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pixydust13
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/13/2008 7:01 PM (GMT -6)   
i have always wanted children and my fear is giving this disease to them...what are the odds of my children having this? i know there are people here that have children and have UC, how did you deal with this? i am aware this is a sensitive subject if this offends anyone some one tell me please
Kymie
Diagnosed June 2004
2.4 Lialda, 40mg Protonics, Flinstones vitamins(yummy),
Rhinocort nasal spray, albuterol, and Advair

Life is too short to wake up in the morning with regrets. So love the people who treat you right, and forget about the ones who don't and believe that everything happens for a reason. If you get a chance take it, if it changes your life let it. Nobody said it was going to be easy they just promised it would be worth it.


jolly1975
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/13/2008 7:16 PM (GMT -6)   
I am in the same boat as you are. I have come to that time in my life when children would be a blessing. I sure do not want to pass on this terrible disease but none of us can live with the what ifs our whole lives. Only the big guy in the sky knows for sure what will happen.One thing is for sure I am not going to let uc control my life. Or stand in the way of my wanting to have children. I just try to think positive if by chance I pass uc to my child at least I will be able to comfort them and not let them go misdiagnosed for years as I did. We always want what is best but sometimes we have no control. I hope this helps you in some small way. My problem is I have been taking remicade for almost one year and I am not sure whether I will be able to continue on remicade if I become pregnant.!!!!! I have been feeling really well these last few months.I have lots of energy and I feel that I have a real grip on this disease finally..

emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/13/2008 7:26 PM (GMT -6)   
You can find some information on this at the CCFA website. I believe the odds of passing it on to a child are somewhere between 5-10%. My daughter was born well before my UC was diagnosed, so I didn't face this exact set of concerns, but I certainly do commiserate. I pray my daughter will end up in the majority that DOESN'T have UC.

One thing I do want to mention: I've found that parenting a child during a flare is a real challenge. I'm embarrassed to admit how much PBS kids my 5-year-old has been watching lately. And getting her to kindergarten by 8:25 (while dealing with my own morning challenges) is tricky. My husband leaves for work before 7:00 and comes home around 5:30. Our family is all far away, so that source of support isn't around. Luckily I have some very kind friends, but I don't want to lean on them forever. Plus, I don't want my daughter to grow up thinking of mommy as weak and sick. It's tough. That said, I can't imagine life without her.

Wishing you all the best,
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


pixydust13
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/15/2008 9:09 AM (GMT -6)   
5-10%? i thought it was 50-50 i thought it was almost certain that my children would get this, i guess i got all worked up in the beginning for no reason lol i didn't directly ask my doc about the statistics but he gave the impression that it would be dangerous to have a child while battling this disease. ive also heard theres a higher probability to miscarry when you have a flare, but how can your not have a flare sometime in between those 9 months? you body is already being put through hell by nourishing the unborn baby, so how doesn't that cause a flare? idk i just feel so sad cuz no matter what this disease is gonna affect my childs life, as someone said she doesn't want her child to think mommy is sickly and weak thats what i think about, taking my pills in the future and then my daughter walks up and asks me what they are. when my friends first saw me taking so many prescriptions they thought i was dying, especially when i said remission and then didn't explain, they all thought i was dying of cancer. but anyway my main concern is, is there a way to stay healthy while your pregnant if your scared to take the drugs while you are?
Kymie
Diagnosed June 2004
2.4 Lialda, 40mg Protonics, Flinstones vitamins(yummy),
Rhinocort nasal spray, albuterol, and Advair

Life is too short to wake up in the morning with regrets. So love the people who treat you right, and forget about the ones who don't and believe that everything happens for a reason. If you get a chance take it, if it changes your life let it. Nobody said it was going to be easy they just promised it would be worth it.


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1198
   Posted 9/15/2008 9:13 AM (GMT -6)   
It's 5% or something like that and even then it isn't a proven FACT. Don't worry about things you can't control. (I say that as I am the worst at it) That's just the way it is.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/15/2008 10:17 AM (GMT -6)   
Kymie, I know there are websites where you can find information about being pregnant with UC, sorry I can't think of any right now, but CCFA would be the best place to start. What little I remember suggests that you're best off staying on meds while pregnant (assuming you're on mesalamine). Maybe a little research would help ease your mind.

I agree with LondonRed, don't worry about things you can't control (and like Red, I'm the worst at it!).

Wishing you the best,
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


pixydust13
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/15/2008 10:23 AM (GMT -6)   
thanks guys and ur right, its such a waste to worry about things you can't control especially when doing that makes you sick...but then again its easier said then done too tongue
Kymie
Diagnosed June 2004
2.4 Lialda, 40mg Protonics, Flinstones vitamins(yummy),
Rhinocort nasal spray, albuterol, and Advair

Life is too short to wake up in the morning with regrets. So love the people who treat you right, and forget about the ones who don't and believe that everything happens for a reason. If you get a chance take it, if it changes your life let it. Nobody said it was going to be easy they just promised it would be worth it.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/15/2008 10:49 AM (GMT -6)   

Actually, we have several members on the board who have had successful pregnancies. For some, the UC gets better during the pregnancy, while others who have been in remission flare. Like everything with this DD, it's very individual.

The odds are low because this is not an "inherited" disease as such. A predisposition to it is believed to be genetic and sometimes inherited, but it also requires a "trigger" to activate the disease. No one is sure what all the triggers are at this point. Just because someone has the genetic predisposition doesn't mean they will ever actually develop UC.

As for medications, both Mesalamine (oral or rectal) and Prednisone have been used for decades and are accepted as not harmful to mother or baby. Immunosuppressants and biologicals have some risks which have to be weighed agains the risks of a severe flare while pregnant. Generally only a severe flare which produces dehydration, anemia and/or malnutrition would threaten the continuation of the pregnancy.

Only you can decide what level of risk is acceptable to you.


Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/15/2008 10:58 AM (GMT -6)   
here are my two cents, everyone has something, if we all decided to not have children, b/c of a disease then there would not be that many children.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/15/2008 11:27 AM (GMT -6)   
True; it's known that every one of us carries a certain number of defective genes. Some of these need to meet up with a defective gene from the other parent to cause problems; others need to be in certain combinations of genetic errors in your own body; others only show up as a disease if they are in a certain percentage of you cells; others need an environmental trigger to turn on or off.

In this case, we know what one of our potential "bad" genes is, and that it isn't lethal. Also consider that ten or even 5 years from now there could be a lot of new treatments available and some day there will be a cure - hopefully for your children, if they need it.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/15/2008 11:31 AM (GMT -6)   
I remember my GI of the George Washingtin University medical faculty told me that patients often went into remission when pregnant, and one of them tried to stay pregnant as much as possible and had many, many kids!!
My new docor said it would classified as a high-risk pregnancy.
I didn't have kids, but that's not why.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF prednisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
Sept: Mild case of thrush in throat, prescribed antifungal mouthwash.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/15/2008 11:34 AM (GMT -6)   
Researchers in Canada have estimated that if one parent has an IBD (either CD or UC) there is a 10- to 15-fold increased risk that their offspring will also develop an IBD...this is according to Dr. Kevin Rioux IBD felllow research at the university of Alberta.

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


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 9/15/2008 2:12 PM (GMT -6)   
I had my kids before they even knew that there may be a genetic link. So what is done is done. All I can do now is keep an eye on them and if one of them should get UC then at least they have someone they know who can sympathize and understand. I fear mainly for my daughter. She is so much like me that it's scary - both physically and personality wise! :) She has already have had a history of gut related maladies that if either my two kids were to get it, I would think she would be. IBD runs heavily in my family unfortunately.

When I was pregnant with my daughter, I was in a very healthy remission until about 6 months after I had her. Then I started to flare again and at the time I was caring for a friends infant as well. So I had two babies to care for while flaring - not fun but it was doable.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 9/15/2008 2:19 PM (GMT -6)   
I believe that it is not recommended to get pregnant while in a flare, it can have a higher risk of miscarriage. I was in remission when I had both my kids (the entire pregnancy) they are 23 and 20 and so far, no problems. I will of course keep my fingers crossed that they don't get it.
*******Donna*******
 
South of Boston, Ma
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/15/2008 11:01 PM (GMT -6)   
Just a thought...Why take a chance with a child's health if you don't have to? I know that when I have been in a very bad flair I wish I could flip a switch and my life would be over because the pain gets so bad and if I were given a choice not to be born in the first place I would have chosen that as well when in the midst of a very bad flair. I know this sounds very harsh but it's the way I feel when I get really sick with UC : ( and I wouldn't wish it on any living thing human or not.


Moderate Pancolitis
Dx'd 05/2007
4 Lialda per day
Trying Canasa 2 per day a.m./p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 9/15/2008 10:04:03 PM (GMT-6)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 9/16/2008 9:48 AM (GMT -6)   
My dad was diagnosed with UC when he was 38, had his colon removed, but had a reconnect. I was diagnosed with UC when I was 25. My brother is safe so far. I do worry about passing this disease on, but my goal right now is to test them to see if they have a possible gene to get the disease. I want to catch it as fast as possible. I was symptomatic since I was in 5th grade, I think that was around '93, so I just don't want my kids to go through what I went through.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007


pixydust13
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/16/2008 12:45 PM (GMT -6)   
i was watching this show last night about the human gene and they started doing experiments in Iceland, they can actually tell you if you have a specific gene that can trigger a disease. well they can't tell you, "yes you will get this" but they give you a probability of you getting it later in life. it feels like ive been sleeping for 20 years and suddenly bam all these new accomplishments in science. this stuff is so cool to me but then they started talking about being able to do this same process on an unborn baby and it freaked me out, what if you could predict your childs health before they were finished "cooking" lol imagine how that would affect the human population...but anyway i heard the same thing that you shouldn't try to get pregnant while your sick cuz it ups the odds of miscarriage but i guess you gotta accept life and what it throws at you. but just imaging the kind of grief and pain caused by a miscarriage it makes me scared to even try, im not gonna have kids for about another 5 years though, personally 20 is too young, i want having kids to be fun, not almost impossible to deal with you know?
Kymie
Diagnosed June 2004
2.4 Lialda, 40mg Protonics, Flinstones vitamins(yummy),
Rhinocort nasal spray, albuterol, and Advair

Life is too short to wake up in the morning with regrets. So love the people who treat you right, and forget about the ones who don't and believe that everything happens for a reason. If you get a chance take it, if it changes your life let it. Nobody said it was going to be easy they just promised it would be worth it.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/16/2008 4:40 PM (GMT -6)   
I was diagnosed at age 52, so both my daughters were born way before my diagnosis.  My paternal grandmother died from cancer of the rectum back in 1952.  At that time, my mother explained that nana had hemorrhoids that went untreated.  I find that hard to believe, but could be so.  I think nana must have had IBD.  Dad had diverticulitis.  Unfortunate for me I took after that side of the family.  Neither of my daughters exhibit symptoms of IBD, however, they do have IBS.  I had IBS as a youngster, so hope they don't get worse.

lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 9/16/2008 10:20 PM (GMT -6)   
I have colitis and my daughter has crohn's. To the best of my knowledge, no one else in my family has either - until a few months ago my cousin was diagnosed with UC. I was in my 20's and my daughter just turned 15 when diagnosed. I have 3 younger children who so far don't show any signs. I'm sorry for your struggle and hope you go with your heart. Best wishes!
Dx w/UC in 2001 - controlled by diet.
Mother to 15 yr old daughter dx w/CD 9/07-  she had surgery for abcesses 11/07.  She is taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, prednisone 10mg-x6, 6 mp 50mg-x3, Flagyl 250mg-x3


kaykay29
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 9/16/2008 10:37 PM (GMT -6)   
I have UC & my daughter was dx at age 18 with "indeterminate" IBD. (Pathologically, they could not decide if it was Crohn's or UC. Per her Dr, this is the case approx. 5-10% of the time. Symptom-wise though, they feel like her disease "behaved" more like UC.) She has had the j-pouch procedure. My case is more chronic in nature, while her's was very acute - - so much so that she had her first surgery to remove part of the colon just a few months after her initial diagnosis due to lack of response to prednisone IV, remicade, etc., etc.. We have had many "heart to heart" talks about our situations and neither of us has ever wished we weren't born because of UC. I think we both have a very strong will to live. I have to say though, that I cannot imagine how a younger child (less than teens) would cope with such a disease but maybe they do better than I can imagine. Everyone always says kids are so resiliant.
Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/16/2008 10:38 PM (GMT -6)   
Look at todays medical statistics, look at these forums...Ulcerative colitis/Crohn's/IBS is/are one of the most dominant diseases out there. You say 5-10% of possibly passing to your kids...sorry but i think that is absolute bull and doesnt have the medical studies to back it up. What i do think though is our kids have a higher percent than 5-10 in developing one of the above diseases without any influence from the birth mother given the average persons daily stress, horrible diet, improper medical care, and over use of prescription drugs and anitbiotics.

I say make the babies! And educate them on proper diet and health care. Our country lacks discipline in that area!
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
1000mg sup asacol                                      50 Billion CFU's acidopholis daily
2400mg oral asacol                                      Digestive enzymes before each meal
35mg prednisone tapering                             5grams of glutamine
75mg azathioprine                                       folic acid & calcuim with V-D
20mg Nexum                                               Whey protien  
 
Diet:Little/no sugars, fats, carbs, caffine. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood!

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