Pregnancy and chronic illness

brzvice · March 2016

Any other Moms-to-be out there diagnosed with a chronic illness? I was diagnosed with Multiple Sclerosis 9 years ago and have been relatively symptom free. With this being my first pregnancy, I am wondering how other Moms might be feeling and dealing with your illness during pregnancy.

mrszoess · March 2016

I have lupus and crohns. they've both been in remission for over 5 years. I feel generally good just tired. not even any symptoms but tired and headaches! My good friend has ms and had TRIPLETS! she did really well w the pregnancy. I actually switched to her obgyn for that reason.

good luck, take time for yourself and take it easy!

UponAStar16 · March 2016

Yep I have type 1 diabetes and hypothyroidism so I have lots of labwork and appointments already, and am doing everything I can to monitor/manage medications (raging hormones and nausea/vomiting sure don't help). Does pregnancy induce illness-related complications, and/or do your illnesses make you higher risk for pregnancy complications? For me it's both. It's pretty tough having pre-existing stuff to worry about from the start. I don't know anyone personally in a similar situation so thanks for starting this thread!

mothernorth · March 2016

RA here, haven't had a flare since I was first pregnant with DS in Nov-Jan 2014. Horrid huge painful knots formed on nearly every joint, it was miserable, worst it had ever been, and I was SO afraid it would happen when he was born but thank goodness it didn't and hasn't since. I am thankful spring and summer are approaching, as my symptoms usually don't appear until winter. Fortunately my immune system didn't have any impact on my pregnancy, but I did find I caught a few summer colds while pregnant with DS. If it happens this time around, I'll just be glad it's only colds and not the knots!

mothernorth · March 2016

PS I had a chemistry teacher in high school (after graduation became a dear friend of mine) with MS and she ended up over the years having 3 beautiful healthy girls, and she said her symptoms stayed in remission throughout her pregnancies without complications

OrangeEv · March 2016

I've had Crohn's for 14 years now. Been in remission for 5 years UNTIL I got pregnant!
Now on steroids and getting referred to a high risk OB and a gastro that will handle pregnancy. Very grateful for my OB as I just met her for the first time on Tuesday and she went so out of her way to hook me up.

@AllyTheKid I know RA and Crohns share a lot of the same meds! Did you ever do Remicade or Humira? I'm hoping to get on Humira eventually.

mothernorth · March 2016

@OrangeEv I have never taken any meds for it, when I was pregnant with DS I finally thought about it since my symptoms were SO bad for a while, but by the time I finally made it to my app (it took 2 months to get me to the specialist) it was already back in remission. Rheumatologist and OB said hold off while pregnant unless it happened again, but no flare since so fingers crossed. I'm trying to avoid having to take anything unless it gets bad and I just must. My cousin and grandpa and mother have Crohn's, they didn't even consider taking meds until it was too late and they all had to have surgery on there intestines. If I have one more flare, I'll go talk to them about it again. I am only 26 and don't want to take a chance on ruining my joints so early in my life, I won't wait around like they did but I am hoping it'll stay at bay and manageable before I take that step.

OrangeEv · March 2016

@AllyTheKid I am not one to talk because I like to ignore my symptoms too, but meds can be a lifesaver! I don't know if there are surgical options for RA, but with Crohn's, even meds don't always stop the surgeries from needing done. I hope your family had good results with surgery! I had one at 21 and it put me med-free until now.

Anyway, I'm glad you're still in remission. I can't imagine how difficult living with flared RA would be. All I know about are digestive issues haha.

mothernorth · March 2016

@OrangeEv my cousin is only 40 and my mom is 56, and they've been doing great so far (obviously there is still the IBS to worry about, but better than the Crohn's flares I would imagine!) Grandpa has more trouble, but hey, he's a LOT older and waited WAAAAY too long to do anything, as men in my family tend to do.

I think with RA if it ever came down to surgery, it's game over. I don't want to be the 30y/o with joint replacements one day though, so hoping for a LONG comfy remission, but meds are my next stop need be!

GotRedOnYou · March 2016

I have Crohn's and arthritis, that we call psoriatic, but really blame on my Crohn's. Crohn's has been easier to control than my arthritis so far. I am high risk for both those and a couple other reasons, so I am seeing a high-risk OB and my gastro is keeping an extra close eye on me for my pregnancy. I saw my gastro today actually.

@OrangeEv I have been on Humira for a couple of years and I love it! I was on Remicade for awhile and had a lot of issues because my veins are crap, so I had a port put in (it flipped) so I had that taken out and was like screw this, and switched to Humira. Feel free to ask any questions about it. After my last flare I went from biweekly injections, which is standard, to weekly. That is helping my arthritis too.

I'm more nervous about post delivery. Both my OB and my gastro are concerned that I will flare after delivery.

FemShep · March 2016

I have Crohns (diagnosed 23 years ago). Before my first pregnancy, my gastro doc told me ~1/3 patients get better during pregnancy, 1/3 get worse, 1/3 see no change. My CD got much worse during my first pregnancy, and I was on prednisone for most of my first trimester. After I had DD1, the disease got much worse, I had a bad reaction to Remicade (which had been my go to drug) and I had a partial colectomy when she was 3. The surgery was amazing, and I was taking Humira for about 6 months after, but have been able to be drug free for the past 6 years. I felt great during my pregnancy with DD2, and my most recent colonoscopy this spring looked very good.

mommymaggieh · March 2016

I have Crohns and have had a rough few weeks. I've been in remission since 2008 with medications (diagnosed in 2000), but stopped taking two of them when I found out I was pregnant. I'm keeping in touch with my GI and OB, and they're actually working together to keep me and baby healthy. I'm trying to listen to my body, rest when I'm tired, drink plenty of water, and not eat anything that will upset the apple cart. This is also my first pregnancy so I don't have any experience to share, but it's nice to see others on this board with similar histories and experience.

@GotRedOnYou I'm worried about post delivery, too. Also, because my disease has historically been the most severe in the large intestine, my doctors have suggested that a vaginal delivery may not be the best way to go, so I'm freaked about the impacts of the delivery itself, too.

mothernorth · March 2016

Wow I didn't realize how many people struggle with CD!

FemShep · March 2016

@mommymaggieh I have a history of vaginal fistulas, and pushing could cause serious complications. I've had 2 c-sections, and honestly, they've been great. Super easy, and well worth avoiding potentially life-threatening problems.

OrangeEv · March 2016

@GotRedOnYou Both of my sisters (who have Crohns) are on Humira and do great on it! One of them goes weekly now too. I did Remicade already so hoping I get Humira some day. I don't want a second surgery yet..

mommymaggieh · March 2016

@FemShep Thank you for sharing - I'm glad it worked out well for you. Did you plan/schedule them, or did you go into labor naturally? I know c-sections are a common thing but my gut reaction is just no. I've been trying to figure out what bothers me about the thought so much, but haven't been able to pin point it. Maybe it's because it's different than what I've always imagined and I'll get more comfortable with the idea once it has time to settle.

Regarding the Humira/Remicaid discussion - I have been on both and neither were successful keeping me in remission. The Remicaid seemed to work for about 6 months, but then I ended up back in the hospital with a flare that my doctors weren't sure they would be able to get under control. The Humira never had a positive effect. I know they work well for a lot of people, but like anything response is specific to the individual.

FemShep · March 2016

mommymaggieh said:

@FemShep Thank you for sharing - I'm glad it worked out well for you. Did you plan/schedule them, or did you go into labor naturally? I know c-sections are a common thing but my gut reaction is just no. I've been trying to figure out what bothers me about the thought so much, but haven't been able to pin point it. Maybe it's because it's different than what I've always imagined and I'll get more comfortable with the idea once it has time to settle.

Regarding the Humira/Remicaid discussion - I have been on both and neither were successful keeping me in remission. The Remicaid seemed to work for about 6 months, but then I ended up back in the hospital with a flare that my doctors weren't sure they would be able to get under control. The Humira never had a positive effect. I know they work well for a lot of people, but like anything response is specific to the individual.

My doctors wanted to avoid labor altogether, so we scheduled each c-section. However, DD1 had other ideas, and my water broke 6 days before my scheduled c-section. I went to the hospital, discovered the cramps that I thought were food poisoning were actually early contractions, they wheeled me into the operating room, and DD1 was born shortly after! With DD2, no early contractions or water breaking; I went to the hospital at a scheduled time, and she was born.

For me, natural labor really wasn't an option because the fistulas could have ruptured during labor, emptying the contents of my bowels into my body, which is potentially life-threatening. So I wanted to deliver baby in the way that was safest for her and me, which meant a c-section.

FWIW, anecdotally, I think scheduled c-sections are easier because your body isn't exhausted from labor, but that's just based on my experience and others I know of. Your mileage may vary. And at the end of the day, no matter how baby is born, we are all mothers. Good luck to you in your pregnancy.

kheonimommy · March 2016

I'm also type 1 diabetic.... since I was 6 years old. 11weeks pregnant now. I hope all is well and continues to go well with you

puppymom3 · March 2016

I have lupus and was diagnosed 7 years ago. I knew pregnancy would be rough, but I have a great team of doctors and we are hopi g for the best. Since this is my first pregnancy, I can't tell if my symptoms have been magnified by my lupus. I do know that I require a lot of sleep to be functional and keep my symptoms low at this time. Best of luck to all of you and your babies!

mrszoess · March 2016

@puppymom3 hi! I also have lupus. I have like no symptoms myself but I'm absolutely exhausted. make sure you stay hydrated also, and enjoy the extra ultrasounds from the mfm Doctor

samkins · March 2016

I have MS as well, relatively symptom free. The research says we have a great chance for having a healthy pregnancy, we should feel amazing. I'm more concerned about postpartum flare, our chances of a flare and pp depression are high... and what impact that will have on my ability to breastfeed.

We'll just have to see.... hubby is prepared for whatever may come. No use is stressing about it now.

_darth · March 2016

RA with grade 3 flares and lung impact here. I was diagnosed at 25, and was lucky enough to avoid nodules due to rapid aggressive intervention. The disease was controlled with Remicade, high dose Methotrexate, and Cox-2 inhibitors before TTC, switching to Remicade only during. The transition off the meds seems to have gone okay for now. No new inflammation and my lungs are fine. All and all, I got really lucky.

The minor annoyances:

- The RA fatigue has combined forces with the pregnancy fatigue and the Dictectin side effects. The trio is merrily kicking my ass all day, except apparently at 4 am, when sleep would be useful. Assholes.

- The whole relaxin + shitty joint combo has me waddling already even though I have nothing close to a bump and weigh less than I started off with. It's not very painful at all compared to my usual flares - just feels like post-exercise discomfort all the time. Mostly I just feel like a bitchy penguin. Think Gunther from Adventure Time (condensed primordial evil and all).

- Every. Joint. Is. Cracking. All the time. If I had any rhythm, I would make a pretty decent instrument.

- Synovial fluid draws. I mean, you don't fuck around with lung impact, and they're a solid disease indicator when pregnancy limits other diagnostic methods, but FUUUUUUUUUUUUUU. 1 down, 2 more to go.

ETA some letters. Mostly Us. Couple of Es. An S or two.

OrangeEv · March 2016

@DarthFuriosa I know MS was already wreaking havoc for you, that stinks about the RA too! And synovial draws...*shudder* I hope everything stays under control.

_darth · March 2016

@OrangeEv Thanks!

UponAStar16 · March 2016

Maybe this should go in random or elsewhere, but I found out from OB that the out-of-normal-range labwork my endocrinologist said means kidney problems, is actually pretty normal in pregnancy so they will just monitor and retest in 3rd trimester. So relieved I don't have kidney failure that Dr. Google diagnosed!

OrangeEv · April 2016

Reviving a zombie thread to see how everyone is doing.

My Crohn's is still flaring and I may have to go on prednisone the entire pregnancy. Not happy about it but you gotta do what you gotta do. Anyone ever do Cimzia? Just curious?

Side Note: It is kind of awkward when everyone asks how you are feeling because they know you're pregnant and you don't whether to just say "great!" OR launch into how badly your chronic disease is treating you...

aelzufon · April 2016

I have chronic nerve pain. The biggest hurdle when we found out we were expecting was whether to decide to stay on my medication or to titrate off the meds. Because the meds I am on have no drug trials about their impact on pregnancy - but have no reported adverse affects on the baby. The decision, after consulting two neurologists, then came down to what is the best way for me to control my symptoms so I am able to function and take care of the baby after delivery.

FemShep · April 2016

@OrangeEv I had a bad flare when I was pregnant with DD1. I was on prednisone for my first tri. DD1 is perfect and healthy. My disease got much worse after she was born, unfortunately.

However, with DD2, I was symptom free during and after my pregnancy.

There is certainly hope that getting the flare under control during pregnancy can significantly help post-partum. Take care of yourself, and I hope you feel better soon.

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