Help? 21 wks Pregnant and no relief, have Ulcerative Colitis 23cm.

My OB doctor doesn't know what else she can do so I'm currently waiting for her to get with my GI doctor again to see what he thinks he can do next.

I cannot seem to keep anything in.  It either comes out soft stools or now sometimes hard and then I'm throwing up.  They put me on steroids but it doesn't seem to be working either and I'm also on Asacol 6/day, flintstones complete, Heperain 2 shots per day for factor V blood disorder, folic acid, and iron.

Just wondering if there was anyone else out there that was this sick during their pregnancy with ulcerative colitis?

I can barely eat and when I do then I feel miserable.  I'm going to be 21wks pregnant Thursday and I have lost over 12lbs since I found out I was pregnant and I wasn't that big to begin with, 5'3" and 147lbs when I started now I'm down to around 135lbs.

Plus side is we had our 20wk ultrasound last week and baby is over 50% tile and all looks good with her and in one of the 3D ultrasounds I can see an angel wrapping her arms around our babys head, it was a god sent to see that!

Now if I could only get some relief.

Looking for any advice!

Thank you JM21204 for your reply.  It helps to hear stories like yours.

You are the same age as me as well.  This is my second pregnancy, I had a boy in Feb. 2008 and didn't have all the complications I'm having this time around.  But not sure if heriditary but my Mom was sick with us girls and not my brothers too so that might have something to do with it as well, who knows.  It is just frustrating to me because I can't seem to get any relief from throwing up and having a stool at the same time. 

Thanks again for the reply and I hope everything goes well in April when I'm due!

 

I lost 25 pounds at the beginning of my pregnancy and was in the ER a couple of different times to get IV fluids because I could keep nothing down--not even water. This lasted until I was 4-5 months pregnant and then I was okish for the rest of the pregnancy (still flaring but at least able to eat). My baby had no growth problems and was born perfectly healthy. I was on Prednisone and Asacol later in the pregnancy.
When are you due in April?

My OB doctor called and talked to a GI doctor (the on call GI doctor) then the GI doctor called me and to throw another stick in the pot back in October they tested my stools and found I had crypto (some water born illness) and they seem to think that this may still be lingering because I was never given antibiotics for it because of being pregnant so they wanted to give me the antibiotics now and I asked so how do you know I still have the Crypto that was two months ago when they tested me for that. Well then she goes ok well we will do another round of stool samples so that is where I'm at today, my husband picked up the kit and will do three days worth of stool samples again to see if the Crypto is still lingering and then they will treat me with whatever they find. She thinks there is some sort of virus and that is why the Prednisone isn't working properly. I think guessing is more of the right answer here.
To answer a few questions from previous posts and thank you to all that have replied. I am due April 22, 2010 2nd Pregnancy-Baby Girl, My boy was born 2-14-08 with hardly any complications.
Here is all what I'm currently taking.
Started Prednisone 10MG tablets 4 times daily on the 2nd of Dec. for 7 days then tomorrrow I take 3 for 7 days and then 2 for 7 days and then 1 for 7 days.
Flinstone Complete (stomach couldn't handle regular prenatal vitamin)
Iron 1 per day 65 mg
Heparin 5,000 units/ml 2/shots per day (also factor V- 1 bad gene)
Ondansethron HCL 4MG about every 6 hours for nausea
Folic Acid 400 mcg 1 per day
Asacol Tabs 400mg 6/day (this is the max my GI doctor thought would be safe for pregnancy)
Enema's at night but have been so sick I haven't done these since starting the predinsone, I'm going to try and start these again tonight.

Kazygirl- I feel your pain, that is exactly what I've been doing as well, puking and pooping and bloody stools. I'm also always worried about the baby too, but when I had my 20wk ultrasound scan and saw an angel holding my baby I knew everything with her is going to be ok. I just have to get myself better. I'm doing the stool samples looks like two, one today and one tomorrow and am hoping they figure out how to treat me. I'm up to loosing 13lbs to date. I'm sure it doesn't help but It sure has helped me to know that I'm not alone and others have been through this as well. Hang in there and I will too and we will both make it with healthy babies! Glad to see you are coming out of your flare. I wish you all the best!

I still wasn't getting any relief and still puking and and pooping many times so Friday Dec. 11 I finally couldn't take anymore and they admitted me to the hopsital, I was in the hospital from that Friday till this past Tuesday the 15th and they kept me on IV fluid and Friday night they did a scope of my colon to see if there was something else besides the colitis going on and they took a bunch of biopsy and then started me that night on Remicade. All biopsy's came back fine and the stools I did came back negative for the crypto that I had back in October so everything that was going on was because my colitis was flaring and pretty bad. The remicade seems to be working, I go back in for another session next week on the 23rd. And then 6wks after that and then I think they said 8wks after that, but wholly buckets I found out just for the drug alone is over 3500.00, my week in the hospital over 10,000, thank heavens I have insurance but still have to pay 15% of all charges and that adds up very quickly. Just wondering if anyone else has had Remicade treatments and how they worked for you? They are also weening me off from the Predinsone since it wasn't working anyway so have 4 more days at 20mg and 7 at 10mg-can't wait to be done with that drug! If anyone has any information they could provide me on Remicade I would greatly appreciate it. Being 22wks pregnant they told me it was safe for the baby...safer than the steriod I'm on.

Hello UCISNOTMYFRIEND----

I think I was actually flaring when I got pregnant as well, but it seems I have found out now that I had a lot of other issues going on, I found out I tested CMV positive so I had that virus going on as well which I think may have caused my colitis to flare even more and land me in the hospital....I would recommend talking to your GI doctor right away and tell him you are trying to conceive or that you may be pregnant and just keep after your GI doctor because I think if I wouldn't I could of had a lot of other problems.    Or make an appointment with an OB doctor as well if you think you might be pregnant and just keep on top of your doctors, it seems you have to doctor yourself now a days.  I am just thankful the remicade for me is working, I still don't have those doctor bills but I think it is every penny worth it since I feel so normal and don't even feel like I have UC anymore-I think two treatments of remicade for me has put my UC into remission for now and being 6 Months pregnant I cannot be happier with that!  I wish you all the luck and if you have any more questions after you do conceive, I'd be Happy to share my experience with you.  Email me anytime

Good Luck!

I'm sorry, but email addresses cannot be put into a post.  You can add it to your member profile for people to find and email you that way.  Typing your email address into a post leaves you really open to spammers (the automatic "spambots" I believe).  --fruitgirl

Post Edited By Moderator (fruitgirl) : 1/12/2010 1:19:01 PM (GMT-7)

UCISNOTMYFRIEND, the person you want to communicate with is JSUC23CM, not me! I edited JSUC23CM's email address from her last post, as I did with yours. Email addresses are not supposed to be put into the text of a post, as I explained above.