Hi Everyone, Just thought I would give an update on my situation and answer some questions while i'm at it
Im currently 27 weeks pregnant and while I would like to say I'm doing well, i'm really struggling and not in anyway better so far. Good news is that I found a new doctor in December and he has been a god send! I think he was a little overwhelmed when I first consulted with him because I got every doctor and hospital who has seen me fax copies of my history and also wrote up my OWN 4 page 'illness resume' which included periods of sickness, remission, drugs, and also my personal descript
ion of how I felt at that time about
my quality of life and happiness of my medical care so i think he knew 1) that I was serious about
getting some help 2) That if didn't show some effort he knew I would just find someone else ha ha so I think I am like a project to him (which I think is good motivation for him to take care of me ;-)
He was able to start helping treat me for the 'body pain' I am getting which he and my physician have diagnosed as fibromyalgia which I am now taking an anti-depressant which apparently helps with the aches and pains Dothep 25mg a day, which i am still waiting on to work (hopefully in the next week or two)
He has changed the Imuran I was on to 6mp which I am finding may actually be helping a little but but his main goal is to make sure that I will qualify for Infleximab straight after the baby is born.
There were small changes I could make after I found out I did actually have Chronic fatigue and that was to stop pushing myself to the end-th degree every day with trivial tasks and instead save that energy for light walking which I found made a huge difference to the fatigue and also the fibromyalgia.
I have painfully restricted myself to 2 Panadine forte daily at night when my pain gets really bad and was recently told that I have to be off them 6 weeks before the baby is born or else I will have to have the baby born in a public hospital near me (which doesn't have a great reputation but specialize in 'drug addicted babies') I was so stunned after I was told that what I was taking was safe for the baby is actually not!
I feel more than annoyed and upset that over a year ago I asked my then Gi his honest opinion about
having another baby while my Crohn's was active and he and all the gi's I spoke to said so confidently YES and I suppose that was also because they didn't believe how much I was in fact struggling. I also asked in depth about
needing to take drugs to manage and maintain the disease he said that as long as the mummy is happy and well the baby will be, so if you need to take pain med's its better for the baby than mummy be uncomfortable and distressed and same goes will drugs like imuran etc to control the disease. HOWEVER all I have had is trouble! It has been a nightmare getting prescript
ions for the pain killers because i'm pregnant, nobody but my current GI was willing to try different drugs to help the Crohn's and fibromyalgia because they all said that the "miracle of pregnancy" helps Crohn's and will naturally put me into remission...well i'm sorry but that is bull and while it may be the case for some woman I don't think they should tell patients this with such confidence if it is not always the case.
The end of the battle is now in sight so I am trying to stay positive and while I have had some HUGE struggles with my husband we are also working through the stress of it all to look for 2 great things 1) remission 2) a beautiful baby girl!
I am glad that I was so stubborn and confident in knowing my own body that I pursued answers and for everyone out there that is wondering if they are really getting the care that they need just know that you should never have to cry after a hopeless consult with your doctor and if you are, your probably right that they are not either listening...or believe what they hear compared to what they see in your tests.
Much Love x x
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.