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Posted 8/13/2009 5:19 PM (GMT 0)
I've always been more inclined to not want kids but my soon-to-be husband does want them and as I've gotten older, I've warmed up to the idea. That said, I'm worried that if I do have a kid, I won't have the energy to take care of them.

I'm on Cimzia and it seems to be helping but I still have fistulas and abscesses and it all leaves me exhausted. We recently got a dog and I have noticed that my fiance has had to do a lot of the care for her because I just don't feel up to it. As a person who didn't have the best childhood I would hate to do that to my kids. I don't want my kids to not even feel like they have a mom because I'm too tired to be a part of their lives.

I'm scared that I won't be able to live the life I might want because of this disease...if that makes any sense at all!

Posted 8/13/2009 5:34 PM (GMT 0)
Hi...I can relate I think to what your saying. Much of my younger years, I was pretty cetain I did not want kids. Then when I reached my 30s, I started thinking one would be great. My now husband and I talked about it before we got married and thought one would make us very happy....than I had some fistula complications, some thoughts about serious meds & concerns about my age and strength.
It came down to we have decided not to have kids (we were 38 & 41 years old when we got married). I have to say, I still wish I had one. I think that despite exhaustion and problems, I could have been a good Mom.
It sounds like you care enough to be a good parent too. I don't think that your illness would make for a bad childhood for a child....kids are very flexible and learn what is "normal" from their environment. Your child would just know that Mom gets tired, but would also likely learn to relish in Mom's good days (just like you should).
I believe in being practical, but my practicality made me decide against kids. I think I was too practical. I would hate to see this disease be your sole decision maker.

Sorry not much help, but I have been very emotional about this isssue with myself lately. I hope I could give you some later in age perspective.
Posted 8/13/2009 6:38 PM (GMT 0)
I agree with Habs that you should not let having this disease stop you doing what you want. Right now you are ill, but your disease could go into to remission. This is a disease of good times and badtimes and strangely enough, kids seem understand that Mom/Dad is sick and tend to compensate for it.

My girls are all adults now, and I was for the most part in remission when they were little, but I can remember times when things weren't good due to extraintestinal issues, and I somehow still cared for them. I think also right now, you are thinking of how you feel right now and how you would do it if you had kids, I think you just do what you can do. Maybe on the bad days its more at home activities, and you make up for it on the good days, with the more fun activities. Hope that helps a little.

Hugs
Gail*Nanners*
Posted 8/13/2009 6:52 PM (GMT 0)
Though you shouldn't necessarily let the disease control all your decisions there are definitely some patients that are very bad off with their disease and having kids is both physially and mentally draining...not saying anyone should or shouldn't have kids, no one can make that decision for you it's a personal choice....I had one kid before CD and one during CD, it wasn't easy be we managed, one is 19 and living on her own the other is 16 (teenaged yrs were definitely an experiance with my daughter but my son has been easy), you just don't know what lies ahead so you have to be prepared to be in it for the long haul and even when they're on their own you always worry, there are equally as many joys as there are fears when it comes to having kids in my opinion and speaking from experiance.

Go with your gut instincts and never feel bad or guilty no matter which you choose.

:)
Posted 8/13/2009 10:44 PM (GMT 0)
I agree to with the others. Do not let the disease control your every decision and do as your heart truly wants. Kids or no kids.
I just had a baby myself in March, he's 5 months in a couple days. I DO have bad days, where I feel like I can't watch him. Even spent some weeks in the hospital unable to watch him at all. Then there are also the days where his smile at me makes it all completely right and worth it.
For my tired days I always have my parents support to help me, if I ask they will come and take baby to thier place so I can relax and get better or they watch him here while I sleep, either way. For the other times if hubby is home he watches baby. During days when I am okay, I take the effort. It REALLY helps to make sure you have proper support lined up. You could talk to family about that before you make a decision one way or another. Find out how much help hubby will be, family, in laws (mine are in another province so I cant' rely on them) and such.
For sure I am glad I had baby. Even today I'm having one of those 'why did I do this' days..I have a bad cold, weak, tired, headache, baby is cranky and all, but when they smile, still worth it, and I know if I REALLY needed I could of picked up the phone and called for help. I know he doesn't love me any less (yet, haha) for being sick or tired sometimes.
I also grew up with a dad who has severe crohns, and around or not, in hospital or not, I never loved him less cause of it, it was just natural to me, like others said. You just grow up with it and adapt as if you never knew any better and it doesn't make a difference.
Posted 8/13/2009 11:16 PM (GMT 0)
My GE said that conceiving children while on biologics (such as Cimzia) is not advised and that either sex should be off them for at least 6 months. It sounds like they're just being extra careful as there is not yet enough evidence to know whether biologics may cause birth defects, premies, miscarriages, etc.
Posted 8/14/2009 2:44 AM (GMT 0)
I think the fact that you are thinking about this now and preparing for it shows that you'd be great when/if you have kids. Lots of parents have illnesses/challenges pop up that can make life harder, but, like Gail said, you just do it. I only have a one year old, but it has been the best thing to ever happen to me and used to think I didn't want kids. I've been sick and exhausted for stretches since she was born (mostly from non-CD things) but you just find a way to do things. You can totally adapt. Someone here recommended putting a bouncer in the bathroom. When I had a little bout with CD when she was a newborn it was perfect. If I had to sprint to the bathroom I popped her in it in front of me and she was in a safe place, happy as could be. Other moms wouldn't have to do something like that, but it worked great for me and she was fine. One day when I was really exhausted I let her watch a baby video. I don't like letting her watch those, but who cares? It was one day. There will be similar ways to adapt in the future and you have a partner in this.

If it's what you want to do don't let CD stop you.
Posted 8/14/2009 2:55 AM (GMT 0)
This is an interesting subject. I see both sides. I'm 42 and wasn't diagnosed until I was 37. Howerver, I think I really suffered with bad IBS for a long time possibly Crohns for quite some time before the diagnosis.
Both of my children are in college now and I look back at just how tired I was taking care of them! I agree with the many people here who have written that it is very important to have a family support system. Both my parents had passed away youg and my husband travels often through-out the week. We moved frequently due to his job. I really didn't have a great support system. I tried to get close to my church family and that helped some.
Having an auto-immune disorder is very up and down. After my c-sections....because it is a major surgery I didn't heal like other people. Having an auto-immune disorder and having major sugery is soooo difficult on your system. It truly took me months to recover. Just changing a crib sheet was an event. I was sore, and tired and my baby's were good. It was frustrating. I wouldn't change anything for the world now....but, it is a big undertaking. Breakfast every morning...car rides, I also would have to choose WHO's game to attend... if at all. This is all very exhausting. My children are understanding to a point. They miss me....I have to choose what events to even go to. Daughters grad ceremony or party...not both because I can't do it both!
They are both treasures to me...but I surely would have appreciated Support. Even a nanny to come in a couple hours a day for a nap!
Good Luck!
Posted 8/14/2009 3:41 AM (GMT 0)
I totally understand where you are coming from...your personal struggle is difficult..but let me share a postive thought with you..if having a family is what you want. I have crohn's...two abscess surgery..cut open a million times, a fistula and i have been pregnant two times..i have two beautiful kids..both delivered by c-section..don't give up..and don't let this disease control your life and determine your happiness!
Posted 8/14/2009 5:31 AM (GMT 0)
I started to get sick a few months after my son was born. Great timing eh? Of course I have my bad days, but you know what? You make it, you push through. It's not always easy, and there have been days where I put on the good old depend diaper to get him to school, go to his activities ect.. We homeschool now, and I still manage well. You find your grove.

Like most people I have periods where I feel pretty good (never perfect), and periods where I'm sicker. It helps have a supportive spouse. But you make it. I wouldn't give up being a parent for anything, and I wouldn't have let Crohn's stood in my way.

Unfortunately I can't have anymore. I have fertility issues, high blood pressure, and my Crohn's to deal with. My docs have all said it would be very risky for me. And I feel it's more important for me to be here and stay as healthy as I can for the one child we do have. So he's my miracle baby, and having him gives me another big reason to fight this DD.
Posted 8/14/2009 1:59 PM (GMT 0)
Thanks for the encouragement, everyone. It's been very helpful to hear your experiences. I'm not sure why I didn't have faith in my ability to adapt, some anthropology student I am!!
Posted 3/2/2012 6:48 PM (GMT 0)
I'm just curious how the original poster is doing now...I've recently come across this dilemma myself. I've been sick since I was 15 and now I'm almost 26. I've been in remission for a total of maybe 2 years this entire time so it's defintely been a struggle. I've always thought I didn't want kids and my boyfriend and I recently broke up over this because he really does want kids. Now I'm kind of struggling with the idea that maybe I've been stubborn all these years and haven't given the other side of things a fair shot. I keep hearing myself say that I'm scared of having kids, and that's even knowing I would adopt if it came down to it because I really don't think having my own would work out well.

However, my family is very supportive and my (ex)boyfriend is very understanding of everything I go through and has even said that he knows he'd have to be the one taking care of any kids on my bad days.

Basically now I am completely unsure if this break up is just making me emotional and that's the reason I'm considering the whole kids thing or if I really was just too stubborn all these years to give it a fair chance and was just letting Crohn's make the choice for me.

 

Posted 3/2/2012 9:54 PM (GMT 0)
I never wanted anything more than to be a parent, but I don't believe that parenting is for everyone. It is a lifetime commitment, and one that should be seriously considered. I'd hate for you to have a child just to appease your boyfriend and/or keep the relationship from ending. I'm wondering if it would be helpful to you to see a therapist so s/he can help you sort out your feelings? There are many many ways to be loving and creative in this world besides having kids. You should make sure it is really for you. Even if your boyfriend takes care of the kids on your "bad days," they are still emotionally always in your life...just something to think about. Having or not having kids doesn't make you a better or worse person, so please don't be "guitled" into having a child.
Posted 3/2/2012 10:16 PM (GMT 0)
Oh yes, I've already considered the fact that I'm pretty emotional right now. And I made an appointment to see a therapist already. And made a list of things to talk about while I'm there. I'm usually very level headed and practical, but I also know I'm incredibly stubborn so once I make up my mind on something I rarely change it. That being said, the fact that I'm even trying to see this from all sides makes me believe that it's worth exploring my thoughts on kids. Whether or not he and I get back together, it's something I need to know about myself. Maybe not today or next week, but eventually it will come up in another relationship and I want to be prepared.
Crohn's has taken so much away from me, but it's also shown me that I'm stronger than I ever thought possible. I know I CAN be a parent if I want to, but it's incredibly scary and easy to forget how much I'm capable of when the easy way out is to say I don't want them. Hopefully the therapist can help get some answers when everything is a little less fresh.
Also, to be clear when he and I talked about kids it was not his intention to have kids right away. We are both almost done with school and still have several years of finding a steady job ahead of us.
I appreciate your input! I'm really trying to hear everyone's advice and see how it makes me feel. The last thing I want is to have kids and resent them, but I also don't want to be stubborn and then regret it one day.
Posted 3/2/2012 11:06 PM (GMT 0)
My daughter is 11 and every since she was born, my health has deteriorated due to a number of reasons

Crohn's being the latest

I too did not think I wanted kids for years and unexpectedly became pregnant when I was 33

I love my daughter and I wouldn't trade her but if I had known what a physical beating I would be in for, then I am not sure that I can say in good conscience that I wouldn't change a thing

The selfish part of me looks at the fact that it physically is very hard to keep up with my daughter and she is very active in sports and activities - I also have to pick and choose what events I go to - if it wasn't for my husband, aunt and my daughter's best friends parents, it would be very hard for me to keep her life from experiencing more upheaval than it does already

There is another part of me that is terrified that all my conditions will be inherited by her

That would kill me more than anything - I do not want her to experience what I have and if she does, I know it will be because of me and that would hurt so much more

I really believe that someone who has illnesses that are genetic should really think twice about having children

I just believe that it is unfair to that child that just because you want a child, you're potentially passing down your faulty genes to them

If you really feel the need to parent, then adopt

At least that is what I believe now

I have 3 autoimmune disorders, polycystic ovarian syndrome, mytral valve prolapse - I take 22 pills each morning - 2 in the afternoon - 7 at night and remicade every 2 months

Should I have taken the risk of potentially passing my faulty genes down onto another generation

My answer to that is that my daughter was an accident or a miracle depending on how you want to view it - married 11 years and had PCOS - not on birth control - all of a sudden I get pregnant - never really thought I was missing anything when the doctor's told me that I would have to have help if I wanted to have kids - just thought it wouldn't happen so I didn't dwell on it - then I have her - health takes a turn for the worse and kept turning for the worse - doctor's now tell me, it wouldn't be good for me to have another baby - my thought to that was "ya think" - developed a bloodclotting disorder that nearly killed me last year, crohn's and ulcerative colitis in large intestine - and now all I can think of is what are the odds that she is going to suffer from any of those ailments and it worries me greatly

If I had hindsight, I wouldn't have had kids - I may have adopted but I wouldn't have given birth - I feel guilty knowing that if she suffers in the future from any of this, it will be my fault and only my fault
Posted 3/2/2012 11:24 PM (GMT 0)
bamagrl, I would DEFINITELY adopt if I made the decision to have kids. The thought of passing on Crohn's terrifies me and I just don't think it's safe for me to be off meds, I don't think my meds are pregnancy safe, and I don't think that carrying a baby would be a  good idea. I've read that pregnancy can induce remission, but I'm not willing to take that chance with my body.

I'm really just trying to figure out for myself if I want to raise children and have them in my life.

Posted 3/3/2012 12:44 AM (GMT 0)
At 50 years now (B-day was saturday) I feel that I am missing out on a big part of life. All my friends have kids (or have adopted in one case). It hurts. But...
Realizing that I am a Crohnie and a (probable) autistic, do I have any right to bring a child into this world who would have a better than average chance of having at least one of these conditions via genetics?
It is something of a moral quandry for me now.

Sincerely,
Matt
Posted 3/3/2012 1:06 AM (GMT 0)
I think it's only in very recent times that we've come to believe that everything in a child's life has to be absolutely perfect otherwise they will be miserable and doomed to failure. This notion of childhood is very new and does not exist in most parts of the world. So, it's in no way unfair to your future child nor will it disadvantage them. Many kids grow up in hardship and still grow up to have good and valuable lives. So, I think you concerns are legit but coloured by what many of see around us in terms of how childhood is presented and it's not the case for many kids many of whom are still very happy.
As for having a child with an illness, I have to say, I've been reading these posts for two and a half years and this has come up many times with many saying or implying that it would be better if such a child had never been born. I actually had to get away from these boards for a long time because of these comments and the anger I felt as a result. I have a child who has early onset UC and yes it is very hard. But, implying that it would have been better had she not been born (not that anyone is saying that exactly but that's generally the obvious elephant in the room in many of these threads) is pretty abhorrent. Raising a child will present many challenges, not just the risk of inheriting IBD, but of accidents, autism, all sorts of potential health and behavioral issues etc. If you're not able to accept these risks I don't think you should seriously consider having children.
Posted 3/3/2012 11:43 PM (GMT 0)
I was extremely hesitant about having kids for the first few years of marriage. I felt I was too sick to take care of kids. Now many years later, I have two. It is very difficult on my bad days and sometimes my kids don't get to go out much for a few days, and I limit extra-curricular activities to ones that are more flexible. I had very rough pregnancies too, high-risk, and almost miscarried both times.

But I wouldn't change having kids for anything. They're the BEST thing that ever happened to me. I'm so glad I have my kids to love unconditionally and to know forever. It's awesome. If you have the capacity to love another human being forever, then don't let this disease dictate such a life-changing and rewarding decision.

Best wishes!
Posted 3/3/2012 11:50 PM (GMT 0)
Thanks for all the advice everyone! I know this is a choice I have to make for myself and no one else, but it's incredibly helpful to hear what others have gone through.
Posted 3/4/2012 5:11 PM (GMT 0)
I had my kids in the 20's and was diagnosed and started having debilitating health issues in the 30's..I went through periods in my 30's of not being able to be there at their activities ect.No one else can make that choice except for you. I know I have passed CD along to at least one child..He has CD along with having his intestines backwards in his body..Passing along this DD and being well enough to care for a child is a concern..My fertility also ended with DX of this disease with early onset menopause..
Cindy
Posted 3/7/2012 7:52 PM (GMT 0)
I grew up with a sick mother and it sucked. From the time I was 12 until she died a few weeks shy of my 17th birthday she was in and out of the hospital. There were times that I would call home to say I'm going to friends after school but she was too weak to get to the phone. I would then have to run home worried about what I find when I got there. Now that I'm sick and I go through some of the same things and think it would very unfair of me to have a child.
Posted 3/8/2012 4:34 PM (GMT 0)
I suppose so. But I would want a better life for my child than I have had. There are hardships & then there are HARDSHIPS. Despite my background, I do not know if I could handle it if my son/daughter were born autistic.
And CD together? I just do not know..
However, seeing as how both of those conditions has nearly eliminated my love life, I may just be daydreaming anyway. <Sigh>

Sincerely,
Matthew
Posted 3/9/2012 1:46 AM (GMT 0)
This post brought me to tears.

To think that this disease influences our lives this much.

Yes, so the meds we need to be on may not be safe to be on while pregnantg ... and some of us have active disease enough that if we had kids, we would need help raising them.

My CD didn't become active until my three boys were in highschool. I went on disability for a short burst and they understood.

I don't know what I'd do about a decision about having a baby way back when.

Now, I'm over 45, happily remarried and have a joined family of six kids. Grandchildren I'm sure coming soon. All I know is that having chidren and grandchildren now to enjoy and family to surround myself makes it more bearable with my disease ... I'm glad that I have a larger family.  We all have choices. I will pray for you. It is not easy and everyone has to make their own. Everyone is different. I hope that what everyone shares helps. We all care.

Posted 3/9/2012 5:41 PM (GMT 0)

petittarte said...
I grew up with a sick mother and it sucked. From the time I was 12 until she died a few weeks shy of my 17th birthday she was in and out of the hospital. There were times that I would call home to say I'm going to friends after school but she was too weak to get to the phone. I would then have to run home worried about what I find when I got there. Now that I'm sick and I go through some of the same things and think it would very unfair of me to have a child.

Although, my daughter has always been very kind and considerate, I've often wondered how she really feels about the limitations that my condition puts on her.

She's had issues in school and I've had to talk to her teacher because she would just zone out and it always happened when I was in particularly bad health - the teacher's know now that if she seems to be out there, to talk to her privately and to give her more one on one help - thankfully, she goes to a private school and they are much more tolerant and capable of giving her the extra time that she needs

She's had so many plans cancelled at the last minute because I just couldn't do it or her daddy couldn't get off work in time to get her there

It has made her much more empathetic but I'm sure that it comes at a cost

Thank you for writing in and giving your perspective of things
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