Periods and IBD

I’m going to warn anyone who cringes and faints at the mention of “wimmins problems” to step away right now as this post probably isn’t for you…

Still here? Good. Let’s talk menstruation!

Now since my surgery to create a j pouch, things are, well, different down below.  I suppose it is to be expected, the new pouch is right up alongside my uterus and vagina and I was warned before the surgery that there could be changes in my vagina especially during the old sexy time.  But what I wasn’t expecting was the change in menstruation.  My periods are now particularly heavy and really painful, they are lessening in severity as the months pass but at first it was crippling, bent over, gripping the stomach, water bottle pain.  I am also finding that during my period, my pouch plays up.  I get a lot more diarrhoea and find myself going to the toilet a LOT.

periods and j pouches poo ibd menstruation

Annoyingly there is little information I can find about j pouches and menstruation, google brings up lots of personal accounts on blogs but little from the NHS or any other official websites.  It’s an odd thing really, you expect in this day and age that you can find out anything and everything online.  It got me thinking about how taboo menstruation is even in this day and age!

I have a friend called Chella Quint who is a menstruation education researcher and blogs, talks and writes about menstruation in her project #periodpositive  Her work shows just how little we like to talk about periods in general, about the historical use of shame and fear in advertising for sanitary products and how taboo a subject it is.

Chella also created the marvellously brilliant STAINS™, a spoof brand that explores blood stigma in menstruation product advertising. You can see the STAINS™ exhibition in the Bloodworks exhibition at Science Gallery, Trinity College, Dublin launching on 23 October. The STAINS™ section opens with a fashion show and mockumentary film, and the entire exhibition runs until the 25 January 2015.

“STAINS™ is a removable stain you can wear on your clothing as you see fit; it’s a fashion statement that really says something. We like to call it Leak chic. Be part of this fashion moment by downloading or purchasing your own STAINS™ stain from www.stainstm.com and wearing it with pride. Display your photos using the #periodpositive hashtag and following @periodpositive

stains chella quint

 

 

But it seems when it comes to periods AND poo, it’s just a step too far…

After scouring the web, here is some information on IBD and periods.  As with everything on this site, it is my opinion and information gleaned from the Internet so please do see your own doctors if you are having issues.

“Many women with active IBD have irregular periods. When the disease goes into remission, regular periods sometimes return. No one knows for sure why. But inflammation does affect the hormones that cause periods. Nutritional problems may also interfere with the monthly cycle of women with IBD.

Some women with IBD tend to feel worse right before and during their menstrual periods than at other times. Diarrhea, abdominal pain, exhaustion and other symptoms are often more severe during these times.”

periods ibd jpouch ulcerative colitis menstruation

“The interaction between GI function and menstrual function is complex, and not completely understood. Prostaglandins are an important part of the inflammatory process in active IBD, and are associated with diarrhea and abdominal pain. Prostaglandins are also released by the body during menstruation, causing contraction of uterine muscle and resulting in the cramping pain of periods. By this mechanism, symptoms attributed to menstruation and IBD may overlap.”

And I’m afraid that’s your lot.  Not much is it; this was the best information I could find regarding menstruation and Inflammatory Bowel Disease.  Anything specifically to do with a j pouch was even more rare!  I am really surprised at the lack of information on periods and jpouches, especially as it seems it is a big problem for a lot of women.  On many of the IBD blogs out there, women are discussing menstrual and sexual problems.  Some of the symptoms talked about are:

Increased diarrhoea

Pelvic pain

Bum pain

Heavy Bleeding

A heaviness in the vagina and pouch

Cramping

Exhaustion

Sickness/Nausea

Some coping methods found around the web are:

Painkillers (a struggle really as ibuprofen is a no no for IBD-ers and codeine can make you constipated)

Heat pads

Bed rest

Mirena coil

Contraceptive pill

Exercise

I am shocked at the lack of easily available information on menstruation and also sexual problems associated with IBD surgeries.  I have found pages and pages of advice and care for men facing impotency issues following surgeries but anything to do with the vagina is shied away from and labeled as ‘intimacy issues’.  For we are but delicate flowers who can’t deal with talking about our own sexuality, no?

I’m not one to talk about my personal sex life on this blog, and the reason for this is that I have three kids who I know peek in from time to time.  I have an open and honest relationship with my children and we talk about sex and all the issues surrounding sex regularly.  But no one needs to read about their mother’s vagina do they!  What I will say is that I am dealing with problems post surgery and I want advice, information and resources to deal with it, yet turning to Dr Google is pretty useless! Where is all the gynae information?!

What we need is to have a more open dialogue regarding any bodily function that goes on within the underpant area.  I find it hilarious (read appalling) that we still have Page Three girls in a daily newspaper yet we can’t discuss the uterus without men gagging.  For the record, this idea that all men find periods gross is silly, yes, there are men whose ears are offended by the M word but to them I scream MENNNNSSSSTRRRRUUUUUAALLLLLL BLLLLLOOOOOOOOODDDDDDDDD…  Most men in long term relationships have overcome the pubescent thoughts that it’s gross ‘girl stuff’ and recognise that it is a healthy part of the woman in their lives body.

So apologies if you found this page hoping for some answers, I’m afraid I can’t give those.  But I hope I have given you hope that you aren’t alone in dealing with this and I hope you will go speak to your doctor and get some answers of your own.  Finally I hope I have inspired you to start talking about traditionally personal and intimate issues that most women have at some point in their lives.  Please do take a good look through Chella’s work and share, it is damn fine stuff and helpful to us all.

If you have any experience, advice or links to information, it would be great if you could share them in the comments below.

Muchos Gracias!

Love Sam x

Adventures in Menstruating image courtesy of Chella Quint

7 replies
  1. Debbie
    Debbie says:

    Ah yes, amazing how that teeny little ( and mostly unuseful) organ causes so much pain, inconvenience and inexplicably odd poo. Why my large intestine always wants to join in my uterus’ pity party is beyond my ken!

    Reply
  2. Debbie
    Debbie says:

    Ah yes, amazing how that teeny little ( and mostly unuseful) organ causes so much pain, inconvenience and inexplicably odd poo. Why my large intestine always wants to join in my uterus’ pity party is beyond my ken!

    Reply
  3. Suzy
    Suzy says:

    I never noticed any difference in my periods post-surgery (ok, I was probably more angry and hormonal, but periods have always been good and regular), but I definitely had worse problems with the pouch when I was on my period. Whilst I did comment on this to my Dr (who is normally completely open to discussing anything and everything), he didn’t seem to be aware of this being a common problem. I wish there was more info on intimacy though, as I definitly have noticed problems in this area!

    Reply
  4. Suzy
    Suzy says:

    I never noticed any difference in my periods post-surgery (ok, I was probably more angry and hormonal, but periods have always been good and regular), but I definitely had worse problems with the pouch when I was on my period. Whilst I did comment on this to my Dr (who is normally completely open to discussing anything and everything), he didn’t seem to be aware of this being a common problem. I wish there was more info on intimacy though, as I definitly have noticed problems in this area!

    Reply
  5. Chloe
    Chloe says:

    I have colitis/crohns/fistula/hernia all the cool stuff.. I’m now 40 and my periods stopped 8 years ago when iwas the illest ive ever been. I was in hospital for 6 weeks, surgery failed and was left on life support.. Anyhoo and lardeedar i got so so thin after that that my periods stopped (yay) and my very very long hair fell out (not yay). I didnt miss them at all. Im well and truly on the single pile, my finance couldnt deal with being with someone who is ill all the time (butt smear).. So no kids for me. So long story long they came back in september 2015 grrrrrr. I have a teeny tiny cervix so even teen tampons wear like inserting a giant dry log ewww. Pads arent for me.. Then i discovered menstrual cups (lunette model one, its purple) it is AMAZING. Look too big but you cant feel it and you only need to empty it every 12 hours. Environmentally friendly and no risk of tss. It has saved me from having a histerectomy. Sorry this was so long. Im a bit of a rambler. Hugs to all the ladies.

    Reply

Trackbacks & Pingbacks

  1. […] not all women menstruate and not all people who menstruate identify as women).  I have talked about her before and it is awesome to hear her in the mainstream press! […]

  2. […] not all women menstruate and not all people who menstruate identify as women).  I have talked about her before and it is awesome to hear her in the mainstream press! […]

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