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Posted 24 January 2011 - 07:54 PM
I don't think you ever really stop "worrying" about your condition, i think we just put it to the back of our mind on good days and on bad days just deal with it.
As for the pred, i have been on and off it for nearly 18yrs so i don't think you become immune to it, i am always hoping and praying for a cure and i know they are always doing research and come up with new medications so that's hopeful.
I always try and keep positive after 18yrs i get over it too.
Just make sure you hang in there and make sure you have a good support system
Posted 19 February 2011 - 04:06 PM
Just wanted to say that I'm due to have my 3rd girl any time now and things have gone really well. I'm on infliximab for my UC. I keep remembering where I was at before and after the Christmas period a year ago...a bit too much stress and my UC flared which had been in remission for a number of years. I was drug free before and during my first two pregnancies until the end of 2009 when I lost 12 kg (mind you it got me back to my late teen weight, which although probably my BMI didn't feel great!). I had a really tough time this time last year and was in hospital for a few weeks until they decided that high dose steroids just weren't fixing it up (this was the first time on steroids).
Anyway, long story short, I ended up on Mesasal, Imuran and Infliximab (Remicade in the US). I was told under no circumstances to fall pregnant...hmmm, guess nature has it's way...I was about 5 months into treatment and have now finished imuran but continued on infliximab. Really hard decisions to be made along the way, particularly at the start as everything I saw said I shouldn't be pregnant. But I have a very supportive specialist and IBD nurses, and they were able to reassure me about other cases they were dealing with.
I know it's a little early to confirm that things are all good with bub as I'm still pregnant, BUT - things have gone really well for me, with no major flares, and all ultrasounds etc showing a big healthy bub. My infliximab infusions are usually 8 weekly but it crosses the placenta in the final trimester so I'll be delayed on my next one until after bub is born. Bub also won't be able to have any live vaccines in the first 6 months and they can't confirm if there will be any true immune suppressant effects in her system...hoping not. I'm looking into bf while on the infusion...again the advice from the company is not to...but I've been told that it is an infusion rather than oral for a reason - and that any in the breastmilk would be limited, and then not effective in the bub...I successfully bf both my others to 17 months and am weighing up my options again.
Has anyone else had any experience?
Posted 19 February 2011 - 07:20 PM
I just wanted to say that I have just had a DS after being on Mesasal and Imuran the whole pregnancy. I also have a 3 year old DD (I was on both these medications during this pregnancy also).
I didn't like being on the drugs but I have had several attempts of stopping them only to have symptoms intensify. Both my GI and OB were fully supportive.
When DS was born they tested the cord blood to check the blood count cells in light of me being on imuran. Tests were normal. They have also just conducted a blood test on DS at 2 weeks old which was also normal.
The OB and Paed were quite supportive of me breastfeeding on Imuran, especially given the blood test results. Although it is hard to know for sure, both thought it would be okay to do so. However I made the hard choice of deciding to breastfeed for a week only so that DS got the initial benefits of colostrum etc and move to formula feeding after that. I also followed this approach with my DD when she was born 3 years ago. I personally feel that continuing DS (and DD's) exposure to the drugs after they were born was a risk I didn't think I would sit comfortably with me. I am more upset about stopping breastfeeding this time around but emotions aside I feel it is the best decision for my kids. I also chose to delay the immunisations usually given at birth (Hep B) until later to allow DS's body time to adjust, but at this stage intend to continue with the rest of the immunisation schedule as prescribed.
Best of luck.
Posted 03 March 2011 - 01:05 PM
I was just curious on who had Crohn's Disease before having a baby and did you have any complications with your pregnancy or any tips? I was told when trying to conceive and while pregnant you are not aloud to be on certain medications e.g. Azathioprine also known as imuran.
Just interested as I do have Crohn's Disease and when I am interested in conceiving what do I need to know.
Share your stories and experiences I am interested.
Posted 14 March 2011 - 07:01 PM
Just passing through to let you know that DS1 had his 2 year post resection endoscopy on Thursday last. The Gastro found a small ulcer on his small intestine. Unclear whether this is a recurrence or something else. Will know more in 2 weeks when DS1 sees doc again.
Posted 07 May 2011 - 06:22 PM
Anyone got the Chrons/Colitis Ezy Board Forum link they could share? I can't find it.
Posted 18 August 2011 - 04:20 AM
Hi fellow crohnnies
How are we all going?
Just thought i would stick my head in, i'm having good and bad days. Going in for an op on my uterus week after next due to heavy periods, finally i got to see a gyno and he said he's going to burn the lining, do a d&c and have a bit of a look see that there's nothing sinister in there. Other than that the usual aches and pains and busy with kids, dh started a new job back in March (managerial position) but it means he's working 6 days and is gone from 7:30am to 6:30pm so it's taken a lot of adjustment to the new hours but we're getting there.
Would be good to hear how everyone else is doing
Posted 03 October 2011 - 07:19 PM
im new (sort of), been reading EB for abut 6 months now...
i've got chron's too, very active..diagnosed 3 years ago and on Infliximab and azathioprine.
19w in the third pregnancy an still in a lot of pain on and off (more on then of).
i have 2 wonderful teams taking care of me (both obs/gyn and gastro) and i hope this baby will be born ok and everything will be ok.
nice to meet you all officially
Posted 28 February 2012 - 12:55 AM
Please add me to the list!
EB name : TraceyBrown
Real name : Tracey
Location : currently in Montreal Canada but our perm home base is in Central Queensland
diagnosis and how long: diagnosed 2010 but symptoms from 1990, resection, currently on humira
Kids : DS1- 6, DS2-5, DD-3
Does anyone have a child with Crohns? Ds2 is showing signs of it and has been for awile, gastro wants to look at him but I cant get a gp to listen to me! Aggh!
Posted 10 March 2012 - 01:30 PM
Been awhile. I'm going ok. DD is 4 and DS 1 year old now. Still on mesasal and Imuran and coping quite well (UC diagnosed 2002)
traceybrown - your post caught my attention as DD has been complaining of random stomach pains for awhile now. Had her checked out (not colonoscopy though) and nothing showing up as yet. We are trying not to panic and look for UC. What are your DS's symptoms if you don't mind me asking?
Posted 10 April 2012 - 10:36 PM
The little guys symptoms are mostly diahroea, he never has solid poos and can go up to 10 times a day. Sometimes he says he has a sore tummy......
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