Ok little fess up and advice appreciated

right, I have had the occasional whinge on chat but must admit been too embarrased to say i have crohns disease/colitis. Been in remission for 9 years pretty much so is a bit of a shock. Back then i got to point of surgery to remove colon. It started when pg with DC1 and hospitalised 3 times in 2 years missing her milestones etc our relationship never been right

so anyway, this time started in pg with DD4 and kept thinking it will disappear on its own as did the week long 'blip' i had when DD3 was 6 mnths. No such luck this time.
Started treatment 5 weeks ago and is hugely reduced but still hanging on. I have a review with doc in a week. Im dreading it as dont trust docs after before and then we are into the realms of hospitls again. What im most scared of is being admitted and being away from my babies which would make me really depressed, having to give up bf which i dont waant as this is my only babe so far not 'polluted' with formula ( no ofence intended to FF just how I feel ) and she is too little, and lastky scared of managing if i cant look after my children -all home educated.

Sorry that was soooo long winded...just wondered about advice for giving up bf for meds/hosp admission. Expressing never seems to work for me but I DONT WAANT TOO GIVE UP We arent quite there yet but my time is running out and I need to b prepared.

thanks for reading

[clothmama]

firstly dont' be embarrassed, it is a condition that is no fault of your own and there is no reason at all to be embarrassed

What you need to do is arm yourself with all the questions that are bothering you, get a little notebook and write it all down so that you feel empowered to get what you need from your appointment. You need to be clear that they need to find a way to allow you to keep breastfeeding if at all possible as it is so important to you

It is fantastic that you have been in remission for so long and it may not be easy what you have ahead of you so you need to find support for what you are going through. Ask if there is a nurse that specialises in Chrons in your area and see if you can see her. Nurses will often be able to find help and support for you that the doctors don't necessarily know about as they are dealing with the medical side of it where the nurse should be able to help you in a more holistic way.

I'm not sure which ones are good but have you been on any of the Chrons support forums? I can imagine they will be really helpful for you and you may be able to see the doctor feeling better informed about your options etc from information you may glean from the support of others that are going through the same thing. Here is some I found:

http://crohns-disease.org.uk/forum/ not very big but Uk based

a much bigger forum with posters internationally
http://www.crohnsforum.com/

I'm sure both will be a wealth of information for you.

Lastly huge to you you must be feeling scared and unsure about the future and what will be happening. As I said before, please don't be embarrassed as there is nothing to be embarrassed about

Hey, sounds like you're having a pretty tough time. I agree on arming yourself with questions. And maybe ask the hospital if you can try one of their express machines as that might be good enough to stock up the freezer. I'll probably get shot for saying this on here but i believe a baby after 6 weeks only needs 3oz of mummy's milk a day to get all the right vitamins and minerals so maybe you could combination feed if you're not able to get masses of expressed milk. You sound like an amazing Mum and I would be proud of yourself for coping with crohns and 4 kids. Chin up and keep us posted. X

I have Crohns disease too and it is something that can be embarassing to explain, but not something we should be ashamed about.

I loved being pregnant as all my symptoms subsided and I felt the best I had for a long time. I was under (and still am) consultant care at the hospital for my Crohns, and had been medication free during pregnancy, but had a flare up when DS was about 4 months old. We made a joint decision for me to start back on medication, but this started with 'safe' steroids so I could express and freeze loads of breastmilk.

I took advice from the breastfeeding network on how my meds would affect my breastmilk.

I have to add that you have to choose to do what is best for you individually as well as your family. As much as I would have liked to continue bf, I was getting to the point where I wasn't able to look after DS, so had to make a decision.

If you have a good relationship with your docs, consultant etc, please talk to them about your concerns. There might be other options on treatment and how things would work if you did have to be admitted in the future.

Taking meds and stopping bf was the right decision for me as it meant I kept out of hospital and I was able to look after DS.

FC for a good result for your review.

I only BF for a v short time as I was then diagnosed with MS, and had steroids to enable me to walk properly again. I dont' feel guilty, and nor should u.
I do feel a bit at ur comment about formula being a pollutant. Bleaches are chemicals, walking down the street breathing car exhausts, living in the city, eating meat/dairy which has been pumped full of growth hormones and antbiotics, eating non organic fruit and veg which has pestercides in. All of these are harmful to us all.
But hey, we're each entitled to our opinions,

I hope ur appointment with the consultant goes better than u predict.

No experience/advice specific to crohns but second the suggestion of the BfN or other org's like LLL for information about medications & breastfeeding. This forum run by Thomas Hale (who's book on medications & breastfeeding is very good and most BFC's should have access to it) is good for getting an idea about specific medications quickly. It's aimed at medical professionals so you can't post questions yourself...but a quick search of the forum usually yields some previous posts about most medications. I've not come across many that haven't been mentioned there so far. IME most docs will recommend stopping bf'ing when in reality it is possible to continue so it's well worth thoroughly researching it for yourself.

Re the potential hospital stay it might be worth having a word with the breastfeeding co-ordinator of the hospital you are likely to be admitted to as I'm sure they will have measures they can put in place to minimise the disruption to your Bf'ing relationship.

Thanks for all your replies I do feel genuinely supported in lots of things through 'the tree'

Have looked at the links provided and got some good info so thats great. My main concern was bf and the steroids and from what I've seen so far it may be ok to carry on bf depending on the dose Feeling much more positive about the whole thing now