Flare during conception...

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Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/25/2009 3:42 PM (GMT -6)   
Ok... I know, I wasn't supposed to get pregnant during a flare. But come on, UC has taken so much from me- it seemed like we would never be in the clear to get pregnant. Now, I am 6 weeks along and can't tell anyone because we know it might not last. I have a lot of blood loss all day- about 10 times a day! I am not going on prednisone because it already messed me up and it doesn't work any more.

I know it is still early but, the nurse seems to think that as long as it is coming from by butt I'm ok. But that can't be right. Can it?

I just want to fast forward through the first trimester and grow this baby like a normal person! One thing is good, I guess... No one suspects we are pregnant because it looks like I am just in a flare again.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/25/2009 8:05 PM (GMT -6)   
Make sure your taking iron.
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   Posted 4/25/2009 8:24 PM (GMT -6)   
Yup--iron and folic acid. Especially if you've been on Sulfasalazine. And calcium if you've been on prednisone. I'm pretty sure I was flaring when my daughter was conceived a couple years ago, I was so naive then I had no idea what was going on. My pregnancy wasn't easy, but we all got through it and no problems at all with my little one. Hard to say about the blood, but babies are a lot hardier than one would think, considering all the prednisone I was on while pregnant. Good Luck!
aquafly79


Diagnosed with UC in 2004

Currently on Sulfasalazine, taken off Imuran recently due to low white blood cell count, multivitamin, folic acid, calcium, 1200mg fish oil, VSL #3, magnesium

Now on iron supplements due to iron deficiency

Recently diagnosed with a bunch of food intolerances, which might explain UC: oats, walnuts, butter, lime, tea, coffee, some spices, cane sugar, squash, mozz. cheese, bean sprouts, cola, lettuce, peas


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 4/25/2009 9:05 PM (GMT -6)   
I would make sure your GI doctor and your OB are on the same page. Have they spoken to each other? I don't know how bad your flare is - if you are losing a little blood or a lot. I first came down with UC shortly after pregnancy #3. I was extremely sick and it took quite a while to get from the OB to a GI to be diagnosed and helped. I had major blood loss. I ended up miscarrying around 10 weeks, and I believe it was from the flare. When I got my second flare - with pregnancy #4 - I went on prednisone almost immediately. It didn't put me in remission but it did make the flare bearable. While it was a difficult pregnancy, my son was born healthy. Just make sure both doctors are aware of what's going on with you. Good luck.

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 4/25/2009 10:27 PM (GMT -6)   
I would also recommend, as another poster did, that you take folic acid supplements...over and above what you would find in a prenatal because you are loosing more vitamins while you are flaring and your body is not absorbing them very well. Also, while I was preggo I was advised to take a prenatal take is in powder form for the same absorbtion reason. You can buy prenatals at your health food store that are in v-cap form - powder put into capsules. Also fish oil - it is good for inflammation and it is essential for your baby's brain development (more so in the third tri and during breastfeeding but as it is so all round healthy for you and your babe you may as well start right away). Lots of rest and as little stress as possible. While I was pregnant I flared in my late second tri. My doc told me that a flare has to be pretty severe for it to harm my baby - to the point of hospitalization. It could be different for the first tri but as someone else pointed out, these small beings are tough. Good luck to you.

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/26/2009 12:09 PM (GMT -6)   
Two things I'd like to say having had a miserable pregnancy with UC Be really carefull with the oral iron it reallyagrivated my UC well I'm convinced itmade it progress from mildto severe,apparently its not that uncommon either but noone warns you or tells you you can have infusions of iron if you need them thus by passing the intestinal tract,secondly don't worry about taking pred if you need it to get you out of a flare horrid as it is,none of it passes the placenta and it will not effect baby,by far the biggest danger to mother and baby is in pregnancy,is UC that spirals out of control,not any meds you may have to I nearly lost baby and colon about five months into the pregnancy,in part because of not acting quickly enough to try and control the flare,
Wishing you all the best I'm sure everything will be fine rest relax take all the meds they offer you without worrying and try and nip it in the bud Anna

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/26/2009 2:13 PM (GMT -6)   
I too had gotten pregnant with my second child during a flare, we planned it during around the time my flare was a little milder than usual (sometimes pregnancy can put you into remission but that didn't happen to me although I stayed a little milder during that pregnancy) since I've never been in full remission since getting sick about a yr after having my first baby I know you can't necessarily wait for full remission to get pregnant, thigs worked out well enough I had gotten pregnant quickly (as I did with my first baby) and he was a big (8lbs 3oz) healthy baby and is now a strapping teenage boy. I also bled here and there during my pregnancy with him (from the anus not the vagina) and all was well regardless.

I only used folic acid, I did not take extra iron with either pregnancy as my doc never directed me to only folic acid...iron supplements can apparently do a real number on the gut so be careful if you're told to take it.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/26/2009 4:19 PM (GMT -6)   
Thanks everyone. This gives us a lot of hope... today was pretty bad but I talk to my GI tomorrow. I'll ask about the folic acid and iron.

Thanks again! :)
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/26/2009 10:45 PM (GMT -6)   
i got pregnant shortly after a flare. I had gotten out of the hospital in July (i think) and was still on pred, and hte pill! we were going to wait until january when i was off the pred and a little healthier, but i got pregnant in september, I was lucky though i was one of the 3 out of 4 that go into remission during pregnancy! However, i took LOTS of extra folic acid, i had been doing that for almost a year since i was thinking of it and the meds i was on can cause spinal problems and the folic acid can help counteract that.
Also, if the prenatal vitamins are bothering you, a flintstones with extra iron is just as good!
You need to make srue you are seeing a high risk OB and getting ultrasounds often. I had them once a month, at least. To make sure the meds weren't affecting the baby, and to catch anything that might be wrong.
One thing to note, some of the meds you are on can cause you to bleed easier from soft tissues (ie. gums, nose, and cervix) so you may have some spotting durning your pregnancy. I started that about 7 weeks and it happened on and off during the whole pregnancy. Of course always get it checked out, but after the 4th time i connected the dots and realized it was the meds causing the problem and quit freakign out as much when it happened, lol.
Good luck with your pregnancy!

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/27/2009 7:43 AM (GMT -6)   
I got pg just a few weeks after my diagnosis and my GI saying don't get pg anytime soon. We weren't planning on it but what a blessing my second little girl is. I was mildly flaring when I got pg. I was on a short round of pred for a rash but that put me in remission along with the pregnancy hormones. I was in remission for most of the pregnancy and felt great UC'wise. Be sure to take your vitamins and make sure your OB and GI know. Best of luck!
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/28/2009 7:40 AM (GMT -6)   
UPDATE: I talked to my GI yesterday and he suggested I get an abortion... He says because I have tried all other medications and they stopped working I have one option left: Humira which is a class B drug (not tested on Pregn. women). He worries that I will put myself and the baby at risk. I tried to talk to the OB and get an earlier appointment but they don't really have any.

My husband and I want to keep the baby. But with all medications failed... What are our options?

I'm only 7 weeks and just started getting morning sickness... Should I just do a Clear Liquid Diet until things calm down? This sucks... as if Colitis didn't have enough of a hold on my life... :(
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/28/2009 10:22 AM (GMT -6)   
Oh, wow, Liza. I'm so sorry. You have a very difficult decision to make. I don't think I'd do a clear liquid diet, though. I'd worry that you and the baby wouldn't get the calories and nutrition you both need. When is your appointment with the OB and is it a high risk OB? You should definitely talk to one before making a decision. You may want to have your GI call the OBs office...sometimes other docs are able to get their patients in faster in urgent situations.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/28/2009 10:46 AM (GMT -6)   
The OB appointment is Friday the 8th. But I sent them an email stressing the situation and they usually get back to me in a couple of days.

Maybe I'll email the GI too and see if he can email or talk to the OB office. I did ask for a High Risk OB and our insurance is with Kaiser so I can always call an advice nurse. I'll keep you posted as I hear more from the OB. Thanks for your support.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/28/2009 11:11 AM (GMT -6)   
I really don't know, if I am the right person to suggest. But my sister too had this problem. Her OB had advised her complete rest during her pregnancy. She used to flare up real bad. She was on Pred 60 mg, Sulphasalzine 12 tablets a day, Folvit, Iron, Calcium, Alpha D. Fortunately, the things went out well, and she has been blessed with a son, who is now 9 years old.

Please take rest. Take a second opinion. In case, abortion is the only option and inevitable, go for it. God willing, you will be on family way again. My sister faced similar situations. As you are young, time is not running out. Take care.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/28/2009 11:22 AM (GMT -6)   
hi lisa, I'm so sorry for you its a horrendous position to be in,your only six weeks along so you still have a while before you have to make any decisions,make sure your still taking folic acid plus extra vitamins and minerals,try and get a second opinion,to balance what your GI said,I know women have had successfull pregnancies while on remicade and even gone ahead and breastfed neither of which is recomeded,because drugs like remicade and humira have not been around long enough for doctors to really know there potential risks in pregnancy or long term,they simply have not got the statics yet,
I know this does not really help you,but I'm sure you will find an ob to suport you if you decide to go ahead
Thinking of you and wishing you all the best Anna

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/28/2009 11:33 AM (GMT -6)   
sorry just another thought also I think a low-residue diet would be good for you for a couple of weeks to help calm things down you can also substitute meals with nutritional drinks for a while and try to give your colon a bit of a rest.
You do not need to worry too much about eating in the first tri mester plenty of women have terrible morning sickness with no adverse side effects, its later on when baby is really growing that you need to consume the calories

Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/28/2009 1:00 PM (GMT -6)   
Thanks again everyone. I am so glad we have this site to talk. It is really hard to find people who know what it's like... and to add a baby to the equation makes it even more unique. Thanks for all the advice. I think we are going to get some nutrition drinks and eat small low fiber meals. Still haven't heard from the OB... I've just been laying around anyway.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/28/2009 1:24 PM (GMT -6)   
Oh wow Liza I cannot imagine how horrified you were when the doc suggested abortion to you (((((((HUGS)))))))

The decision is yours in my opinion and at this point you're almost 2 months which means only about 7 months left to go and there is the possibility that at some point during your pregnancy you could go into remission.

What exactly are your symptoms at the present time, how many times/day are you going and are you having mainly D?

Like I mentioned above I was in a flare (always have been) during my second pregnancy I had D about 10-12 times a day with bleeding on occassion and my pregnancy and baby were perfectly healthy and normal, part way through my pregnancy my D became more formed stools, soft but formation was definitely there and the frequency did cut back a little too (maybe about 6-8 times/day) so it can be done and I wasn't on any meds at all because I've either been allergic or non-responsive to them.

I say as others have, get another opinion.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 4/28/2009 1:24 PM (GMT -6)   
Liza, my heart goes out to you. When I was pregnant and flared my GI thought it would be a good idea if I met with a doctor who specialized in UC at a large, metropolitan hospital, about two hours away. She was great because she was very up on pregnancy and UC. That's one of the reasons that I love my GI because he doesn't feel like he has all the answers and if he's unsure about something he'll send me to another doctor because he truly wants what's best for me and it's not an ego thing. With something this serious, I would definitely get a second opinion. GI doctors treat many different diseases and not just UC and they are not all up on UC pregnancies. You said that you've tried all the other medications, did they help at all? If so, maybe you could take one or two of them while pregnant and maybe not bring you into complete remission but at least make things a little better. I did the prednisone with my last pregnancy and while it didn't work as well as when I first took it - I still had d and some bleeding - it made things bearable. I didn't like it one bit but it allowed me to have my son.  

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/28/2009 4:05 PM (GMT -6)   
Wow... Yeah, I'm going like 10 times a day and it is almost always bloody. It is like a little at a time. Sometimes, I'll go to the bathroom and feel like I'm done but then once I get off and back to bed, I have to go again. I though it might be constipation because of the pregnancy. So I do my calcium every other day and try to eat more calcium. It isn't even as painful as it has been in the past. It is just a major sense of urgency. Mild pain when I go to the bathroom. It's not even all D; its like little pellets... and blood globs... :(

The prednisone worked for a few years but my last flare we were up to 60 mg and I am only 130ibs when I'm not flaring... I was like 112 when I was on 60 mg. And it gave me osteopenia... so they don't want to risk the bone loss... Also, I was at 60 mg for like 3 months before I tapered... It was bad. My moon face didn't even show, I was so skinny.

I am unemployed and it is difficult but bedridden doesn't bother me. My last flare lasted a LONG time and I basically stayed in bed... and on the toilet.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/28/2009 5:35 PM (GMT -6)   
Hi again to me,it sounds like you are constipated due to infamation in the rectum which is common in pregnancy and can make the UC much worse,I think movicol sachets are the best because it causes the bowel to absorb more water keeping the stools much softer rather than,other laxatives that move things along and can often be harsh and cause cramping pain,you need to drink a couple of extra glasses of water a day though.
Also you may consider some rectal meds again such as a cortisone enema these helped me quite a bit with the urgency issue,and if your feeling unwell and not moving around too much you can try gently massaging your stomach area in alarge circular motion sounds weird but helped me quite a bit,if you have ever thought of trying meditation now be a good time to get a book or cd on it you must be really stressed out,and that and listening to calming music can be helpfull too,we are all thinking of you,and sending good thoughts Anna

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/28/2009 5:51 PM (GMT -6)   
You could very likely have proctitis issues from the description of incomplete evacuation so you should get on rectal meds for that and it's totally safe to use even steroid based rectal meds (which for me work best and quickest) while pregnant, I used it during my pregnancy with no issues at all (or to the baby either) and like I mentioned I mostly had D in the beginning of my pregnancy.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/1/2009 10:40 PM (GMT -6)   
Liza D,

I'm sorry to hear about the Doctor's suggestion. I agree with the others that it's your decision. I'm sure you may find some kind of remission as the pregnancy goes on, also if you try Humira, it's totally safe to take while pregnant. I've gone over that with my Ob because my hubby and I are going to try for a baby this year sometime. I will be praying that all goes well with you.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 5/2/2009 7:36 PM (GMT -6)   
Liza D

Wow, what a difficult thing to be told. I too would recommend a second opinion....and a third and fourth from a variety of different types of docs (GIs, OB and High Risk OBs). I did a lot of research when I was pregnant and now breastfeeding re. drugs and UC and some docs seem to recommend things because they dont know the answers...not that your doc is doing that but with such a big decision it seems like a good idea to see what others say. I have another resource for you too. It is a program run out of the Hospital for Sick Children in Toronto, Canada (one of the biggest childrens hospitals in North America). They have a program called the Motherisk Program. Anyone can call in and speak directly and immediately with a counsellor who will tell you all the precautions related to a drug and pregnancy/breastfeeding. I called them every time my treatment changed during my pregnancy and now with breastfeeding. I will look up the number and post it again in a minute. jo

Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 5/2/2009 7:59 PM (GMT -6)   
Here is the phone number for Motherisk 416-813-6780. The website is www.motherisk.org if you want to know about the program. I looked Humira up in my Medications and Mothers Milk book (Dr Thomas Hale - probably the most significant researcher in relation to breastfeeding and drugs) and you are right that Humira is a catagory B for pregnancy.......category B is just about one of the highest that any drug can get for pregnancy short of say vitamins that have been extensively tested on pregnant women. I was on asacol and mesalamine enemas throughout my pregnancy both of which are category B for pregnancy. Prednisone, which many, many women are on during pregnancy is a category C drug and the vast majority of women who take during pregnancy have very healthy babies. I do not mean to say that it ok for you to take Humira because of course I am not a doctor and I dont know your circumstances, but I would definately get a second opinion. Good luck. Let us know what happens. jo
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