties but I've lived a normal life. I'm no vegetable, I don't consider myself disabled, and it's never held me back from anything. Hell, I've probably accomplished more in my life then a lot of people who are "perfectly healthy"

 

[Bamagrl]

CLynn, I too believe that my life is worth living regardless of what I have experienced thus far and will continue to experience - the difference, I believe is that I am "alive" now and I know what life is, while the question is do I bring into this world another person

I have a daughter whom I love very much and I have said repeatedly, even though, this never seems to be quoted, if I were to unexpectedly become pregnant, I would have the child, love the child, cherish the child and worry about what they "may" develop

I DO NOT nor have I ever advocated ending a life

I have said, before it goes as far as conception, to weigh the pros and cons and to be honest with yourself and to value the opinion of those whose support you are counting upon

That is all I have been saying - I have never said that the children that are already here should never have been born - I believe that there are other ways to satiate the need to parent without necessarily having a biological child and that there is nothing wrong with that

Obviously, I seem to lack the ability to convey this without causing hard feelings

 

[Bamagrl]

My response to you is that anyone to avoids having children because of their problems would be considered as selfish. You have a 7% chance of passing that on... which leaves a 93! (NINETY THREE) percent chance that baby will be born perfectly healthy. Why should you be the one to stop life from happening?

Also, I find it a little insulting when people talk about not having children because of crohns. I was diagnosed when I was just two years old. Sure I've had some difficulties but I've lived a normal life. I'm no vegetable, I don't consider myself disabled, and it's never held me back from anything. Hell, I've probably accomplished more in my life then a lot of people who are "perfectly healthy"

I do not feel that my position is "selfish" - I am not required, nor is it mandated that I procreate - that is an individual decision and if I choose to stop "myself" from creating a life, then that is my choice

Also, you ARE here, you are ALIVE, the discussion is about having children and whether you would or wouldn't - if you had not been born, you would not be having this discussion and you would not know what you were missing - no one is being insulted nor is it being insinuated that the lives of children who were born of Crohn's parents or develop Crohn's themselves are any less fulfilling or they are any less wanted or loved - obviously, from the numerous posts, children of Crohn's parents are highly loved and wanted

I "PERSONALLY" would not have another child now because I do not want to potentially pass this down to them - that is my decision and my choice

It does not make me love my existing daughter any less but it does make me worry about her more

 

[CLynn]

CLynn, I too believe that my life is worth living regardless of what I have experienced thus far and will continue to experience - the difference, I believe is that I am "alive" now and I know what life is, while the question is do I bring into this world another person

I have a daughter whom I love very much and I have said repeatedly, even though, this never seems to be quoted, if I were to unexpectedly become pregnant, I would have the child, love the child, cherish the child and worry about what they "may" develop

I DO NOT nor have I ever advocated ending a life

I have said, before it goes as far as conception, to weigh the pros and cons and to be honest with yourself and to value the opinion of those whose support you are counting upon

That is all I have been saying - I have never said that the children that are already here should never have been born - I believe that there are other ways to satiate the need to parent without necessarily having a biological child and that there is nothing wrong with that

Obviously, I seem to lack the ability to convey this without causing hard feelings

I never thought you were advocating ending a life, not in the slightest. I just refuse to give up anything else to Crohn's, as I am not certain that science has proved the genetic link to my satisfaction. If our environment and food did not play a huge role in the upsurge of autoimmune diseases, my husband and his sister would not have come down with type I diabetes at age 35 and 36, with no family history of it before them. I just disagreed with the russian roulette comment. I would never "play God" in that way, or in not having children, that's just my opinion.

 

[Bamagrl]

Russian roulette was my way of expressing my views - I am truly sorry that I said it as it has riled more than one person's feathers - I could have said "crap shoot" - maybe that doesn't sound as militant but the meaning is the same

There are so many variations of ailments that Crohn's causes each and every one of us that there really isn't a size fits all answer to the question - I know what I have experienced and my decision is based on my personal experiences

Someone else may have a very mild case of Crohn's and has suffered very little discomfort and their viewpoint will be vastly different from mine

I have more than Crohn's - I have potentially passed down the genes for Ulcerative Colitis, Crohn's, Lupus Anti-Coagulant Disorder, Polycystic Ovarian Syndrome, Mytral Valve Prolapse and all the related conditions that come with a metabolic disorder - I take 22 pills in the morning, 2 in the afternoon and 7 at night and every 8 weeks, I have a Remicade treatment - I almost died of pulmonary embolisms last year

My daughter has witnessed all of it and she is very concerned that she will develop what I have and she has a right to be - how do I answer that for her - I can't assure her that it won't happen - all I can do is tell her that we will deal with it should it arise - is that answer enough and should she be satisfied with that ? constantly hanging over her head - I value each and every day that I have here on this earth, especially since it was almost taken away from me - I have no doubt that each and every member on this forum values their lives just as highly

I am only advocating responsibility and awareness

 

[Sybil Vane]

I can see through your posts, Bamagrl, that you are discussing this in an open way and not meaning to offend anyone. I think everyone who suffers from CD has already had so much taken away from them that to imagine not starting a family is just too much to take. I have severe CD and hate that my kids have to witness it, and they are old enough now that they're asking if they will inherit the disease. I've answered honestly, that not all CD patients have severe disease and many achieve remission for a very long time. I will be there for them if it happens, and I do have to say, that had I been diagnosed before I had kids and was able to have them, I still would have moved forward. It's a scary prospect, but having kids is. Also, I think most grandparents jump at the chance to help. I know if I let her, my mother-in-law would run off with my beautiful two kidlets.

It really is a personal decision and I think that having a family is incredibly healing. Like another poster said, she's not sure she would be able to be as strong if it wasn't for her daughter, and I feel the same way. I almost died this summer from complications from my last surgery, but I fought for my husband and kids and I feel like a stronger person all around for it.

There are so many sides to the conversation and all should be respected. The book, Sick Girl, is surprisingly bitter and honest about how horrible her life has been after a heart transplant. We don't all feel positive, but each feeling is valid and should be welcomed. This disease affects us all so differently.

 

[Bamagrl]

Thank you Sybil and by the way, I love your cat - I'm a cat lady also - my husband says that I am a cat whisperer

My daughter is 11 and this may change with age but due to what all she has witnessed for most of her life, she has already formed the opinion that she is not having kids herself - she will adopt

 

[zyamase]

as i read through all the posts , i realise this topic brings up a lot of emotions, i was asking advice from ppl who went through what i was thinking and i think that everyone is entitled to their opinion and i think some ppl misunderstood other ppl's opinion and i think the feedback honestly was all positive.

thank you for replying, it was very informative

have a good day

 

[chrisnsteph1022]

I would not have biological children and risk passing down Crohn's and bipolar disorder. I don't fault anyone who does, though. It's a very personal choice. Adoption is the best choice for my family.

 

[DustyKat]

Thanks Silver! I think...:lol:

Random question...How many of you on your diagnosis were offered genetic counselling?

Dusty.

 

[tjbeck]

Dusty... i hadn't been offered that at all!

I think my mom did some type of genetic counselling because breast cancer runs really bad through her side of the family, other than that, I hadn't heard of it before.

 

[CLynn]

Not me, but then, that was 24 years ago. My GI would always tell me having children was fine, just please don't get pregnant while in a flare.

 

[izzi'smom]

Dusty...love that question!
The debating is a waste of time in my honest opinion...this is a site to share our opinions without being judgemental. Everyone is generally very supportive of each other and their difficult, severely personal decisions, as they should be. What works for one family does not work for everyone, and we can all be respectful and share our differing opinions.

I have psoriasis, which is our autoimmune link to Isabelle's Crohn's.
After taking her to a specialist last year, I found out that psoriasis, along with my nieces Graves disease and my mom's Hashimotos (didn't even know she *had* this) were all linked.

I have often wondered if I *knew* this could happen how I would have felt about having my own children. I have wanted to be a mom *forever* (You know, what do you want to be when you grow up? My answer was mom from about 6 years old). I'm not sure I can answer for the childless me. Now that I know my dear, sweet girl, I wouldn't give her up for the world. I am sorry that she has to suffer with Crohns, but she has such a positive impact on so many other people's lives that I am thankful. Of course if I could have Crohn's for her I would. *She* tells me she is thankful she doesn't have psoriasis, because "people look at you funny, mom", or cancer, because "they have to rest a lot" (says my fatigued Crohnie lol).

Dusty, I would have loved genetic counseling. I know they do it here for high risk (over 35 years) pregnancies, but I like to be informed of the risks.

 

[CLynn]

Angie, strange that you mention psoriasis, I have it as well, got it for the first time at 16, a few years before I got Crohn's. Was strange, came on near the end of my grandfather's battle with lung cancer, out in the sun all the next summer and it never returned until my daughter was about 2 yrs old, so roughly 8 years after I was diagnosed with my Crohn's. I have fought the patches of it ever since.

 

[Jennifer]

Random question...How many of you on your diagnosis were offered genetic counselling?

I had personal and family counseling but nothing specific on genetic counseling. So no. Why? I've got worse things in the gene pool than Crohn's.

 

[DustyKat]

I asked that question because I think it highlights just how personal a choice this is. What I mean by that is, it really does boil down to your own opinions, beliefs and experiences.

At no point have I or my children been told that they shouldn't have children. In fact it has been quite the opposite. When you take the "I am doing this against medical advice" out of the equation then I think Crohn's does indeed fall into the realm of any other disorder that any adult contemplating having a child should consider. How is someone having Crohn's at any more scrutiny of having a child than someone that has a family history of say bowel cancer or is a severe asthmatic.

It would appear that the medical community rates the genetics of Crohn's as low risk and that in most cases it is a treatable and liveable disease. We all know that the severity of the disease fluctuates and for some it can remain a disease that affects your quality of life significantly for very long periods of time. In these cases I can easily see why one might say no to having a family but on the other end of the spectrum I can just as easily see why someone with mild Crohn's may not hesitate to choose to have a child. Then there are all the personal experiences inbetween.

Dusty. xxx

 

[Jennifer]

Well what's the counseling for when you explained it so well? I never even thought of people needing that type of counseling before but I guess everyone is different.

I know my GI back when I was a kid said it was ok for me to have children but that I would have to stop certain drugs and that's what struck the fear into me about having kids like, "am I going to get far too ill to even have a child because I stopped my meds?" I had people online tell me that I shouldn't have children because it allows a disease to live on. I used to want to adopt for those very reasons but I learned that I could have the same or similar issues with an adopted child and that my own child might not even get it and would simply stay a carrier (and their children's children etc.) and that I'm the best person for them for support cause I've been through it. I realized that the rewards outweigh the bad in my case.

That last bit wasn't really directed at you Dusty, you just got me rambling.

 

[LindaS]

Thanks Silver! I think...:lol:

Random question...How many of you on your diagnosis were offered genetic counselling?

Dusty.

I was offered genetic counseling when my husband & I decided to get pregnant, for several things. We had tests for Tay-Sachs and CF. If Tay-Sachs had been there for both of us, we never would have had children. Crohn's, on the other hand, while not a walk in the park, is not fatal, and can range from very mild to very severe. No one in my family has Crohn's, and I have it. So my thought on that is that while my son has a small chance of getting Crohn's, so would any child of parents without Crohn's.

It hasn't always been easy for us. I missed my son's second birthday party because I was in the hospital. My son knows I am sick and he's adapted well. He has tremendous empathy for people who are sick, and maybe that is something he has gained by having a parent with a chronic illness.

 

[DustyKat]

Reading over it Crabby I don't think I made my point very well. :lol:

Did I get the point across that the medical profession don't refer you for genetic counselling because they don't think it's a big deal as far as Crohn's is concerned? I don't think I am at my most articulate today! :eek2:

Therefore people aren't making these decisions against medical advice and to me that can be where some people may question the responsibility, or lack thereof, of the those that choose to have children.

I am speaking in the general sense here and not to any comments posted in this thread.

Dusty. xxx

 

[Jennifer]

I think you got that across. Maybe my post just didn't really fit with it.

I'm honestly more concerned with other conditions that run in my family such as diabetes, Alzheimer's and heart disease (and that's just my family let alone my fiance's on top of that).

 

[Scifimom]

I come from a family where autoimmunes generally did not exist. I am the only one with any kind of autoimmune disease. I was also diagnosed 3 years ago and my kids are, today, 11 and 8 yars old. I think that the having vs not having children issue has to do with each individuals opinion. Period. No justifications needed. You dont want to have kids, great, Crohns or not crohns you dont have to justify your decision. My parents had three kids, my uncle had no kids, it was their choice. Even if physically someone is incapapble of having children there are still ways to achieve it. On the other hand, if I want to have kids then I dont have to justify it either. Perfectly healthy Greek parents rely on grandparents for babysitting, I guess this happens everywere. Perfectly healthy parents may have kids with autoimmunes, leuchemia,cancer, psoriasis whatever. The russian roulette is not in crohns it is in our genes, thats nature. If you (generally) want children go ahead and have them. Noone can guarantee that they will be healthy and will live to 100, no matter what the parents health is. EVERYTHING else, taking care of them, being a burden rely on others etc are not side effects, they are consequences of having children and the package comes with every child. Pre dx there were days for me where I wanted to return my kids and ask for a refund. Well those days still exist and after dx. They exist for my healthy husband also. I agree with genetic counceling and pre-natal testing for devastating, life threatening conditions (cystic fibrosis, tay sachs etc), I agree in terminating a pregnancy which will cause such a condition. BUT I also agree that someone WITH a disease can have chldren if he/she wants, you can never EVER be 100% sure about your childs gene pool. As for "passing the suffering", come on guys, give me a break, we are humans we are programmed to suffer. In our lives we give birth, we get cut and burned in accidents, we get our appendix and our tonsils out, we fall and get chicken pox and measles, we break bones and get rushes from poison ivy, thats life, we cannot protect us or our children from suffering we can just hope that we will not win the lottery ticket for it. So everyone is entitled to have, or not have children and may the odds always be in our favor.

 

[LindaS]

Reading over it Crabby I don't think I made my point very well. :lol:

Did I get the point across that the medical profession don't refer you for genetic counselling because they don't think it's a big deal as far as Crohn's is concerned? I don't think I am at my most articulate today! :eek2:

Therefore people aren't making these decisions against medical advice and to me that can be where some people may question the responsibility, or lack thereof, of the those that choose to have children.

I am speaking in the general sense here and not to any comments posted in this thread.

Dusty. xxx

And I think I forgot to mention that even though we had genetic testing and counseling, they didn't once mention my Crohn's disease, only other issues that have to do with our ethnicities.

 

[Sha0913]

I have 4 children, 8 6 5 4, they are beautiful healthy energetic children. I have Crohns and knew it when I had my children, If anyone looks into their heritage there is atleast one genetic disorder that you could pass on to your children. There are a number of diseases that skip generations that you may or may not know about, that have a higher then 10% of passing on. I have my children tested once a year for crohns with their regular well check blood test. My 6 year old son has Celiac disease, Gluten Intolerance, did I have any idea he could get this no! but he has it.... would I ever want him to not have children bc he is afraid to give it to them, absolutely not! Children are what make most of us go on, I would never ask for my children to be sick, I never want them to be sick... but if it happens there are wonderful doctors and advances in medicine that will be there for them. I have always been open and honest with my children about my disease and that they could have Crohns too, they go with me sometimes for my infussions, to my doctors appts, and have been there when I have woke up for surgery, I tell them when it hurts and how it gets better, they are absolutely not afraid of doctors, needles, anything,,, they are the only kids that look forward to their well checks, they make me smile,,, Everybody is entitled to their own opinion and decisions and that is why we have freedom of choice!!!

 

[CLynn]

I had personal and family counseling but nothing specific on genetic counseling. So no. Why? I've got worse things in the gene pool than Crohn's.

OMGOSH!!! Thanks for that, it so made me giggle. If you knew my siblings, you would understand, I was reading that and smiling and thinking...."mmmm hmmm"!

 

[momto2teens]

kidsvsrisks

CD does not run in our family. I was an infertility patient that DID EVERYTHING RIGHT. It took me years and 26k to get my beautiful baby. 13 years later he is dx CD.
There are NO GUARANTEESS in life.
We do the best we can. Everyday, we just love them more..............

 

[serrickson]

We have FOUR kids - 10mo, 4, 7, and 9. Our 9 year old was diagnosed with Crohn's at 6, right smack dab when we wanted to have our fourth and final. He's had his ups and downs for sure. We were shocked when he was diagnosed because Celiac is on the maternal side big time. We thought it was that, initially.

Needless to say, it took us a year to come to terms and decide to have another baby. We were well aware of the risks. Ultimately we asked: would life be better without our 9 year old? Most certainly not. So why even question our initial desire for four kids?

At the end of the day, if you have the will, then most definitely have it your way. That is, if you want kids and can handle it no matter the circumstances then go for it.

I have a friend who had horrible odds of having a Downs child. Her first was totally normal. She wanted another, and guess what; Downs. So be it. She's brightened up everybody's life and mom has the will to get her through. We are no different. We love our kids and are better because of them.

The cold hard truth is that this Crohn's thing can be like a ticking time-bomb, a ghost (to steal another analogy). It may strike at any time and in any fashion. We must not forget how mild symptoms can be! Who is to say that a person frowning upon your decision to have a baby, while you are a diagnosed Crohnie, may in fact have the disease as well? So why question one person and not the other?

Needless to say, I'm a believer that Crohn's is as under-diagnosed as gluten sensitivity. But for an inflamed colon and subsequent fistula in our son, I wouldn't even be on this forum today. He'd simply be that lanky pale kid we all grew up with, like my father-in-law (who is Celiac); so what's the difference? We'd be none-the-wiser. It's just today we are getting better at finding these problems. And earlier might I add.

In our case, we suspect either my wife or I have Crohn's and don't even know it. After 36 years, four kids, and our first born diagnosed (the only confirmed case in the ENTIRE family) my wife is getting both an upper and lower GI. So be it.