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🤦‍♀️ Calling all moms with daughters. 🙄It's finally happened.

It's been awhile for me on this forum.
But......🙋‍♀️ hello.

My little farmgirl is 11.5 years old.
We started this journey when she was 2. She was dx at 3 with a subtype of crohn's. Since then she's added more diagnoses but she's amazing and an inspiration to many.
But...... please don't take this the wrong way......

She started her period (second one) and I just lived through it while she was on prednisone.😱
I feared for my life.
I didn't know whether to sleep with my cross or sliver stake!
I sware she was out for blood. 🤣

Any advice on how you deal with flare ups and periods? New territory for me y'all. Can't believe so many years have passed by.🥺
Grace (aka farmgirl, vampire, hangry) says hello. ❤
 

my little penguin

Moderator
Staff member
Periods can cause flares for a ton of kids unfortunately
Some with crohns /bleeding disorders /arthritis etc...
Use birth control pill so they only have three to four cycles of period bleeding a year
And less Hormonal shifts that cause flares



I have all boys so puberty was a beast for getting disease under control
Some get worse and have a hard time with med control while some get Better during puberty

Ds got worse with puberty
no guarantees though with birth control things might get worse from it :(
 
Thanks my little penguin.❤

Sadly that's the case for Grace.
Her doc said she calls it the
1/3 law of auto-immune disease for kids during puberty.
1/3 gets better
1/3 stays the same
1/3 gets worse
🤷‍♀️Guess what Grace fits into.
Change of meds will probably be happening soon
 
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my little penguin

Moderator
Staff member
I can say sometimes even med changes didn’t fix things
Ages 12-15 for ds were horrid
Meds really didn’t do a lot
Now at 16.5 things are remaining steady
But most of the growth etc.. is also slowing so ..
At least girls are finished with puberty quicker
Hugs 🤗
 
My daughter gets very heavy periods. In addition to big mood swings she was also having more than her usual trouble with iron deficiency and she had painful cramps. She talked to her GI and pediatrician and decided to try continuous birth control to eliminate most of her periods. Unfortunately, she tried 3 different types and they all made her super nauseated. Like much worse than mtx nausea, throwing up between classes in school nausea. So she reluctantly gave up on birth control. She takes iron supplements every day, and we did family DBT for a year to help both of us handle the mood swings (along with some more generalized anxiety and depression). A heating pad helps with the cramps. It's better now that she's almost 18, but not great. Hang in there!
 

Maya142

Moderator
Staff member
My kiddo also suffered with terrible cramps. She tends to also have diarrhea with her periods - I have no idea if that’s IBD related or just period related. In her case, given she is always in pain, we tried birth control to reduce her periods - a 3 month birth control so you have only 4 periods a year. The first birth control we tried caused more cramping, but the second worked well and now she has light periods with minimal cramping. She is also much less irritable, but that’s probably because she’s in less pain.
However we didn’t try birth control until she was much older than your daughter - 17 maybe? Before that she took Tylenol (which did nothing much for her) and an NSAID (since she is on one for her arthritis anyway) and hot baths or showers also helped, as did a heating pad. You can try thermacare wraps for school - they’re thin enough that they won’t show under her clothes and might help with some of the pain.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
I'm turning 42 next week and even now have terrible periods. When I began getting mine at, 11 or 12 mine weren't regular and eventually stopped until I was into my later teens (partly from being underweight and partly because I hadn't been diagnosed yet). At that time, they came with awful cramps. Since I wasn't diagnosed until I was 18 I never knew that periods came with flares. Even now I flare a bit each period and my GI seems to figure it's normal for me.
My doctor prescribed tylenol 3 for those times when I happen to need it since I can't take an NSAID. I try not to take them unless I have to because it has codeine in it, but it's there just in case. Hope this helps some...
 

crohnsinct

Well-known member
Yep T and O always get an uptick in Crohn’s activity with their cycle but I wouldn’t say it is an all out flare. T takes midol and swears by it but I am sure there is an NSAID or something bad in it but you do what you have to. Plus our GI isn’t so sold on NSAID being evil for Crohn’s if only used once in awhile. But with Grace’s other issues I would always check first.

Exercise helps. My oldest has always had horrendous cycles. Migraines, pain to the point of committing. But only the first few days. She was a swimmer and said she felt better after practice. I remember always feeling better after exercise also.
 

my little penguin

Moderator
Staff member
As far as nsaids and crohns
Please talk to her Gi
Ds has been on daily Celebrex (nsaids ) for years for his arthritis
Scopes for crohns are still clean
No issues
So it may depend
 
My apologies for barging in on a thread for a young one - Unfortunately I have personal experience in this department and hope it is useful.

An anti spasmodic can be useful in reducing cramps eg buscopan if nsaids not an option
Also a hot waterbottle - but only useful at home really.
Evening primrose can help mood.
They also used to prescribe calcium supplements for premenstrual dyasphoric disorder (worth looking that up too) - a reasonably high dose. I was on calcium for this during the teen and young adult years and it helped my mood ( and my parents!) a lot.
obviously check with dr before adding meds but the above might be options.
I also completely agree with the exercise comment from above.

The new thinking on running contraception back to back is that you don't have to have a period at all:



Sorry I don't have the link to the NHS page. I was shocked by this information, and found it out in the news article above rather than my gyne - so it does not appear to be common knowledge yet.

Definitely keep trying different versions of the pill if they don't work out - there are quite a few different ones. The progesterone only ones can affect mood.

My advice would be to find a great 'progressive' gyne - ( ie one who keeps learning, who listens and is not a dinosaur) they don't need to do exams at her age, but can help monitor mood, and interactions with Crohns and help keep you in the loop with new knowledge. They can help you track trends over time, and see if things are becoming abnormal, or going downhill.

One thing to keep in mind is that they are finding endometriosis and adenomyosis in younger and younger kids and this can affect the bowels etc too. - just another thing to keep on the radar just in case.



Last advice: Chocolate! (or if not an option - baking with cocoa in it eg choc cake) and perhaps ice cream, sorbet, gelato or shoe shopping!
Or a rom com movie on the couch with Mum. You don't have to speak - just be in the same room.

Best of luck. I would not wish bad periods (whether mood or physically bad) on my worst enemy. (or perhaps the household of!)
 
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crohnsinct

Well-known member
You old!

That's my welcome back insult!

But the good news is she got her period! Lots of kids with Crohn's that is active get delayed puberty so YAY PUBERTY!
 

Maya142

Moderator
Staff member
@Pilgrim I’m shocked too o_O I always think of Grace being 5 years old.
I guess she grew up when we blinked!
It is good that she is going through puberty - I know my kiddo’s period stopped when she lost a lot of weight. So this is really a good thing (you just need more wine @Farmwife)
 
Thanks for the advice everyone. 😘
Grace had trailed NSAIDS 3 times.
Within the second dose, she cramps.
She's also tried different anti cramping meds but nothing really seems to help.

We'll see how her next cycle goes. She's off of prednisone. Hopefully it will help her mood. 🙄 I hoping she won't be plotting our demise.

And yes, I'm relieved she started but it's hard to accept.🥺
She's getting so big.
She's going in 6th grade 😱
I still homeschool her but I sware I don't know where her smarts come from.
💃Now her sense of humor and slightly irrational attitude come from me. 🤣
 

This was sent to me today. Hope the link above works. More info on menstruation with women with Crohn's . :)
 
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