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Crohn's Disease
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Posted 4/28/2018 3:11 PM (GMT 0)
Hi all - I am currently having Crohn’s flares off and on again for the past year and a half or so. I have been on doses of Enticort here and there which has helped. I’m not on anything else aside from Pentasa. (I had a bowel resection over 12 years ago, and was doing great after that until about a year and a half ago).

I was hoping to try to get pregnant this spring/summer but I’m scared if the Crohns isnt under control before then, it could make things worse. Has anyone ever been in a similar situation? My doctor wants to talk to me about starting a biologic soon and part of me is hesitant. I just don’t know what the best thing to do is, especially when trying to factor pregnancy in in the near future.

Any suggestions?
Posted 4/28/2018 3:37 PM (GMT 0)
Pentasa is useless.
Get a colonoscopy and/or an MRI to evaluate your levels of inflammation. When was your last one?
How we feel does not indicate disease severity. I went 10 years with no meds because I thought I was fine too and then I got abscesses and a fistula, which is still around 9 years later.
Once you and your GI see how bad things are internally, go for the biologic, especially if you want to have babies.
I had two remicade babies and they are so beautiful!
Because of the fistula, I was considered a high risk pregnancy, but I felt amazing pregnant. Never even puked once, never got constipated till after my csections, never flared, but I did become very vitamin deficient, especially in B12.
Neither of those babies would have been possible without Remicade. It really did save my life, a life which I had taken so for granted because I thought I wasn't sick enough to see a doctor or take meds.
Posted 4/28/2018 3:57 PM (GMT 0)
Thanks so much for the reply - I really appreciate it.

I haven’t had a colonoscopy since last January, but I had a cat scan a few weeks ago (while feeling good on Enticort) and the results showed worse than when I had it last year sad...very inflamed where I had the surgery, and thickening of the walls was very prominent. I was actually so bummed out because I said to myself, I feel good right now but my insides are showing otherwise. Very disappointing and just made me scared.

Today and all last night I had a terrible burning throughout my stomach - better now but last night was bad. My husband asked what if I felt like and it’s just so hard to explain.

In regards to your pregnancies, do you mind me asking if you were already established on remicade before trying? Ideally I’d love to seriously try in a couple months (not getting any younger), but I wonder if I would have to be on a biologic for awhile to hope it gets under control? I’m just so bummed out and getting more stressed which I know isn’t helping. I see my GI doctor again next Friday so will definitely discuss all this with him. I tried remicade when I was sick 12 years ago and it didn’t help me sad I was just a good candidate for surgery and it honestly was the best thing I ever did.

Appreciate your help and advice.
Posted 4/28/2018 7:47 PM (GMT 0)
Pentasa and other 5-ASAs are really not much better than a placebo when it comes to Crohn's.

I have two Remicade babies as well. I got pregnant with my first only about 6-7 months after I first started Remicade.
Posted 4/29/2018 3:04 AM (GMT 0)
I was on Remicade for 4 years with my first, and 7 with my second.
I felt so much better right after I started and then felt fantastic for 6 months, but then it started losing strength.
It's too bad that you started it and stopped it 12 years ago. You probably can't take it again without having a terrible reaction. sad
I guess you can try the others. I'm on Entyvio now. It's not as good as Remicade because it is gut specific.
With my first pregnancy, I saw 4 OBGYNs, 1 Maternal Fetal Medicine doctor, and 1 Perinatologist, along with my GI. None of them had a problem with me being on Remicade. In fact, the Perinatologist said that she's had pregnant women come in so sick that they had to start remicade during their pregnancies.
You sound pretty bad. I would get on a biologic and get through the loading doses before TTC. I just don't think it's a good idea to expose a fetus to the amount of medicine in all the loading doses.
Posted 4/30/2018 1:58 AM (GMT 0)
So sorry that you are flaring. It sounds like you need to be on better management
Pentasa has not been approved to treat CD, because in all trials it has never performed better than placebo in the treatment of CD (it is for UC)

While biologics have some scary side effects, they are rare and the complications from unresolved inflammation are far riskier than those of biologics.

I have been on biologics for nearly 3 years now (remicade) and am currently pregnant. My OB and GI are both of the opinion (based on good scientific studies) that the meds are much safer for the baby than flaring.

You should be sure to be in remission determined by imaging or scope or labs (not just symptoms) prior to getting pregnant

Entyvio works well for many but it can take a while for it to kick in, you can do a bridge therapy, so add in another medication until entyvio works, or you can try something faster working like humira. I do recommend going on something like 6mp or azathioprine as they help the biologic work much better.


Be wellsmile

Post Edited (Dikid) : 4/29/2018 8:01:46 PM (GMT-6)

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