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sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 7/2/2009 2:11 PM (GMT -6)   
Hi everyone!  I'm new here and thought I'd introduce myself a little.
 
my name is Brittnee and I was diagnosed with UC in Feb 09 and I have had an ongoing flare up since approx Oct 08.  I was pregnant when I first started getting symptoms but it was all passed off as Braxton Hicks/hemorroihd.  We lost our little girl at 33 weeks in Dec due to a cord accident and afterwards is when I really started to have the bad symptoms.  After I was diagnosed I was put on Lialda and prednisone and soon after found out we were expecting again (another little girl) and am currently 21 weeks.  However my symptoms seem to be getting worse.  My GI wants to put me on remicade and my OB is encouraging it as well.  from the research I've done on it I feel pretty at ease with it and it is the same Preg Category as my Lialda which is a cat B. 
 
My question for now is:
I've been getting more of my 'stomach attacks' (hopefully you all know what that feels like so I don't have to explain, lol)  My most recent one lasted for 1 1/2 hours!  I was in so much pain and nothing would help with it and then to top it off I started to get some contractions.  Do you have or know of any relief that would help alleviate the pain during those attacks?  normally mine last anywhere from a half hour to an hour so it's not much time for any pain meds to kick in.  any ideas?
 
Thanks!!  :-)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16712
   Posted 7/2/2009 2:24 PM (GMT -6)   
I am sorry about the loss of your baby & congratulations on having another baby.
 
I don't know what to tell you abou tthe pain but I do think it is important to stop the inflammation. Do you have blood when you go to the bathroom? Do you have frequent trips to the bathroom? Soft stool? I don't think pain is the most common symptom of UC. It is usually a combination of a lot of things. Are you on medication right now? Lialda? How many tablets do you take a day? Do you know if your UC is throughout your GI tract or is it confined to certain parts? Are you using rectal medication of any kind? Have you had stool tests? biopsies?
 
Remicade could be very helpful in making you feel better but in my opinion, it's not something you should try unless you have exhausted the other options. Have you ever tried taking probiotics or eliminating sugars/carbs from your diet? I know it's hard to change diet while your pregnant but I hope you can find a solution other than Remicade. If you can't, remicade might be your best option.
 
I hope you find something that helps heal you quickly and that the rest of your pregnancy is easy and that you and the baby remain healthy.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/2/2009 2:34 PM (GMT -6)   
Hi and welcome! I am so sorry to hear about the loss of your little girl...I can't even imagine what that would be like. But, that's awesome that you're expecting again! Please stick around and keep us updated how your pregnancy is going, and of course, we'll want to know when you have the baby!

That's great that you've done the research and feel comfortable with using Remicade. I wish you, your husband, and your baby nothing but the best!

I can't offer many suggestions for pain, because I'm one of the lucky ones who doesn't have much problems with that. Have you tried using a heating pad? I'm not sure if you need to be careful with that during pregnancy, though.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 7/2/2009 2:57 PM (GMT -6)   
Thanks!

I have soft/runny bloody stools, although they haven't had that much blood in them the last couple weeks but it seems to be increasing. I also make 5-8 trips to the bathroom a day. When I had my colonoscopy in Feb my GI said I had it over my entire colon. Things started to get better after the Lialda (4 tab a day) but now it's almost as if I've never been on it. I've had a few stool analysis but all they've said is "yup looks like you have inflammation" and the biopsy I had when I had my colonoscopy was positive for UC.

I've changed my diet several times over the last 6 months but nothing seems to help, it's as if all food doesn't help it. We have thought of one idea that could be making these attacks worse and thereby my UC worse. In July 08 I had to have an emergency surgery to remove my galbladder, we have since thought that by removing that my food hasn't been digesting properly and has been entering my intestines still mostly 'whole' and making it even harder on my colon (if that makes sense).

Both my GI and my OB feel that Remicade is now our only option to try and get this under control so I can try and have a healthy pregnancy and baby. my GI would prefer me to be on Imuran but as that's a cat D that is out of the question right now.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/2/2009 3:20 PM (GMT -6)   
There are digestive enzymes that you can take that might help with your digestion issues. Princesa seems to be pretty knowledgable about them, but I know nothing about them, other than that they exist, from reading things she's posted about them. Maybe create a post asking about digestive enzymes and I'm sure she'll see it and help out.

Definitely take a probiotic like notsosicklygirl suggested. I think they really help a lot!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 7/2/2009 4:26 PM (GMT -6)   
Just got back from my appt with my GI. He's decided against putting me on Remicade. He had a second opinion from an 'expert' on colitis and she said absolutely not on the remicade. She suggested that I be admitted to the hospital receiving IV steroids for the remainder of my pregnancy. But my dr doesn't want to do that as he doesn't think it's severe enough for that. the expert said there haven't been enough studies done on pregnant women and remicade, however I have spoken with many women who have needed to be on it for colitis during pregnancy. So my dr can't, in good conscious, put me on it even though he feels it would be fine and so does his partner and my OB. Since he's not going to admit me to the hospital he wants me to keep doing what I'm doing and is upping my prednisone to 20 mg every day until I deliver. However I'm afraid of becoming steroid dependant for being on it such long term (9 mos) and then after delivery I'll go to Remicade most likely if my condition has not improved. *sigh*

He's also given some things to try for the pain when I get my 'stomach attacks' Natural remedy first would be to try mint and yogurt to lessen the frequency of the attacks and the mint might help with the pain. If those don't work there's a prescription, robinul, that I need to research some more and then decide whether or not to take it.
It's just so frustrating! Here I was actually hoping to start feeling some relief with the remicade but now I'm just back to being how it's been and hoping the prednisone will work like it's supposed to.

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 7/2/2009 4:37 PM (GMT -6)   
Have you had your stool tested to rule out c.diff? The reason I ask is because I got c.diff somehow while I was pregnant. I never had any UC symptoms prior to being pregnant and I was never on antibiotics. I have no idea how I got c.diff. Things spiraled out of control for me and I ended up with UC after I had my baby. The symptoms are so close so I just wanted to make sure that you were tested so you could be treated properly.

I would not take Remicade while pregnant and I'm shocked that your doctor said it was okay then said it wasn't. DUH! Before trying Remicade after you have your baby, I would try 6-MP first.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16712
   Posted 7/2/2009 6:59 PM (GMT -6)   
It sounds like you're taking all the correct steps to finding a treatment that will work for you. I have seen women post about bieng on remicade during pregnancy but I am sure there is little know about it considering remicade is a relatively new drug. 5-8x a day on the toilet isn't too bad if you weren't in such terrible pain. When I was at my worst, I wouldn't eat much because I didn't want to be running to the bathroom constantly but for you, eating less isn't even an option. You should try probiotics. Have you been using any kind of enemas? Rectal meds can help a lot. It does sound like you have a persistent situation that isn't responding. Hopefully you an hold out until after the baby is born and then you wl have more options for treatment. I am hoping you have some improvement. What about fecal transplantation? That has helped some people here. kind of icky but better than drugs or something that may harm the baby.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/2/2009 10:57 PM (GMT -6)   
Welcome the forum...there are some great people here.

Perhaps a third opinion is in order?

If you go the remmicade route I hope it puts you into remmission quickly (and that does happen to some).

Hope your new baby will be healthy and strong : )
UC Forum Co-Moderator
I am not a healthcare provider. I am offering support and guidance based upon my own conclusions and/or research. ALWAYS consult with a qualified healthcare provider.


Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/3/2009 11:07 PM (GMT -6)   
Why are some of you so against Remicade? I have been on Remicade for about a year now and I'm happy with the results. Do you have reasons to back up what you say or is it just what you heard? (not attacking you just curious what the reasons are.) When I was first diagnosed with UC in 2002 I heard about Remicade and was terrified to ever be put on it, it worried me sick, literally. But when someone asked me why I was so afraid I couldn't come up with many answers accept that I had heard other people saying not to go on it unless it was your last resort. But when I actually did my research on it I was A LOT more comfortable with it. You can get on it and then get off of it, it doesn't have to be a lifetime drug and even if it did...many of our other meds for this disease may have to be lifetime drugs for most of us and they ALL have side effects. If it's what is going to work...go for it. My doctor is big into watching out for me and not putting me on certain drugs that have serious and long term side effects so I am confident that he would not have put me on Remicade if he thought there was a chance of it harming me more than helping me. I'm sorry that you have to wait until after you give birth to get on it. I don't know what that "expert" said to your doctor but there have been studies that have shown that it's actually more harmful to the baby for a woman to be in a flare while pregnant than on certain UC or CD drugs. I know Imuran was one but I'm not sure about Remicade.

Congratulations on your pregnancy and good luck with the Remicade, I hope it works for you.
[pink]26 years old...Diagnosed with Ulcerative Colitis in 2002[/pink]

[pink]Currently taking: Colazal 750mg 3 pills 3x a day, Imuran 50mg 3 pills 1x a day, Remicade & B12 Injections.[/pink]

[pink]Have taken: Asacol, Lialda, Entocort, Prednisone, Limotil, Nulev, Librax, Canasa & Rowasa.[/pink]

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