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Crohns and lupus related

Hi all glad am not alone been feeling really down as I don't know anyone with these illness and they are really getting to me now as anyone been pregnent aNd then found out they had crohns my life has been turned upside down last couple of years and just wonderin if there is hope out there. I first feel pregnent in 2008. And when I was 25 weeks I was taken into hospital to find My little girls heart had stopped beating life as you can imagine was a blur and caused a lot of problems then in 2011 I got pregnent again well life felt great at the same time was told I had step b but not to worry as it will only cause problems when going into labour so was put at back of my mind few weeks later was told suspected crohns dIease this was a huge shock and was hard to take in but was told many women go on to have a healthy baby at 24 weeks I took ill as baby wasn't grown all was very sick so was took in for a c section my little angel was so small under 1 ib but she was a fighter few days later was told I also had lupus for me just felt my world was ending my little girl fought so hard for 7 days but she just couldn't cope anymore and sadly lost her fight and went to sleep since then gone many test and so sick of hospitals I have all tests and same as all you confirmed crohns and lupus I don't know if this is the reason for the lose of my girls and I just hope later in life I am blessed with a child and these disease don't stop this. In may this year I got a stoma put in as the crohn got bad was told it was just to give my body a break for 3 months 6months later had appoinment at hospital on monday was told its possible my stoma isn't coming out mri isn't looking good I feel its just 1 bad step after another and the hole gets deeper the stoma is a big impact. On my life hate ano nobody like it but mentally is really affectin me I go back on 7th november to see surgeon and I am prayin he will take the stoma away . I got loads a test done so I can try the new treatment adilimumab and have heard a lot of horror storys and would be lien if I said I wasn't scared I really am as everyone already on a lot of meds and try everything really does anyone have a I hope I pass for this treatment but then lupus might stop this being possible just feel am in a deep hole and really felt alone found this form by mistake and so glad I did as I have seen parents write about there children so young getting this horrible illness and I thought I was to young to be going through this I am only 27 and feel like my world has ended has anyone been through the same with pregnecy with a sucess outcome or anyone tryin adilimumab with any advice thank you for taken the time to read this keri x
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum, I am so sorry to hear you have gone through so much and lost your little ones.

I do not have any experience when it comes to stoma's but we do have a sub forum about these that is certainly worth checking out: http://www.crohnsforum.com/forumdisplay.php?f=46. Out of interest what meds have you been on previously both for the crohn's and lupus and were you on them during your pregnancies? Also was the tum settled or active during these times? Have docs been able to give you any explanation? I was also wondering whether they ever keep an eye on your vitamin levels?

We do also have a sub forum for the Humira (aka adilimumab) if you would like to have further info about this: http://www.crohnsforum.com/forumdisplay.php?f=59.

There is a lot of helpful info and support here for you so please do have a good look around and keep us updated on how things go with the upcoming appt.

AB
xx
 
Thank you for the reply and the links am going have a look around them tonight .
No I wasn't on any meds through pregency the 1st time was on anti biotics was told I had an abscess. Didn't know what was happenin I have had 2 setons in for 4 years had these throu pregency but nothin else they took years to find out what was wrong no doctors can't explain nothing they say my case really is a mistery to them which makes me wonder I dO get a B12. Injection every 3 months and on iron tablets thank you for the information .x

Currently 150mg azathioprine
60 mg amitriptyline ( to help spazams )
Prestione sorry about spelling and basically loads of pain killers I can't get many meds because of the lupus and crohns affecting each other 1st majour meds will be the adilimumab if the surgeon agrees on the 7th was meant to go on inflixamab 6months ago and woke up with the illestomy really sorry about spelling on phone and can't check back. Thank you x
 
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