Tuesday, January 7, 2014

Birth Control & Crohns Disease / Ulcerative colitis

Ok. I know the topic is weird and personal but I really really need to tell people out there with ulcerative colitis and crohn's some info. 

I have recently gone to the lady doctor for the first time in my life because I wanted to go on birth control before I get married this Spring. 

They gave me Natazia. For completeness sake, here is the drug info:
  • 2 dark yellow tablets each containing 3 mg estradiol valerate
  • 5 medium red tablets each containing 2 mg estradiol valerate and 2 mg dienogest
  • 17 light yellow tablets each containing 2 mg estradiol valer ate and 3 mg dienogest
  • 2 dark red tablets each containing 1 mg estradiol valerate
  • 2 white tablets (inert)

I was taking it for a few days when I noticed my legs falling asleep really easily, and then it wasn't until my leg was literally not waking up as I was walking around a lot that I realized. 
birth control. legs falling asleep unnaturally. blood clots. I'M GOING TO DIE.
So I called my lady doctor and asked about that and they were like "that doesn't sound like a side effect of birth control but we will ask the doctor and call you back."

They called me back and said that I probably couldn't take any birth control pills if I was going to react that way, but it might just be a fluke. I was in denial of course. EVERYONE ELSE GETS TO DO WHATEVER THEY WANT AND THEIR BODIES ARE FINE.

So I was like, maybe it is a fluke. It's a cold winter. Maybe my legs are just getting really cold and falling asleep because they have less blood. So I asked if she thought it was just a fluke for sure and she was like, "well you can try it for a week longer and log if it happens again and which side of the body and where and call us back." so I was like, Ok, I'll do that. 

Then I started thinking that I probably wouldn't be able to take birth control and it wasn't a fluke because my body hates life. and I was like, maybe I should ask my GI if he knows about this?
 So I called the GI's office and was like, "This probably isn't related at all, but do you know if crohn's can affect anything with birth control? Or not let my body accept birth control easily?"

nurse: uhhh I don't think so. Yeah I'm pretty sure that has nothing to do with it. I mean I could ask the doctor but I don't think so. 

me giving up: yeah, you can ask him but I don't think it is either.

I stopped taking the birth control and after the sides of my legs went numb. Tonight, I decided to research the hell out of all of this. 

I found several things worth noting.  Granted, I used the internet run by cats, so don't take my word as golden, but I did try to read case studies and reputable sites. 
anyway, information found: 

If you have crohn's disease or ulcerative colitis, you are three times more likely to have blood clots. You are also three times more likely to have a relapse.

From all of the tons of replies I read from people with crohns about the birth control pill: 
You need a no to low estrogen pill. They have pills called Ultra low dose as well. 

I saw lots of happy responses from seasonisque and loestrin. Literally, the only two mentioned that anyone was happy with.

It is also possible to get a progestin-only pill. There are 8 types of progestin and some are safer than others. 
Here is a good reference for progestin (I'm copying info here in case link dies): 


1. Norethindrone

Norethindrone: Ortho-Novum 7/7/7 Photo (C) GSM
Norethindrone is a first-generation progestin of low progestational and slight estrogenic activity. It tends to be less androgenic than the second-generation progestins (levonorgestrel and norgestrel), but more androgenic than newer progestins, like desogestrel. It is available inmonophasic, biphasic and triphasic formulations. In low doses (any pill containing less than 50mcg of ethinyl estradiol), which is what most pills contain, this progestin improves lipid profiles by raising HDL and lowering LDL.

2. Norethindrone Acetate

Norethindrone Acetate: Junel 1.5/30 Photo (C) GSM
Norethindrone acetate is a progestin of low progestational activity and slight estrogenic affects. It is a first-generation progestin. It tends to be less androgenic than the second-generation progestins, but more androgenic than newer progestins, like desogestrel. The brand Estrostep was designed to more closely mimic a woman's natural menstrual cycle by providing increasing levels of estrogen with a constant progestin dose. It is the only triphasic brand with this progestin. This brand may be helpful for women who experience minor estrogen-related side effects such as nausea, migraines or fluid retention with other pill combinations.

3. Ethynodiol Diacetate

Ethynodiol Diacetate: Zovia 1/50E Photo (C) GSM
Ethynodiol diacetate is a first-generation progestin of medium progestational activity. It has minor estrogenic effects and little androgenic activity. Ethynodiol diacetate is a derivative of norethindrone, so it is easily converted to norethindrone within the body. Birth control pills containing ethynodiol diacetate tend to be associated with increased early or mid-cycle breakthrough bleeding and spotting as compared to other combination pills. However, higher estrogen dosages can counteract the likelihood of breakthrough bleeding, so pill brands that contain higher levels of estrogen can alleviate this side effect.

4. Levonorgestrel

Levonorgestrel: Seasonique Photo (C) GSM
Levonorgestrel is a second-generation progestin and is the most widely prescribed contraceptive progestin worldwide. It has high progestational and androgenic effects. Levonorgestrel negatively affects serum lipoproteins. Several low-dose estrogen brands containing this progestin are available. Levonorgestrel birth control has also been FDA approved for emergency contraception (such as Plan B One-Step and Next Choice). The FDA has stated that all combination pills with this progestin are safe and effective for emergency contraception under the Yuzpe method. The FDA has also approved three extended cycle pill brands that use this progestin -- Seasonale,Seasonique, and Lybrel.

5. Norgestrel

Norgestrel: Lo/Ovral 28 Photo (C) GSM
Norgestrel (a second-generation progestin) is a mixture of both an inactive and active isomer -- dextro-norgestrel (inactive) and levonorgestrel (biologically active). Norgestrel has high progestational and strong antiestrogen effects while also being high in androgenic activity. It may cause LDL cholesterol to be increased while allowing for HDL cholesterol to be lowered. The FDA has said that. However, none of the brands have specific FDA approval for this use.

6. Desogestrel

Desogestrel: Cyclessa Triphasic Pill Photo (C) GSM
Desogestrel is a third-generation progestin with high progestational selectivity, minimizing androgenic effects and estrogenic activity. It shows less negative impact on metabolism, weight gain, acne, and other side effects typical of older progestins. It shows positive effects on lipoproteins as seen by a slight rise of HDL cholesterol. Clinical trials show a possibly higher risk of non-fatal venous thrombosis with desogestrel pills versus those with levonorgestrel. Mircette (a low-dose estrogen/desogestrel pill) provides a shorter placebo interval, which may be helpful for women who have migraines, dysmenorrhea, or other negative issues during that week. A low estrogen/varying desogestrel triphasic pill, Cyclessa, is also available.

7. Norgestimate

Norgestimate: Ortho Tri-Cyclen Lo 28 Photo (C) GSM
Norgestimate, a third-generation progestin, has high progestational activity while showing slight estrogenic effects and tends to be less androgenic. It also has minimal effect on serum lipoproteins as well as on carbohydrate metabolism. The low androgenic effects of norgestimate have resulted in successful treatment of acne. In fact, birth control pills that contain norgestimate are the only ones FDA approved to help reduce acne. Ortho Tri-Cyclen Lo is a brand that provides norgestimate and a mid-level dose of estrogen. So this pill may be helpful in lowering side effects such as nausea and vomiting while not causing an increased incidence of spotting (typically associated with low-estrogen pills).

8. Drospirenone

Drospirenone: Yaz 28 Photo (C) GSM
Drospirenone is the only progestin derived from 17a-spirolactoneis. It helps suppress the secretion of the hormones that regulate the body's water and electrolytes. It also has low androgenic activity. Drospirenone and estrogen seem to lessen symptoms associated with mild PMS (increased appetite, negative mood, and water retention). Drospirenone may cause higher potassium levels, so women with kidney, liver, or adrenal disease should not use it. The brands YAZ and Beyaz Beyaz have 24 days of active pills and 4 days of placebo pills. This combination may cause fewer hormone fluctuations than typical pill packs. YAZ has also been FDA approved to help treat premenstrual dysphoric disorder as well as treat moderate acne in females aged 14 years and up.

I read this article a doctor wrote and he said "The safest option with regard to the risk of venous thrombosis is an oral contraceptive containing levonorgestrel combined with a low dose of estrogen"

Of course, new things / dangers / risks will continue to be discovered so remember to do your own research and make sure you get up to date information.

Extra bad stuff:
I read terrible things about Yaz and Yasmin (aka Gianvi, Loryna, Ocella, Syeda, Vestura, Yasmin, Yaz, Zarah)

Drospirenon - FDA concluded that drospirenon has a much higher risk for blood clots than other types of progestin. It is unsed in Yaz and Beyaz brands.

Two ultra low dose estrogen pills i found: 

low dose estrogen pills: 

There is a pretty good blog article written about some birth controls 

Ok, so basically. DO YOUR OWN RESEARCH. Before going to the doctor, before anything. And be aware of Crohn's reaction with whatever you take. And birth control with the medicines you are on. For me, I'm currently taking sulfasalazine and birth controls are less effective when taken with sulfa drugs. 

So be aware. and try not to let your body go numb and die. Or you know, anything else. 

Best wishes, and good luck.


  1. OMG.... I took Gianvi and had to stop because it was causing me elevated blood pressure and heartburn after only 2 days. Prior to that I was on Yaz/Yasmin(?).

    I now take Norethindrone. It CAN cause nausea, but regular doses (and taking them before bed) reduces that symptom. The functional medicine doctor wants me completely off birth control eventually (it messes with your endocrine system, I think?), but for now, it's necessary.

    I've heard good things about Loestrine too btw, but Loestrine is not covered by my insurance, so not an option for me anyways.