Crohn's + Period = Aaaaaaaargh!

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PGHCrohnsGirl

PGHCrohnsGirl

Joined
Nov 24, 2011
Messages
42
Location
Pittsburgh, PA
And not a pirate-y Aargh :arghmatey_ani:, either. Think, Charlie Brown when Lucy pulls the football away from him for the umpteenth time.

I've perused some of the other threads on this board, so, at least I know I'm not alone in this, which is very comforting. Sometimes it is horrible, sometimes it is just downright awful.

Period came earlier than expected this past month (2 weeks early), most likely due to stress related to family health problems going on at home in NJ, and it was the worst period I have had since I was a teenager as far as pain, discomfort, and bathroom trips go.

Usually, I get really bad cramps - uterine and intestine - and make frequent trips to the bathroom during the first two days on a regular, on schedule month. But this last one? It was the norm times 10. I just wish it had started over a weekend so that I could have stayed in bed with my school work and heating pads all over my lower abdomen and back.

I've mentioned this to my GIs (both my old GI in NJ and my new GI in Pittsburgh) and they both told me that it is fairly common for women with Crohn's to experience this kind of crap *no pun intended* during their period.

Does anyone have any recommendations on how to deal with the extra discomfort at this time of the month?
I greatly dislike when I have to put my life on hold due to Crohn's as it is and definitely dislike it when it is related to my period as well - it makes me feel like my body is revolting against me. :runaway:
 
My periods were like that when they started and even sent me vomiting for a while for the first couple of days. Don't need a GI to put yourself on birth control pills (talk to your GP or OBGYN) if you aren't already. Since I've been on them my periods have been little more than slightly annoying but only because I have to change a tampon. The diarrhea still comes sometimes but is never more than a few times on the first day or two and anti diarrhea pills and Advil (ya I still take it but you can take Tylenol instead) kill the diarrhea and pain.
 
I started having crazy periods last year and thought it was just crohns. Turns out I have uterine fibroids. Like I needed another thing wrong with me. You might have your gyno give you an ultra sound to check for that. It was nothing major that needed no be taken out but at least I know why I was hurting so bad.
 
There's the rub for me. I don't take birth control pills because of personal reasons. I've got such a finicky body as it is, and it is overly sensitive to many things and, they have hardly ever worked for me aside from the whole not getting pregnant part. That, and my NJ GI had told me that some Crohn's patients can't tolerate them that well. I also don't like the idea of pumping my body full of hormones and having withdrawl bleeding rather than an actual period. That and the negative effects of too much estrogen in the body scares me (though this is not to poo-poo *no pun intended* your choice to use BC. I'm glad they work for you :) )

I usually take ibuprofen (can't take tylenol due to a sensitivity to acetominophen) and it only works so well at the recommended dosing. Long story short: I have a lot of sensitivities to OTC products and other medicines as well. But I'll definitely keep trying anti diarrhea meds.

Any other things you might be able to suggest?

Also, does anyone else have any other suggestions? OTC painkillers, heating pads and AD meds only help so much.
 
TheBaby82 said:
I started having crazy periods last year and thought it was just crohns. Turns out I have uterine fibroids. Like I needed another thing wrong with me. You might have your gyno give you an ultra sound to check for that. It was nothing major that needed no be taken out but at least I know why I was hurting so bad.
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I could check w/ my OB-Gyn, nay, should. I'm still getting used to having health insurance since I've been without it for so long lol.

It just really sucks because I'll get severe pain in my right hip the day or two before my period hits, so, I guess at least I always have a warning, even if it isn't regular. Just sucks that it has to be so obnoxious.

And, yea, I know that feeling all too well. It is like how many medical conditions can we rack up here? Haha. On top of my crohn's, the related arthritis, my vitamin d insufficiency, and GERD I'm also rocking orthostatic hypotenstion, some form of anxiety, potential hypoglycemia, and a plethora of allergies. I had to get a USB medical ID bracelet to contain everything because there were too many things to engrave haha.
 
I can relate -- my period is a living hell on earth. I hate it and wish I could remove my own uterus with my pocket knife. I also have a large fallopian tube cyst that will not go away and that only adds to the pain when I have cramps. They've drained it twice and surgeons refuse to remove it because I've had four abdominal surgeries and they don't want to operate on me again. My OB-GYN suggested birth control, but I'm 36 and my husband had a vasectomy and I'm on a million different medications and did not want to add BC to the mix. I thought I'd paid my dues by taking the pill for so many years before and in between kids. Basically, I just take vicodin during the first two days, use a heating pad, and suffer through it. It's really an awful thing.
 
Sybil Vane said:
I can relate -- my period is a living hell on earth. I hate it and wish I could remove my own uterus with my pocket knife.
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haha, yea, sometimes it feels like it is trying to claw its way out anyways, so, might as well give it a little assistance, amiright?

Sorry to hear about the cyst :( That absolutely sucks.

Sybil Vane said:
Basically, I just take vicodin during the first two days, use a heating pad, and suffer through it. It's really an awful thing.
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Hmm. Vicodin might help on the awfulest months...though I'd have to take vicoprofen because of my codeine allergy/acetominophen sensitivity. I think the list of medicine I CAN take is way shorter than the list of medicine I can't. lol.
 
have you tried asking your primary MD or OB/Gyn for a script for a muscle relaxer? The uterus muscles contract during that time of the month to shed the lining and that is what is causing the pain. I took Flexeril originally for joint pain due to CD but then I discovered when I took it (just happened to be at the same time I had the worst period ever) it eased the cramping a whole lot. I took it at night to help me sleep as it does make me drowsy. Then during the day, I'd take 1/2 of Percocet as regular Tylenol wouldn't touch the pain.

When it would be really bad during the day, I would take a whole Percocet and just lie down and rest until it would kick in and then an hour later, a muscle relaxer if I wasn't going anywhere as it states on the bottle, you can't drive when taking it. Ask your MD, it can't hurt. Why suffer you know? good luck to you.
 
When crohns is in remission is period time still bad? Is there still d? Also maybe you have a cyst. They can mess with your cycle and cause pain. I have also heard that if you are in a flare it care mess with your cycles or just your meds could change when they come. I stopped nursing in aug and am still trying to get them reg.
 
PGH, I can relate. I know I don't want to have any more children, so I wish I could just get rid of it! A heating pad helps, but only while I'm using it. Same for a hot bath. When I had the mirena IUD, I didn't get periods, but instead after about a year and a half, I started getting yeast infections, which are a thousand times worse than periods.
 
I was on that mirena IUD...had to get it removed from all the excess bleeding it caused, then needed a D&C to take care of the subsequent withdrawl hemmorage. My GYN then suggested a low dose pill (low ogestral) to get me regulated. Then, I came up with a nutty idea that the GYN agreed with and appreciated...go on a 21 day cycle of the pill (no placebos) to eliminate my periods while I am trying to get into remission. It works for about 3 or 4 months, then I get a light period and stop the pills for 5 days, then go back on the pills for another few months. GYN says no health risks involved and I'm period free for a few months at a time. Since this is a low dose pill, it doesn't really mess me up emotionally either.
 
Bowmancrew said:
When crohns is in remission is period time still bad? Is there still d? Also maybe you have a cyst. They can mess with your cycle and cause pain. I have also heard that if you are in a flare it care mess with your cycles or just your meds could change when they come. I stopped nursing in aug and am still trying to get them reg.
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It is awful whether I'm in remission or not. I think it is a bit harder to gauge how awful when I'm not in remission because life just sucks generally then. It is the only thing that didn't get better with Humira. I very well might have a cyst, it is a possibility, the first time I went to the ER with Crohn's related pains, the CT scan showed that I had popped a hemorrhagic cyst from one of my ovaries, too.

I just have to get my rear in gear and get to an gyn out here in PGH. At least I can attempt to prepare myself for the various possibilities of what is causing awful periods before going to the doctor. :thumright:
 
LindaS said:
PGH, I can relate. I know I don't want to have any more children, so I wish I could just get rid of it! A heating pad helps, but only while I'm using it. Same for a hot bath. When I had the mirena IUD, I didn't get periods, but instead after about a year and a half, I started getting yeast infections, which are a thousand times worse than periods.
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Yes, yes, they are. I can still remember my first one and, oh, how I hated it. Funny thing is, one of the last times I went to the gyn, they told me that I had a very mild yeast infection, and, come closer to my period, like a couple of days before hand, before the pain hits, it sometimes feels like I have a mild one. *Shrug*
 
Snickerdoodle said:
GYN says no health risks involved and I'm period free for a few months at a time. Since this is a low dose pill, it doesn't really mess me up emotionally either.
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I have to speak up here. I just did a whole metric crap ton of research on menstruation for a co-curricular research group at my university to be submitted to the CDC proposing the use of menstruation as a vital sign. There isn't yet enough research to conclusively say that there are absolutely no risks involved with suppressing your menstruation. Too much estrogen can increase your risk for certain cancers and other health issues as it stands, and, there have not been enough studies to examine the long-term effects of continuous birth control use on the body.

Truthfully, the bleeding that results from the week of sugar-pills in a traditional pack isn't even the same thing as a period, it is withdrawal bleeding that results from a lack of the hormones in the birth control pill.

Don't mean to be a party pooper, but, the research hasn't gotten to a point where any doctor can safely say that there are absolutely no risks.

Also, I'm kind of glad in retrospect that I never got an IUD when I wanted one...with how fricken' sensitive my body is, I can only imagine the trouble that thing would have caused me.
 
My doctor also told me to stop my periods with the pill. He said that his other crohns patients have mentioned they flare during their cycle. I'm gonna try it. I got 2 fistulas during my last cycle. Not pretty and it scared the $hit out of me, literally I guess (lol). Anyway. Us crohnies do a lot of risky things to get "better". Who knows any of the long term effects of all these meds we take will be. To me whatever makes my meantime less painful and and presents me with some type of normalcy in life is worth the risk.
 
TheBaby82 said:
My doctor also told me to stop my periods with the pill. He said that his other crohns patients have mentioned they flare during their cycle. I'm gonna try it. I got 2 fistulas during my last cycle. Not pretty and it scared the $hit out of me, literally I guess (lol). Anyway. Us crohnies do a lot of risky things to get "better". Who knows any of the long term effects of all these meds we take will be. To me whatever makes my meantime less painful and and presents me with some type of normalcy in life is worth the risk.
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If life is miserable with a period, to the point that a Crohnie is flaring, and suppression helps eliminate the flares, then I find it to be worth it for that Crohnie.

I was just trying to say that it isn't accurate for a doctor to tell their patient that there is absolutely no risk, there just haven't been any studies of the long-term effects, as far as I know, and there haven't been enough studies of suppression in general, either. Suppression started off being utilized for patients who had medical conditions that required suppression - such as female Crohnie's or women with endometriosis. The only problem I have with it, besides it being misrepresented as being completely safe for everyone, is that it is being marketed to any menstruating woman, like we're all abnormal for having a period :rolleyes:
 
I've been on this course of action for almost as long as I'm officially diagnosed (March 2011). GYN did say that we'd reevaluate at my next appt., so the party might be over then. Being that I'm already an overwhelmed mother of 3, you could be certain I'm not going off that pill anytime soon...the health effects of another baby right now sound worse than any pill! ;P
 
Oh, just to clarify, my GYN agreed with my idea...not his suggestion at all. And yes, my periods were so debilitating that I could not move (other than to run to the toilet). And the additional 10 instances of diahrea those days made living impossible for me. Imagine, husband and children banging on the bathroom door wondering if I was _ever_ coming out. ;P
 
Snickerdoodle said:
Oh, just to clarify, my GYN agreed with my idea...not his suggestion at all. And yes, my periods were so debilitating that I could not move (other than to run to the toilet). And the additional 10 instances of diahrea those days made living impossible for me. Imagine, husband and children banging on the bathroom door wondering if I was _ever_ coming out. ;P
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And that's why it is worth it to use BC to suppress a period, for the improvement of the quality of life. :) I have a couple internet friends who have endo, and they both suppress with BC because life would be significantly less than awesome with a period.

Hopefully, if your doc ever takes you off the regimen, you can both find some other way to keep yourself in remission.
 
Remission? I wish. Still trying to get there...

Snickerdoodle
Diagnosed March2011
Symptomatic 4 years (no remission)
Asacol
Prilosec
6MP
Iron
Vit d
Probiotic
Multivitamin
And my friend, low ogestral ;)
 
How on earth does anyone get thru this without insurance? My savior is Jersey Care, may it live and prosper. Being self employed makes purchasing a PPO insurance out of the question, and even then a lot of CD meds aren't even covered. I mean, just the stupididiot asacol I'm on costs over $500/month, and who knows how much this 6MP costs. But this is way off topic. Is there a special forum on here dealing with insurance/cost issues? Sorry, but I'm still a newbie!
 
Snickerdoodle said:
How on earth does anyone get thru this without insurance? My savior is Jersey Care, may it live and prosper. Being self employed makes purchasing a PPO insurance out of the question, and even then a lot of CD meds aren't even covered. I mean, just the stupididiot asacol I'm on costs over $500/month, and who knows how much this 6MP costs. But this is way off topic. Is there a special forum on here dealing with insurance/cost issues? Sorry, but I'm still a newbie!
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I'm not really sure if there is, I have yet to explore all of the nooks and crannies myself as I, too, am a new member :)

And I'll say this much, not having insurance made treatment that much more difficult for me, though, I lucked out with my GI in NJ, without him I bet it probably would have been much worse. His office only charges self-pay patients $25 an office visit (which is actually less than my copay for office visits w/ my insurance through school), they gave me a whole bunch of discount cards for Apriso because it was so pricey, and they gave me a whole bunch of samples of Pentasa because it was twice the cost of Apriso. They also told me about the patient assistance programs through the company that makes Pentasa and Abbott so I could get my meds for free when I needed them and didn't have insurance coverage.

There's also a lot of things that my NJ GI would not ask me to do because of my lack of insurance - certain tests and routine checks like bloodwork and such. There's always charity care at hospitals, but, from my experience, there were about a million hoops they made me jump through to even get approved for it.
 
this may not help if your periods are super severe, but the last couple months my hormones have been whack (i think the remicade is messing with them a little bit), and i've been drinking chamomile tea once or twice a day, and it really does help. it also seems to help with the extra mucus i get when pms and menstruating that the remi doesn't seem to help.
it's apparently an anti-inflammatory and anti-spasmodic, which would help with cramping. hasn't helped my bloating though. anyone know a good remedy for that?
 
It's true, I was also told the same by my GI and family doc that for women with IBD or IBS our periods can have an impact on how IBD and/or IBS behaves because of the hormonal link....believe it or not, since I started exercising regularly, no more period cramps and although I still have issues with "going" more a few days before my period starts, it's not near as bad or as painful as it was when I did not exercise regularly.

I remember in grade 7 (many moons ago) when our gym teacher told us that sit ups or crunches will help with period cramps I thought (as did the rest of the girls) she was nuts, but it's actually very true...thank god!
 
I'm wondering how many women are having issues with irregular periods as well? My issue is the periods generally aren't painful when they come on time. Well since May they have been ALL IRREGULAR...which for over 20 years of having periods this is the first for me. I'm usually clockwork regular. And now this time I was three weeks late and I knew it was going to be bad but I feel like....I feel HORRIBLE. The periods that are delayed are more painful than ever. I just want it to stop....
 
Mine are and pretty much have always been regular, regular time frame, regular flow and such, but man has it ever taken a toll on how my CD is affected, better now but many yrs it was horribly painful heightened flare symptoms during my periods....probiotics seem to have helped that tons...so I take them daily and plan to indefinitely.
 
When I 1st started having super painful periods I saw a gynecologist who removed adhesions on my Fallopian tubes ( key hole) and told me to take the pill and skip the sugar pill to stop my period. She told me that I could skip them forever if I wanted. It helped but then I decided to have baby number 3! painful periods but only for the 3 months it took to get pregnant ( can't believe it only took that long myself!) after the birth I returned to the pill but decided I didn't want anymore kids or take more pills than I already do. I had a tubal ligation about 8 years ago and my periods are soooo painful. I take oxycodone for my crohns so that helps but also use heat packs constantly. My period is all over the show now..apparently I'm entering menopause (I'm 41) I asked my GP for the pill so I can skip periods again but he said no! I have noticed that since I have been doing more exercise ( just walking, gardening etc) the pain isn't so bad but still get that horrible diarrhea . I'm sorry I have no fix for you but know we all go through it and understand completely where you're coming from.
 
I have had a direct connection with the day of the onset of my period and my Crohns flareup since my 20's, and am now 52. In the past 10 years, there has been a heightened awareness and several studies done linking the two. My rosacea & arthritis also flare up at that time and my doctors are thoroughly on board with this premise, and the relationship to the inflammatory/autoimmune response.

I wish I could tell you that there is a magic answer...but I can tell you that taking hormones has helped me. Due to my age and having had a hysterectomy (still have ovaries), I am on Premarin and it has lessened both the severity and duration of my monthly flareup--which since peri/menopause started has been 2X/month now (ovulation and period). 12 years ago, I was put on a BC pill that made everything much worse. I was better immediately when I went off of it. It was like flipping a light switch the improvement was so dramatic and literally overnight when I got off of it.

So, if you want to give it a go, you'd have to find the proper BC pill that works for YOU, or, there is also the compounding pharmacy for a natural, more personal hormonal mix to suit your situation. I always wanted to try that and haven't yet.

Consider the SCD diet if you want to give something natural a try that may help overall inflammatory problems. I have found that food plans help and they give you some control, can also give you some or a lot of improvement, and possibly less meds over time, without a lot of cost. I've also heard that Evening Primrose Oil helps as well. But you should investigate and talk with a doc/nutritionist about taking any supplement before combining it with your current meds.

Also, my doc said the Ibuprofen is totally off-limits for Crohn's patients, but I had to take it when Tylenol posed problems for me.

Best wishes. You are on the right track. Hang in there!!
 
me2

TheBaby82 said:
I started having crazy periods last year and thought it was just crohns. Turns out I have uterine fibroids. Like I needed another thing wrong with me. You might have your gyno give you an ultra sound to check for that. It was nothing major that needed no be taken out but at least I know why I was hurting so bad.
Click to expand...

Thanks for that, I always seem to have more diarrhea when im on my period, do you ladies have the same problem?
 
I also have several uterine fibroid s, and I had a thermal ablation done 2 yrs ago & the pain is way ,way more intense now, than ever before but light to no bleeding. I`m 37 started my period at the age of 10yrs old, I have night sweats & ALL the signs of early Menopause, but because of my age Dr`s are reluctant to check my hormone levels ugh!!!! Plus out of work living on Credit cards, gonna have to file Bankruptcy because I cant work & I cant get Medicaid, bummer.
 
Snickerdoodle said:
Oh, just to clarify, my GYN agreed with my idea...not his suggestion at all. And yes, my periods were so debilitating that I could not move (other than to run to the toilet). And the additional 10 instances of diahrea those days made living impossible for me. Imagine, husband and children banging on the bathroom door wondering if I was _ever_ coming out. ;P
Click to expand...

i go through the same thing every month :(
 
I just found out Friday from my hematologist (I asked her to check my hormone levels) that I am in menopause at the age of 44!! I am so happy. no more hormonal Crohn's flares at that time of the month. :)
 

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