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Crohn's Disease
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Posted 9/14/2011 1:06 AM (GMT 0)

I was recently diagnosed with Chrohn's last month (August 2011).  I had a lot of pain, in my rectum, pain after eating and was seriously uncomfortable in my lower abdominal area.  After several vists to several doctors, two ER visits, Xrays with barium, colonoscopy and several blood tests they finally figured out what had been going on...Chrohn's.  I have been put on Asacol, 800mg 3x/day.  After doing a bunch of research it appears that I am very fortunate that my Chrohns was discovered before it got really bad or needed hospitalizations/surgery.  I am still discovering many things associated with this disease and have a few questions....

1. My pain and discomfort seems to come in full force when I am nearing ovulation and hangs around for about 1-2 weeks, goes away for about a week and then starts again around the next ovulation time.  Has anyone else noted this?

2. I have been on Asacol for 3 weeks now.  I haven't had any major side effects.  However my period is late this month.  My period is like clockwork and only time I have missed is when pregnant.  I have taken two pregnancy tests and they were negative.  Has anyone noticed missed or late periods with Chrohn's or on Asacol. 

3. How will I know I am in remission?  Will I be completely pain and discomfort free or have mild discomfort etc? 

4. My husband and I were trying to have a baby when this all came about.  I have read that when in active Chrohns there is increased chance of miscarriage and/or preterm birth.  Can anyone share their experiences.

I am sorry for all these questions.  It is so much to take in and I have so many questions.  Thanks for listening....

Posted 9/14/2011 2:30 AM (GMT 0)
I can only tackle #3 - remission should be pain free, IMO. You may or may not have certain other symptoms (BM frequency, loose stools, gassy, etc.) relating to certain types of foods.
Posted 9/14/2011 4:43 AM (GMT 0)
don't be sorry about the questions. that's what we're all here for! remission is probably more of an individual determination...some might consider fewer bm's, no bleeding, less pain etc to be "remission"...others would not think remission until all symptoms are totally resolved- no pain, no bleeding, normal bm's etc...remission gets tossed around here a lot, and i truly hope those that say they are in remission are...personally i have never gotten to the point where i've been able to say "wow i'm in remission"...for me it would mean being able to eat a meal then get in the car after, drive to a convert, listen to music for 3-4 hours, have a few drinks and make it home without even thinking about a bathroom...ahhhh a man can dream. haha. anyway welcome to the forum!
Posted 9/14/2011 2:51 PM (GMT 0)
Hi Sassyfraz - welcome to the forum.

I'm glad your DRs figured out what was going on. It's going to take a while to get all of the tweaking right so that you feel good - don't be afraid to call your DR to ask questions also. Many of us have been through adjustments in our meds if the first try wasn't quite right. Here's an attempt to answer some questions -

1. yes, most women notice their symptoms track along with their hormones. It makes sense - for one thing, progesterone is a long muscle relaxer and slows bowel function. Progesterone is highest toward the end of your cycle. Ovulation and menstruation both release prostaglandins in the pelvis, which can cause intestinal cramps/diarrhea, even in women without IBD. The relationship between estrogen and inflammation is something that most DRs will agree exists, but I don't know anyone who's defined it. So yeah, more fun for us ladies.

2. Late periods are usually caused by stress during the follicular phase (first two weeks of your cycle), when ovulation is delayed. Think about what you were doing 4 weeks ago - perhaps you were in the middle of testing, or just learning about your diagnosis. I would guess that you found all that somewhat stressful and I would not be surprised to hear that your period is late. Or maybe you're pg!

3. Remission to me means no symptoms. I haven't seen blood or mucous in years, but I still have joint pain, bowel urgency, motility issues and fatigue. So I don't say that I'm in remission. But I am feeling so much better than I did just a couple of years ago.

4. Whatever statistics you've read regarding Crohn's and miscarriage or preterm birth seem like they must be fuzzy. With severe Crohn's, you can have pelvic scarring and adhesions that make getting pregnant difficult. Crohn's is an autoimmune disease, and those with 1 are more likely to have another - I had difficulty conceiving because of some unknown ovarian dysfunction that most of my DRs thought was autoimmune (this was before I found out I had Crohn's). Also, if your Crohn's is not adequately treated you might be somewhat malnourished because of poor nutritional uptake. As hard as I found it to get pregnant, I was a very easy OB patient. In my personal experience, my pregnancies were terrific in terms of bowel function and it was after both pregnancies that I flared (in fact, it was rectal bleeding after the birth of my first daughter that sent me to the GI and ultimately led to my diagnosis).
Posted 9/14/2011 3:02 PM (GMT 0)
Hi sassyfraz and welcome to Healingwell. Sorry for the reason you have to be here though. Yes that time of month can make you feel bad with Crohns. I ended up getting a complete hysterectomy at 36 (was done having kids) because I was so miserable every month.

I think kazbern is right and that your period has been affected with testing etc or possibly you are already pregnant. I take Asacol myself.

Although my signature says I am in remission, I am not right now. But remission is a decrease in symptoms. Sometimes you will have a rough couple of days or so, but that is usually becuz you ate something that didn't agree or too much stress, etc.

As for pregnancy, get your flare quieted down first before getting pregnant. The thought is a healthy mom produces a healthy baby. And make sure you stay on your meds at all times, don't stop them when you are feeling better. If you do, you are just going to wind up getting sick again. We have had Moms take Prednisone, Pentasa or Asacol, Imuran/6mp and Remicade and Humira while pregnant and all had healthy happy babies.

Good luck and ask any and all questions you have. Hugs!
Posted 9/14/2011 4:38 PM (GMT 0)
Hi Sassy, welcome aboard.

Wow, you were dx 29 years to the month after I was. And I have had 2 normal pregnancies since with 2 healthy babies. My OB doubled up my prenatal vitamins because he was concerned with malabsorbtion, but other than that I had no issues. The only way to know if you are preg right now is to go to the doctor, home tests aren't always reliable this early on.

Yep, your period can have a huge affect on your CD symptoms. And some meds will have an affect also.
Posted 9/14/2011 5:28 PM (GMT 0)
Hello and welcome!

You've already received some great, informative answers. I just figured I would add my 2 cents. :-)

Since I was diagnosed in Jan. 2010, I have flared EVERY month right before my period. It sometimes only lasted for a couple of days and other months it lasted for a week or two.

I thought remission was just a lull in symptoms but when I had my first appointment with my new GI doc a year ago, I thought I might be in remission due to very few, if any symptoms. He did a small bowel series (the barium swallow icky thing) and it showed there was still a lot of active inflammation in my terminal ileum as well as other things that indicated I was far from in remission. Fast forward to current day. I've had bad flares since then and have been on Imuran for about 2.5 months. He said if this eliminates my symptoms, he will want to do another small bowel series to make sure there's no active inflammation left (I'm in "true remission). As others have said (and I have to agree) it seems that the definition of Crohn's remission can vary from person to person and doctor to doctor, but I'm going to follow my doctor's advice at this point. He said if there's still active inflammation (even without symptoms), then it's doing damage.

As for the pregnancy thing. I had Crohn's when I was pregnant with my son and the pregnancy actually eliminated all symptoms. It was a WONDERFUL pregnancy. As soon as I had him though, things went down hill rapidly. As others have said, MANY Crohn's patients have had successful, healthy pregnancies. :-)
Posted 9/14/2011 6:24 PM (GMT 0)
don't be sorry for asking all these questions!

#1, up until I found out I was pregnant, once a month I would get horrible, horrible, pains in my stomach, and would have to go on a liquid diet and percs for pain. My GI had an open MRI scheduled for me to see if it actually was active crohns or something to do with my period. He has currently postponed the MRI for 9 or so months (I'm 6 weeks pregnant & my symptoms have completely gone away.)

#2, you may want to inform your doctor about this. I have had a late period twice in my life. The first time, My period stopped, completley for 6 or so months, because I was not getting any nutrition at all. My crohns had flared up so badly it just stopped and I had to be hospitalized with TPN anda PICC line for a long time. The second time I was late was when I found out I was pregnant. Either way you should really contact your doctor.

#3, IMO remission means no symptoms, or thats how I feel it should be. I wouldn't really know though, as I have never been in remission.

#4, I was starting to think I had fetility problems, as it took a year for me to become pregnant, but like I said I am only in week 6, so fingers crossed everything goes smoothley.

good luck and I hope this helped somewhat.
Posted 9/16/2011 2:09 AM (GMT 0)
Thank you so much for all the responses. I am very grateful for finding this forum and feel put at ease reading everyone's experiences! Thanks again!
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