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Ulcerative Colitis
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Posted 2/15/2011 5:16 PM (GMT 0)
Hello all! I have been MIA for a long while and am not at all up to speed with how everyone is doing. I am going to try and catch up and get to know the new posters who have come along in my absence. I hope everyone is feeling good and enjoying some good remissions-or at least close to it.

I'm not sure when I last posted. Back story-I had food sensitivity testing done last year while on pred, then again once I had been off for a while-second time it came back that I am highly sensitive to casein (the protein in cow's milk dairy) and a couple other random things. Cutting out dairy has made a HUGE difference in how I feel. I am no longer bloated and gassy all day long. It hasn't impacted my UC symptoms, but I have to think that I would be less inflamed as a general rule by cutting out a trigger food like that. This has nothing to do with being pregnant, lol, but I wanted to update about that.

So as some of you know, my DH was not keen on the timing of having another baby, but my docs were very pushy that now was the time when I am in remission. So after much discussion and thought, he agreed that it was the best time "for me" and to go ahead with it. It took a couple of cycles, but I got pregnant in December, and I am due August 31st. We are both happy about it, though it took him a few weeks to really start getting excited, and he is still being a worrywart about it. (more because of the size of our house than my health)

So far so good with the UC. Things have been quiet thus far. But I am only 12 weeks, and I know I have a long way to go. So, for those who flared during pregnancy, how far along were you when it started? And what did you try to control it? I have my rectals, of course, which will be harder to retain because of the constant peeing, but I really want to avoid pred use again. I feel like I just can't keep going on it-it has done damage that I don't want to deal with again. But I want to be prepared should things take a turn for the worse. Could I also up my Asacol? I am on a low dose of that. (I should mention that I haven't used or needed rectals in months. I had tapered down, but then went off completely because I was getting up to pee so much-hopefully going off won't come back to bite me)

The docs all felt Remicade is safe for pregnancy (we'll adjust the dosing schedule towards the end), but I am not sure about nursing. My GI is against it, but I haven't talked with him in depth about that. Also haven't talked yet with my OB or the high risk OB I am scheduled to see. Or the pedi. I will talk with all of them. But a very pro breastfeeding friend of mine did research and said she found that it should be safe because the size of the molecules in the med were large and didn't readily pass through to the baby. Anyone heard anything to this effect? Or nursed on Remicade or know people who have? I would love to nurse this baby, but only if it is the safe choice.

Thank you for your input! I look forward to catching up with everyone!
Posted 2/15/2011 6:57 PM (GMT 0)
Hi Supa - CONGRATULATIONS on your pregnancy! That's great news!

I'm jumping in from the Crohn's forum. I have Crohn's colitis. I have 3 children and when I flared during pregnancy it was only with the girls (#1 & #3) and it was only in the beginning when the pregnancy hormones started kicking in and my body was like, "What the...???" Everything settled down by weeks 14-16. Then it was pure bliss and remission. I know that other women have flared in the middle, but since you seem to have made it through the first trimester without any trouble - you just might be in great shape to ride this out without any problems.

What is your asacol dose? I have taken as many as 12/day while pregnant. It's a pretty benign drug since it works locally in the colon and not systemically. It's pregnancy category B and risk to the baby is VERY low. So, upping your dose is definitely an option for you.

I breastfed my first two kids while on remicade (#3 is a humira baby). It is safe. The molecule IS too large to pass through to the milk. Do you know of Dr. Thomas Hale? He is the leading expert on medication and mother's milk. You can access his site as a guest, or your doc can access it as a professional and actually ask him questions (docs only, no guest questions).  His website is: http://www.infantrisk.com/content/webforum

You can search the forums for your meds and see what he says regarding breastfeeding while on that med.

As far as any harmful effects, I can tell you that I have seen NONE, ZERO. My remicade babies are 6 & 4 and healthy and intelligent kids. All is well with them and I'm glad to have had the breastfeeding experience with them. If I can help in any other way, please don't hesitate to ask. I'm no expert, but I've been-there, done-that and if I can help, I'm happy to!

Stef

 

Posted 2/15/2011 8:03 PM (GMT 0)
Stef, thank you so so much, for the congrats and for all of this wonderful information!!!!

I am fascinated to hear that you had issues with your girls. Another friend of mine from my mommy board also has UC (she has a mild case), she has 4 kids-2 girls and 2 boys, and only had issues with her girl pregnancies as well! I really think that is interesting to hear that from another person as well. Do you mind my asking if you ever had issues with flaring post delivery? I am very anxious about that as well, especially given that I will be a repeat c/s (my first 2 were both breech, and now I am with a different practice. They won't allow a vaginal for me).

My current dose of Asacol is 3 pills twice a day, so 6/daily. My GI had wanted me to also start on 6mp because he said the combo of that with the Remicade seems to work very well together (I also think he is hoping that if I am already on a low dose of 6mp and the Remicade fails, he could try upping the 6mp to regain remission because I tend to go from remission to full flare extremely fast when it happen), but since we were going to TTC again, he said we would hold off for the time being. I don't think that will be on the table again unless things take a drastic turn for the worse. Here's to hoping I remain in remission and feeling good!!

Thank you so much for the info about Remicade while nursing. That is so wonderful to hear! My friend had also told me about Dr. Hale's research. Like I said, I have not spoken with my GI in depth about why he is against nursing-he certainly won't tell me I *can't*, but he doesn't recommend it. But hearing that you have done it eases my mind as well. I can't thank you enough!!!

Also, if you don't mind my asking, how did you come to the diagnosis that you have? I know Crohns Colitis is unusual. I ask only because at one of my earlier scopes, I was told there was inflammation at the ilieum, and my current GI made some mention that I could have a combo. But because treatment options are the same, we have not investigated that-I haven't run out of med options (yet), and haven't gotten to a point of considering surgery, but I have always had that thought in the back of my mind. Are the symptoms more UC or Crohns like for you when you flare?

Thank you again for your input-I really appreciate it!!
Posted 2/15/2011 9:23 PM (GMT 0)
Laura -

I had issues with post partum flares with both of my girls. Not with my boy. I don't know if that's just a coincidence or what, but both times I flared about 4-6 months afterwards. I find that breastfeeding helps slow the decline in levels of all of those good hormones and it keeps the flare at bay for longer. I don't know if that can be proven, but at least that's how I connected the dots. The best thing you can do is just be aware that it *might* happen and be ready with a plan of attack. With #1 I flared so severely that I had to wean her within a matter of weeks and it was traumatic - probaby mostly for me, but it wasn't easy for her either. So, with my 2nd & 3rd I introduced formula early. Even if it was just one bottle a week. I was never able to pump enough milk to keep a stash in the freezer. So, I figured if I got sick and had to wean to save my body, the baby wouldn't be upset with the switch to formula because it would already be a familiar taste. Never had to wean 2 & 3 early, but when I did wean, it made the transition to formula smooth! Anyway, I thought I'd throw that out there for whatever it's worth.

I've taken 6mp a few times. We have a love/hate relationship. Sometimes it helps me, sometimes it doesn't. I have taken it before with remicade - once with success and once with no success. Since you are doing well now, there is no reason to start it while pregnant. But it's good to keep that in your back pocket in case you flare after baby comes.

I don't know why your GI is so against nursing. I would consult your OB on that one. When I was pg with #1 I wasn't very educated on the subject and when I told my OB I wasn't going to breastfeed she looked at me horrified and said, "WHY NOT????" She told me I could with all of my meds and explained it all to me. GI wasn't up on that info, but my OB was.

I was told that I have Crohn's colitis because I have all the markings of Crohn's, but in my Large intestine/colon/rectum and NOT in the small intestine (which is more common I guess?).  I don't know what the symptoms of UC are, but I assume they are very similar to Crohn's. I have been extremely fortunate to avoid surgery. I was at the point of surgery about 8 years ago, but I went on the Specific Carbohydrate Diet and it saved my guts. If I ever get desperate again, I'll go on the diet before I let them cut me. I'm terrified of surgery and would only do it as a last resort. Anyway...

If you have any more questions or whatever, please feel free to ask!

Posted 2/16/2011 4:10 AM (GMT 0)
Hi Stef! Not sure if you remember but we emailed each other back and forth about 5 months ago when I was newly pregnant. I'm 6 months now and I'm having a girl!!! Due June 5th.

I flared at the begining of this pregnancy bit things got better with treatment.

I too have been told that it's ok to breastfeed with Remicade. I am also hoping to avoid or at least manage a post pregnant flare too.
Posted 2/16/2011 5:15 PM (GMT 0)
Lild - CONGRATULATIONS! I'm glad to hear that you are doing well. Girls are WONDERFUL! (I have two!) Great news that things are under control. I hope you don't flare post partum, but if you do, you'll be ready and hopefully you can nip it in the bud before it goes full blown. Congrats again and keep me posted when she is born!
Posted 2/17/2011 7:08 PM (GMT 0)
Stef, again, thank you so much!! I am so glad you posted-it has been so helpful to me!! It is good to hear about your experiences with 6mp as well. I am not against trying it, but if I don't need it, I don't want to use it for now. I think if I start having problems (if they aren't too bad), I will start by going back on rectals and upping the Asacol, but know that is an option. I am hoping I have a decent milk supply-after my first was born, I had a TON. She was early and I was pumping for her while she was in the NICU (she was only there 8 days), and I got 8-10 ounces everytime I pumped. It was great!!! Then with my second, I had nothing. She was crying for food all the time and I had to supplement even in the hospital! When I would pump, I would be lucky to get more than an ounce. I thought it was so strange. Then as soon as I went off of antibiotics (I had issues with my incisions both times-first time I ended up on cipro, the second it was erythromycin for about 3 weeks), I started having blood in my stool, and not long after that I was diagnosed. I never had any inclination DURING pregnancy that I was having trouble, but have always wondered if my milk supply issues the second time around were a result of my health. Anyway, even if I do have a good supply this time, I think it is wise to introduce formula early on. If I ended up having to be hospitalized or lost supply, it would make things easier knowing the switch would be fairly easy.

I'm not sure why he is so against it either? I get my remi infusions in office, and the nurse who does them told me that is their policy, if you will, on the matter, but she has had moms who nursed. I need to make an appt with him soon anyway, I will definitely talk with him about it when I do. But I trust the info you have given me, and I am feeling confident that I will at least attempt it. I haven't had long term success yet-I had to stop when I went on cipro for #1 (I was too sick to pump and dump for the 2 weeks), and #2 just never had enough, so I gave in to the bottle. But hopefully the third time is the charm!!! I have often wondered that very thing about the hormones and how breastfeeding might affect them.

I have not had any other indications based on my scopes-my inflammation definitely looks like UC-but I have always had that in the back of my mind. Just as a just in case the surgery card comes up kind of thought-I would want to check that out first. I haven't tried the SCD, but I recently went off dairy because I was tested to be extremely sensitive to it, and it has made a world of difference in how I feel. So I am always open to trying various diets-and will ramp that aspect up should I start flaring again.

LILD-Congratulations to you!!!! I am glad you are feeling ok now, and so happy for you!!! A June girl!!! (I have a June girl as well, best time of year, I think! And I ADORE having girls!) I hope the rest of the pregnancy is easy, and I really hope L&D goo smoothly and you remain flare free post delivery!!! Thank you also for your input-it really eases my mind hearing from others that Remicade is safe for nursing. Btw, how do you take your VSL#3? I used to mix mine in chocolate milk, lol (I have the plain, not lemon), but now I can't do milk. I have almond milk, but I don't like it as much, and I think it tastes gross mixed in water or juice. Just curious how you do it!
Posted 2/17/2011 9:35 PM (GMT 0)
Laura - glad to have been able to help. Just a P.S. - you do NOT need your doc's permission to breastfeed, but you *might* need his permission to get the remicade, so if he really puts his foot down then do/say whatever you have to in order to get the remicade (and then go ahead and breastfeed anyway). I'm not an advocate of lying, but to be honest sometimes when it comes down to it, you just have to play their game to get what you want.
Posted 2/18/2011 2:36 AM (GMT 0)
Laura-regarding vsl-I take it with oj. It kinda tastes kinda like orange with cream. I kinda like it! I also will occasionally blend some fruit with ice and mix it with that.
Posted 2/18/2011 1:18 PM (GMT 0)
Thanks for that tip, Stef. I will remember that if he ends up being really staunch about it. Mt remi nurse seemed to indicate it is my choice, but they will not recommend it-but having not talked with him about it, it is hard to know what his exact stance will be. Hopefully when I see the OB on Tuesday, he will have some positive input about the issue and I can pass that along to the GI. We'll see!!

Lild-hmm...I had never really thought of it like that, lol! I guess it could kind of taste like a creamsicle. I'll have to try it sometime. I always thought it made my milk taste like a chocolate malted.
Posted 3/3/2015 3:10 PM (GMT 0)
Hello Ladies,

Just reading this thread because I am in a similar situation. I am currently on pred and feeling great, but there is talk of remicade after this. I am a mom of 2 boys and would really like to try for a third baby when things calm down. I am glad to hear about healthy babies even if mommy is on Remi. I was surprised to hear it is only a category B! YAH! Any way, Supa my question is for you. Are you still on Remi? If so, how is it going?
Posted 3/3/2015 3:45 PM (GMT 0)
You are not likely to get a reply from Supa as she was posting 4 years ago. Start a new thread and you will get some good feedback.
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