I have some read some posts on here about this but wanted to delve deeper. Does anyone have a pouchitis flare specifically related to periods...urge, burning, feeling like you are having to push to empty past glass or sand? Last month, I had to take cipro. Now I am taking flagyl after five days of hell. I tried to wait it out, thinking it would pass. But after three days of being up all night. Having to take bowel showers. And finally, starting flatly I just can't think that this is how it will be every month. I am just at a loss and over...all of it. Insurance got screwed up while moving....plus have to establish in the new town. No idea how long it will take to get into the IBD clinic. They said if I needed, to go to the ED but really what can they do? If I need a scope....or if I have to tell them the protocol for abx? I don't blame the docs or nurses, there just aren't many pouchers running around, but I need someone that knows pouches. Logically, I know this isn't forever but in the throws of it, it's hard to see the light. I finally have my vsl day back but am frozen in fear of doing anything in case it makes it worse. How does everyone gag it down so it's not so gagging?
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Another way to tackle this is to control your periods if they truly are the source of your flares. Sounds like it is the case since you say it occurs every time. You can go on birth control pills, the patch, Norplant, etc.. Seems like a better choice than antibiotics (if it works). A number of women here have gone that route. Probably easier to get into a GYN appointment than GI.
Jan 
Not as much for the period pain, but my ovulation pain affects my pouch big time. Did as Jan spoke previously: I went on birth control pills to control it all, and things are fine. I'd suggest it, too, if you're not on something already.
Prostaglandins released during periods affect you and make you poop. Even "normal" women are affected. See this site:
http://www.everydayhealth.com/...and-your-period.aspx
Prostaglandins released during periods affect you and make you poop. Even "normal" women are affected. See this site:
http://www.everydayhealth.com/...and-your-period.aspx
It isn't period pain per se...it is anal swelling feeling like I am scrapping past irritated sand or glass. Horrible spasms, knocking me down for days. I didn't even it like this when I had a flare of the UC. It is flat out bizarre. I don't actually note worse uterine cramps it is like my pouch is inflamed or set up for pouchitis. I just wasn't aware of this possibility. I could do ocp but am really not the best candidate. I wondered if anyone did preemptive abx or canasa. I be the prostaglandin thing and hormone drop but geezy peezy. I just was so unprepared for this possibility...it was not in the brochure. ;p
Going to write a crs that I know who is starting research in this area will share what I find out.
I have a friend who has her colon who describes her periods affecting her bowels similarly to what you describe, believe it or not.
She doesn't get "period pain" or cramping worse than a normal woman, what she does get is extreme bowel issues. I still think there could be a hormonal connection.
She doesn't get "period pain" or cramping worse than a normal woman, what she does get is extreme bowel issues. I still think there could be a hormonal connection.
I also wonder if it's hormone related. Had a new appointment with a new GI doc...male. He said he had a few dozen pouch patients but loomed at me like a monkey doing a math problem when I was explaining how cyclical this 'pouchitis' or whatever is. I guess I was hoping for a 'oh yes, many experience this and we try a, b, c...' BUT instead in was like 'try some Bentyl'. Sure, I will try it but....I don't think he gets when I say I am down for four or five days it really means it. Not sure if it is a male thing or not enough female j pouch patients....it makes me wonder if he has enough experience with pouches. Do you all have any questions that you screen your docs with to see if they are really expert with pouches?
This is why I suggested seeing your GYN. GIs aren't accustomed to prescribing birth control pills. Out of their league. But, your GYN should be familiar with GI effects of menses.
Jan
I hear you, Jan. And I agree, but I'm not a good ocp candidate. It's a rock and a hard place. Mom with MI 49, MGF MI at 35 (death) and father with cva at 59. I guess it's possible...was hoping for another way to survive that week. But I am setting up with a new FM so will discuss with her. I wonder if the hormones mess with the flora of the pouch...like how some women get recurrent yeast infections because of vaginal ph and flora changes. Made me wonder if antibiotics at nose of changes would be of benefit or it is a set up for resistance later.
I can definitely empathize with you. I usually have about 3 days a month (typically 2 days before and 1st day of period) where it feels like my pouchitis is spiraling out of control and that I feel like I have the flu. I can't tell you how many times I go to reach for my bottle of antibiotics ready to rotate or increase my dosage, when I stop, look at the calendar, and decide to wait a couple days. This happens to me every month. I agree with what others are saying regarding possible birth control to help calm this. My GYN has been pushing me for years to take something to make my periods better and hopefully help with the pouch issues around this time, but I've refused as I hate the idea of more meds! So, I deal with it each month, and it sucks :-/
I tried to wait out this month....five days in I couldn't deal anymore. By second dose of flagyl I was feeling better BUT I noticed my period was ending. I may look into OCP but the point of the hubs getting a vasectomy was so I wouldn't need birth control. A doc I know who is a poucher got a mirena and said it made her worse. Oh, make a plan watch God laugh....does anyone take vsl and have improvement? The whole microbiota theory. Ps-thanks to everyone who has helped with responses now and in the past. I wouldn't have made it so mentally intact, however tenuous it has been at times. I need to reread some research. I did find some stuff on PubMed regarding sex hormones IBD and IBS. Both reiterating what Jan and Rachel stated. Found a case review on IBD or that took DHEA with resolution of symptoms while she was on it.
I HATED the Mirena. Gave me completely bizarre panic attacks. Supposed to be "local" hormones, but my gyn nurse says she had other women with similar issues, likely from the hormones. They say it gets better, but I couldn't wait it out. Have a friend who LOVED it, though. You never know.
Copper IUD made me bleed for 2 weeks straight. Could never get it to chill/regulate. Ended up iron deficiency anemic.
But low dose BCP helps so much. My ovulation pain is *killer* it's so bad, especially on the left. I can't even bear down to poop, hurts so bad, for about 3-4 days. Hurts even down my IT band there, can barely walk when it would happen. Pouch gets crazy, vacillating even to constipation, just feel like I want to sit on the toilet constantly. And that's ovulation for me without BCP! My gyn nurse who is super said it's probably because I'm older (44), these are likely my last ditch wonky eggs trying hard, plus lots of scar tissue. I only one other time in my life was on BCP, when I got married, for about 2ish years. Never thought I'd be on stuff again, as my cycles were easy-peasey, til recent times.
Copper IUD made me bleed for 2 weeks straight. Could never get it to chill/regulate. Ended up iron deficiency anemic.
But low dose BCP helps so much. My ovulation pain is *killer* it's so bad, especially on the left. I can't even bear down to poop, hurts so bad, for about 3-4 days. Hurts even down my IT band there, can barely walk when it would happen. Pouch gets crazy, vacillating even to constipation, just feel like I want to sit on the toilet constantly. And that's ovulation for me without BCP! My gyn nurse who is super said it's probably because I'm older (44), these are likely my last ditch wonky eggs trying hard, plus lots of scar tissue. I only one other time in my life was on BCP, when I got married, for about 2ish years. Never thought I'd be on stuff again, as my cycles were easy-peasey, til recent times.
One month....return of above. Ack! This was NOT in the brochure....nope, not in mine. I have used all my tricks and spent three hours trying to reach a Fellow that asked me what I wanted. Really? Ugh...I need to find someone that knows j pouches.
I know you said you're not a great candidate for birth control, but I truthfully believe your hormones are to blame for a monthly pouch out of control. I doubt so much that you truly get "pouchitis" when you have your period; I do think the hormones give you the issues that mimic it.
At this point, I would say your best option is talking with someone in the gyne world about controlling your periods, in some way, shape, or form, whatever the safest way would be for you. Since it correlates with your monthly period, it seems obvious that your gyne system is to blame and is the catalyst vs your pouch being the real issue. I would seriously find a sympathetic gynecologist or NP who can guide you better. A GI doc may not be the best expert in this area.
At this point, I would say your best option is talking with someone in the gyne world about controlling your periods, in some way, shape, or form, whatever the safest way would be for you. Since it correlates with your monthly period, it seems obvious that your gyne system is to blame and is the catalyst vs your pouch being the real issue. I would seriously find a sympathetic gynecologist or NP who can guide you better. A GI doc may not be the best expert in this area.
So sorry for all of the period related pouch trouble...
I've had my k pouch since the age of 18 (54 now) so most of my adult life...and I've had a very physically active life.
I used to feel as if my pouch was going to explode and my uterus was going to fall out my bottom...it felt so heavy and painful...cramps were legendary...my pouch ran like water and I developed a lot of ovarian cysts.
In the end after surgery to remove the cysts and open up my fallopian tubes (they were blocked...one with an ectopic pregnancy which they say is more common with us for some unknown reason) they put me on progesterone for 3 yrs to stop my periods and put my ovaries to 'sleep' (to avoid the creation of more cysts)...when I got my periods back they seemed lighter and less painful.
Their only suggestion to us girls was to control our periods by going on the pill or suspending our periods outright...
Sorry for no miracle solutions...diet does help a bit thought...although I was never a carb eater I found that mashed potatoes with olive oil seemed to calm my pouch down.
Sharon
Thanks for hanging in their with me , ladies. Hormones are still on the table...will see what pouch looks like then we will have a plan..