Freaked out by the long-term

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New Member

Date Joined Sep 2008
Total Posts : 9
   Posted 11/9/2008 9:03 PM (GMT -6)   
I'm a long-time lurker but never feel the need to post. However, I'm having a bit of a freak out and my husband is out of please?

Does anyone ever second-guess having children? I've heard that one never feels "ready," but seriously...I'm having my second infusion of Remicade this week and have spent the last hour reading outcome studies. Obviously it doesn't have any very long-term studies, but patients seem to have higher rates of some cancers....combined with the fact that we have a higher rate of colon cancer and generally shorter-lifespans, according to the research...I'm having a moment.

I'm 27 and I was married 2 years ago. I'm scared to get pregnant while on the Remi even though I know plenty of women have had babies while on the drug. I couldn't live with the guilt if the Remi somehow messed up the baby's development...But the clock is ticking and I feel like I'm never going to be able to get off it...and even if I do, what if I have kids then spend my life in the restroom and then get cancer? Is it better just to live my life with pets? They're definitely less stress!

How did you decide to have kids? How old were you? Did it turn out okay? (I know life's not perfect, but is it mostly okay? Do your kids have UC?)

Sorry. I know this is a messy post. As I said, I'm having a bit of a moment! cry

Veteran Member

Date Joined Aug 2008
Total Posts : 903
   Posted 11/9/2008 10:41 PM (GMT -6)   
I kinda have similar questions as you. I worry about when I have kids about them developing UC, but, I've come to the conclusion that I REALLY want children of my own. I sometimes wonder weather we should adopt or not, but I always go back to the desire of having my own. I've studied up on my medicine and found out that the humira is safe to take while pregnant, but my imuran isn't. So, I'm searching for other options. I know for a fact that I'm going to be a bit paranoid with my kids since UC is hereditary, but it's life, you just have to roll with it. I'd suggest to study up on the Remicade and see how safe it is while being pregnant.

Good luck with your decision.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)

New Member

Date Joined Feb 2007
Total Posts : 13
   Posted 11/9/2008 11:01 PM (GMT -6)   
I had a beautiful healthy baby boy back in May and I took imuran (aza) throughout the whole pregnancy. I was told it was better for me to be healthy than to have a flare when pregnant.

I would love to know more about being pregnant on remicade as well which is my next step if I can't get the bleeding to stop. From what I can gather on my own, it is no more dangerous than a regular pregnancy. But that might have been an old study.

Good luck on finding info! I will have to keep a watch on this thread :o)
No day but today... Defy gravity... Measure in love...
25 year old female from Ontario, Canada.
*Told I have UC in Jan '07. Found out it was of the whole colon while in the hospital being treated for a flare (March 6/07 to March 16/07)
*Hospitalized again May/June '08 for 9 days after c-section for infection of incision and small flare
*Taking Azathioprine (Imuran)... 150mg (3 50mg pills) at bedtime
*Liquid multi-vitamin mineral shot in the morning
Mommy to Lliam (born May 16th 2008)

Charlotte Gilman
Regular Member

Date Joined May 2008
Total Posts : 100
   Posted 11/9/2008 11:31 PM (GMT -6)   
There's a lot of good anecdotal evidence that Imuran is safe during pregnancy; there's not much one way or the other on Humira. I had surgery and am on no meds, but I am planning to adopt. I cannot justify the possibility of knowingly inflicting this on a child, and that overrides my interest in having children to whom I'm genetically related.

Elite Member

Date Joined May 2003
Total Posts : 31006
   Posted 11/10/2008 2:46 AM (GMT -6)   
I have no children based on a decision I/we made once I was diagnosed with UC at age 34..that and all the other crappola that I've inherited...there will be none to continue the poor stock. My husband has a few things going on in his family as well. I'm also relieved my brother has no children. My half-sister who also has inherited lots of goodies, has a son who is now in remission from Hodgkin's. But it seems he doesn't have any of his mom's maladies..yet.

Should you get pregnant on Remicade??? NO! I don't think you should even consider it. I'm sure you'll do the research, It's really all risk anyway. Stats mean nothing when it's your life and the one that possibly doen't fit into the positive column.

You're young still.....put it all on hold until you can think rationally once you know more about the state/future of your UC. (to be asked about in another thread because I don't know how it is and what other meds you've tried, etc)

Regarding cancer...we all have the risk, no matter if we take meds or not. Some cancers we have a predisposition...having some diseaes or taking some meds can increase that risk.

Some people will not let anything stop their having kids, and when there's a possiblilty of not having them or one shouldn't...the need is stronger to want.

What does your husband want and what are is fears,etc? If he's willing to not have kids based on how you feel, meds you're on and understanding..then the ball's in your court.

I've never felt that not having kids has ruined my life. Actually, the relief is immense.
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 11/10/2008 8:27 AM (GMT -6)   
Hi, welcome to Healingwell - or should I say that we are glad you're done lurking? :)

I had both of my kids before they knew that there was a genetic link to this disease. They had suspicions of it when I had my daughter but they didn't know for sure. Would I change the outcome if I could go back in time? Never. I love my children to death and it is not written in stone that my kids will get this. However, of my 2 kids I believe that my daughter may end up getting it. She is 13 and already has a history of bowel problems. Would I feel guilty? No because I didn't know at the time and if she gets it, there is nothing I can do about it now. The best I can do is be there for her and help her. But having children is a personal choice and it's best to know of all the complications that may arise - the pros and cons and proceed from there. Research all your medication safety precautions. If medicine A causes birth defects then NO do not have children until you can get on a safer medication B. Good luck on your decision.
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/C7~3 epidural injections-worked great!, Osteoarthritis
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Regular Member

Date Joined May 2008
Total Posts : 388
   Posted 11/10/2008 10:25 AM (GMT -6)   
Making the decision to have kids is hard even without UC so I can only imagine how difficult it is to factor in all unknowns of drugs and illness into your decision making process!
I didn't know I had colitis when I had my children.  The only risk factor I had was "advanced maternal age".  During the pregnancies I did everything by the book, I had nonmedicated labors, I nursed both babies for a year and did everything possible to ensure their good health.  Both my kids have health issues that neither my husband or I have.  My youngest who is eight years old takes more medication than I do.  Everyone has limited control over the ulitimate health of their children which is a fact that, if you decide to have kids, will probably keep you awake worrying on more than one occasion in your life.
I don't have a seriously severe case of colitis, but it bothers me in some way everyday and even when it was at its worst, I never had the thought that I wish I hadn't been born. 
UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh

Scrap Girl
Veteran Member

Date Joined Jan 2007
Total Posts : 653
   Posted 11/10/2008 11:22 AM (GMT -6)   

Well put madabs. I've been on Remicade over a year now and my husband and I are done having kids. Personally, I don't think that I would want to get pregnant while taking it. It would make me a little nervous. It's one thing taking the risk myself but another passing that risk on to someone else. It may be perfectly safe - we don't really know. You could always try going off it for pregnancy. The only problem is that it may or may not work when you go back on it. I was on prednisone throughout my last pregnancy. It wasn't fun but I made it through and now only have the pictures to remind me of life on steriods.

I came down with UC when I got pregnant with number three and then miscarried. We chose to have another baby - this time as soon as I started to flare my doctor put me on prednisone. My kids may or may not get UC - who knows? Nobody knows what tomorrow will bring. I have no idea how I got this DD. By I agree with Madabs when she said even on her worst days she is still glad to be alive. I'm guessing most of us are.



Diagnosed with UC in Feb. 2005
Colazal (9 a day)
Folic Acid

Regular Member

Date Joined Sep 2008
Total Posts : 152
   Posted 11/10/2008 12:21 PM (GMT -6)   
shorter lifespans? doesn't that depend on how severe the individual's uc is?
Proctosigmoiditis up to 25 cm
Colazal 3 caps 3 times a day
Hydrocortisone enemas AM and PM for next two weeks
Canasa suppository for lunch (for my butt)
Rowasa enemas nightly after hydrocort enema regimen is completed
Celexa 20mg daily
Fish oil, milk thistle, Ultimate Flora critical care probiotic, Alive multivitamin, lysine
Spinach and sunflower seed plan

Regular Member

Date Joined Apr 2008
Total Posts : 460
   Posted 11/10/2008 12:52 PM (GMT -6)   
I'm sorry that you're freaking out! I would sit down with your doctor and talk to them about having children. My GI has always talked to me about pregnancy before putting me on any medication that might be considered unsafe. Remicade is a class C drug so I wouldn't feel comfortable taking it while pregnant.

I understand your worry about passing UC onto your children. I worry about it with my daughter but I wasn't diagnosed until after I had her. I know it's considered genetic but no one in my family has UC so I'm not sure how big of worry it should be.

I decided not to have anymore children once I was diagnosed with UC. There have been days where I've been really sick and it was hard to take care of my child on those days. I just decided for me, that having one child was perfect for me and my husband. The only drugs that work for me are class C drugs and I decided that it was more important for me to be healthy than it was to try to have another child. I know it's not the same since you don't even have one child. I would seriously talk to your doctor about wanting a child and make a game plan on how to achieve it, safely for you and the baby.
Female, Age 37
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
Current Meds:
75mg 6-MP
Cortenema as needed
Ferrex Forte
Sacchromyces Boulardii 

Regular Member

Date Joined Dec 2007
Total Posts : 354
   Posted 11/10/2008 1:13 PM (GMT -6)   
Hello Molly - I am in a similar situation as you. I am on remicade and have decided that I want to have children. Both of my doctors said it was safe. I just talked to my GI about it and he said it is important that you only try when you are in remission and you have less fertility when you have an autoimmune problem. My husband wants to wait until we have all our debt(well mine from all my medical bills:( ) paid off. The doctor said most women start to have trouble getting pregnant after 34 ish. I'm just scared I'll never be in remission long enough to have a baby.
Jessica 27/F
Entorcort 9ml
Lialda 2.4GM
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)

Veteran Member

Date Joined Jul 2007
Total Posts : 2148
   Posted 11/10/2008 1:18 PM (GMT -6)   
I worried about that for a while and I have decided to go for it. I really want to be a Mom and if I can't do it naturally then my husband and I will adopt. My kidneys are close to remission and i've got some big decisions to make it the next year.

Every family tree has something and seems there is always someone who died of cancer, so if we all stopped having children b/c of that there would be no more babies.

I also think it's great for people who decide not to have children for whatever reason, they don't let people pressure them to have children just to have them.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
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. Close to remission since 9/08.
Prednisone 10mg 1xday, Lipitor 10mg 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!

Veteran Member

Date Joined Jan 2007
Total Posts : 1015
   Posted 11/10/2008 6:07 PM (GMT -6)   
I'm 30, been on remicade since March and we are going to start trying for kids next summer.

Remicade is a class B drug for pregnant women. It is safer to be pregnant on than AZA. You can look on the FDA website for more info on the class system.

I have been researching this for a few years now knowing remicade would be in my future. From what i have found remicade does not cross the placenta but they don't have enough information on breastfeeding and remicade. The studies go back over ten years. Also remeber that remicade has been used for other diseases since before it was OK'd for chron's ten years ago.

While it is always best to not be on any drugs while pregnant, it is better for the baby if the mom is healthy.

As for genetics. My kids have a greater chance of having horrible eyesight, high blood pressure, high cholesteral, risk for breast cancer...ect....Part of what being a parent means to me is helping your kids through the tough times. If my mom had realized that I may end up with UC would I still want to be born? YES! UC sucks but I'm glad to be here, alive, with UC than to never have the chance to live. My parents have always felt responsible for my UC but I know that it is no one's fault. I hope if my kids do end up with UC I can help them understand and get through life knowing I know how they feel.

It is a very personal decision. I talked to a lot of doctors, pregnant women on various drugs, family, friends, and of course, my husband.
Kelly, 30, suburbs of Chicago, IL

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion

Regular Member

Date Joined Jul 2008
Total Posts : 83
   Posted 11/10/2008 6:51 PM (GMT -6)   
As far as i can see it cancer risks may be high. But that depends on what kind of UC and how well it is controlled. Colon Cancer is high only because of the rapid growth of the colon's cell wall. It has nothing to do with the meds you are on. So the less ulcers the less chance of getting cancer or the later the cancer comes. Either way if you are worried about the drug effects why not go and adopt? Just something to think about.
19 years old, College Student ~WAHOO GO CATS=)
Diagnosed in 2004
Currently on:
Imuran 3pills/day
And other over the counter meds.

New Member

Date Joined Sep 2008
Total Posts : 9
   Posted 11/12/2008 12:09 PM (GMT -6)   
Thanks for the replies. Most of them helped a bunch. Got my second infusion in an portable DVD player is all charged up, ready to go!

Regular Member

Date Joined Apr 2008
Total Posts : 44
   Posted 11/16/2008 11:48 PM (GMT -6)   
Have there been any studies about whether UC is more likely to be passed from an affected father to the child than from an affected mother?  Or are the odds about the same?

dx UC Dec. 2001
currently in remission
Meds: asacol 6(400mg)/day
         entocort 3(3mg)/day
         canasa 1(1000mg)/day
         Culturelle 1/day

Veteran Member

Date Joined Apr 2007
Total Posts : 1366
   Posted 11/17/2008 8:55 AM (GMT -6)   
I used to worry about it. But then I decided that I want nothing more in life than to have children, preferably naturally so that I can go through the pregnancy process. Being adopted I wouldn't have a problem adopting a child of my own, but I have always wanted to experience pregnancy so I will try all routes there first.

But my self-questioning has gone from "Should I have kids" to "Should I have my colon removed before or after having kids?"
See, I worry more about missing out on my child's life because I'm sick or in the bathroom, and I worry that if I get pregnant I will flare and miscarry, or I'll never get into remission to be able to safely try, or I'll stay in remission during pregnancy and flare after. But then I worry about the possible infertility that comes along with abdominal surgery so it's really hard to decide when the surgery would be best. So, that's where I'm at right now. Luckily I have a few more years before I want kids so I hopefully have a little time to decide.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Sulfasalizine 3000mg/day, Azasan 100mg


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