HealingWell
Search Close Search
☰

Crohn's & Hormones

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/8/2009 11:12 PM (GMT 0)

I have had Crohn's for 30 years now.  I've been on Asacol, Sulfasalazine, and of course, our favorite, Prednisone.  I am currently taking Entocort and have been for years now, two 3mg tablets daily.  I have had my ups and downs, but have a wonderful husband and friends who understand.  I'm a very optomistic person.  However, the last 5 months have been hell for me.

I am 51 years old and retired in December (my job was very stressful).  Good thing too, because I just would not have been able to work.  Because I was in remision I was surprised when I started getting bloating and gas and then pain.  But it seemed different than my regular flair-ups.  I wasn't getting puky.  I could eat.  And I had added symptoms like really bad headaches, couldn't sleep and PMS like never before.  I went to see my Dr. and eventually had a saliva hormone test done.  In the meantime my doctor put me on Prednisone because I really needed some relief from the stomach pain.  My hormone test results showed that my estrogen was at the high end of the range, my progesterone low, and my cortisol and DHEA were low.  My doctor thinks the hormonal problems were irritating my Crohns.  So, she put me on Progesterone caps.  10 days on the caps and I started getting swollen feet and calfs.  Stopped the Progesterone caps (I had had previous blood clots due to the pill in my teens and didn't want a repeat) and went on the Progesterone cream.  Things did improve until I went off the prednisone.  The last three days have been hell again. 

I see my Crohn's specialist at the end of June and hope he can figure this out or send me to someone who can.  The interesting thing about my DHEAS and Cortisol hormones that are low are that DHEA and Cortisol are they are produced by your adrenal glands that regulate your immune system and control inflammation.  They are also associated with chronic illness.  This means low levels of these may contribute to immune system disfunction by stimulating inflammation!  Interesting!

If anyone has any experience with any of this, I'd really appreciate hearing from you!!!!  Everytime I thing I have things figured out.....Bam..... turn

Posted 6/8/2009 11:17 PM (GMT 0)
The only thing I can say is that what I've read from hormones and any autoimmune disease is that they can make it go to an extreme either way. Kind of like when a women gets pregnant and her Crohn's gets better or, in my case, considerably worse.
It would be worth researching. I know I sound like a broken record recommending it so much, but I would at least consider reading Donna Nakazawa's 'Autoimmune Epidemic.' It discusses a wide range of triggers for diseases and their following years of flares. Hormones was topic she touched upon with various doctors from Johns Hopkins University.
Posted 6/9/2009 12:44 AM (GMT 0)
Thanks! I will get the book you suggested from the library.
Posted 6/11/2009 1:23 AM (GMT 0)
Hi there. I don't have any good advice, but being a 50 year old woman with Crohn's, I'm very interested in your story. My periods are becoming more irregular and my Crohn's symptoms and PMS are getting progressively worse. I didn't get diagnosed with Crohn's until I was 48, and my GI doc said sometimes hormones can be related. What kind of a doc did you go to for the hormone testing? Keep me updated on what you learn. Thanks, I hope you are feeling better soon!
Posted 6/11/2009 2:05 AM (GMT 0)
This is interesting. I had very mild symptoms starting about the age of 40.  D maybe 1-2 days per week, no pain or other symptoms. I started skipping periods and going into perimenopause at age 45 when Crohn's hit hard, and that was when I was diagnosed. I'm 52 now and not much better. I've aways felt there was a connection somehow. I have been thinking lately about getting my hormones checked because of this. I was thinking some kind of hormone therapy might help.  Sounds like an interesting book LMills thanks for posting it.
Posted 6/11/2009 2:45 AM (GMT 0)
I have heard of symptoms getting worse with periods. So it makes sense to me that it would get worse around the change.
Posted 6/11/2009 3:37 AM (GMT 0)

Entocort can lower cortisol. Endocrinologists can help analyze these types of issues.

Posted 6/11/2009 3:45 AM (GMT 0)
This is all very interesting. I recently had a peri-menopausal blood test done. I've been feeling similiar as of latley. Bloaty, Gasy, Extended and still hungry. Off and On I feel nausea but not like when I've had a blockage. Even a little cramp down my legs like period cramps....although I've had a hysterectomy.
My test came back negative. Not in menapause. I was so surprised! I had the hysterectomy in 05 ...the same time I was diagnosed with Crohnes.
I've been retaining so much water latley too. Seems like night is the worse with the ankles swelling and knees. My regular MD decided to put me on a water pill. When I asked her why I'm retaining water she said might just be glands and me getting older.
My question is...when you have blood work done for peri-meno..can your hormones change through-out the month? And therefore could the test be insufficient? Should I have my obgyn look at my ovaries?
Anyway, Thanks for the book suggestion...definatley going to order it.
Posted 6/11/2009 6:07 PM (GMT 0)

gumby44 said...Hi there. I don't have any good advice, but being a 50 year old woman with Crohn's, I'm very interested in your story. My periods are becoming more irregular and my Crohn's symptoms and PMS are getting progressively worse. I didn't get diagnosed with Crohn's until I was 48, and my GI doc said sometimes hormones can be related. What kind of a doc did you go to for the hormone testing? Keep me updated on what you learn. Thanks, I hope you are feeling better soo

Hi! I got my hormone saliva test done through my family doctor (she gets the kits).  It did cost me $250.  Don't just get blood tests done because they are not reliable enough.  The saliva test has to be done 7 days before your period.  I would suggest keeping track of your menstrual cycle on a daily chart with symptoms, etc.  In Canada you can order the test from Rocky Mountain Analytical lab in Calgary, Alberta or you can have them send your family doctor the info for the kits.  Their website is:  http://www.rmalab.com/

My periods the last year have really changed.  I have spotting for a few days and a couple of mild flow days.  Lots of headaches, my body temperature is warmer although I'm not yet bothered by hot flashes.  My major problem has been the bloating, cramping, pain and PMS.  And it's never the same month to month.  I am on Progesterone Cream and I think it's starting to work.  Unfortunately before the cream I was on Prometrium (progesterone micronized caps) and I had swelling in my legs and a sore throat gland and I got real constipated (never, ever been constipated and it was scary), so I stopped it.  But the cream seems to be working because the last 3 days have been great (no pain) and I'm due to get my period in a couple of days so I'm keeping my fingers crossed.  Very fortunate for me, my estradiol (estrogen) was at the high end of range because I can never take estrogen hormonal replacement.  I had blood clots at age 20 and had to have one removed (due to being on the pill) which means I cannot take estradiol in any form or I could get another clot.  Progesterone is much safer but I was still having swelling problems.  The cream is natural and has to be made up in a compounding pharmacy (in Canada it's about $30 per month).

Hope this helps.  If you have any more questions, don't hesitate to ask or e-mail me.

Love and Light,  Carol

Posted 6/11/2009 6:52 PM (GMT 0)

yori said...
This is interesting. I had very mild symptoms starting about the age of 40.  D maybe 1-2 days per week, no pain or other symptoms. I started skipping periods and going into perimenopause at age 45 when Crohn's hit hard, and that was when I was diagnosed. I'm 52 now and not much better. I've aways felt there was a connection somehow. I have been thinking lately about getting my hormones checked because of this. I was thinking some kind of hormone therapy might help.  Sounds like an interesting book LMills thanks for posting it.

      Definately get a saliva hormone test done (not blood test)!  Hormonal therapy might really help you and your Crohns.  Eliminating dairy food and red meat helps (I have a hard time with this one).  Take omega 3 oil 1,000-2,000 per day and when cramping take Vitamin C and Magnesium (100 mg every 2 hours when cramping....but be careful because this can cause loose bowels in some people).  Good luck and don't hesitate to email me!

 

Posted 6/11/2009 7:04 PM (GMT 0)

njmom said...

Entocort can lower cortisol. Endocrinologists can help analyze these types of issues.

Thank you.....I wasn't aware of that so I did some research.  I've been doing some reading on Cortef and will talk to my specialist when I see him at the end of the month.  I'm going to have alot to talk to him about, lol!!!
Posted 6/11/2009 8:10 PM (GMT 0)

flowery said...
This is all very interesting. I recently had a peri-menopausal blood test done. I've been feeling similiar as of latley. Bloaty, Gasy, Extended and still hungry. Off and On I feel nausea but not like when I've had a blockage. Even a little cramp down my legs like period cramps....although I've had a hysterectomy.
My test came back negative. Not in menapause. I was so surprised! I had the hysterectomy in 05 ...the same time I was diagnosed with Crohnes.
I've been retaining so much water latley too. Seems like night is the worse with the ankles swelling and knees. My regular MD decided to put me on a water pill. When I asked her why I'm retaining water she said might just be glands and me getting older.
My question is...when you have blood work done for peri-meno..can your hormones change through-out the month? And therefore could the test be insufficient? Should I have my obgyn look at my ovaries?
Anyway, Thanks for the book suggestion...definatley going to order it.

You really need to get a saliva hormone test done.  My doctor said the blood tests just aren't accurate enough.  The test should show your result and the normal range for each hormone tested. It doesn't come back positive or negative.  Usually people who have a hysterectomy need Estrogen therapy.  Was it a full or partial hyserectomy (do you have any ovaries)?  I would want a clear answer as to why you are retaining fluid (some people have thyroid issues) or it could be water retention causing bloating and edema which can occur in menopausal women either during perimenopause or post menopause.  In perimenopause your cycle can change dramatically month to month.  I've had months where I only had a handful of good days, and they're different than the previous month.  Hormone testing has to be done around day 21 of your cycle (day 1 being the first day of your period).  Since you don't get a period, it's harder to know when to test.  Identify a time frame that you feel the worst and test then.  Good luck and e-mail me anytime!

 

Posted 6/11/2009 11:46 PM (GMT 0)
Hi
I am glad I found this post.
I have been in remission for 3 years but this year I have been sick off and on all year I was atributing some of my symptoms to menopause I will be 50 this year and have had pre-menopuase for about 10 years. Since the end of last year I started to have irregular periods and then this year I started with the night sweats and the issues with sleeping. Along with these issues I started to have shortness of breath, fatigue swelling in my ankles, muscle cramps in my legs, feeling like I am stuffed up all the time now I am having pain in my lower back off and on.
I recently had a physical and the only thing they could find was that my iron is very low. I have also been seeing a Naturopath to help with the sleep issues and night sweats which seem to be working but I still have all the other symptoms. I have since made appointment with my speciliast to discuss these symptoms but I have a feeling that it is my Crohn's acting up.

So I have a feeling menopause has a role to play in my crohn's now acting up.
Posted 6/12/2009 12:39 AM (GMT 0)

jacobsnana said...
Hi
I am glad I found this post.
I have been in remission for 3 years but this year I have been sick off and on all year I was atributing some of my symptoms to menopause I will be 50 this year and have had pre-menopuase for about 10 years. Since the end of last year I started to have irregular periods and then this year I started with the night sweats and the issues with sleeping. Along with these issues I started to have shortness of breath, fatigue swelling in my ankles, muscle cramps in my legs, feeling like I am stuffed up all the time now I am having pain in my lower back off and on.
I recently had a physical and the only thing they could find was that my iron is very low. I have also been seeing a Naturopath to help with the sleep issues and night sweats which seem to be working but I still have all the other symptoms. I have since made appointment with my speciliast to discuss these symptoms but I have a feeling that it is my Crohn's acting up.

So I have a feeling menopause has a role to play in my crohn's now acting up.

I think you're right! Your symptoms are peri-menopausal (menopause is when you haven't had your period for one year). I have low iron once in awhile and I have to take B12 shots every two months because it won't absorb in my system.  I had the back pain as well. Isn't mid-life wonderful (I just turned 51), lol!  I am doing so much better the last three days!!  I think the Progesterone cream is finally working (took 2 weeks) and I'm sleeping much better.  Keeping my fingers crossed!!!  No pain or stomach problems either.  I won't allow myself to get too excited though as I know how things can change in an instant, but I am enjoying this reprieve!!

Posted 6/12/2009 1:02 AM (GMT 0)
This is very interesting. My Crohns has got cosiderably worse at the same as my periods. I am no longer regular, spotting here and there and 3-4 cm cyst every month. I have always been someone who never even had to take Tylenol during my periods to where now I am almost having to stay home from work 1 day. And at the same time my Crohns has got much worse with lymph nodes showing in my intestines on my last ct scan. The dr is wanting to put my on Humira but I can't help wonder if these 2 things are related.

Intersting!!!
✚ New Topic ✚ Reply