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Wanting to get pregnant question....

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Posted 7/9/2013 8:22 PM (GMT 0)
Hi all,
New to the forum... new to UC really. I was diagnosed when my son was 10 months old (he just celebrated his first birthday!). My husband and I originally planned to start trying for baby #2 after his first birthday, but UC has put a wrench in our plans. Technically, I have Ulcerative Proctitis (possible Crohn's... had some ulcers at my small intestine but unable to confirm if it's related to Crohn's or just random. Barium Xray series didn't show much - the doc couldn't see well - and I'm waiting for results from my Prometheus test). I've been on Canasa suppositories and they helped right away. At first I was on Prednisone taper and now that that's done my doc put me on Apriso. I haven't been taking it regularly b/c I believe it's giving me headaches, and the canasa seems to work fine on it's own.

I guess my real question is, when do you try to wean yourself from the medicine to see if the flare is over? I have done so well on the canasa I'm afraid to stop taking it, but I would like to be med-free when I get pregnant... and I'd really like to do that sooner rather than later. Any advice on Pregnancy and UC or how to tell when a flare is over? I know I'm likely to have a rebound issue post pregnancy, but my doc says if I responded to meds this time I likely will next time (hope so!).

Thanks for reading!
Posted 7/9/2013 8:52 PM (GMT 0)
Unfortunately, you doc is wrong. It is a very huge mistake to go med free once you attain remission. Sooner or later you will have another flare and it will probably be worse than it was before and more than likely it will NOT respond to the meds as easily as it did the first time, causing you to have to take harsher and harsher meds than you did before. I have seen tons of people come here after going into remission, eliminating all meds, and thinking that if they flare again all they have to do is do what they did the first time and they find out that that just isn't the case. I think you should continue to take meds, have another child, and make sure you take meds to some degree religiously for the rest of your life in order to keep in a solid remission. If you don't you will be looking at prednisone, Imuran, 6mp, remicade, or humira in your future and raising kids with a worse flare will be pure hell and very depressing. Don't do that to yourself.
Posted 7/9/2013 9:22 PM (GMT 0)
I agree with garylouisville. Don't stop your Canasa. And you need to go back to your GI and talk about oral meds. The presence of ulcers in your small intestine is an issue that needs to be addressed. Apriso is not going to treat those ulcers, but Pentasa might.

I was in exactly your shoes 13 years ago. My first child was born at the end of 1999, and rectal bleeding started pretty much as soon as the lochia ended. I didn't see anyone about it until May of 2000, and didn't get scoped until May of 2001 (and that was only a flex sig). Then I conceived my 2nd child and struggled with treating my proctitis through that pregnancy and beyond, without really understanding my disease or the treatments. Finally got a full scope and a really good assessment in October of 2005. Long road for me...don't follow my example.

Keep taking your Canasa. Talk to your GI about oral meds. And go ahead and get pg!
Posted 7/9/2013 9:54 PM (GMT 0)
If you are thinking of having another child then I'd suggest making an appointment with an GI who specializes in IBDs and Pregnancy.

Being a guy things go in one ear and out the other but I remember my GI saying that the safest thing for a fetus is that the Mother's IBD is under control or in remission. It came up in a conversation when I was about to start 6-MP and was concerned about the side-effects, he said that his practice did a study with about 50 women who took 6-MP while pregnant and all the babies were healthy.
Posted 7/9/2013 11:08 PM (GMT 0)
Hi there,

I would suggest doing some research on your own. The data that is currently out there regarding UC/IBD and pregnancy strongly supports staying on medication throughout the pregnancy. Studies have shown that untreated UC/IBD during pregnancy can lead to multiple complications, including miscarriage and stillbirth.

I have two young children (3 and 1), but if I were to try for a 3rd I wouldn't even consider going off my meds. It would be a no-brainer. Keep myself healthy--keep baby healthy.

Even on meds, I flared during my son's pregnancy and had to get a flex-sig at 22 weeks pregnant. Not fun.

I have a friend who has CD. She wanted to have a med-free pregnancy, but flared during week 14 or so. Her symptoms were so bad that she was hospitalized several times, and eventually contracted c-diff. Her son was born early and underweight (but is now a healthy, active 3-year-old). The whole experience was so devastating, tho, that she is convinced she can never carry another child because of her disease, even with meds.

You might want to visit some pregnancy/UC boards (like this one from babycenter.com).

http://community.babycenter.com/groups/a19275/crohns_diseaseulcerative_colitis_mommies

Those moms have lived it all--conceiving and carrying a baby to term with IBD. You'll get a lot of insight!

Good luck and take care!

Lisa
Posted 7/10/2013 12:48 PM (GMT 0)
Do NOT stop taking your Canasa!!!! And, I highly recommend you take an oral mesalamine (Apriso, Asacol HD, Lialda, etc.), whether you're pregnant or not. I had a daughter 4 months ago and was on Apriso and mesalamine enemas the entire time -- there are many, many studies out there showing the safety of mesalamine-based drugs during pregnancy and breastfeeding. It's MUCH worse to flare than it is to be on these meds.
Posted 7/10/2013 12:57 PM (GMT 0)
Thank you all so much for your input. I have read that the meds are okay during pregnancy. It all just scares me. My flare wasn't fun but it wasn't nearly as bad as a lot of people's experiences, so it's been tough for me to judge what to do. I appreciate all of your feedback as I search for another GI (mine hasn't been all that impressive from day one). Hopefully the next one will have some better advice.
Posted 7/10/2013 1:54 PM (GMT 0)
yeah i would not go off your meds if i where you. i had a baby girl last june and i took Mezavant during my pregnacy and i think it was a a lower dose. i had a great pregnancy with no symptoms whatsoever but as soon as i gave birth i had to biggest flare up ever. they had to put me on imuran and pred to try to get me to stay in remission but even that didnt work and i started flaring again and this time they had to put me on remmicade. i think my hormone changes really affected my UC. even my initial flair was not as bad as the last one.
Posted 7/10/2013 1:59 PM (GMT 0)
I was a LOT more scared about flaring during pregnancy. There are no bad reported outcomes from using mesalamine during pregnancy, but there are a lot of possible bad outcomes (including miscarriage) from flaring during pregnancy. Sorry to be blunt, but IMO, it's an easy choice.
Posted 7/11/2013 2:31 AM (GMT 0)
Thanks fruitgirl. I appreciate the bluntness! I just want to do the best thing for a future baby. My last pregnancy I refused to take ANY meds (I took ONE tylenol then spent 3 hours googling tylenol and birth defects lol). Made it to 32 weeks when I was put in the hospital for preterm labor and had every drug known to man shoved in my body to make it stop. So much for a drug free pregnancy! My little man turned out fine but I'm just NOT a med fan. Obviously it seems like this is one scenario where the meds are the way to go. It's nice to find a place to go where real people are discussing their experiences rather than just blindly trusting a doctor that's never gone through it.
Posted 7/11/2013 2:37 AM (GMT 0)
I don't mean to be reductive but honestly I think that people who say things like "I'm just not a med fan" are people who haven't had a chronic illness. UC is lifelong and incurable (as far as we know, and I wouldn't hold my breath) and the best thing for you and your family is to be as healthy as possible as consistently as possible. Maintenance meds can help you do that. Each successive flare is usually worse or harder to manage than the previous one, so it's very much in your best interest to STAY in remission rather than treat a flare up.
Posted 7/11/2013 2:09 PM (GMT 0)
That's interesting because I'd describe myself as "not a med fan" and I've had this chronic illness more than half my life. I think those with chronic illnesses might be more likely to not like meds since they've taken so many of them and really understand the limitations and potential side effects. I often feel like a med helps my symptoms but not necessarily the underlying problem and I'd rather try to address that underlying issue than simply take a pill to mask the problem.

I'm on Remicade now and it worked great to end a terrible flare. I went from the hospital with D 30+ times a day with tons of blood to completely normal practically overnight. And I do appreciate that Remicade did that for me and got me on the road to healing. BUT, I've still felt pretty crappy for the last 8 months...fatigue, skin issues, eye issues and other stuff. At first I tried to blame tapering off Prednisone and the trauma my body had been through, but after a while I just had to admit to myself that something is still off. Flaring in the last two weeks before my last infusion confirmed it to me...my body is still trying to flare, but the Remicade is keeping the symptoms at bay.

That's why I finally decided to give SCD a real try about a month ago. And I've honestly been amazed at what a difference it has made. The first couple weeks were slow, but in the last week (after starting to flare again in the first week of the diet) my bms have gone completely back to normal and the bleeding has stopped. My skin has cleared up. My eyes are better. I am getting my energy. I feel better than I have in over a year...like I am finally coming out of a fog. I'm not trying to push the diet on anyone, but I do feel like it is finally addressing something that was making my body attack itself and that the Remicade did not help.

All that said, I've had times in my life when I couldn't have been more thankful for a medication. I had C Diff five years ago (it took a month to diagnose since we thought I was just flaring) and wanted to kiss the makers of Vancomycin when it finally ended the nightmare.
Posted 7/11/2013 6:34 PM (GMT 0)
Lizzie, that's exactly how I feel. Obviously, I DO have a chronic illness. I'm well aware. I know meds are the standard for life... but I would truly like to find the cause and fix it (as I'm sure we all would). When I say I'm not a med fan, it doesn't mean I hate medication. I know plenty of people who get a sneeze or cough and run to the store for Nyquil or what have you. My point is, I'd rather fight it out as long as possible than take an advil for a headache. I just don't like shoving drugs into my body and making my liver and kidneys work harder because I'm slightly uncomfortable. Yes, I understand this situation is different. Hence why I'm ON MEDICATION.
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