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Devastated.....I've been told to wean! :'-(

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I am an emotional wreck. I had a doctor's appointment this morning, I have ulcerative colitis that has been left untreated (for the most part) for quite some time, (shame on me) however I was having (almost) no symptoms and considered myself to be in remission for the past 2 years. I was taking sulfasalazine at some point in my pregnancy and for the 1st few months post-partum, my OB/GYN had told me it was safe and DS suffered no adverse side effects. Around the end of August I started having awful symptoms: nausea, diarrhea, gas, constipation, bloody/mucousy stool- all characteristic of U.C. so my husband made me an appt. with the G.I. and I went in today. Well I gave the doc the rundown and he re-prescribed me sulfasalazine, which I had told him wasn't really helping (I started taking it again with the onset of syptoms) so he upped the dose and said he was pretty sure it was safe to continue nursing on it but he had to go check, so I was content for about 5 minutes until he came back to the room and said it wasn't safe and he could prescribe me anything else because I have no insurance and the other meds are at least 800 dollars a month, which we cannot afford at all, so I asked how much the sulfasalazine would be signifacantly less and then said it wouldn't matter which I took anyway since they were all in the same family, and with DS being 14 months there really wasn't a need to continue! Grrrr. I was both distraught and enraged. Unfortunaley DH was with me when I was told all of this, and I had spent so much time convincing him to let me allow DS to self-wean. Well when we got to the car we started discussing and I tried to explain than most healthcare professionals are uneducated in the area of BFing and that I would try to make some calls and check LACTMED when we got home, but DH was adamant and said that the doc must know because he went and checked, this pissed me off.... A LOT! Of course I came home and checked LactMed and it said that weaning was not necessary, and that the child should just be observed for diarrhea and possibly blood in stool, however that it was a very rare occurence. DS is about 14 months old and I will be on prednisone for a month before starting the sulfasalazine, so the doc told me to have him weaned by the time I switch from prednisone to sulfasalazine, and neither DS nor I are anywhere near ready for that. ;'-( I don't know what to do, DH understands the benefits of BFing, but says I'm not going to be doing that if it's putting chemicals in our sons body that may cause him to have health problems later on. What I found on LACTmed works for me, I'm fine with observing (don't all moms do so in any case?) and the fact that I was already taking the medication previously and DS hasn't shown any side effects makes me feel comfortable enough to continue until such a time as we are both ready to be done. I AM SO LOST, I CAN'T TAKE IT. PLEASE HELP! Any advice will be greatly appreciated. TYIA :-)

by on Oct. 10, 2012 at 5:07 PM
Replies (11-20):
Cruz-s-mommy
by Amanda on Oct. 10, 2012 at 11:55 PM

It's not that DH is trying to control my decisions or be disrespectful towards me at all, it's his genuine concern for the health of our son. As a previous poster mentioned, of course since DH heard this from a medical professional, someone he's been trained to trust when it comes to the safety of medicine, so it is very convincing and much easier for him to believe than research that he hasn't received from a direct source. I have yet to present DH with the info I found on LactMed, and I will be calling the infant risk hotline tomorrow  and having him on that call with me as well as  the resources provided by all the other posters.  I just want to have have all the proper material, so he will be able to make sense of  how it would actually be more appropriate to continue BFing, as I have made sense of it. He is not controlling, he just needs to be educated further on the matter, as do most people.

Quoting MonicaV1982:

If DH is disrespectful enough to try and control your choices as a grown woman then you should really reevaluate your relationship. I'm not saying fathers should have no input, but from what I read this crosses the line.

Quoting Cruz-s-mommy:

Lol, too funny. I can't even do this myself, DS has what I refer to as "the unBREAKable latch." I can never get him off, he has to be the one to let go. Even if I wanted to, I couldn't wean DS in one month, I am still providing at least 90% of his nutrition and the process would just be too abrupt.

I am more concerned with it creating marital problems than anything and DH is very tempermental. It's just that we've worked so hard to get to where we are now, I don't want to send everything in reverse, I'm just trying to present the info in the most convincing way so DH  will be comfortable with DS nursing. It's like I feel like I have to convince the doc and have him tell DH there are no risks, but that is highly unlikely, especially since with all things in life come risks.

Quoting melindabelcher:

Whats your dh going to do unlatch him? I would just keep nursing and watch for changes. The biggest risk to him was when you were prego and taking the med

 

 


gdiamante
by Group Mod - Gina on Oct. 11, 2012 at 12:40 AM


Quoting Cruz-s-mommy:

I am an emotional wreck. I had a doctor's appointment this morning, I have ulcerative colitis that has been left untreated (for the most part) for quite some time, (shame on me) however I was having (almost) no symptoms and considered myself to be in remission for the past 2 years. I was taking sulfasalazine at some point in my pregnancy and for the 1st few months post-partum, my OB/GYN had told me it was safe and DS suffered no adverse side effects. Around the end of August I started having awful symptoms: nausea, diarrhea, gas, constipation, bloody/mucousy stool- all characteristic of U.C. so my husband made me an appt. with the G.I. and I went in today. Well I gave the doc the rundown and he re-prescribed me sulfasalazine, which I had told him wasn't really helping (I started taking it again with the onset of syptoms) so he upped the dose and said he was pretty sure it was safe to continue nursing on it but he had to go check, so I was content for about 5 minutes until he came back to the room and said it wasn't safe

LactMed differs, saying it's a "qualified" yes: 

Summary of Use during Lactation: 
Sulfasalazine and its active metabolite mesalamine are poorly excreted into breastmilk. However, rather high levels of the mesalamine metabolite N-acetyl-5-ASA appear in breastmilk and its effects on breastfed infants are unknown. Another sulfasalazinemetabolite, sulfapyridine, also appears in milk and infant serum. Bloody diarrhea has occurred in an infant whose mother was takingsulfasalazine and a few cases of diarrhea have been reported in infants exposed to mesalamine in breastmilk, although the rate is not high. European experts consider mesalamine derivatives to be safe during breastfeeding.[1] If sulfasalazine is required by the mother, it is not a reason to discontinue breastfeeding, but carefully observe breastfed infants for diarrhea. Other agents that do not contain a sulfonamide are preferred.

and he could prescribe me anything else because I have no insurance and the other meds are at least 800 dollars a month, which we cannot afford at all, so I asked how much the sulfasalazine would be signifacantly less and then said it wouldn't matter which I took anyway since they were all in the same family, and with DS being 14 months there really wasn't a need to continue! Grrrr. I was both distraught and enraged. Unfortunaley DH was with me when I was told all of this, and I had spent so much time convincing him to let me allow DS to self-wean. Well when we got to the car we started discussing and I tried to explain than most healthcare professionals are uneducated in the area of BFing and that I would try to make some calls and check LACTMED when we got home, but DH was adamant and said that the doc must know because he went and checked, this pissed me off.... A LOT! Of course I came home and checked LactMed and it said that weaning was not necessary, and that the child should just be observed for diarrhea and possibly blood in stool, however that it was a very rare occurence. DS is about 14 months old and I will be on prednisone for a month before starting the sulfasalazine, so the doc told me to have him weaned by the time I switch from prednisone to sulfasalazine, and neither DS nor I are anywhere near ready for that. ;'-( I don't know what to do, DH understands the benefits of BFing, but says I'm not going to be doing that if it's putting chemicals in our sons body that may cause him to have health problems later on. What I found on LACTmed works for me, I'm fine with observing (don't all moms do so in any case?) and the fact that I was already taking the medication previously and DS hasn't shown any side effects makes me feel comfortable enough to continue until such a time as we are both ready to be done. I AM SO LOST, I CAN'T TAKE IT. PLEASE HELP! Any advice will be greatly appreciated. TYIA :-)

Normally I'm all for "Dad needs to do the research."

In this case... I think your illness and the treatment might just trump that. Doesn't mean you have to go cold turkey... you might as well hand him a kinfe and tell him to chop off your breasts if that's what he wants.

One feeding per week till gone.

Having dealt with family members with Crohns and colitis, it's just not something I'd mess with.

MonicaV1982
by on Oct. 11, 2012 at 1:45 AM

Sorry, it's sounded like he gave you an ultimatum.

Quoting Cruz-s-mommy:

It's not that DH is trying to control my decisions or be disrespectful towards me at all, it's his genuine concern for the health of our son. As a previous poster mentioned, of course since DH heard this from a medical professional, someone he's been trained to trust when it comes to the safety of medicine, so it is very convincing and much easier for him to believe than research that he hasn't received from a direct source. I have yet to present DH with the info I found on LactMed, and I will be calling the infant risk hotline tomorrow  and having him on that call with me as well as  the resources provided by all the other posters.  I just want to have have all the proper material, so he will be able to make sense of  how it would actually be more appropriate to continue BFing, as I have made sense of it. He is not controlling, he just needs to be educated further on the matter, as do most people.

Quoting MonicaV1982:

If DH is disrespectful enough to try and control your choices as a grown woman then you should really reevaluate your relationship. I'm not saying fathers should have no input, but from what I read this crosses the line.

Quoting Cruz-s-mommy:

Lol, too funny. I can't even do this myself, DS has what I refer to as "the unBREAKable latch." I can never get him off, he has to be the one to let go. Even if I wanted to, I couldn't wean DS in one month, I am still providing at least 90% of his nutrition and the process would just be too abrupt.

I am more concerned with it creating marital problems than anything and DH is very tempermental. It's just that we've worked so hard to get to where we are now, I don't want to send everything in reverse, I'm just trying to present the info in the most convincing way so DH  will be comfortable with DS nursing. It's like I feel like I have to convince the doc and have him tell DH there are no risks, but that is highly unlikely, especially since with all things in life come risks.

Quoting melindabelcher:

Whats your dh going to do unlatch him? I would just keep nursing and watch for changes. The biggest risk to him was when you were prego and taking the med





eema.gray
by on Oct. 11, 2012 at 8:54 AM
1 mom liked this

Since you're not sure the med will help at all, can I suggest something radical?

There's an elimination-type diet that's shown remarkable results for people with all types of severe G.I. disease, media calls it a "paleo" diet.  You eat no grains (none, no rice, corn, wheat, quinoa, no grains at all), no dairy, and no sweeteners.  Many people also don't eat legumes or pulses (beans, peas) if they are trying to reduce or eliminate G.I. disease.  You get your protein from eggs, fish, red meat, and poultry; fats from animal sources, olive, and coconut oils, and your carbs from vegetables and fruits.  Some people eat seeds and nuts, but those too can be irritating if your gut is sensitive.

I can point you to some books and blogs if this sounds like something to try.

As for your current dilema, I wouldn't wean.  Practice the nod and smile for your doctor and insist your husband keep his mouth shut.

kitty8199
by Bronze Member on Oct. 11, 2012 at 9:02 AM
You're right drs don't know. The reason some things pass into milk and some don't is bc of the size off the molecule. If out isn't showing risk, the molecule is too big. Most 14 month old aren't nursing. Gi irritation risk is for infants, not toddlers. They study infants. If the drug says its ok. Then its ok.
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Cruz-s-mommy
by Amanda on Oct. 12, 2012 at 12:41 PM
It's not a matter of obeying DH, it's just that he believes in heeding the doctor's advice concerning the safety of the medication, after all the doctor went to medical school so how could he not know what's best?!? I realize though I may have worded poorly and what is posted here is not the sum of my marriage, which happens to be great actually, not just "good." The reason that it has been hard to get to where we are is because we have an intercultural relationship and in the past there have been language/contexts barriers that have caused misunderstandings, and while I may have to wotk a bit harder to get my point across without getting lost in translation I wouldn't trade my relationship for anything. I can see where DH is coming from and if the shoe were on the other foot, I would react the same way and have the same concerns.
Quoting larissalarie:


w
Cruz-s-mommy
by Amanda on Oct. 12, 2012 at 1:17 PM
1 mom liked this
Sure, all advice welcome and thanks for the suggestion. The problem here is that with my condition, I am not "allowed" meat, dairy (eggs included), nuts, and while fish would be permissible, just being in the room where fish is being cooked or a can of tuna being opened is enough to make me sick literally. These restrictions, however, for the most part do not bother me as I was a vegetarian long before being diagnosed. I am now an aspiring raw food vegan, cutting out milk helped immensely, especially sice I used to drink it at least 3-4 times a day, probaby 12oz at a time because it was "healthy" I was a milk junkie, lol. However now I still eat a lot of cheese, I'm addicted and just can't say no. I also eat a lot of grains and starches, and some artificially sweetened foods, so I can work on cutting those out, but it's just so hard to change from the diet you've led for so long! I am leaning more toward the Gerson method with my condition, which has had some pretty remarkable results as well. I really do't have as much faith in modern medicine as I do in nnutrition, especially since over time I will just need to put more chemicals ( meds) in my body as the dosage becomes less and less effective, and in the long run is sure to cause me other health problrms. Though the diet you mentioned will not work for me, I want to thank you for bringing it up, as a change in diet is something that I have to work on and definitely need be considered. quote name="eema.gray" id="0"]

Since you're not sure the med will help at all, can I suggest something radical?

There's an elimination-type diet that's shown remarkable results for people with all types of severe G.I. disease, media calls it a "paleo" diet.  You eat no grains (none, no rice, corn, wheat, quinoa, no grains at all), no dairy, and no sweeteners.  Many people also don't eat legumes or pulses (beans, peas) if they are trying to reduce or eliminate G.I. disease.  You get your protein from eggs, fish, red meat, and poultry; fats from animal sources, olive, and coconut oils, and your carbs from vegetables and fruits.  Some people eat seeds and nuts, but those too can be irritating if your gut is sensitive.

I can point you to some books and blogs if this sounds like something to try.

As for your current dilema, I wouldn't wean.  Practice the nod and smile for your doctor and insist your husband keep his mouth shut.

[/quote]
jamamama00
by on Oct. 12, 2012 at 1:29 PM

This is one of those posts that makes me glad that my husband never has a shittin' clue what is going on w/ me and the babies LOL. Have you tried to explain to your husband that medical professionals pretty much have to recommend against these meds, lest they put themselves in a vulnerable position for lawsuits? I'm also wondering if your DH is overreacting a little because he's worried about you guys.....I once let a fever slide for a week or so and ended up in the ER when DH had been pestering me to go see the doc all week. Now my DH is overly adamant that I seek medical attn when I am the least bit sick. Maybe it's the same w/ you?

aehanrahan
by Group Mod - Amy on Oct. 12, 2012 at 3:38 PM
I agree with the suggestion of having your husband call the infantrisk hotline. Give him the information on who Dr. Hale is. With the language barrier, he may not fully understand what lactmed says. I hardly understand it myself and English is my first language.
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eema.gray
by on Oct. 12, 2012 at 4:09 PM

Good for you thinking about nutrition rather than meds!  The Gearson Protocol has lots of solid anecdotal evidense behind it and with a focus on juiced food, should help your GI heal itself.  Make sure you take a good probiotic and that somewhere in your day, you get a couple good servings of protein.  You don't want your muscles wasting in the process of trying to get better.

Quoting Cruz-s-mommy:

Sure, all advice welcome and thanks for the suggestion. The problem here is that with my condition, I am not "allowed" meat, dairy (eggs included), nuts, and while fish would be permissible, just being in the room where fish is being cooked or a can of tuna being opened is enough to make me sick literally. These restrictions, however, for the most part do not bother me as I was a vegetarian long before being diagnosed. I am now an aspiring raw food vegan, cutting out milk helped immensely, especially sice I used to drink it at least 3-4 times a day, probaby 12oz at a time because it was "healthy" I was a milk junkie, lol. However now I still eat a lot of cheese, I'm addicted and just can't say no. I also eat a lot of grains and starches, and some artificially sweetened foods, so I can work on cutting those out, but it's just so hard to change from the diet you've led for so long! I am leaning more toward the Gerson method with my condition, which has had some pretty remarkable results as well. I really do't have as much faith in modern medicine as I do in nnutrition, especially since over time I will just need to put more chemicals ( meds) in my body as the dosage becomes less and less effective, and in the long run is sure to cause me other health problrms. Though the diet you mentioned will not work for me, I want to thank you for bringing it up, as a change in diet is something that I have to work on and definitely need be considered. quote name="eema.gray" id="0"]

Since you're not sure the med will help at all, can I suggest something radical?

There's an elimination-type diet that's shown remarkable results for people with all types of severe G.I. disease, media calls it a "paleo" diet.  You eat no grains (none, no rice, corn, wheat, quinoa, no grains at all), no dairy, and no sweeteners.  Many people also don't eat legumes or pulses (beans, peas) if they are trying to reduce or eliminate G.I. disease.  You get your protein from eggs, fish, red meat, and poultry; fats from animal sources, olive, and coconut oils, and your carbs from vegetables and fruits.  Some people eat seeds and nuts, but those too can be irritating if your gut is sensitive.

I can point you to some books and blogs if this sounds like something to try.

As for your current dilema, I wouldn't wean.  Practice the nod and smile for your doctor and insist your husband keep his mouth shut.

[/quote]


"I am only one, but I am still one; I cannot do everything, but still I can do something; and because I cannot do everything I will not refuse to do the something that I can do." ~~ Edward Everett Hale 1822-1909
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