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Any Crohn's disease / IBD experts out there?? Questions re: medication during pregnancy

(11 Posts)
SpawnChorus Wed 17-Jun-09 15:51:51

Long story short:

I was diagnosed with Crohn's disease 10 yrs ago. Diagnosis was actually somewhat inconclusive, but I was treated with steroids etc and continued on Mesalazine for a few yrs. Came of the meds when I ttc, and had no relapses.

Have had two pregnancies in which I felt great.

Am pregnant for a third time and have had very loose (but not more frequent) poos for the past three(?) months. Was also seeing some blood in the poo for a few weeks (generally small amounts of fresh blood). GP said blood was probably from piles.

Saw Crohn's consultant for "introductory" type appt (have moved to new area) and mentioned the loose poo. He ordered lots of tests (blood and stool).

Results came back today and I have increased inflammation markers in blood and significantly increased inflammation markers in stool sample. All other tests (iron, liver, poo infection etc etc) came back clear. He's recommended going on Pentasa (Mesalazine).

I'm still a bit dubious about it. I feel absolutely fine...nothing like my original flare up of Crohn's disease, and it seems a shame to be on a fairly high dose of meds which haven't been proven to be safe in pregnancy (although there's no evidence that they're dangerous).

So my questions are:

Could the inflammation markers be caused by summat other than Crohn's? e.g. IBS or some food intolerance?

Even if it is Crohn's is it really worth taking the meds for such insignificant symptoms?

What is the danger of having untreated Crohn's during pregnancy (esp if it's v v mild)?

If I do start taking it, will it also be OK to take it while breastfeeding?

OK...they're rather technical questions. I doubt that even the gurus of MN will be able to answer them, but it's worth a shot! I have asked to speak to the consultant as well by the way, but he might not be able to get back to me this week.

orangina Wed 17-Jun-09 15:57:50

You need CD..... she's the crohn's expert....

Plonketyplonk Wed 17-Jun-09 17:23:31

I got pg on mesalazine and I was told by gastro that it was fine. If it is Crohns, then take the tablets.

From what I understand, if you start your pg ok, you are unlikely to get a flare-up. You need to talk to your consultant.

Untreated, you could end up very tired and ill, if you're not absorbing food properly and you're losing blood.

Plonketyplonk Wed 17-Jun-09 17:23:33

I got pg on mesalazine and I was told by gastro that it was fine. If it is Crohns, then take the tablets.

From what I understand, if you start your pg ok, you are unlikely to get a flare-up. You need to talk to your consultant.

Untreated, you could end up very tired and ill, if you're not absorbing food properly and you're losing blood.

SpawnChorus Wed 17-Jun-09 19:10:18

Thanks plonketyplonk

I did start my pg OK, which is another thing that makes me wonder if it really is Crohn's (although the consultant did say that 30% will get worse, 30% better and 30% will stay the essentially you can't really predict the course of the disease).

If I knew for sure that it was Crohn's, and if I knew what the potential dangers are for the baby if a mild case is untreated then I would feel more able to make a choice about taking the meds.

As it is, I don't feel the need to take them purely to make my poo firmer.

emma1977 Wed 17-Jun-09 23:14:36

- IBS/food intolerances do not cause raised inflammatory markers. The degree of elevation in the markers correlates well with how active the disease currently is.

- Even quite moderate flare-ups can cause reasonable trivial symptoms. There is risk of further illness to yourself and baby, so on the whole I would say that yes it is worth taking the meds to keep it from worsening.

- The main danger of Crohn's during pregnancy is the risk of miscarriage or prem birth. However, that risk is minimised by keeping it under good control.

- Should be OK with BFing. V little passes into breast milk. Can cause diarrhoea in newborns sometimes.

annoyedmum Wed 17-Jun-09 23:47:35

agree with emma1977.
inflammatory markers are not raised in the other milder conditions and they reflect inflammation throughout the body as crohns is a systemic[all body] disease.
Are you a member of NACC,national association for crohns and colitis?
they have several factsheets and one on pg and bfing.

SpawnChorus Thu 18-Jun-09 08:08:52

Thank you both so much! That's really helpful. I guess I'll be starting the Mesalazine today then.

SpawnChorus Thu 18-Jun-09 19:04:06

Rather dull update: blimming GPs prescribed wrong dosage, so have to go back again tomorrow for a new one.

Also spoke to consultant and he said:

Definitely NOT IBS. The inflammation markers are the ones partic associated with Crohn's / IBD and although they're not massively raised it's definitely worth getting under control.

Apparently Mesalazine works a bit like a topical medication...i.e. although a tiny bit gets absorbed into the blood, it's main action is directly on the bowel wall. It's considered to be v safe in pregnancy, although trials can't be conducted due to pesky ethical regulations.

He said that small amounts get released into the breastmilk, and there's no evidence that it's dangerous for the baby, BUT that I could come off Mesalazine for a few months (after the birth) and if I don't get any symptoms then I could stay off until I've finished breastfeeding (I didn't mention to him that this may be years grin).

So there you go.

CountessDracula Fri 19-Jun-09 18:42:28

oh hello
Sorry I have only just seen this

Sorry you are having probs

My Crohn's flared up during pg
I am allergic to sulfa drugs (eg mesalazine, asacol etc) and I take immunosuppressants instead. I couldn;t up the dose of those so ended up on steroids (15mg of prednisolone for 18 months)

The only downside was that I couldn't breast feed on the Azathioprine (immuno)

I would take the mesalazine which may spare you from taking steriods

They do test drugs on people (in the third world yes even pg ones)

SpawnChorus Mon 29-Jun-09 08:54:20

CD - WHAT?! OMG...Words fail me. You mean actual scientific studies? That's just too horrible for words.

Thanks for your advice though...Have been taking the mesalazine for the last week or so, and still have diarrhoea. Maybe too early for an improvement? It's so mild though....and only in the mornings hmm. If I don't poo until the afternoon it's fine!

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