Community Forum

I'm just curious if I'm the only one who has noticed a connection between IBD flare-ups and menstrual cycles.  Here's why.

I've had ulcerative colitis since I was 22 (I'm nearly 50 now) and have been in remission for over 10 years.  Oddly, remission occurred after a grapefruit-size blood cyst AND my left ovary were surgically removed.  My gastroenterologist and gynecologist seem to think it was just a coincidence.   

Now, my 13-year old daughter has also been diagnosed with ulcerative colitis.  Her flare-ups have been occurring monthly, just after her period subsides.  I've been curious about the correlation between shifting estrogen levels and the onset of an IBD flare-up.  I've already taken my daughter to a gynecologist and spoke with her about my theory.  She suggested putting my daughter on LoLoestrin but that first we'd need to have this cleared by both my daughter's neurologist (she also suffers from severe migraines) and her gastroenterologist.

While the neurologist had no issues with this plan, the gastroenterologist was very skeptical and concerned about "coagulation issues."  So, we've scrapped the LoLoestrin idea for now.

Since my daughter has had no luck with 5-ASAs, which fail to keep her in remission, and she can't stay on the Budesonide much longer, the GI doc wants to put my daughter on 6-MP next.  The health risks scare the heck out of me, but I can't stand seeing my baby suffer with these intense monthly flare-ups either.  She's already had to be hospitalized once after experiencing a severe flare-up that couldn't get under control without complete bowel rest.

Has anyone:
(A) had relief from IBD symptoms after beginning low-estrogen birth control?
OR
(B) had a positive experience with 6-MP?

I appreciate any thoughts/advice you can send my way.  Thanks. 

 Reply posted for demeter.

My symptom onset was Halloween 2011 and I went undiagnosed for nearly a year. During that time, I experienced flares during hormonal shifts - the three to four days ahead of my period were typically worse and symptoms subsided within a day or two of starting my period. I saw my gastro (who missed the diagnosis for eight months) and seven different OB/GYNs, one of whom suggested that it could be endometriosis as a result of my C-section delivery from August 2010. But because I wasn't showing the classic endometriosis symptoms, what the OB/GYN was essentially suggesting was "exploratory abdomenal surgery" and I wasn't really up for that (who is, really). My gastro finally gave me a diagnosis of Crohn's in September 2012 and I spent the next six months on varying doses of Asacol HD and prednisone - BUT I didn't experience any of the flares around my hormone shifts. As long as my Crohn's is even moderately controlled, I don't experience a flare associated with hormones.

I will echo others' statements and concur that the gastro is correct that IBD patients do have an increased risk of blood clots. I have had lengthy discussions with several OB/GYNs about the potential for birth control-related clots and they seem to be fairly evenly split about the actual risk. I had one doctor tell me that the general consensus (at least in his practice and in a more broad sense, the OB/GYN practice at large) was that benefits typically outweighed the risks of taking the medication. (His actual phrasing went something along the lines of "Ask a gynocologist - they'll tell you it's safe to take. Ask a hematologist and they'll go ballistic on you.") But he's one doctor and I'm not certain you could find that in writing anywhere on letterhead from the American College of Obstetricians and Gynecologists!  

 Reply posted for demeter.

I'm 31 and was diagnosed with CD at age 19.  I've been on almost every medication possible, and the only one that's consistently worked is 6MP.  Ive been on it for about 2 years now, and I generally like it.  I say generally because I still have random flare-ups, and also have to frequently get blood work done to make sure it's not affecting liver/kidneys.  It sounds scary, but I notice with most CD medications, they can have some bad side effects.

Also, for the past year I've been trying different BC's to help with problems during my periods.  I do think they help, my only problem is break-through bleeding.  But I definitely think they are worth trying!

 Reply posted for demeter.

Your gastroenterologist is right to be worried by the low dose estrogen pill.  New research shows that people with Crohns and Colitis have higher chances of developing blood clots.  My neice that has Crohns had a blood clot in her leg a few years ago after being on birth control and the treatment for the blood clot caused a very severe flare that had her ill for a year. 

I have had uc since I was 17 and am now 48.  I have recently held a remission with a combination of Remicade, Imuran and Asacol.  I did though have severe issues monthly when my hormones changed.  I had a hysterectomy last summer because of precancerous cells and the risk of them becoming cancer because of the Remicade and Imuran.  When they did the hysterectomy they found that I had endometiosis.  I never new that I had this.  The fact that all the uterine muscle is not swelling once a month and pressing on my intestines is heaven.  I still have my ovaries, so I have estrogen.  What I am thinking is that you may want to see if she has endometriosis before putting her on drugs.  Everything in that area is so close together and her monthly period may be causing severe swelling of the tissue.

 Reply posted for demeter.

Hi! I can 100% relate to your daughter. I am 17 and was diagnosed with UC when I was 14. I have flare ups for a few days before and after my period and during it too. My mom is convinced that there is a correlation and so am I.

I have not had very much luck with 5-ASAs either and the only thing that really helped me was prednisone(which makes me gain weight and look like a swollen marshmallow). My mom is very reluctant to put me on 6-MP (even though my doctor is really pushing it because I go to college in the fall of 2014 and wants me to go into remission as fast as possible). The 5-ASA that has helped me the most so far is the one that I am currently on, Lialda (4 pills, once a day). I have used both Asacol and Colozol, but I built up a tolerance to each. I know a girl who is a year younger than I am and was on 6-MP for a while, it did not end up working for her and she had to switch to Remicade, which is even stronger and more dangerous than 6-MP.

I have not tried a low- estrogen birth control yet, but I am planning on talking to my mom about starting me on one soon because of the symptoms that I get  around my period. My GI said that most women, in general, experience more bowel movements around the time of their periods, so I am going to take a pretty good guess and say that there is a correlation and that a low-estrogen birth control could probably help.