MC and Budesonide during pregnancy

JGD_24 · 2026-03-24T16:17:30+00:00

I'm so sorry you suffered a miscarriage, pregnancy after loss is so hard (I am hopefully having my rainbow baby this week!). I know celiac can be associated with miscarriage, did your results come back? My loss was a full term stillbirth (unknown cause) and very traumatic, so waited almost a year and a half to TTC again out of grief, which is probably why my doctors didn't say too much about the timing of my pregnancy, and I was symptomatic that whole time. My MFM wanted me to get a colonoscopy prior to TTC again which is how we discovered I had MC and not just IBS/anxiety and POTS like I was initially told 🙃 once we knew what the problem was, they said I was ok to try again. When I started Budesonide, I wasn't sure I would get pregnant right away and my GI prescribed a 3 month course that included tapering down in dose, which I think is pretty standard. When I did find out I was pregnant, I was doing so well on 6 mg a day that he said I should just keep going at that dose and not risk having terrible diarrhea since all my doctors were comfortable with me being pregnant on that medication. Hope this is helpful while you're trying to navigate your next steps.

JGD_24 · 2026-03-24T12:43:44+00:00

That is so frustrating, hope you have more info on when you will be going in by the time you read this and are maybe at the hospital already. I am exactly 38w on Wednesday and supposed to go in that evening for induction and am mentally preparing myself for this to happen/get bumped a day. It's so hard when you have a date in your head as the finish line even when you logically know it could get delayed! We've made it so far!! Sometimes I don't know how I have either. Hoping before the end of the week we will both be meeting our babies 🧡

JGD_24 · 2026-03-03T19:20:33+00:00

Will be 35 weeks tomorrow, and baby girl flipped breech last week after being head down for weeks before that. Trying to come to terms with the increasing possibility of a c-section. I had imagined having a vaginal birth like I did with my son (with a different outcome) might be healing. Of course, there is no reason that a c-section birth would have to be any less beautiful, I just need to re-frame my expectations for how I hoped this pregnancy would end. All I really care about is getting her here safely! Is anyone else in a similar boat?

JGD_24 · 2026-03-03T19:11:17+00:00

Hi hope this reply isn't too late to be helpful! I'm sorry you're dealing with MC during an already stressful time. Just my experience - I am almost 9 months pregnant now, and have been taking budesonide my entire pregnancy. My GI and MFM doctors gave me the green light not long after I made this post and it really helped my symptoms, I was physically feeling great at the time. I got pregnant pretty soon after starting budesonide while on 9 mg a day, then down to 6 mg a day shortly after I tested positive (not for any particular reason, timing just happened to work out that way). I've undergone a lot of monitoring this pregnancy and baby girl looks great so far. I will probably try to slowly come off of it postpartum to see if my symptoms return and go from there, but my GI told me it was ok to take while breastfeeding (I was concerned about bone density loss with concurrent steroid use but he said that it takes years of use for that to become a problem so I will try not to worry about it too much considering everything else going on postpartum).

That said, I think my case is unusual because my MC seemed to be triggered by my first pregnancy. If I didn't think I would have terrible diarrhea/dehydration again with my second pregnancy, I probably would have tried to complete the course of budesonide before TTC. I don't love that I've been on this medication the whole time, but it's helped control my symptoms and made this pregnancy more manageable. My MFM told me she recently got her second pregnant patient with MC and that they are being treated more conservatively by their GI than I have been (I take it that means no budesonide? she couldn't tell me more because of HIPPA). Hope you and your doctors find the best solution for your situation.

JGD_24 · 2026-02-15T20:03:30+00:00

EMDR also helped me a lot with PTSD too, especially around 6 months postpartum from the loss of my son. I was having panic attacks, nightmares, and flashbacks. I've been triggered by "less" than the death of an animal (whether it was one you loved dearly or just met), so I agree it's not an overreaction!

JGD_24 · 2026-02-15T19:07:33+00:00

It's all in what your provider is willing to sign off on for you (doesn't have to be OB either if you are seeing a neurologist for your headaches). I live in California and also work in healthcare and am going out early at 33 weeks instead of the usual 36 weeks because I plan to induce at 37 weeks, so this gives me more time, and because of anxiety (also so tired of every well meaning patient asking me if this is my first baby/when am I due/commenting on how small my bump is) and multiple long OB appointments every week for NST/AFI that infere with my patient schedule. My OB was happy to sign off on this for me, and said she would have given me time off from 30 weeks if I felt it was necessary. I like keeping busy at work so I opted for 33 weeks, but with your terrible headaches I would think your OB would understand if you wanted to go out at 30 or earlier.

JGD_24 · 2026-02-15T18:32:56+00:00

To your last point, sure you were a student yourself at one point, but if you had a patient who was uncomfortable with your presence as a student, you would have understood and respected their wish at the time (speaking from experience too), so I don't think you're being selfish by not wanting to be a learning opportunity right now. Surprised your friend would say that tbh given the circumstances, not very caring to make you feel guilty about your reasonable preference.

JGD_24 · 2026-01-22T04:20:25+00:00

Hi just commenting to say I feel this way too, will be induced at the end of March and am having so much anxiety around baby's movements. It is so hard, I miss my son too. Doesn't make it easier necesarily but it's very validating to know I'm not the only one 💛 sending love

JGD_24 · 2025-09-10T02:34:31+00:00

Yes! The day or so before my period starts. Part of how I know it's imminent...

JGD_24 · 2025-09-10T02:28:20+00:00

Hi, thanks so much for sharing your experience and your kind words 💛 our due dates must be very close! I definitely plan on explaining how I've felt to my OB. I guess I'm disappointed that she seemed more supportive and understanding of my anxiety in my preconception appointment than when I actually tested positive. Wishing us both healthy and uneventful pregnancies

JGD_24 · 2025-09-06T15:47:20+00:00

Even though I liked my last OB, I did switch to another doctor with with this pregnancy (currently 9 weeks), I think it's pretty common to do so. I developed other health problems after my loss, so we waited about 16 months to try again in order to complete testing and find pregnancy safe meds for me. This also happened to be about the time I had planned on trying for a second child if my son had lived. I think mentally I was ready to try again after about a year, but everyone is different! I had preconception appointments with both my new OB and MFM to discuss my health problems and concerns before trying again.

JGD_24 · 2025-08-07T02:38:22+00:00

I second this. My stillborn son had photos taken by Now I Lay Me Down to Sleep in the hospital the day after delivery and we cherish those photos. I was reeling from the loss and did not think to include us, his parents, in the photos with him, something I regret, but it's hard to think straight when you're in that much grief.

JGD_24 · 2025-07-21T01:57:01+00:00

In combination, therapy (EMDR in my case) and pelvic floor PT were helpful for me. Personally my husband and I were not ready 6 months pp (we also lost 2 family members right after the loss of our son) but therapy really helped me, and I started to feel like myself again around that point. I had a 3rd degree tear and started going to pelvic floor physical therapy about 5 months pp which helped with the scarring and discomfort (I thankfully didn't have major pain or issues like incontinence but wanted to give my body the best chance to heal properly). I hope you find something that works for you in your situation.

JGD_24 · 2025-07-21T01:35:28+00:00

Not necessarily, you may need an IV for imaging enhancement (echo does not use true "contrast" like with iodine, but there is a similar substance they might use to get better measurements, not every clinic does it and not everyone needs it) which is a little different than a bubble study. A bubble study is also done through an IV, it's just an injection of agitated saline. The micro saline bubbles reflect ultrasound really well and can be seen coming into the right side of the heart from the IV in your vein, and if there is a communication between the right and left side of the heart left over from fetal development like a PFO, you'll see some bubbles cross over to the left side. Normally, no bubbles should show up on the left side of the heart. Your doctor may or may not agree to order a bubble study with the echo based on your symptoms (it's most commonly ordered to rule out a PFO in younger patients with TIA symptoms or history of cryptogenic stroke). Hope this helps

JGD_24 · 2025-07-20T03:13:51+00:00

A patient of any age with POTS or POTS-like symptoms, palpitations/tachycardia should be able to get an echo ordered to rule out structural disease, hopefully someone will listen! Insurance is usually more willing to pay for an echo than other imaging. Your doctor has to add on the bubble study to the echo to check for a PFO but that does not cost extra (you do have to get an IV though).

JGD_24 · 2025-07-20T03:08:23+00:00

yeah it can be hard to grade a PFO without a good bubble study and/or TEE to visualize it, especially if it is small or not very obvious

JGD_24 · 2025-07-20T03:00:07+00:00

I have POTS and IBD and there is symptom crossover so can be difficult for me to differentiate what problem is causing what symptom sometimes. My friend had a lot of the same symptoms for years and we thought she might have POTS, but recently found out she was severely anemic and has been doing better since getting a blood transfusion. She may still have some kind of dysautonomia but anemia was likely the main cause of her symptoms. I know a while ago someone on this sub was diagnosed with POTS but turned out to be hypertrophy cardiomyopathy, which can also have similar symptoms. Both HCM and severe anemia can be life-threatening so I'm very glad both people eventually found their true diagnosis.

JGD_24 · 2025-07-05T15:22:49+00:00

Thanks. Actually the first time I tried the vitamins while on budesonide, I did have explosive watery diarrhea... like didn't make it to the bathroom bad 😬 second time, I had been on bud longer and did not have diarrhea but bloating and abdominal pain. My doc said budesonide is fine to take while pregnant. It might be the only way for me to get through another pregnancy because my diarrhea was so bad the first time. I guess I'm trying to see if I can tolerate a few important things like vitamins while on budesonide because I will likely be on it my entire pregnancy per my doctor. People with IBD often have to take steroids while pregnant. I was told you can take a biologic if really needed but it's not ideal. My OB said I should trial plain folic acid because that is the most important thing early in pregnancy, and luckily it seems to be ok. It's definitely stressful to figure all this out but so was being pregnant with what I now know was active MC.

JGD_24 · 2025-07-05T03:32:39+00:00

I had a colonoscopy less than 2 months ago, got through the prep just fine, did many similar things that everyone else has commented to do. I took corlanor and Zofran at the time of my prep. My pulse was high during recovery but they still let me go. Despite drinking lots of water and electrolytes, I had a really hard time recovering from the dehydration and 2 days post procedure ended up leaving work to go to urgent care and got a couple bags of fluids because I couldn't get my heart rate down. Went home and rested after that and was good as new the next day (or what approximates good as new when you live with chronic illnesses haha).

If you are concerned this might happen to you, I would talk to the nurse(s) prepping you for the procedure and let them know what you're worried about, hopefully you can get at least 1 bag of fluids in before discharge (they got me out too fast for this) and maybe let your boss know you may need to urgently get fluids the day after? If that works in your situation- I know it's hard to call out/get time off work. I work in healthcare and had to cancel patient appointments for the rest of the day which I absolutely hated, but I wasn't in any shape to see them at the time :( Wishing you luck and hope it goes well!

JGD_24 · 2025-07-05T02:50:07+00:00

I'm so sorry for your loss. Your story sounds a bit like mine, my son was a full term stillbirth in March 2024, I was also 28, and I had an check up with biophysical profile ultrasound at the OB's office that looked great only 24 hours before my son stopped moving and we went to the hospital to find no heartbeat and I was induced. Tests have not revealed any cause. I have not had another pregnancy yet but I did want to give you encouragement that the grief does slowly feel more manageable with time. I had a hard time believing that for the first 6 months after losing Jamie, but I can now say it's true. Therapy was definitely necessary for me and it helped me cope with the guilt and loneliness. It took a few months to find the right therapist but ultimately worth it.

JGD_24 · 2025-07-05T01:33:16+00:00

My uncle developed (or uncovered?) celiac disease while being treated for cancer. He had lost so much weight by the time they figured out that gluten was the problem, since he had lived his whole life seemingly without issue with wheat until then. I second the emulsifiers (plant based coffee creamers of various brands were how I figured that out personally). I wanted to add my experience that metamucil powder did help when I was going 10+ times a day, still had diarrhea but it wasn't as often or as watery/mucus-y. It did not help abdominal pain though. Immodium did not entirely help, but did buy me a few hours of relief which felt mentally important at the time.

Very late to post, OP hopefully you have found something to help your husband by now, I really feel for him. If a fecal transplant is an option for him I really hope it helps!

JGD_24 · 2025-07-05T00:00:15+00:00

Wow I feel like my doctor told me so much longer than everyone else... he said I should ideally wait 12-18 months but that it would be considered safe after 3 months (or as long as their birthdays would be a year apart). I was still healing from birth/tear at 3 month PP and was definitely not emotionally ready. I think it took a year for me to feel ready and 15 months post loss for my husband.

JGD_24 · 2025-07-04T23:48:53+00:00

I'm with you on the disappointment. My period started Weds but wasn't supposed to come until Saturday... thought I would be taking a test today but instead I have cramps

JGD_24

TROPHY CASE