I found a pattern with my colitis symptoms-menstruation!

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KIMEEEE
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/18/2008 9:20 PM (GMT -6)   
I would get a dizzy/weird feeling in my head a lot. I thought it was the Asacol.  I had it paticularly bad last month while i was at a hair appt (so much so that I wasn't even able to get my hair done!), so I stopped taking the Asacol completely. Started to feel great! I thought, "wow, it was the asacol, I am never taking that again". 28 days later, I woke up with diarrhea, cramping, and started my period. Later that day, it dawned on me that the last time I felt like that was when I went to get my hair done, so, I looked at my calendar and it was the same day that I started my period. I looked back at May and while I was in San Francisco for a few days and had the same symptoms-I was on my period as well! Looked back to April because I had gone to the river and remembered feeling that way with diarrhea (thougth it was all the drinking), and yep, I was on my period. I don't know why I didn't realize it before.
 
Anyway, I looked online, there wasn't much on it but I found a few articles about it. Some say there is a definite correlation with Uc and menstral cycle and that it could excerbate symptoms and that more studies are being done.
 
It's day three of my cycle and feeling better with less diarrhea and cramping. It seems the only time my colitis is  really bothersome is for the week of my period. Now I know when to plan my vacations (although I am going on a cruise in Nov. and calculated that I will be on my period then :( )
 
You probably already know of this and it is old hat to you, but I am fairly new to this site and have never read anything about it on here. So, anyone experience any worse problems during menstruation???????????
 
Now I am wondering if I should start taking the Asacol again since it never even seemed to affect my symptoms.
 
Thanks,
Kim
Female
 
Diagnosed with mild colitis Feb 2008
 
Asacol 400mg 2x a day
 
 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 7/18/2008 9:31 PM (GMT -6)   
Its definitely common among female UCers. I ended up going on birth control because of it and it really helped me.
Sam
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
Maya Angelou


KIMEEEE
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/18/2008 9:41 PM (GMT -6)   
Wow, that is a bummer. It's bad enough to have periods but to have UC and periods really sucks!! I would hate to have to go on birth control pills again, i am 43 and have benn off BC for about 6 years.
Female
 
Diagnosed with mild colitis Feb 2008
 
Asacol 400mg 2x a day
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18015
   Posted 7/18/2008 9:47 PM (GMT -6)   
Funny thing for me is I've had crohn's colitis for 17 yrs and was DX with IBS 5 yrs ago as well and that's about the time when I really noticed an impact on my periods was during the time of the IBS DX...our hormonal changes (during mensturation) is definitely impacted for many who suffer with either IBD or IBS.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


KIMEEEE
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/18/2008 9:50 PM (GMT -6)   
I am now wondering if i don't go back on the Asacol will my colitis get continually worse??
Female
 
Diagnosed with mild colitis Feb 2008
 
Asacol 400mg 2x a day
 
 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 7/18/2008 10:41 PM (GMT -6)   
I actually don't mind the BC. Things are sooo much easier! :)
Was asacol working for you aside from the increase in symptoms with your period? If it did then go back on it. If it didn't talk to your GI. Maybe its time for something different. Only you and your GI can figure out what works best :)
Sam
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
Maya Angelou


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 7/19/2008 7:19 AM (GMT -6)   

 

I have posted on several sites about my colitis exaserbations lately being only at time of cycle but lately it continues now throughout the month as well...

My research, and history, leads me to the possibility of it being bowel endometriosis...

I had an oophrectomy for severe endo in 1993, one year later my first bout of rectal bleeding during NSAIDS and zoloft treatment for a neck injury...

My surgeon told me he removed a 4 pound mass along with my left ovary and tube and it was attached to the bowel...

I am still trying to reason with all of my illnesses, symptoms and timelines that they all occured in hopes of fidning when this actually started and how...I am leaning toward bowel endo and have two experts in mind to see in the future...

Someone else recently posted about this on here, I don't recall the title of the thread...I replied but I don't think they responded...I will see if I can find that thread, maybe there are some answers there...

PS. Asacol made me sicker, GI always said it was an exaserbation of my disease and to continue taking...I figured out that I was having the severe reaction and am no longer 'tolerant' of Asacol or the new Lialda...I will also never consider birth control pills...Since I have almost lost my life to drugs, I have chosen to do the rest of my time as naturally as possible...Some docs say I may get well come menopause...From their mouth to God's ears... tongue I wil check back, great thread here...

Peace~MamaDove

 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 7/19/2008 8:30 AM (GMT -6)   
Yes, this recent flare I just had started a week before my cycle and ended abrupbtly after my cycle started flowing. I am having peri-menopausal symptoms, so I truly believe the flare I just had was triggered by all the hormones going bonkers. 
 
I noticed last month at the same time that I had a gushy amount of bright red bleeding on the TP after a bm the day before my cycle started and the same thing happened this month.
 
I have discussed the correlation with my GI nurse and she 'poo-poos' it, but next time I see my GI doc, I'll talk to him about it. 
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Canasa suppositories 1000mg, as needed
Cortenemas, as needed
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 22068
   Posted 7/19/2008 8:42 AM (GMT -6)   
This has actually been discussed many times here on the forum but just not recently :) I have always had an increase of symptoms before I would start my period but as the years progressed, my Uc would get super bad and it would throw me into a flare. I was also having extreme menstrual cramps in addition to my Uc symptoms so I finally went to see a GYN and he did a D&C first. The month after that, it was wonderful! My Uc symptoms was almost nonexistant as well as the menstrual cramping. But then the next month it got a bit worse and then the month after that I was in extreme pain again. So that is when me and my doc decided that I would do well with an endometrial ablation. I'm 38 and already have 2 kids with no intention of having anymore so this was a good choice for me. I no longer have periods and I have managed to get most of my Uc symptoms under control. My GI has told me that many of his patients found the correlation between hormonal surges and Uc flares to be the main reason they flare during that time. Heck even healthy women may tend to have looser bm's during their time so it's no wonder it makes us miserable!
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KIMEEEE
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/19/2008 11:02 AM (GMT -6)   
You guys are all so great to reply. It really helps to know I am not alone in this. I feel really bad with what you all go through. My symptoms are  so mild compared to what some of you have. I pray that I don't get worse because it's bad enough just having mild symptoms. I pray for all sufferers of UC, chrons, etc...!
 
I need to go back and see my GI. I have only seen him one time at my colonoscopy. He told me nothing on the phone afterward about having colitis.  He had told me I have some sort on infection and to take asacol for 2 months(maybe he told me after the colonoscopy while I was still drugged...lame, if so). . Everything was fine for a few months then I started feeling pretty bad/weak and went to my primary. She said it's from having colitis! That was a shocker, I didn't even know what it was! I was never told about before then. That's how I found this site, by researching it on the internet.
 
I definitely need to go back. I don't even know what type of UC I have. It would be good to have some answers.
 
Thanks for listening,
Kim
 
Female
 
Diagnosed with mild colitis Feb 2008
 
Asacol 400mg 2x a day
 
 
 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/19/2008 7:05 PM (GMT -6)   
MamaDove, i find ur post very interesting. I to have had endo issues. Have chronic ovarian cysts and lost 1/3 of one ovary. Have had endo removed 3x during surgery and suffered infertility as a result of the endo. After one of my surgeries, my ob/gyn told me that my endo was so bad that it had attached and was pulling different organs and had them attached to the bowels and stomach. Hence all my abdominal pain.

I currently have a new cyst and a range of bowel pain that likely should not be. My gyn does not want to operate unless we have to (if the ovary twists or if cyst bursts and bleeds) due to my UC. He is always afraid of my swollen bowels and will not operate via laperscopy....he will only open via my c-section scar which makes recover much harder...

anyways, just thought the endo was interesting. hang in there girls!
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 7/24/2008 1:54 AM (GMT -6)   
Oh yes!! My UC is most definately affected by starting my period.  I had asked my GI about this once, and he confirmed that it does happen.  Its the hormones that cause it.    I started having remicade infusions in Nov, and it put me in remission.   I would still get a few "issues" every month around my period,  but things would always resolve until this last month.     I started my period and my issues began,  welll they just continued until in a full flare!!   Now i'm anxiously awaiting my next remicade infusion on the 31st, and my period is due right about that same time.    I just wonder what my next course of action would be...surgery on my colon or surgery to have my female parts yanked!!  Can I opt for both?????   
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. (Complete remission from Nov. 07 to July 08 d/t Remicade) hoping for remission again after this current flare.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08, 4/10/08, 6/08, 6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 15 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.
http://www.wearecrohns.org/christie67


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 566
   Posted 7/24/2008 5:01 AM (GMT -6)   
Me to i have only had U/C for 5months but i can honestly say every month my periods are getting worse they are much heavyer with large clots and a lot of cramping also u/c seems to get worse until period finished
sometimes unsure if pain is from period or u/c when its bad i take co codamal which helps a bit .
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started Salofalk supps 1gm 26/6/08
  Mesalazine 400mg 2 tabsx2 day


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/24/2008 7:54 AM (GMT -6)   
Isn't it fun to be a woman! ;o) I can't add anything other than to let you know no you aren't alone. I am wicked bad with my UC the few days before I start to cycle and then by day 2 things are getting more comfortable and that's with the NuvaRing!
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


karianne
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/27/2008 11:24 AM (GMT -6)   

I am so glad I found this site, I did not put all of this together for myself until finding this site....I am still undiagnosed with colitis.  4 years ago I went in for surgery to remove a ruptured ovarian cyst and the dr discovered my intestines were "glued" to my ovaries and uterus (they also had to reconstruct a new ovary--which produces eggs quite well now). I was told I had endometriosis.  I had no abnormal pain before it and after this surgery is when the intense abdominal pain during menstruation began and blood and mucus came from places they never did before.  At this time I also started taking clomid to kick up ovulation 3x unsuccessfully and then began 3 years of unsuccessful In Vitro procedures (we are now hoping to adopt  :-)  )  My pain during each period became worse. I went to the dr insisting on a colonoscopy during my period and he looked at me like I was nuts.  The pain became so intense I ended up going to the emergency room and demanding it be done. They finally took me seriously. I was so sure that the dr must have knicked my intestines during the ovarian surgery and that endo must have gotten into my intestines.  They did the colonoscopy and it came back INCONCLUSIVE! AHHHHH!!!!!

I continued with InVitro and each month the colitis pain (or endo pain as I thought)during my period became so intense I would have to get up for work 2 hours early to try to relieve the pain and would continue to be in the restroom 15 times a day at work (very difficult as a elem. teacher). The pain became so bad it wasn't unusual for twisting abdominal cramps, uncontrollable vomiting, horrible back pain, and freezy icing chills to occur during my colitis bouts. Sometimes you feel like your intestines are dry-heaving.  You know your hubby really loves you when he holds your hand through that.  I really felt like I was going to die and drs weren't giving me any answers. Darvocet and otc gas meds just weren't doing the trick, and I don't like taking pain pills. I really thought I had endo.  I read several books, I had many, many of the symptoms.

My PCP, gyne and reproductive endocrinologist all looked at me cross eyed when I explained my symptoms were only during my period....These were Chicagoland dr's and my repro guy was even on Oprah(so I was told)...I mean if these professionals couldn't figure it out!  It just shows your really have to take charge and research your own health issues. Maybe I didn't scream loud enough about what I was going through.

One night I woke up screaming and twisting in pain only to discover multiple large cysts had ruptured again. I was back and forth to the dr and in bed for a week with fever, sweats and pain. After healing I continued with unsuccessful InVitro and the repro dr wanted to do a "clean up" surgery to remove any endo because they could find no other reasons the InVitro wasnt working. The kicker? He found no active endo in my body. Did I ever really have it? was it colitis all along? Obviously I know I have polycystic ovarian syndrome, there is no disputing that, but what was causing the pain? My friend with Crohn's said I had similar experiences to hers, but hers wasn't menstrual only. 

I began seeking alternative treatments. I started taking Evening Primrose Oil (helped a bit with pain) and going to accupuncture twice a week. I consider myself a huge skeptic, but I will say that accupuncture changed my life.  I went 2x a week for 6 months and it was the best thing I have ever done for myself.  My menstrual colitis pain went from a 10 to a 3 or 4 on a bad day.  My accu girl giggled when I said I finally felt like I had normal girl cramps again. I did my final InVitro round during this time and I still feel the benefits from the accupuncture. 

I am sure it helps that I have been off of the fertility drugs for a year now and I still have not been diagnosed with colitis by a dr, only myself.  But the accupuncture did help with the colitis symptoms during my InVitro process.  Has anyone else had onset colitis with fertility drugs?


artsymommy
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/31/2011 9:35 PM (GMT -6)   
Wow I'm so glad I found this! Several months ago I went to the ER with abdominal pain. It kept coming back in the same place, severe stabbing pain in my side. It felt like the cramp you get from running, only worse. They did a CT scan and found transverse colitis and they also found pneumatosis intestinalis, which is an air bubble in the intestinal wall. The ER doctor told me I needed surgery. I had to find a primary doctor so I could get a referral to a GI dr. When I went to the primary doctor, he looked at the CT findings and immediately blew it off saying it was all minimal and probably wasn't what was causing my pain and prescribed me antidepressants. He said depression was causing my pain :/ He scheduled another appointment and I started keeping a journal. When I told him the pain seemed to come with my period, he began treating me like a hypochondriac. I received the appointment in the mail 4 months ago for the GI Dr., My appointment is December 21st 2011, I received that appointment in march 2011!!!! So I will continue to wait and continue to worry until then. I knew that wasn't normal menstrual pain! I wish I could find a doctor who cares but at least here they all seem to want to get you in and out as quickly as possible, and write you off as crazy when you really need medical attention.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 7515
   Posted 7/31/2011 9:58 PM (GMT -6)   
Artsymommy, start a new post and introduce yourself. That's a ridiculous story about your treatment so far. I'm sorry you've had to suffer so long!

I think most of us have a flare up of IBD symptoms around our period - it's just something we live with. Some take the pill to avoid the hormonal swings.
*******************
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.

chrissy72
Regular Member


Date Joined Apr 2011
Total Posts : 188
   Posted 7/31/2011 10:07 PM (GMT -6)   
I'm fairly new to UC(diagnosed in April of this year). I too, have noticed a correlation between my menstrual cycle and colitis.


Has anyone here ever noticed more rectal pain or pain in the perineal area closer to your periods? I get a weird pain and it feels like the feeling you have down there after you push a baby out. I do have a uterine fibroid. I get it checked by ultrasound every year during my annual exams. I used to have a lot of bleeding during my periods but that's subsided a lot now that I take folic acid. I take extra folic acid due to having the MTHFR gene mutation. I'm 38 so I think at some point I may need to consider a uterine ablation if the bleeding ever gets worse again.

I find it appalling how most of us are treated by our doctors. I wish they would take our concerns seriously.
Dx with Proctitis


Supplements:Omega 3 Fish Oil, Iron/VitC, Liquid D3, Culturelle, Folic Acid, Biotin

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 8/1/2011 7:12 AM (GMT -6)   
 
I ditto what kazbern said.
Welcome to the forum, and please do open a new thread and see how others can help you with their advice.
 
Typical doctor behavior: oh it's all in your head, let's put you on anti-depressants.... :(
 
You need some better doctors.
Good luck.

 
Dx with UC in Sept. 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.Diet consists of mostly only protein: protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g, chia seeds,5-Loxin.VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance. But Transdermal LDN is working!!

Hoshi~
Regular Member


Date Joined Jan 2011
Total Posts : 189
   Posted 8/1/2011 3:18 PM (GMT -6)   
I've *always* had trouble with my period - horrible cramps and diarrhea - long before the UC. I was convinced I must have endometriosis with the amount of pain I was in and set out to find a doctor who would take my issues seriously and not just write it off as 'normal girl stuff' and try to put me on the pill and send me away.

That's how I found my wonderful GP, who sent me for an ultrasound and didn't find anything wrong. (I read recently that an ultrasound can't confirm no endo??) I was satisfied that she tried, and went back on the pill, and then found the three month kind. So that's now I deal with it now, avoidance and Tylenol with codeine (also thanks to my wonderful doctor know hows I can't take any OTC painkillers except Tylenol.)

Post-UC I think my symptoms actually got worse the days before my period starts. For a while it was exactly three days after my last pill I'd have horrible cramps and diarrhea, but with so long in between it's hard to find the pattern and as soon as I do it changes!

I'm not looking forward to have to go off the pill (to get pregnant). I wish there was a pill with all the benefits of birth control without the actual birth control part!


To the person who said evening primrose oil - do you take it every day or just close to your period to relieve pain?
~ Ulcerative Colitis diagnosed November 2010 : better but not *better*

Current meds: Lialda x 2, Librax x 3-4, Endocort x 3, Pamelor x 50mg before bed, nightly Rowasa enemas
Fiber capsules x 3 daily

Not UC related: Lamotrigne x 100mg, pantoprazole x 40mg, Quasense (birth control - 4 periods a year!)

*Jen*
Veteran Member


Date Joined Jul 2005
Total Posts : 502
   Posted 8/2/2011 12:50 AM (GMT -6)   
First off, definitely yes to worse symptoms when I have my period. I've always had horrible cramps and would take a ton of advil(which of course now I know is a no no). I would get an "upset" stomach which I thought was from the cramps. Fast forward a few years and started getting blood. Then flared. :( Stinks. It is worse for me during pregnancy, after I give birth, and after I stop breastfeeding, so I know hormones play a HUGE part in mine. Why isn't anyone studying this?? Man...

Red - Thank you so much for talking about your endometrial ablation. I'm 37(today!) and also have 2 kids and won't have any others(hubby is fixed). I've had horrible heavy and frequent(usually 25 or 26 days) periods, so I have been considering having this done. You just convinced me! I could hug you right now!
Diagnosed: 
Officially Diagnosed with UC in June 2003.  Have had stomach issues since 1989.  Unknown if they are related or not.  Have mild/moderate UC.  Have had 6 flares, the last one caused by giving birth.  Currently back in remission!  Only taking 6 Asacol a day.   Will take Rowasa enemas as needed. Colozal did not work for me.  Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!
 
 


TIRED_OF_BEING_SICK
New Member


Date Joined Sep 2011
Total Posts : 2
   Posted 9/6/2011 10:54 AM (GMT -6)   
WOW DIDNT REALIZE HOW FAR BACK THIS POST WENT BUT ANYHOW. I FOUND A PATTERN TODAY AS WELL. LAST MONTH I WAS HOSPITALIZED WITH C.DIFF COLITIS. I GOT SICK WHEN I STARTED MY CYCLE. THIS MORNING I WOKE UP FINE BUT AS I STARTED TO BLEED MORE AND CRAMP MORE THE COLITIS SYMPTOMS CAME BACK. I AM SO GLAD I FIGURED THIS OUT BECAUSE IT CAN BE TREATED WITH BIRTH CONTROL. I HOPE EVERYONE IS WELL!

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2142
   Posted 9/6/2011 1:03 PM (GMT -6)   
I get diarreah w/my period sometimes. Happening to me today, just got back from a mad dash to the bathroom
UC Pancolitis: dx'd 2000; 1st Remicade 4/26/11, 2nd 5/13/11, 3rd 6/9/11, 4th 8/5/11, next 9/27/11.Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's. Current meds: Imuran, Lisinopril, Diovan, Calcium + Vit D, Calcitriol & probiotics.

TIRED_OF_BEING_SICK
New Member


Date Joined Sep 2011
Total Posts : 2
   Posted 9/6/2011 3:31 PM (GMT -6)   
im sorry i forgot to mention that i do not have a confirmed diagnosis of UC. they gave me an ultrasound, and a colonscopy and endoscopy and had my tissue biopsied. the doctor pretty much assured me that i didnt have UC or Crohn's.

Ellie10
New Member


Date Joined Sep 2011
Total Posts : 15
   Posted 9/8/2011 3:55 PM (GMT -6)   
I get a lot of pain near my period. Until my Colitis started, I was beyond normal. My period was 4 days, never heavy and no cramping...Now I think that halfway through I could use a blood transfusion and wish that I had bought stock in Tampax. turn hahahaha. There is definetly a direct link.
If I am in a flare up there is also a lot of pain with sex for me. My poor husband is super about it though. Im lucky in that reguard.
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