Hi - I'm new here. I've always had some GI "issues", but when I got pregnant 4 months ago and stopped smoking, things got really bad. Three months later, I got a diagnosis of lymphocytic colitis. So, I'm just starting to try to figure out what to do. Immodium didn't work, so the Dr. put me on Asacol. From what I can gather, they haven't really studied Asacol enough to know whether it harms the baby or not. So, I'm not especially excited to take it, and it doesn't really seem to be working so I think I'm going to stop. Plus, I saw this article and it kind freaked me out: http://www.ccfa.org/reuters/pregnancyoutcomes
I gather from reading these message boards that trying a gluten-free diet might be a good idea, though I dread the idea! I did test negative for the celiac panel, and pretty much every other test they did. The only thing besides the biopsy that came back abnormal was increased fat in my stool.
Anyone else been pregnant with this? Ideas?
newly diagnosed & pregnant
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome! I'm sorry you had to find us this way but you found a fantastic place to ask questions and get help from our collective experiences.
There has been some talk about nicotine but I can't remember what has been said. Hopefully someone will be able to remember that conversation.
Mary is a member of the board who also went through a preganancy with MC - I'm sure she will be around soon to answer any of your questions.
Many here are on gluten free diets and control their symptoms with diet alone, it may be an option for you, at least while pregnant.
If you have the time, read, read, read this site and learn all you can. There are many here who will answer direct questions if you don't have the time to research.
Again, welcome. Don't be shy about asking questions, we have heard it all!
Mars
There has been some talk about nicotine but I can't remember what has been said. Hopefully someone will be able to remember that conversation.
Mary is a member of the board who also went through a preganancy with MC - I'm sure she will be around soon to answer any of your questions.
Many here are on gluten free diets and control their symptoms with diet alone, it may be an option for you, at least while pregnant.
If you have the time, read, read, read this site and learn all you can. There are many here who will answer direct questions if you don't have the time to research.
Again, welcome. Don't be shy about asking questions, we have heard it all!
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Congratulations on being pregnant and for stopping smoking!!!!! Check out www.enterolab.com and www.finerhealth.com If you are malabsorbing fat you just may have gluten intolerance. Going gluten free is really not all that difficult. There are lots of substitutes for gluten. If you can quit smoking you can do most anything. Talk to your OB-
GYN about taking medications while pregnant. Check your mutlivitamin and make sure it says no wheat or gluten free. Unless it says that it just may have some in it. Check your lipstick. Everything. I guess that is if you are going to try a gluten free diet. Good luck!
Pat
GYN about taking medications while pregnant. Check your mutlivitamin and make sure it says no wheat or gluten free. Unless it says that it just may have some in it. Check your lipstick. Everything. I guess that is if you are going to try a gluten free diet. Good luck!
Pat
Zoolio-
Welcome, though I am sorry you had to join us! I was diagnosed in 2000 with Collagenous Colitis, and had my daughter in 2002. She is a healthy, happy five year old!
Don't worry about that article - the reference to "poor prenatal outcomes for people with IBD" really refers to Crohn's and Ulcerative Colitis, which are more serious forms of IBD with higher rates of all sorts of complications. I asked my GI about MC and pregnancy - he said there wasn't much data on it since most patients are post-menopausal women...(I was diagnosed @ 33...)
I took Asacol for the first half of my pregnancy. Both my GI, OB and high-risk OB (who I saw b/c I was 35) assured me it was safe. Inexplicably, at about the halfway point of my pregnancy, I became constipated - so I discontinued the Asacol, and have not needed it since
I'd gone gluten-free about a year earlier, and noticed a *little* improvement - but still needed the meds. I'd also had malabsorption with an increased fecal fat score... I think it was a combination of the GF diet over time (to allow healing) combined with pregnancy hormones that did the trick...
I did have a problem with preterm labor (but this was my third child - number 2 was born 7 weeks premature in 1998, well before I had *any* type of GI issue. The MC was in remission when the PTL started, and none of my docs thought it was at all related - just another bit of medical "rotten luck"...) The trickiest part was the hospital bedrest and the gluten-free diet.
You need to be sure you stay well-hydrated if you are having significant D. I was also watched carefully to make sure I was gaining appropriately. I also found it helped to eat a fair amount of yogurt/take a probiotic - anything to increase the population of good bacteria in the gut can be helpful!
I'd be happy to answer any more questions you might have! When are you due? We had another pregnant member - Christine - but she hasn't checked in since she first told us she was pregnant....People get busy with *life* and disappear sometimes for awhile....
Again, welcome and congratulations on the pregnancy!
Mary
Welcome, though I am sorry you had to join us! I was diagnosed in 2000 with Collagenous Colitis, and had my daughter in 2002. She is a healthy, happy five year old!
Don't worry about that article - the reference to "poor prenatal outcomes for people with IBD" really refers to Crohn's and Ulcerative Colitis, which are more serious forms of IBD with higher rates of all sorts of complications. I asked my GI about MC and pregnancy - he said there wasn't much data on it since most patients are post-menopausal women...(I was diagnosed @ 33...)
I took Asacol for the first half of my pregnancy. Both my GI, OB and high-risk OB (who I saw b/c I was 35) assured me it was safe. Inexplicably, at about the halfway point of my pregnancy, I became constipated - so I discontinued the Asacol, and have not needed it since
I'd gone gluten-free about a year earlier, and noticed a *little* improvement - but still needed the meds. I'd also had malabsorption with an increased fecal fat score... I think it was a combination of the GF diet over time (to allow healing) combined with pregnancy hormones that did the trick...I did have a problem with preterm labor (but this was my third child - number 2 was born 7 weeks premature in 1998, well before I had *any* type of GI issue. The MC was in remission when the PTL started, and none of my docs thought it was at all related - just another bit of medical "rotten luck"...) The trickiest part was the hospital bedrest and the gluten-free diet.
You need to be sure you stay well-hydrated if you are having significant D. I was also watched carefully to make sure I was gaining appropriately. I also found it helped to eat a fair amount of yogurt/take a probiotic - anything to increase the population of good bacteria in the gut can be helpful!
I'd be happy to answer any more questions you might have! When are you due? We had another pregnant member - Christine - but she hasn't checked in since she first told us she was pregnant....People get busy with *life* and disappear sometimes for awhile....
Again, welcome and congratulations on the pregnancy!
Mary
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Wow! What a lot to have on your plate. But Congrats on the pregnancy, bummer on the MC.
Christine is the one I think who started MC after quitting smoking too. I think, many of us have an underlying condition that gets triggered by some stressor. With the high fat scores, it's very likely you have food sensitivities such as gluten (IMHO). And then to stop smoking, probably trigger you into the MC.
But, look at the bright side of this. YOu can find your road to healthiness and reduce the risk of other problems cropping up, either from the smoking or from foods that aren't agreeing with you. Many think MC is an autoimmune reaction and that can hurt various other parts of your body over the long term. For me I get horribly stiff joints when I eat gluten. In hind sight have probably been gluten sensitive for much longer than I realized (i.e., before the MC).
You've found a very helpful support group here. Knowlegable and just fun. If you decide to go gluten free, many of us can support you there too and it's fun for those of us who are gf to kick around new ideas for foods to eat. And gf is becoming more mainstream than it was even 3 years ago.
Katy
Christine is the one I think who started MC after quitting smoking too. I think, many of us have an underlying condition that gets triggered by some stressor. With the high fat scores, it's very likely you have food sensitivities such as gluten (IMHO). And then to stop smoking, probably trigger you into the MC.
But, look at the bright side of this. YOu can find your road to healthiness and reduce the risk of other problems cropping up, either from the smoking or from foods that aren't agreeing with you. Many think MC is an autoimmune reaction and that can hurt various other parts of your body over the long term. For me I get horribly stiff joints when I eat gluten. In hind sight have probably been gluten sensitive for much longer than I realized (i.e., before the MC).
You've found a very helpful support group here. Knowlegable and just fun. If you decide to go gluten free, many of us can support you there too and it's fun for those of us who are gf to kick around new ideas for foods to eat. And gf is becoming more mainstream than it was even 3 years ago.
Katy
Your doctor can also do other tests as well. I have discovered on this site that not all of us with MC have gluten intolerance although most do. Some have a bacterial overgrowth, or lactose intolerance or fructose intolerance or thyroid problems. There are hydrogen breath tests to check for bacteria, lactose, and fructose. Have you been checked for parasites? If your doctor won't do these tests find another one. I sure hope you have someone in your life who is giving you lots of emotional support. I am so sorry this is happening to you. Not the pregancy, that can be a wonderful thing but can be stressful emotionally and physically!
Pat
Pat
Hi,
and welcome to our board. You've already received a lot of good information and advice, so I have only a little to add. As I recall, Magyar, is another member, (who has not posted in some time), who became pregnant after being diagnosed with MC. You can read her posts by doing a search by author, for her username.
Warnings about the use of certain meds during pregnancy probably err on the safe side, but this is understandable, whenever the health of a fetus is involved. For example, it is known that the corticosteroids cross the placental barrier, and are transmitted by breast milk. However, the risk of certain corticosteroids adversely affecting a fetus by transplacental action, is relatively low, especially for budesonide, (Entocort), which also just happens to be one of the most effective, safest treatments for MC that is currently available. Probably, the risk of transmission of corticosteroids to a baby is much higher during breastfeeding, than it is by means of transplacental activity.
Having said all this, please note that I am not recommending the use of any of these meds. Especially for someone who is pregnant, controlling symptoms of MC by diet alone, is surely a much safer form of treatment. If remission cannot be achieved in a "reasonable" amount of time by diet alone, however, then the use of a med might be advisable, especially if symptoms are severe. Here are a few links that discuss the use of meds suitable for treating MC during pregnancy. Note that some patients have much better luck with Pentasa, than with Asacol, even though they are both based on the same active ingredient.
http://ibdcrohns.about.com/cs/pregnancy ... ncyibd.htm
http://www.obfocus.com/reference/Formul ... sonide.htm
http://www.medicinenet.com/prednisone/article.htm
Be aware that most of us here consider Prednisone to be the drug of last resort, since it comes with a relatively high risk of serious side effects, and a serious "dependency" problem. Entocort works almost as well, and is a much safer drug, since it becomes active only after it reaches the lower third of the small intestine and the colon, whereas Predinsone is a systemic drug, and affects virtually the entire body.
If I were in your position, I think that I would try cutting all sources of gluten and casein, (the protein in dairy products), out of my diet. That may be all that you will need to do. Also, since many/most of us have a malabsorption problem until our gut is able to heal, be sure that you take a sublingual, (dissolve under the tongue), B-12 supplement, as insurance that you have an adequate supply in your body, (because anemia is another problem that is common with MC), and it would probably be a good idea to take a vitamin D supplement, (since a deficiency of vitamin D during pregnancy can cause autism in the unborn baby, and many/most of us are short of vitamin D). Be sure these vitamin supplements are gluten free, however, as has already been mentioned in a previous post.
Good luck with perfecting your treatment program, and getting your life back on track.
Tex
and welcome to our board. You've already received a lot of good information and advice, so I have only a little to add. As I recall, Magyar, is another member, (who has not posted in some time), who became pregnant after being diagnosed with MC. You can read her posts by doing a search by author, for her username.
Warnings about the use of certain meds during pregnancy probably err on the safe side, but this is understandable, whenever the health of a fetus is involved. For example, it is known that the corticosteroids cross the placental barrier, and are transmitted by breast milk. However, the risk of certain corticosteroids adversely affecting a fetus by transplacental action, is relatively low, especially for budesonide, (Entocort), which also just happens to be one of the most effective, safest treatments for MC that is currently available. Probably, the risk of transmission of corticosteroids to a baby is much higher during breastfeeding, than it is by means of transplacental activity.
Having said all this, please note that I am not recommending the use of any of these meds. Especially for someone who is pregnant, controlling symptoms of MC by diet alone, is surely a much safer form of treatment. If remission cannot be achieved in a "reasonable" amount of time by diet alone, however, then the use of a med might be advisable, especially if symptoms are severe. Here are a few links that discuss the use of meds suitable for treating MC during pregnancy. Note that some patients have much better luck with Pentasa, than with Asacol, even though they are both based on the same active ingredient.
http://ibdcrohns.about.com/cs/pregnancy ... ncyibd.htm
http://www.obfocus.com/reference/Formul ... sonide.htm
http://www.medicinenet.com/prednisone/article.htm
Be aware that most of us here consider Prednisone to be the drug of last resort, since it comes with a relatively high risk of serious side effects, and a serious "dependency" problem. Entocort works almost as well, and is a much safer drug, since it becomes active only after it reaches the lower third of the small intestine and the colon, whereas Predinsone is a systemic drug, and affects virtually the entire body.
If I were in your position, I think that I would try cutting all sources of gluten and casein, (the protein in dairy products), out of my diet. That may be all that you will need to do. Also, since many/most of us have a malabsorption problem until our gut is able to heal, be sure that you take a sublingual, (dissolve under the tongue), B-12 supplement, as insurance that you have an adequate supply in your body, (because anemia is another problem that is common with MC), and it would probably be a good idea to take a vitamin D supplement, (since a deficiency of vitamin D during pregnancy can cause autism in the unborn baby, and many/most of us are short of vitamin D). Be sure these vitamin supplements are gluten free, however, as has already been mentioned in a previous post.
Good luck with perfecting your treatment program, and getting your life back on track.
Tex
Welcome to the board and congratulations on your pregnancy! You will a group of very supportive people here with answers to your questions. I've been fairly recently diagnosed and am still learning.
After reading Mary's post, I wanted to mention that my daughter has Irritable Bowel Syndrome, a condition some consider to be a misdiagnosis for MC. She is pregnant with her second child. During both pregnancies, her IBS has completely subsided. Once she's delivered, the IBS returns. You may find that as your pregnancy progresses, your MC will improve, as it did with Mary.
Good luck, and keep us posted on your progress!
After reading Mary's post, I wanted to mention that my daughter has Irritable Bowel Syndrome, a condition some consider to be a misdiagnosis for MC. She is pregnant with her second child. During both pregnancies, her IBS has completely subsided. Once she's delivered, the IBS returns. You may find that as your pregnancy progresses, your MC will improve, as it did with Mary.
Good luck, and keep us posted on your progress!
You never know what you can do until you have to do it.
Thanks everyone! Really glad to have found this website!
I had a visit with my OB today & he was reassuring about the Asacol. He said basically the vast majority of medications don't pass into the placenta, and especially a drug like Asacol which works in the intestines he thought should be fine. I haven't even given it a week to work yet, so I figure I'll stay on it a bit longer. I do fear I may be allergic. I've been feeling a little itchy & I am allergic to sulfas, which I read can be an indicator that you're more likely to be allergic to Asacol.
My Dr. did test me for a bunch of parasites & vitamin deficiencies, but I never had a breath test. While I was trying to get diagnosed, I did go lactose-free for a few weeks with absolutely no change in symptoms. I was on the brat diet for a while and that also didn't really change anything, but I never tried going gluten-free. I think maybe after the holidays I'll try going gluten-free for a while. How long did you all go before you noticed a difference?
I had a visit with my OB today & he was reassuring about the Asacol. He said basically the vast majority of medications don't pass into the placenta, and especially a drug like Asacol which works in the intestines he thought should be fine. I haven't even given it a week to work yet, so I figure I'll stay on it a bit longer. I do fear I may be allergic. I've been feeling a little itchy & I am allergic to sulfas, which I read can be an indicator that you're more likely to be allergic to Asacol.
My Dr. did test me for a bunch of parasites & vitamin deficiencies, but I never had a breath test. While I was trying to get diagnosed, I did go lactose-free for a few weeks with absolutely no change in symptoms. I was on the brat diet for a while and that also didn't really change anything, but I never tried going gluten-free. I think maybe after the holidays I'll try going gluten-free for a while. How long did you all go before you noticed a difference?
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Tessa
- Rockhopper Penguin
- Posts: 774
- Joined: Thu May 26, 2005 2:49 pm
- Location: Málaga, Spain (Costa del Sol)
- Contact:
Hi
Welcome to the board and congratulations on your pregnancy!
You have found a very supportive board with people who really care for others. They have helped me a lot and although I am not able to suggest ideas on your question, I am sure that you will find the help you need from others (which you had already - I´ve read the posts and I can see that you had some very good suggestions)
Thanks for sharing. I am looking forward to hearing about your progress.
Take care,
Love,
Tessa
Welcome to the board and congratulations on your pregnancy!
You have found a very supportive board with people who really care for others. They have helped me a lot and although I am not able to suggest ideas on your question, I am sure that you will find the help you need from others (which you had already - I´ve read the posts and I can see that you had some very good suggestions)
Thanks for sharing. I am looking forward to hearing about your progress.
Take care,
Love,
Tessa
DX Secondary Adrenal Insufficiency= Panhypopituitarism,POTS & MC. Anaphylactic reaction to foods & some drugs.
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
Gluten & Dairy free diet+hydrocortisone, Florinef, Sea Salt, Vit B Complex, Potassium, Sodium, Magnesium...
Zoolio,
I had the breath tests and was positive for fructose and negative for lactose BUT when I did Dr. Fine's tests I was positive for casein intolerance as well as gluten and soy. Casein is one of the proteins in dairy as opposed to the sugar (lactose). I do get reflux if I eat dairy so I don't eat it and I am also still trying to heal my intestines. It just doesn't agree with me.
Congrats on the baby girl! I have a daughter and a son. Love em both!!!! My friends that only have boys seem to miss having a girl. Is this your first child?
Pat
I had the breath tests and was positive for fructose and negative for lactose BUT when I did Dr. Fine's tests I was positive for casein intolerance as well as gluten and soy. Casein is one of the proteins in dairy as opposed to the sugar (lactose). I do get reflux if I eat dairy so I don't eat it and I am also still trying to heal my intestines. It just doesn't agree with me.
Congrats on the baby girl! I have a daughter and a son. Love em both!!!! My friends that only have boys seem to miss having a girl. Is this your first child?
Pat
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Congrats on th Baby and stopping smoking, I thionk that's great. I took asacol for quite awhile, and have been off meds for 2 years and I have occassional flares, nothing too serious. Welcome to the group!
Hugs Oma
Hugs Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
to our site!! I'll chime in and say that I'm another who stopped smoking (Jan 2004) and a short while later MC (Lymphocytic) reared it's ugly head. Of course, I seem to have experienced ALL the possible triggers for activating the monster, including a longer than usual bout of antibiotics, extreme stress in the months just prior, use of proton pump meds and use of NSAID's.
I took a combo of prednisone (don't recommend that one) and Asacol for 3 months, then Entocort and Asacol for about 3 months and have maintained on Asacol alone for about 3 years now. I would take Entocort again if needed but hope I never have to even think about prednisone again.
Anyway, the point I wanted to make is that Asacol alone in the beginning may not cause improvement in your symptoms for quite some time. I would definitely go GF at least along with the Asacol and the diet can take quite some time to work also. Please don't get discouraged, although I know it's hard not to.
I am certainly no doctor but I would think the Asacol wouldn't hurt during pregnancy. Just my uneducated opinion.
Good luck to you and Congratulations are due too!!
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill