Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Getting pregnant

My fiancé & I want to start a family. I stopped taking the pill around 3 months ago & have now spoken to my doctors about what's involved. I have AS & crohns & although everyone assures me there shouldn't be too many problems I'm still worried. I have stopped quite a few of my tablets & as a result am not feeling good. I don't mind in the slightest, it's worth it but I'm concerned about the ones I'm still on. I'm taking 500mg of naprosyn (anti-inflams) have had my remicade & been told I could up until the end of my first trimester but I'm wanting to hear about what the other womens experiences of getting pregnant were like.
Did you have any trouble concieving?
What medications were u allowed?
Were there any problems from your AS, concieving or during the pregnancy?
Im sorry to overload everyone with questions, I just really trust this forum & am hoping hearing peoples experiences will help ease my mind.
Thank you all!!!

Hello Lean,

Can not help you with perosnal experience (obviously)... but in my 8 years here, remember many ladies with similar concerns. You can search prior posts on subject if you wish.

Some ladies I remember becoming pregnant while here at Kickas off the top of my head.... Bridge (Barngoddess), Sarahmd, Hana, Buggy (Ladybuggy).

Tim

My rheumy told me not to bother having another child.
Said, control your pain with the meds, or be in pain and have a baby. Nice hey. I just ignored him, and went ahead, with my Gp's blessing....

Anyway, I came off everything.
Got pregnant 1st go lol.
Suffered with back pain from about 7 months on, even though my bump was tiny. I had weekly physio from the gynae clinic people, and wore a supportive belt.

I had SPD too, but I coped.

Childbirth was naturally quite hard on my lumbar!! I used a TENS unit and 25ml of pethadine for the labour. Standing up works wonders.

As soon as I got home some 12 hours later, I had a massive flare. Everything from the waist down was stiff in agony.
Midwives couldnt really help, I just rode it out, while going back on meds.

Hi Leah
I wasn't diagnosed until after my 2 boys were born.
The immune system does change during pregnancy. My advice to you would be to have the swine flu shot NOW. Pregnant women are at a higher risk of complications from H1N1 and you dont want to be adding new medications to your body once you are pregnant.
I ate a heck of a lot of starch when I was pregnant b/c I was starving (4 weetbix and 4 slices of toast just for breakfast)and I may have overloaded my gut, causing bad flares in the last month of each prgnancy. I dont know for sure, maybe my chubby boys were just too heavy for my poor lower back. Either way, I know a great obstetric physio if needed (are you are in Melb ?)
Good luck and feel free to PM with any other questions.
Felicity

Hi Leah

I wasn’t diagnosed with AS when I became pregnant with my first child, although I had been attending my doctor for over ten years with a ‘bad back.’ He couldn’t tell me what was wrong, but he could tell me that I probably wouldn’t carry to term because of my back complaint (this was 23 years ago, when AS was in the dark ages and women couldn’t possibly have it.) Needless to say, that didn’t make a very happy bunny. ghrrr

At that time the only medication I was taking was pain killers (I firmly believed that if a doctor couldn’t tell me what was wrong with me, then he had no business prescribing any other kind of drug for me.)

The second I found out I was expecting, I stopped my tabs. I was nervous, scared, but, you know what...for the whole nine months I had the best time ever – health wise. I was told later than this is quite normal, something to do with the hormones produced in pregnancy and the muscles relaxing.

My second pregnancy, ten years later, was a different ball game. Again, I hadn’t been diagnosed, but I was on a lot more medication. This baby was planned, so I happily stopped my meds. Again, pregnancy ‘helped’ my symptoms and I sailed (OK, there were choppy waters, but nothing major) through the nine months. The only problem I had, if you could call it that, was waiting for the labour pains to become bad enough so I’d know when it was time to go to the hospital.

They never did.

Only for the fact that it was New Years Day, and my brother, who was taking me to the hospital, (at this point hubby didn’t drive) was dining at my parent’s house and wanted to get back in time for the meal, I might never have made it.

You see, I kept waiting for the pain to become unbearable, but AS pains are worse, much worse (well, except for the last bit. Lol)

My brother arrived home to be told that he had another nephew. (15 mins from the hospital door, till I had my baby in my arms. Whooohooo - just call me Wonder Woman! lol)

After, Well, like Amber, it wasn’t good, the AS kicked in, BIG TIME! But that was good too. The doctor who performed my 6 week check-up saw how bad I was and sent me for tests, and that’s when I was finally diagnosed.

I guess what I’m trying to say, Leah, is you can plan, and worry, and procrastinate until the cows come home, but you have to trust your doctors, they know what medication you can and can’t have while your baby is growing inside you.

You and your fiancé have already made the decision – don’t be scared.

If you can handle AS, you can handle anything.

Good luck, and let us know when we should break out the wine. ;-)
Hugs

Disclaimer before I post. I don't wish to scare you as everything may be completely fine but I thought I would be honest.

I was not diagnosed with AS when I had my last child. However I had the same back pain and other problems for at least 5 yrs prior to having her. I was on Tramadol 200mg twices daily and celebrex (cant remember the dose) When I fell pregnant the doctor took me off both meds and put me on Panadine Forte 8 tablets a day then 12 tablets a day towards the end of the pregnancy.

I was in terrible pain and had SPD. I had to use a huge ugly old walking frame from the hospital, then as I got bigger I was unable to get up at all some days. Yes this meant I would soil myself on occasions as I just couldnt physicaly get up.
It didnt help that the older kids were at school and hubby at work so I was there on my own during the day.

I had to be hospitalised a number of times because of the pain and lack of being able to take care of myself. I cant remember what meds they put me on in hospital through the IV but they made me very groggy.
I had my older 2 kids naturaly but was told I had to choose an epidural or C-section for the birth as the pain caused would be too stressful and may cause stress to the baby also.

I chose to have the epidural and was induced 2 weeks early as the pain was just too unbearable. Took over an hour to get the epidural in as they had to go 3 or 4 disc spaces higher then they like to go due to lack of disc space. My discs have degenerated too much. The last space they tried they managed to get it in and that was lucky because they said it was the last chance and if they went any higher it would affect my heart and breathing. Anyway it only worked to numb half my body but fortunately it was the half that was in the most pain.

Birth was great. Bub was a little on the small side for my babies and they are not sure if that was due to meds I took or not. But she was healthy and the meds had no other negative side effects.

It took some time for the SPD to settle after the birth and I had a little setback with having to have my apendix out 3 weeks after the birth. Due to the apendix being removed I was on strong antibiotics so I was no longer able to breast feed so the doctors put me back on the original meds prior to pregnancy.

So that is my experience with it all. A lot of pain and at times I felt ready to give up but it was worth every ounch of pain. And if I were to go back in time I would definately do it all again even knowing what the pain would be like.


I wish you all the very best and I hope I haven't scared you too much.

All the best
Trish
xxx

Hi Leah;

My daughter is a year and a half now, and honestly, as far as AS is concerned, my pregnancy wasn't very hard at all. I DID stay on my LDN the whole time, but I stopped a sleeping pill, and cut my cymbalta and neurontin way down. I even went to the FAIR, and PUSHED my husband in a wheelchair, 7 months pregnant, and could still sorta walk at the end of the day! I did take a ton of Tylenol (and my daughter is healthy, smart, and beautiful, as I keep pointing out to my healthy friends who call me panicked asking how much Tylenol they can take for a headache while they're pregnant . . . I tell them they couldn't possibly touch the amount of Tylenol I took, and Bailey's awesome lol.)

As far as conceiving, my advice is: pain meds and booze. Don't go off all your meds just yet and feel like crap, you need to feel up to some rodeo in order to get there! We got pregnant only one month after quitting the pill, and I had horrendous morning sickness and stuff, but that had nothing to do with AS. I, too, had a tiny tummy, and I had some back pain, but it wasn't bad (nothing like a flare) and some interesting SI pains when my pelvis started "opening." One side is mostly fused, so it was kinda interesting lol. I wore a nifty support thingy they sell in the JCPenney catalog, it was white lace and went all the way up over my tummy and had a thick elastic band under my tummy and across my back.

Labor and delivery went pretty well, I pushed for an hour and a half because they had a hard time getting her through my pelvis because of the AS, and I couldn't hold my own legs up because my hips were on fire, so they stationed my mom under one leg and my stepmom under the other, and that worked. and guess what? I DIDN'T TAKE ANY PAIN MEDS! Until after she was born lol. Then I took Percs for about a week, because I did flare (I mean, you squeeze something bigger than a 2-litre bottle out through an AS pelvis, that pelvis is gonna hurt). But honestly, at that point, you don't really notice, because being a mommy feels so good. Actually, I thought that was normal until all my friends started having babies and they DIDN'T need Percoset. My best friend had a 51-hr labor and then she took Ibuprofen and said that covered the pain just fine.

I don't have Crohns, but I do have a bunch of other autoimmune stuff, and my biggest problem has actually been the infection I got AFTER childbirth . . . seems to have become a chronic pelvic inflammation thing. It royally sucks. I got a uterine infection (PID) from childbirth, and (owing to a really negligent nurse prac and being isolated in the country) the infection wasn't treated for four months, SO it's not like this could happen to just anybody. I mean, I kinda asked for a chronic issue, going that long. But I only had a low fever, and she blamed the fever on fibromyalgia and the pain on my endometriosis. So now I have chronic pelvic pain that "flares" like AS (but not on the same schedule) and I would advise you to watch out for infections so they don't do that to you.
and breastfeeding ROCKS. It is awesome, it is wonderful, it is WORTH IT!. My rheumy actually asked me how long my mom nursed me (3 weeks) and told me that the longer I nursed Bailey, the lower her chances of coming down with AS or other autoimmune diseases. I nursed for 11 months! He said even if you have all the genetic predisposition for autoimmune issues, you have a much lower chance of coming down with them if you're nursed. So please nurse your baby if you can!

hugs and good luck and don't go off all your meds yet, don't make yourself miserable before you even conceive!
Bridget

Hi Leah -

Don't have any personal experience, but do know from being a doc is that prednisilone / prednisone in small doses (up to 15 mg) is safe in pregnancy. It's one of the oldest drugs, therefore there is lots of data on it in preg/breastfeeding, unlike a lot of the new ones out there (like anti-TNFs). The new ones may very well turn out to be absolutely safe, but there just isn't enough info yet. Just something to keep in mind if you're struggling with pain / flares / etc and don't know where else to turn.

The other thing to keep in mind is that good nutrition is essential in pregnancy - and for those of us with Crohn's that means a grumbling flare could have just as negative effect on fetal development as one of the more toxic drugs. Please chat with your gastro about any concerns about GI symptoms, and address if need be.

I know that many people here get relief from adaptations to their diet (i'm no exception, i follow a gluten free diet), but a part of KA's medical disclaimer on it's front page addresses some dietary restrictions and their ill-effects in pregnancy "In pregnancy, a low carbohydrate diet is potentially harmful to fetal development. Everyone needs a diet that meets their nutritional needs. If in doubt consult a qualified dietician." Just thought I'd bring it to your attention.

Very best of luck to you and yours.
Jeanna

Thank you all so much for the priceless information. I'll keep doing my research and in the mean time just try to stay relaxed & look after my body as well as possible. I will keep you all updated with our progress.
Thank you again,
Leah

Hi all, I just thought I'd give this post an update & let you know I am 5 weeks pregnant. Still early days but so far so good. No morning sickness yet, just a little nausea at bedtime. My body is holding up ok to no meds. I'm finding the nights & mornings hard but getting through the day fine. I'll keep you updated & thanks again for the previous posts!
Lots of love