Periods without a COLON + RECTUM | Let's Talk IBD

I talk about life post-proctocolectomy and what women's health issues I have dealt with since the removal of my colon and rectum and closure of my anus.
P.S. - I apologize for the audio being a bit echo-y - we don't have any rugs down in our office yet to buffer sound!
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[@LetsTalkIBD]

Update as I am getting the same comments over and over: 1. I have now tried menstrual cups/discs, which I talk about here: kzbin.info/www/bejne/qpTZn5aBrb2ceJY 2. I don't want a hysterectomy or an ablation as I'd like to try to have kids 3. I have started pelvic floor therapy which seems very promising for my issues! Highly recommend 4. There may be mesh/insertable devices that may help should it come to that, but I am not seeking that option at this time. 5. I got diagnosed with adenomyosis (related to endometriosis) so it may have something to do with this as well 6. I've had a lot of people ask if I can get pregnant... I'll let you know if it happens ;) Thank you so much for all of the tips & advice!!!

[@cetkat]

Perhaps Depo-Provera could be used? Since you got some improvement before, and you're trying the strengthening - it may be a good temporary solution. Most either lose their periods entirely, or it goes down dramatically. You do regain fertility between 6 months to a year after stopping. I use it to stop the swing in hormones (rather than birth control - so I take my shot every 10 weeks.. and I've been on it for about 7 years now). It does make my estrogen very low, but I haven't noticed any real negative effects. Obviously everyone's different, but it's a way to press pause while you work on this (and, I'd guess you wouldn't want to become pregnant while working on strengthening the wall.. that just sounds like a potential fertility/pregnancy problem). Just a thought of something reversible that would likely give you some relief.

[@Goldenretriever-k8m]

John Oliver has a horrifying segment on medical devices including the (perhaps now banned?) vaginal mesh! it was so informative and scary! you should watch it if you haven't seen it. He discusses how women seem to be more adversely effected by them, and how women go online to warn each other of the medical devices. It's on youtube!

[@vociferonheraldofthewinter2284]

Thank you for talking about this. I know that this will probably be in my future and it's scary for me. I have a friend who has a friend with a colostomy bag. She dragged him over to my house and he sat me down to show me the setup and tell me how life was with it. (He told me that the only thing he couldn't eat was mushrooms! lol!) By the time he left, it didn't seem so horrible. He was in so much agony before he got the procedure (I can SO relate) and he said that every day was SO much better than the hell he was living with before. Too bad we're all too stubborn to try the freaking unicorn tears... lol! Seriously, people act like sick people just sit there and take it. We try EVERYTHING. We use up all science then move on to desperation mode. There we get into herbs and supplements and THAT ONE WEIRD TRICK that someone promised us would fix it. We don't just accept it and die. We work harder researching our issue than anyone and we're VERY openminded. It's hard to find the line where you're openminded, but you don't let your brains fall out. I did find something that has bought me time. (The most extreme elimination diet ever) But I don't know how much time it's given me. I'm getting hints lately that I'm heading for the surgeon's table again soon. Thank you for helping the rest of us face our futures without so much fear.

[@missbee9140]

Good luck! You might consider using a surrogate using your own eggs...

[@missbee9140]

I’ve found the healthiest diet to put Crohn’s disease in to remission is green smoothies made from fresh fruits, vegetables, nuts and seeds plus taking any necessary vitamin supplements like oral liquid B-12, 50,000 vitamin D, and Iron. Just eating green smoothies - basically you use a base of spinach and watermelon, Hemp seeds and vanilla and then add whatever other fruits and vegetables and nuts and seeds you like. Pulverize the nuts so you don’t have anything that could cause a blockage. You have to Rotate every week between baby spinach and mixed greens. Also taking Azathioprine can help control crohn’s without side effects. Avoid meat, processed food and dairy. Read Eat to Live to learn how to become a healthy vegetarian without a lot of effort. Also probiotic supplements that have the strains that have been effective for crohn’s. You’ll have to look the strains up, there are several and there might be new ones. Renew Life sells good probiotics.

[@whattheflimflam]

Who else got this in their recommended and clicked because it is educational and interesting.

[@GaelinW]

Yep. I was looking up salmon recipes when this came up. Not sure of the connection, but there you go...

[@lindagrove1671]

She is so brave and lovely

[@christopherforsyth5284]

I watch Dr. Pimple Popper and The Toe Bro. So- I get a lot of medical related videos.

[@RaneBoDasch]

I saw period, colon, and rectum in the same sentence and that was enough for me. After watching, I am now rethinking all my life's choices and also have a much closer relationship with my anus.

[@maddywalker]

This appeared in my recommended and clicked because of that BUT mostly because I know someone with Crohn's and I want to understand better what she's been through. We were actually in the same career in college but we never talked until we were both hospitalized at the same time, same hospital for different chronic deseases. Even tho our health problems were very different we kinda started a friendship because of our very unique situation. This kind of videos make me empathize a lot lot more with her and other people with Crohn's. It's very educational :) Edit: sorry for my English! I know it's not perfect, it's not my native language.

[@pinkbubblegum143]

Very informative. And such a sweet person. You have a great attitude about all of the things you've been through. I dont know exactly how I got here, but Ill be following you from now on. Thank you for sharing :)

[@jadengrace_]

You are so brave and your spirit is so beautiful ❤️ thank you for sharing a part of yourself with us!

[@Maddy5TEI55]

Idk how I got on girl with no colon KZbin but I’m here for the journey

[@pauladouglas7786]

You are a very special precious gift from God!

[@oliveryt7168]

@@pauladouglas7786 let's not exaggerate it.

[@Uhohohno319]

Same

[@superkagome]

Same, I'm not affected by this topic but I'm so freaking thankful she is existing and talking so openly about it.

[@okaybye75]

Yes I was watching birthing story's and ended up here I don't know either but here I am to learn her story.

[@mariacristinamiranda8411]

Please dont be sorry for mentioning normal body functions this is 2020 everyone should know what they are

[@batmanlikespizza2541]

Agreed

[@LetsTalkIBD]

YES! Need to remind myself I'm allowed to talk about subjects like this without apologizing!

[@patience8290]

Agreed.

[@mrsjokersknight]

Yes!!!

[@justteresiah]

Also if someone clicked on the video after seeing the word period, vaginal discharge shouldn't be concerning at all

[@Emp6ft10in]

I can't believe you doubt the power of drinking lemon water on a full moon.

[@trishaj3050]

🤣🤣🤣 careful I might try that.. LOL

[@conversationswithadrianne]

😂

[@peedyh1]

😂

[@Berribunnyo]

lol

[@XanthoGrl]

It’s so tragic how little information there is about women’s reproductive health, happy you found out what was happening, but sad you had to find the answer yourself

[@xenjadedd1585]

Most we get is that Amy Schumer commercial where she sticks a tampon in a donut.

[@bootscooty]

Mmmkayyyy

[@DJKav]

Same with men's health. My left testie is half the size of my right one. It's also extra tender, and it can cause me intense acute pain, if I just sit wrong, catch it when washing, or the wrong pants. Doctors can't seem to figure it out, had a couple of uncomfortable ultras sound scans on it.

[@deedebdoo]

I disagree. This is because there is no specific specialty for pelvic floor. Had she been working with a “women’s reproductive health” physician, they would have told her to retain her rotting rectum for her “women’s health”. There is no one specialty with equal training in urology, gastro and gynecology. There are also problems for men created by this “gap” in medical specialties. Bowels are near prostates too

[@linanicolia1363]

Reproduction is not considered as part of survival.

[@jjellyjelli]

crazy how under-researched women's bodies are, especially surrounding our periods.

[@jenniferloftus2363]

All of the research done on the majority of health conditions and everything else has been done on men. They are considered the "default" human and the bullshit reason they give about not wanting to use women for research is that we have all these hormones that make it hard to figure out what is what. That is garbage. We aren't being studied because they don't care about women as much as they care about men. For decades the studies on heart disease produced all the symptoms a man needed to know he was having a heart attack. But us? Well, we have different symptoms sometimes which led to us being sent out of ERs and going back when the heart was more damaged. There is more research on women now but just from watching this video it is apparent it's not enough in all areas. Periods especially. That's why when you have pain and the dr just says it's normal, it isn't but there is nothing to give to you because no one cares.

[@MazMari]

Read 'Invisible Women' by Caroline Criado Perez It's even more insane.. the fact that we get to vote is defininetly a milestone but, it is a miniscule of a winning point when you read this

[@MazMari]

Also what Jennifer said is 1000% correct factually

[@dannyt3668]

We need more women in the medical field

[@-MaryPoppins-]

@@jenniferloftus2363 weird because men have the same fluctuations of hormones, and the same levels of hormones, just in different variations. I love how men think they don’t have any hormones but will get into a fist fight over a quarter on the ground 😂

[@smitty__]

"Let me give you the backstory." That's gotta be the most satisfying pun to deliver

[@reaganneel933]

Yoooooooooooo

[@Debbiesdilemmas]

I was going to comment on that too....lol!

[@wyass4722]

Made it 666 likes for ya hehe

[@TheKatarinaGiselle]

😂

[@junepassingthrouthegate8810]

OH MAI GAH 🤦‍♀️🌪️

[@alicesleeman2340]

I was born in 1946, in 1949 I had colon cancer. Colon & rectum was removed. I've had an illiostomy for 71 years & have led a pretty nomal life. I've had 3 babies ( c- section) . Been married to same man for 56yrs. May you be encouraged. God has a plan for you. Trust Him

[@nekogod]

Seems like a crappy plan (no pun intended) if some people have to suffer and others don't. You'd think a supreme being could come up with a plan where everyone can live long, happy healthy lives.

[@loveswintertrees]

Id love to be blessed with one long marriage too. Seems like no one meets the right one these days

[@Aurora-uh9nk]

Wow Alice , u really r a strong lady ! Amazing, God Bless !

[@coolnobodycares]

@@nekogod I knew there would be an atheist that just couldn't resist taking a shit on religion. At least it was somewhat respectful this time.

[@alexandersmith2679]

@@coolnobodycares it deserves to be shit on

[@HollyG1903]

I don't have a single clue why this was recommended to me but now I'm fascinated. I've seen tv commercials that mention Crohn's disease but I've never known what it was. You're awesome!

[@TravelingwithValeman77]

Same with me. I never searched anything close to it and yet it's here. Lol

[@ettena93]

Same! She explained it so well and had a sense of humour. I'm gonna subscribe for sure.

[@galescott8433]

I HAVE SEEN A NEWBORN BABY WITH A COLOSTOMY BAG, HE WAS DOING FINE, WORKED AT HOSPITAL FOR FORTY YEARS, IF THE BABY DID NOT HAVE THE BAG, HE WOULD BE VERY SICK, IT IS JUST A BAG.

[@carolynhill5938]

Same!! Lol

[@litchtheshinigami8936]

I’ve known a few with the disease (an old teacher of mine.. and an old friend of mine)

[@vis1975]

I'm in med school. Last year our professor explained that basically all the meds are tested on and prepared for male subjects. This is because women's cycles and hormone variations make it a difficult environment to test on because it's variable and changing. The way I see it, it's a leftover of all the centuries of medical development in which men were the protagonists. We landed on the moon, and a woman's body is difficult?? Luckily since the last century a lot of women entered medical faculties and I have hope for the future.

[@tempesttking5715]

💯😪

[@mmdgcf]

My professors gave the same excuse 😒 I study in Portugal.

[@rodrigotellez2962]

Basically all current medicine (ei. our understanding of symptomatology and therapy) is still based on a patient who is a white/caucasian male around 1.78m tall and weighing 80kg (give or take). Though strides are being made to broaden our understanding on medicine and truly doing a personalized approach to our patients.

[@vis1975]

@@rodrigotellez2962 yes, that's true. Personalized medicine and therapy is definitely the road we're trying to take for the future. As you said tho, right now our understanding of medicine is based on model that sadly, isn't that representative. It works in its own way, meds are taken by women too and for most cases there's no deadly side effect but "it works somehow" isn't enough because there's still so much we don't know about women's phisiology. One example I can come up is that pain works a bit differently in women and men, or even certain symptoms of heart attacks. Being a med student I get that its difficult, but I don't think it's impossible and I definitely don't think we couldn't already have reached it knowing how fast science advanced in the last century.

[@ralsharp6013]

I had no idea about the testing with males and not females due to hormone levels. It's extremely interesting and makes sense

[@thathero3736]

Did you just apologize for a comment to all the men watching? Honeyyyyy....no. No apologies!

[@soxpeewee]

Yeah, why are they watching then?

[@iamirish7226]

@@soxpeewee they may have women such as a wife or a daughter with chrons and are educating themselves to help make informed choices for their daughters or be of better supports to wives/daughters. I don't have chrons but I like learning about all kinds of things and I am sure a lot of men do too.

[@TheKatarinaGiselle]

YES! Preach!

[@wordswritteninred7171]

Whats wrong with being polite? She wasnt saying "sorry", as in she did something wrong. It was "sorry. I know. It is uncomfortable for you to hear" There is nothing wrong with that. The world NEEDS MORE MUTUAL RESPECT! not less! This lady is a treasure! The consideration she showed for any male viewers says a whole lot about what a wonderful person she truly is.

[@Katya-zj7ni]

@@wordswritteninred7171 💕💯

[@EvaRojano]

This is what I call a REAL influencer. Someone as courageous and charismatic like Maggie that is using her tech tools to give valuable medical information about her condition. Doctors should really partner with her so she teaches conferences about the topic and she gets well paid for it.

[@OchiMDae]

It's best not to label people since everyone is different.

[@carolynloughran5450]

⁠@@OchiMDae That person is simply pointing out, that unlike countless others, Maggie’s channel is actually useful because she is teaching people. This information will help people. Say what you want about Labels, but many will agree that this channel is making a difference. But I guess that maybe you appreciate another teenybopper trying on the latest lip-plumping lipstick 🤷🏻‍♀️

[@Ryan_but_the_name_was_taken]

Random dude on the internet here: this was interesting and educational

[@afterthestorm221]

I absolutely agree I don't know how I got here but great job on your video! You have far more confidence than I!

[@zehnareddon9559]

Thank you for being respectful! :)

[@Aster_Risk]

@mattaddison19 She shouldn't have to apologize because grown men are behaving like children.

[@Z-Ack]

Lo who said she should apologize? He just said theres a buncj of subjective feminists in the comments it seems like all hating on men who havent even commented anything negative or insulting.. but the first male comment that resembles something argumentative look at the comment barking at him.. lol.. sorry.. just seems a bit.. subjective.. yea im going with subjective.. and "she" is her own self and shouldnt be answered for because women should have their own personal voice like this woman in the video.. when people speak for other people it makes em come off .. im going with subjective again.. "Alex ill take synonymous and nouns for 500 please..." Lol.

[@chaunceyhulbert7264]

Ugh yeah......another random dude here. I clicked because i thought it was a play on words......as in.... period/colon.....then i saw rectum in the title and was like.......yup gotta check this out.

[@rjmami8508]

This was so fascinating. I heard someone in passing refer to their butt as a “Barbie Butt” after the surgery. For some reason that has stuck with me lol.

[@LetsTalkIBD]

That's what I often call it, too :)

[@KaraOfTheSea]

My husband has a permit ileostomy and I endearingly say he has a Ken butt.

[@329Punkrockprincess]

As a doctor in practice, I found this video very interesting. Thank you for sharing your personal experience with this, I may be able to educate and help a future patient with these concerns and point them to your channel. I hope all the best for you. Take care!

[@medicamedico4335]

Kudos! In practice, i have personally found it better to call cases 'informative' and not 'interesting'. Pet peeve, I guess.

[@329Punkrockprincess]

@@medicamedico4335 great point though and I can see where you are coming from! I guess yes, I should have worded it as both interesting and informative because that’s what it was. 🤷‍♀️

[@ryan8430]

My grandma is 90yrs old and has been living with a ostomy bag since 1980. I'll show her this video she's really embarrassed about it still to this day

[@SeleneMoonBird]

That’s sad that she’s embarrassed after so long. She needs more friends in the medical field... they’ll make her feeling like her thing is nothing to be embarrassed about. I hope she enjoys the video and is released from her embarrassment! She definitely doesn’t have anything to be embarrassed about. She’s unique and special like everyone else!

[@sandyh5653]

Poor lady...seriously! I am very shy about my bodily functions to this day. I feel so connected with this dear woman. May she find peace & acceptance with all things female.

[@Ikumi_kiyoshi]

Honey if a man is watching this and gets offended then he's not a man he's a child. 👏

[@miekekuppen9275]

If they´re ok with talking about anal surgery they really should be able to deal with hearing about discharge XD

[@miekekuppen9275]

@UdonNOmeBUTuWIL49- Erm... because men are human as well and have both human curiosity and compassion?

[@nightshadowone2989]

kimmie Sung. You are so right!!I didn't know how I got here today.. but glad I did....learning (never too old to learn) new things😊

[@miekekuppen9275]

@UdonNOmeBUTuWIL49- I don´t think that need exists.

[@Chopperdog]

@UdonNOmeBUTuWIL49- I'm a man but i just left a comment for the women in the video to help her cure her crohn's disease with proven medical evidence to back it and it's 100% natural but i guess us men with brains are still useless to you feminist Nazis 😂.

[@erinkornfeind]

I never felt so comfortable hearing someone talk about Crohn’s disease. I was diagnosed when I was 14. While my Crohn’s is mostly under control, I still get bad flare ups in stressful situations. You’re such a warrior!!

[@ShortCakeMeg]

Same for me...i started having symptoms at 12 and was diagnosed at 14....I've only had 1 surgery and doing well...but I love the way she talks about this

[@celeste.cutz2020]

I know a few people w it some have had lots of surgery while one is fine. So many variations w it I’m glad ur ok. This case she has is more rare I would say.

[@karenchiavazzo2091]

Same! I also got diagnosed when I was 15. It’s now mostly under control as well thank God.

[@ricg674]

Chron's/Colitis are nothing but a result of food inflammating the colon/gut. If you remove all inflammatory foods and introduce probiotic foods, remission is possible. I've heard many cases of such. Fiber is also problematic for an already damaged gut. I'd eat nothing but animal products (no dairy) and peeled fruit, keeping the fiber and carbs from the fruit low. Some cucumber/squash home-made juices too. Some sauerkraut (no non-fermented vegetables). Keep the salt low, and no hot spices at all. Water kefir is also an excellent probiotic. Eat plenty of nutrient-dense foods like liver, fish roe, eggs, shellfish. The mainstream paradigm isn't always right about everything. You know, psychiatry, diabetes management... and IBD management is definitely included as well. Drugs should be the very last resort after proper elimination diet.

[@karenchiavazzo2091]

@@ricg674 I was diagnosed with Crohn’s and stayed many years in and out of the hospital, then I changed my diet and now I’m doing great :) the last time I’ve been hospitalized was 2,5 years ago.

[@KatasaurusRexxed]

You should reach out to Mamma Doctor Jones here on KZbin, she's a gynaecologist who makes educational content. I'm sure she'd love to talk to you, and she had access to research etc.

[@ceruleanwake8876]

Yes!!! Tgis would be such a good cross over video!

[@Erica-wz8yv]

I would love to see that

[@riverdeutsch5561]

I second this! MDJ is rad as hell!

[@missmoxie9188]

I love Mama Doctor Jones

[@linanicolia1363]

it is a topic that will fall " between the cracks" ( no pun intended) as we deal with two different specialties. The general surgeons like to keep away from the GYN issues...Of course, it is not uncommon to need GYN and Urology consults at some point. They will help with these questions.

[@blubyrrd]

WHAAAAAT I thought I was the only one and all my doctors have been scratching their heads at me. THANK YOU!!! - a 32 year old ostomate from seattle

[@lizzymerifield9959]

Hahaha yes! Same in England for me hahaha

[@sheycouz206]

you are definately not alone,ive been having this issue for about 7 years now since i had my ostomy,this video is great to bring awareness to anyone who is not aware how common it is amongst us to suffer with this.

[@InnaA-d3i]

​@Lizzy Merifield same! Nhs exhausted their options, tested against everything but can't figure out the discharge, even seen the gynae

[@veronikaberger26]

Same in Germany! Thank You!

[@paintinglife]

I felt bad when u said "vaginal discharge nd sorry to men watching this" u should hv not said that. I am a man. Thats normal This video was really informative.

[@zehnareddon9559]

This. Thank you for this.

[@BabyFoodChewer]

If she didn’t apologize I would have called the police

[@RJHail]

@@BabyFoodChewer 😂😂😂

[@youtubeturnedtoshyte.218]

Should women be afforded extra empathy points? Does it help you in real life to white knight? Stop pretending that women are delicate creatures always at the receiving end of evil misogynists, and that you are "one of the good ones". How about we all put gender aside for a minute and sit back and enjoy they video without turning this into a divisive man vs women thing with white knight opportunism.

[@zehnareddon9559]

@@youtubeturnedtoshyte.218 this went dramatic quickly

[@iamjane9628]

I am and RN and I had never heard about this happening to women post-proctocolectomy. Thank you for sharing your story.

[@1americanatlarge]

as an RN you obviously have what it takes, as an LVN you forged on to an RN, is somebody holding themselves back from what their really capable of for reasons only you can deal with and put away already, and get on with what you were put on EARTH to do! JANE!!

[@rissamarie1280]

Stepmoms and RN who does wound care. Wonder if she knows this. I'll definitely have to pass along.

[@videt7459]

Bear in mind that women are culturally pressured to not complain, and that reticence is highest in power differential settings like the medical one. In reality, this probably happens to lots of women and the med community has no idea because they didn't feel empowered to bring it up. There's a ton of research on the myriad ways that doctors are failing patients because of gender bias, unexamined ideology, and the power differential. RNs tend to be better positioned to elicit patient trust and willingness to disclose concerns that Drs. Anyway, thank you for taking care of people

[@ravenesqueone3033]

I’m not surprised.

[@carolsdarksarcasm4223]

Same. RN. Never heard of this happening.

[@nicciyoung5348]

I am in utter awe at the strength this women has. She is telling it like it is and trying to figure everything out in hopes to inform others where she herself had lacked information. I admire how shes placing herself out there in the public eyes and just giving it everything shes got. I don't have this disease but I have a few friends who do and now thanks to her i may have answers that they're looking for. 💜 thank you for being so open and straight forward.

[@ravenesqueone3033]

Christina Young - Not unlike those of us who have lacked this information for 35 years. Sad to see patients these days aren’t being told everything yet by their medical professionals.

[@billmartz4290]

I'm just an old man with old female friends that have gone through similar things and they are reluctant to even discuss it. Thank you. You seem pretty sharp and very brave. I appreciate it. Good luck in your journey and Cheers!

[@martaecala]

it is so wrong that they didn’t even consider the effect that the surgery could have on surrounding organs

[@dunnotck1]

Doctors often don't give a fuck. My mom had her uterus removed, years later she started having tons of urinary tract issues. Turns out her bladder had basically dropped because there was no uterus to hold it! You'd think doctors would have mentioned it to her when she had the surgery, but no. One of the many reasons I dislike doctors.

[@philipcoffman4372]

@@dunnotck1 they have a mesh and b4 they used to staple the bladder to the internal stomach wall.

[@Debbiesdilemmas]

I had so much scar tissue affect my reproductive organs that I had them all removed four years ago. Because of that surgery now I have more scar tissue effecting what bowel I have left that it’s caused a narrowing and strictures. It’s causing me a great amount of pain after I eat.😥

[@philipcoffman4372]

@@Debbiesdilemmas does it shorten it your lifespan ? I mean in males low testosterone levels directly linked to a shorter lifespan. I feel bad for you guys

[@dunnotck1]

@@philipcoffman4372 Obviously it's fixed now, she had a second surgery to correct it. My point is the surgeons who removed her uterus could have bothered to tell her bladder collapse was a possible consequence so she could be on the lookout if she developed urinary tract problems. But they told her nothing.

[@taracary2500]

I'm literally in tears!!! Your story is my story, I have researched n tried to explain to my surgeons I have an Ultrasound on Monday Ahhh My last surgery for full closure n permanent ostomy was March 2019 & I have experienced the SAME Exact same symptoms you describe!! THANK YOU....THANK YOU for sharing your story ❤ from myheart2yours

[@kassandrakid9440]

Same! I don’t have the Barbie butt, but everything else....that’s me too. Same surgeries, same symptoms currently happening. Was not expecting to find this information. My doctors have had no answer for these symptoms and I’ve been wearing a pad for a year. Ileostomy December 2008. Rectum removal November 2018. The discharge started after the rectum removal at some point. Appointment with a specialist regarding my symptoms coming up soon. Now I have some leads to go on at least. This video was very helpful And I really appreciate your comment as well!❤️

[@misaoce3423]

Thank you for this video. I'm a general surgeon, and no female patient has never complaint about this problem to me; but now that I know that's a possibility, I would ask specifically the ones in their fertile years about it, because maybe some are experiencing it but don't know why, without thinking it maybe is related to the surgery and then I can give them some answers.

[@LetsTalkIBD]

THAT IS AWESOME! I'm so glad you'll be doing that!!

[@kassandrakid9440]

Really important! It’s happening with me too! We need your help!❤️

[@essymidragon3478]

I wonder if the lack of people reporting this is related to the age range of people who have a proctocolectomy as it has been in the cancer sphere longer than the IBD sphere.

[@misaoce3423]

@@essymidragon3478 I think it's a important factor, of course. The majority of my patients are over 50 years old, but it's good to be aware of the few cases that it can be a problem.

[@thaisb.6815]

Maybe they were embarrassed to say? Just thinking of how periods are still taboo generally

[@MellyBenelli]

"Unicorn tears on every third Tuesday" lol. I can do without those people.

[@angelland4962]

I don’t know about you, but I could also do without the “if you change your diet, you can cure your Crohn’s Disease.” Especially when I was tube feeding/TPN!

[@determinationandgod7836]

@@angelland4962 😲 some people, and the unicorns 🦄 🙄 tears, cracked me up 😂😂😂🤣😂🤣😅🤣😂🤣 poor girl ,the hardest part of a sickness is dealing with ignorants

[@Sunshineonmymind714]

“Just rub essential oils on your tummy and butt, you’ll be fine” 🙄🤦‍♀️

[@angelland4962]

@@determinationandgod7836 Just hold these healing crystals and meditate...you’ll be cured!😉

[@ANTSEMUT1]

I know it's stressful for her to deal with people like this, but we get great jokes like this out of her.

[@nudgenik1899]

They should invent some kind of balloon/implant that they could insert after rectum surgery to take up the empty space so the support for the neighboring organs would still be there. Just a thought...

[@turtlemann14]

a boobie bag! but really why not just use a saline implant? might be odd to anchor it though

[@KarynHill]

Not sure how well that would work during pregnancy. It seems like a complicated issue but it doesn't make sense that surgeons haven't worked to find a way to improve this situation.

[@spiritussancto]

They use saline implants if someone has a lung removed sometimes. Seems reasonable

[@heidiho5179]

Nobel Prize 🏆

[@smudgerat9624]

You could maybe do this after a hysterectomy as well? It can cause a similar problem - the uterus supports a bunch of other stuff down there.

[@808atlas5]

Even though nothing in this video actually applies to me, I somehow still wanted to thank you for sharing :)

[@furi806]

Me too hon. Thx so much

[@dorkstar97]

Same

[@irenebernal5991]

Ditto 🌹💫

[@missdiction4455]

I have no idea why this was recommended to me, but I’m feeling very educated now, so thanks for your openness and honesty.

[@sasak369]

This isn't something that affects me or my loved ones, but I still feel grateful to you for sharing these experiences. I'm so sorry your doctors didn't warn you about this, that's so scary. People in positions like yours sharing their experiences is invaluable to future patients. Thank you.

[@aloeveraavocado]

The lack of evidence out there shows how the medical field (and honestly all other fields) should reallyyyy reallyyyy start documenting women’s symptoms and side effects of a medical condition or post-surgery condition. One of the reasons why there isn’t a whole lot out there is because they don’t acknowledge/care to acknowledge the differences that women experience compared to men. Thank god women can talk about their experiences now online so they can share their info with other women. Thank you so much for sharing this, you’re helping another woman who’s going through the same thing.

[@jesbenji9742]

Myself and female friends always note this too - if these problems had been suffered by men since the beginning of people there'd be a cure by now.

[@stephs853]

Really probably because this surgery isn’t often done during childbearing age. As more stories like this surface it will help develop some sort of support system for reproductive organs. As soon as something is known as an issue in either XX or XY, there are labs and people thinking of ways to support. It’s really not a sex thing, it’s a lack of information thing. Now if doctors & researchers are ignoring concerns then I’d agree. For now I think it’s lack of data. (Yep I’m female and in the research field-this is something I would have overlooked as well)

[@stephs853]

You’d be genuinely shocked at what people overlook. I had another female colleague design a protocol that would require the scientist using said protocol to be on their feet for 12 hours straight for 3 days in a row. This gave little concern for pregnancy, as I was training two pregnant women at the time, we realized this protocol was unnecessarily straining. And this also doesn’t begin to address people that cannot stand that long for other non-biological sex related issues.

[@Mike-om4tv]

You're making quite the assumption here and painting with a broad brush...you're also ignoring the fact that this woman goes to a gynecologist and that person who also specializes in women's health was unable to give her an answer as to what was going on here. Take your agenda elsewhere.

[@cj8527]

You're getting a bit of backlash from your comment, but you are 100% correct. As someone studying physiology I can assure you that we are aware that historically clinical studies were only conducted on middle class white men (this is fact and not intended as racist of sexist). Unfortunately we are only starting to research the surprisingly large amount of differences between men and women. A fantastic example that I find incredible is that men and women have different immune responses to pain, especially chronic pain (and I mean vastly different). And this actually affects pain management and how women are stereotyped in the Healthcare setting, because all the treatments are based on older studies done only on men.

[@Zoot_of_Anthrax]

This video was randomly recommended to me and being an avid learner of medical stuff i couldnt help watching. But lesson one i learned is i cant hear someone say “rectum” without the voice in my head going “rectum? Damn near killed him!”

[@lavenderoh]

It took me about a year of nursing school to stop thinking that every time. Thanks dad. 😂

[@horsesgirl16]

The world's most popular dad joke

[@ralsharp6013]

Oh heck, my father told me that from joke when I was a teenager. I still wonder why hahaha grin..🤣😂

[@deja957]

@@lavenderoh I don’t get it 🥺

[@scifydi6446]

My dad loved that one lol. Also this one: What did the fish say when he hit a wall? Damn.

[@Noodles4Anime]

"Women experience more discharge post surgery." Hm. They probably went "eh, extra discharge wont kill anyone" and so didnt research and test why the discharge was happening.

[@We_Are_All_Vultures]

Also.. being on antibiotics can cause problems such as infections in your vagina.. no one tells you this stuff

[@ravenesqueone3033]

Noodles4Anime - No, they didn’t. Been there done that.

[@ravenesqueone3033]

Jessica Girl - That is common place knowledge.

[@XxFluffyxX]

@@ravenesqueone3033 since when lol

[@jednrrp]

@@ravenesqueone3033 doctors don't really tell you that shit, or like how your birth control doesn't work when you're on antibiotics. As a 23yr old who was misprescribed antibiotics as a teen for bronchitis at least once a year, the doctors never ONCE told me about the side effects to my female reproductive system

[@kelcim817]

You’re helping everyone that faces this after surgery.

[@kimessex1711]

GREAT COMMENT😃

[@BloodyWiccaG]

Mama Doctor Jones would probably be interested in at least talking about this :)

[@kourtneyw8442]

My immediate thought when I saw this!

[@amandagrogan4536]

And Hannah Witton too!

[@gretacianflone3655]

Can we like tag her or something?

[@leahvanraalte]

Yess👍

[@That.Lady.withtheYarn]

Yes!

[@86bIDO52JF]

It is infuriating how little research is available re: women and all elements of health. There is no reason in 2020 for any surgeon to not know about your symptoms or what to know post op. My goodness! Thank you so much for your channel. It is so important and helpful! I also wanted to mention that I'm on continuous birth control so I don't get periods. There is plenty of research and this is safe. Women can also choose to have their periods every three months, for example. My periods were really tough and the relief I get now is sizeable. Something for you and your doctors to think about?

[@ScarsFromTomorrow1]

Not everyone can be on bc though. For instance my periods are an absolute nightmare but I react badly to the hormones. And goddamn it's a fight (that I'm still in the middle of) to have anything more permanent done because "bUt WhAt AbOuT bAbIeS?!"

[@ellief7963]

@@ScarsFromTomorrow1 I feel you! I have the same issue where I have periods that past ages and are super heavy and painful to the point I turn anemic. But hormones don’t control it and cause bad weight gain and severe migraines that are incapacitating. There are people where hormones are really helpful, and it’s definitely worth exploring if you have bad periods, but they don’t always work based on the person. It is frustrating though having doctors not know what to do and refuse to do anything permanent because “babies,” so I really feel you here. Stay strong ❤️

[@ScarsFromTomorrow1]

@@ellief7963 Yup. My only chance of accomplishing anything is by getting diagnosed with dysphoria and having a hysterectomy. I do have dysphoria but it's insane to me that being in debilitating pain and being housebound for days isn't enough.

[@86bIDO52JF]

@@ScarsFromTomorrow1 You both are totally right, not everyone can take birth control. I am so sorry you have dumb doctors who don't honor your body and wishes. If you can, you should find another doctor. It's extremely frustrating to start over, and sometimes it takes many attempts. I've been there and am thankfully now with a great NP. I wish you the best and hope you get relief NOW.

[@fancydeer]

I do the same thing! Any time I am off of the pill I'm in pain. pcos is no joke. I love the side effect of not having a period ever if I don't want one. It sucks some folx can't handle hormonal birth control because for myself and my needs it has been a miracle. For some people the IUD is a godsend. For some the depo shot is amazing. Every single person is different. Some people can't be on anything. Its nice that we do have some options though, if we had every option available that would be better.

[@deandixon7994]

I commend you for sharing something so personal just to benefit others who may have had the surgery or have found that a drastic surgery like that is the only option. I'm sorry that something so life altering has happened to such a kind and thoughtful person. Bless you.

[@sarahhendricks5666]

You are a very special person to be so open about your health issues. Most people would hide things so as to not appear "different". I fell upon this video and found it to be very educational. I'm a 71-year-old grandmother and send you prayers and positive vibes!

[@napqueen2628]

I must NEVER complain about my period ever again.

[@Oshidorinohina]

It's okay to complain about it. Just because someone else's life predicament seems worse doesn't cancel your right to be upset about something.

[@tulasipriya]

If she has the right to complain, she also has the right to choose not to complain. She never said others shouldn't complain, only that she wouldn't. Why do random strangers feel the need to police an individual's response? Sheesh.

[@lindseyariegel7703]

@@ephyliaa383 thank you. came here for this comment. I have a lot of health issues and it breaks my heart when friends and family complain to me about their problems then say "well it's not as bad as what you're dealing with." and I basically have to tell them what you just said. everyone has health issues and pain just because someone might have it worse doesn't make your suffering any less. 💖

[@stepford702]

@@tulasipriya I don't think any policing is being done here. Of course she can choose to not complain. But what is being said is somebody else's suffering does not invalidate hers. For example, I had to have a hysterectomy at 28. A friend of mine was complaining about the miseries pregnancy brings with it. Then, she immediately felt guilty because I had no uterus. But my not having reproductive organs did not make her swollen feet, non stop morning sickness, stretch marks, heartburn, and feeling like a whale any better. So, why shouldn't she complain about the things that are making her feel crappy? There is nothing wrong with acknowledging our own difficulties, even though someone else might be having a harder time with the same problems. They aren't policing. They are being supportive and thoughtful. This goes for you too. Don't dismiss your own difficulties in regard to someone else's. Your feelings are valid just as they are.

[@lisaruttenberg5886]

@@ephyliaa383 :) great advice More of us need to learn this mindset.

[@thepariah3516]

"Sorry to the guys watching" nar, don't be. I'm here for empathetic reasons.

[@noahLittle-smith]

Same

[@danikat4334]

Dude! Surgical colorectal nurse here... Never heard of this. Totally going to ask around (and bring this up with the ladies). Thank you.

[@kassandrakid9440]

Please, please do! I’ve been going through similar stuff as her and none of the docs have known what to say or do since all tests come back clear.

[@becuzicaniammaryanne5964]

As a colorectal nurse you have seen colorectal surgeries for colorectal cancer. I had an ileostomy following colorectal surgery for cancer. After a year of healing, I had an ileo takedown and traded one inconvenience for another. Scar tissue created a stricture at my colorectal juncture. For the last ten years I’ve had to do an abbreviated enema, sitting on the toilet, to be able to pass my bowels every day. I never hear anyone talk about this and had to figure it out on my own. The scar tissue site has been stretched a couple of times during colonoscopy, but the stricture still persists. Have you ever heard of this?

[@ahah1785]

Well its 3 am and this sounds just the right video to watch for a guy at 3 am...

[@aniandthebeatles]

I'm literally sat here with an ostomy and no rectumn, on my period, under investigation by gyne as to why my periods now last two weeks (and why I can't concieve and have abdo pain)!! It's been over a year and a half since my last surgery and no one can tell me why so far but maybe this is something to do with it... Thanks for talking about this.

[@quirkylotus482]

If possible, ask to have your tubes checked. For some reasons, women with IBD sometimes get hydrosalpinx (blocked fallopian tubes). This can cause fertility problems.

[@miunya]

Check for endometriosis also

[@pipermaisiemae1999]

Good luck to you. I sincerely hope you get pregnant.

[@theseventh5204]

Make sure you are eating enough heme iron. Our bodies can go abit mad when made to bleed out blood (and nutrients) it can't afford to. Heme iron is in red meat and organ meats like liver. It also helps with any anemia. Dr's won't tell you this stuff...they just give pills. Heme iron helps!

[@sarahmarieee]

Definitely check for endometriosis or adenomyosis :)

[@brookelamprecht-carson7020]

Contact Mama Doctor Jones! She’s an OBGYN and I’m sure she’s love to bring light to this and make a video with you as well! 😊

[@jenword]

Yes!!! And I feel like your personality would go so naturally with hers too. But this is a great one for her videos and it would add a lot of visibility to the subject from an audience looking for stuff about obgyn rather than ibd.

[@stargaze17]

That would be an amazing video!

[@gabiklw]

Oh nooo she’s such a bully! And genuinely believes that men struggle as much with health as women 😭

[@louem2491]

@@gabiklw medical issues aren’t a competition

[@katyj2469]

Gabi Watson that’s completely uncalled for - all people struggle at different levels with their health and you are invalidating the struggles of millions of people

[@femboyleftist8298]

As a man I’ve never heard of this, thank you for educating me! I think it’s really important to learn about different conditions

[@rickskeptical]

Thank you so much for discussing this. My wife died from colorectal cancer after fighting it for 13 years. I so wish we had info/personal testimonies like this. We also endured 13 years of "loving/helpful" solutions to all her problems. May you have a long, productive and happy life.

[@debraanderson7086]

I am sorry for the loss of your wife. My b.i.l.'s sister died from colon cancer 3 years ago. She died within a year after finding out she had the cancer.

[@rickskeptical]

@@debraanderson7086 Thank you and I am so sorry for your loss as well. Too often this cancer has no symptoms until it has been there for years and spread. My wife's cancer never spread to any other part but stubbornly returned to the same spot every two to three years despite every effort. I hope the pain of your loss is replaced over time by the gracious times you had together.

[@schnauzermom6352]

Wow! I'm so sorry you're going through all that. Chron's is a horrible and cruel disease. Thank you for being so honest and open about it You're helping so many people by sharing your story. Way off topic, but your braid is fantastic!

[@mtalspaugh]

I was actually so distracted by how on point her eyeliner was and how pretty the braid was!

[@schnauzermom6352]

@@mtalspaugh ALL. OF. THIS!!

[@101sanford]

@@mtalspaugh im the man

[@olingecko]

This makes me so angry! Women's issues need more attention.

[@codename495]

You make it seem as if most women have the exact same physiology as she does. Having a cololectomy is incredibly uncommon. It’s not a feminism issue, it’s that it’s just not common.

[@olingecko]

@@codename495 This is just one of the many instances where things like this happen. Women's issues are an afterthought in so many areas of healthcare.

[@BhappyD]

Code Name When it comes to this surgery in particular, you’re right, the issue here is primarily that this is not a common surgery. That said, it is widely known within the medical world that women’s health is not well studied compared to men’s health. Every disease (aside from diseases exclusive to women) was/is almost always only studied and researched with male patients. This is a huge issue, as they have now learned overtime that women’s bodies present VERY differently than men’s bodies do for the same conditions. Heart attacks, for example, were only studied in men until recently. This created huge issues because the symptoms men experience when having a heart attack are not the same as the symptoms women experience, yet for a long portion of time the symptoms that men experienced were considered universal between the genders. As a result of this, many women died unknowingly from heart attacks because their symptoms didn’t align with what they were told to look for as warning signs, even leading to doctors themselves unknowingly brushing off heart attack symptoms in women as again, men were the only ones being studied. And this goes far beyond heart attacks, this reaches into every area of medicine, with women’s health being extremely under-researched and underfunded. When it comes to Maggie’s surgery in particular, it’s not a common surgery, but I would be willing to bet that out of any research or studies that have been done regarding this procedure, they would primarily or exclusively have been done with male patients. Any patient going into this surgery would be underprepared, regardless of gender, but that under-preparedness is even more heightened for female patients. I am not someone who subscribes to modern feminism by any means, but the lack of women’s health research and data is a major worldwide issue that desperately needs more funding and attention. I am hopeful that researchers are now becoming aware of the fact that women’s and men’s bodies behave very differently and are not universal to one another, but we still have a long way to go, and it’s important that people are made aware and are cognizant of this.

[@annetteslife]

Amen my sister!

[@Michelle-pn9xt]

@@codename495 She is not talking about feminism or politics. This is about women's bodies. The creator of the video is a woman, and she mentioned things that would only affect men. Everything is not about men vs. women. This video is not about your agenda.

[@bizarrestar4043]

Sounds like doctors not taking women seriously setting the standards once again

[@wordswritteninred7171]

So all those women doctors are just what? women haters? Maybe if women spoke up more, maybe we would have more knowledge about medical treatments. Also, it has more to do with money than it does sex of the patient. Of all the things the medical industry is doing wrong, DISCRIMINATING AGAISNT WOMEN DOESNT EVEN MAKE THE LIST!

[@sunnysodapop]

@@wordswritteninred7171 Maybe you should consider WHY women have a hard time speaking up? Because when they do, doctors dismiss them. This isn't exactly uncommon. If you think women aren't discriminated against in the medical industry, including with gynecologists' of all people...well, how ignorant you are.

[@almamurphy2990]

@@wordswritteninred7171 women DO get dismissed more. By male doctors more, but yes by women doctors too. I literally had a GYNECOLOGIST(who was male) tell me that women tend to maximize their own pain- He then sent me home with "Try thinking positively about your pain, and just take ibuprofen for the pain" This is after me wasting my time to have an appointment with him after I've been having this ongoing extreme lower abdominal pain for 2 YEARS. Yeah. Women aren't taken seriously.

[@burdistan]

@@wordswritteninred7171 lol women literally die bc they're not taken seriously by doctors. My aunt went to the doctor with severe chest pains, he gave her an aspirin and sent her home, where she had a heart attack and died. of all the things the medical industry is doing wrong, discriminating against women is at the top of the list.

[@IsleNaK]

@@wordswritteninred7171 you are aware that there's barely any medical research done on women and that pretty much all medical subjects are male which results in doctors barely knowing how the female body works...? Are you wondering why women are excluded...? Well because their hormones fluctuate throughout the month and to get "good" research results you need to control as many variables as possible. Obviously not possible with those hormones... Now, once researchers got their "good" results, they just apply them to women, e.g. they just reduce the dose of a medication to fit the lower weight of women, they just pretend that women are the same as "short, small men". But here's the issue: if women were just short, small men biologically then why exactly were they excluded from research again....? Ah, right, because mediciners assumed that the fluctuation in hormones would interfere with the effects of the tested medication. But once the medication is completed they suddenly drop those assumptions and pretend the hormones won't interfere...? ... That's not how it works... So, there you have a few facts about the nonsense that women have to deal with when it comes to medical treatment. Don't believe me...? Then I recommend you just Google it yourself ;)

[@cindysackett4942]

I recently had a colonoscopy. One of my nurses said that if it wasn't for this procedure, I would have died. You look happy even with everything you have gone through and that is a great accomplishment.

[@heatguy100]

I work in healthcare and when I saw this I immediately hit the like-thank you for doing this! It’s amazing and you’re awesome. Need more ppl like you to help make this info accessible!

[@susancage9997]

I had a ostomy bag for 3 years. I never, ever got any helpfulness info. I even had an ostomy nurse who really didn't know how to put a bag on and also, the poor nurse's s aides were lost! They hadn" t been given any info to help patients, especially females. I just happened to come across your channel. Girl, you are so brave and a godsend! Keep it up!!!

[@emmahauschild4096]

I'm sure you've looked into everything but I wanted to recommend period panties. If you like pads, period panties are great because they cover both front and back and can hold a lot. I get mine from Thinx. The only thing is you need a few so you can wash old pairs and they can get expensive but no need to follow this advice. You are doing amazing!

[@msguineapigsrus]

I also recommend thinx. Thinx has supers now, that hold up to 4 tampons worth of flow.

[@MS-hs1ew]

Bambody are a great and cheaper alternative! I got a 3 pack for ~20 and they work great. They run a little small and shrink after washing but work GREAT.

[@biancasumfinrandom1653]

Thank you for thinking about how to word your comment and therefore being very polite about it.

[@ravenesqueone3033]

Unless they’re like high waisted thongs, they’d be useless for me with the ostomy.

[@bellatrixblack469]

I was also thinking about maybe a period cup, since they hold so much liquid. I would think it would be so much better than a soaking wet pad, less mess. But it could be painful for them? Idk.

[@didacorleone]

I have never ever heard about Crohn's disease or proctocolectomy before KZbin suggested a video from this channel (that I watched bc of the curious title). I have been checking the videos ever since and I find them very educating. I think you are doing a great job sharing your story with people that have the disease and with people that have never heard of it.

[@LetsTalkIBD]

Thank you so much and thank you for watching!

[@Aemirys]

Here here! I second that motion!

[@flowingwaters5118]

My Dad has Crohn's diagnosed in the 70s when it had not good treatment options. His never progressed to your point but it was not an easy disease to live with. Great information well presented

[@davegoesthedistance]

Ugh, the “getting out of anal sex” comment hits home for me. I was diagnosed with UC and had a massive flare-up 9 years ago. As a gay man that was in the closet at the time, I basically went from thinking I needed to get my meds changed to a week in the hospital to coming out of the closet in front of strangers so I could ask the surgeon if I could ever have anal sex after having my colon removed. Even a friend with Crohn’s that has the “Barbie butt” didn’t think about how mentioning teasing a gay friend and not being able to have anal sex would be really emotionally difficult for me to hear. Anyway, sorry to derail, but the point is I appreciate your honesty and openness and COURAGE to share this story, and I totally empathize with the ongoing drama and commentary from people about it!

[@linanicolia1363]

Do ask your doctor. Do not be embarrassed as they are used to everything and anything. They do not judge. They just want what is best for your health. Sex is mostly in the mind so creativity comes into play. That is my personal, non medical opinion......Monks never have sex and they have a great life ! Not promoting monks, but it is their life, to be spiritual. Sounds pretty good to me.

[@sasak369]

Wow that sounds like a scary process! I hope you can still engage in intimacy even if you might have had to make adjustments.

[@EA-eq8ej]

You're so brave :(. I can't imagine what that stress is like, I hope you're okay. I wish I could give you a hug

[@byawned]

Man thats messed up. I didnt even realize this was something that people went through. I totally understand why that would hurt your feelings though, thats just not nice! Either way you slice it!

[@nobodyvotedforcreepyjoe.5060]

You what? That's disgusting.

[@heoniebee9566]

“Why didn’t they warn me?” Lbh, when do they ever warn women and uterus-havers about anything?

[@translarrybutz]

@@katiecarlson5192 uterus-havers would refer to transmen or nonbinary people, women would refer to cis women who have a uterus (which is not all cis women)

[@pugdad2555]

@@katiecarlson5192 isn't your comment redundant?

[@mroznowski2185]

@@katiecarlson5192 you tried, but flipped what you were trying to say on its head

[@mroznowski2185]

@@translarrybutz thank you for clarifying this, it hurt my brain reading the other comment lol, I'm glad that you understand

[@katiecarlson5192]

@@pugdad2555 yes it was redundant.

[@ChlorineBee]

"Period proof" (like Thinx or NoBlood) underwear have changed my life! Having watched your video I would recommend these. They can be worn daily, super absorbent and come in different shapes and sizes.

[@VioletEmerald]

What brand do you use? I hate that all the period underwear I've found so far isn't absorbant over a wide enough surface area while sleeping especially as a plus size woman who needs the period underwear to catch flow like all the way on my butt lol

[@ChlorineBee]

@@VioletEmerald started off with Thinx, but I think NoBlood works really well for me and is more affordable. I've asked for these as a Christmas or birthday gift in the past and use them all the time 🙌 On a heavier flow day/night I will double secure myself with a pad "just in case" but have not had any problems so far xx

[@ronbuck3575]

My God lady, you are the most courageous person I’ve ever watched. Carry on!!

[@ts4686]

Its shocking that surgeons dont care about knowing ALL consequences of the surgery they're performing. This particular issue with the vaginal wall collapsing due to the surgery is heavily influenced by the patriarchal dominated way the medical world is managed. We often have to find out about things from other patients because our surgeons/doctors/specialists etc dont tell us. It is pretty sad. You're strong and courageous for coming out in public talking about all these things. You're helping many people! Well done and many blessings to you.

[@linanicolia1363]

She is doing a great job. She needs to write a book.

[@ts4686]

@@linanicolia1363 Yes I agree. That would be wonderful.

[@heavennunya809]

I mean, but to be fair, you don't know what you don't know. I mean sure, there's every chance her surgeon didn't stop to think at all and had no consideration, but at the same time, she LIKES her doctor. Sometimes you just don't know there's going to be that side effect. I mean, clearly he had never heard of it before because when she was having that issue, even he was like "well, that's..... weird....." and once she informed him from someone else his response was "Yeah, that makes sense". How are you supposed to know you don't know something?

[@ts4686]

@@heavennunya809 That is a rather fallible theory to apply to a surgeon, who should know something as obvious as this happening. Its the 21st century. It is not as if the consequence of their way of doing this procedure is in a place of the body or field they've got no knowledge of (like her arm being affected). It's literally sharing the same wall of tissue. So no this isn't acceptable in any way. Couple that with the horrific history of misogynistic patriarchy which modern Western medicine is based on, this is in a way not shocking because it is following the same vein of negligence, abuse and indifference given to anybody who doesn't only have an incomplete set of XY chromosomes.

[@heavennunya809]

@@ts4686 Honestly idk what most people are on about about "abuse from the medical industry", at least in relation to sex. The worst I've ever had from a doctor, as a woman, is being dismissed, and that isn't a sexism thing, doctors dismiss my dad when he says shit too, it's because doctors think they know everything. That's certainly a problem, but it is hardly sexism. It always seems to me people just ASSUME men have an easier time with doctors than women. I mean really, Crohn's disease is fairly rare as is, the surgery among that group would be rarer, and as she said it doesn't seem every woman has this issue after that surgery, meaning that the odds of this happening is incredibly unlikely. Much of a doctor's practice is based in experience. Yes they study for YEARS, yes they continue to study, but the human body is complicated, and you can't expect them to know everything. It's part of the reason doctors tend to specialize on certain parts of the body.

[@entombedmachine1518]

OMG I was literally thinking about the "anal sex" comment/joke as you said it hahahaha. Wasn't gonna' say it but I am happy to know you have a good sense of humor! Stay tough, you obviously have a great outlook on life. I'm sorta' envious of your strength.

[@MsSixx1]

I've been living with a total collectomy/illeostomy for 11 years and I'm waiting on my proctocolectomy which should happen in the next few months. It's a hard road which I know well. Good for you for being open. I am too~~most people respect it. I certainly respect it!!

[@jeniseweeks671]

Hey hey hey you're my sister I have no colon rectum or any of that God bless you my fellow crohnnie

[@tamaram6964]

I’m a nursing student, I love what you’re doing here! Very brave

[@ericmalone3213]

Maggie's matter-of-fact attitude mixed with humor is superbly healthy.

[@ChrisWakitsch]

This isn’t anywhere near as serious as what you’re going through, but toward the end of my having periods, I would bleed so heavily at night that I couldn’t turn from one side to the other without gushing blood. Finally I started wearing Depends at night, because no pads could do the job of containing the flow. I was then able to sleep without fearing I’d wake up in a wet red pool.

[@heidiho5179]

I do the same. I have endometriosis and adenomyosis, as well as multiple ovarian cysts at any given time, including some more permanent cysts that bleed monthly. You should be checked! I am full of bleeding adhesions, cysts, and tumors, thus the excess blood flow. I especially hope you will get checked (if you haven’t) if you have bleeding between periods. It caused me infertility, which might have been prevented if I had gone in earlier. One thing I learned is the manual exams, scopes, and ultrasounds they were giving me weren’t enough. The doctors were minimizing my symptoms, and one even said, “I would feel it through your abdomen if you had endometriosis.” Two female gynecologists later laughed at that statement, telling me the only way to know for sure is exploratory surgery. By the time it got done, I was infertile. Anyway, sorry for rambling if you already know your situation. I can definitely relate, either way.

[@queenb67]

This is my life at 52. Perimenopause for me has been miserable. I can't wait until it's over!

[@nikkirose8199]

Been there! Now I use mega large cloth pads at night (14 inch plus) and like 10 inches during day Cloth pads are my savior

[@elledix3575]

@@queenb67 Same for me since I was about 52! Practically confined to the house once period starts and can be for up to two weeks at a time. I never know when huge blood clots and floods of blood will happen.

[@sgussy]

I love depends. They allow me to have a great sleep. Being 47 and nearing premenopausal I sometimes stretch and ... thank goodness for depends!!

[@zehnareddon9559]

I have all my body parts and my period still “pools” lol I feel that.

[@loverlei79]

I've come to love depends. I find the men's fit better too.

[@picklepirate]

@@loverlei79 ^ this is a game changer

[@Anna133199]

@@loverlei79 Depends? Is that a diaper brand or something?

[@loverlei79]

@@Anna133199 umm yes. The most popular brand since the 80's. The only difference between a "diaper" and a menstrual pad is advertising and social conditioning. If you're pooling blood, urine or feces a tiny pad isn't going to do anything and a thicker pad is just going to mishapen and leak. Mens depends is a life saver. You won't leak, they are comfortable and since they are shaped like briefs and form fitting no one will no your wearing them. It's a lot better then bleeding everywhere.

[@TotosTales]

Same - no clue if you’ve talked to a doc about it but it may be that you just have a naturally leaning vagina/uterus, which is what I have! I’ve seen half a conversation in the comments about leaks etc, and I’ve found period underwear great as it sits like regular knickers but is as absorbent as about 4 tampons - the brand I use is Flux but I’m sure there’s more and local ones to where you live 😊

[@too_tired_for_this]

Unicorn tears 😂 that cracked me me. I get tons of suggestions for treating mental illness, but unicorn tears is a perfect example!!!

[@abistarr4820]

I have chronic illness and I feel the same too!

[@dianadevlin3717]

Gosh, you've certainly been through a lot. This was so informative and well presented, thank you. I wish you well 😊

[@seecanon5840]

I had a complete hysterectomy when I was 64. After surgery I found I couldn’t stand without feeling empty.. like a hole was in my abdomen where there had been useful guts there. Two years later and I still have that emptiness when I stand up. So there are facts your doctor forgets to tell you about after.......you have to turn to KZbin. Good luck on your health.

[@michellequinones7097]

I had a hysterectomy 5yrs ago at 45. I know that empty feeling, no one told me about that. It was awful, I felt just empty and weak in the middle. I still feel off at times, but hate the feeling of my intestines being in the spot my uterus was. That sucks too.

[@Flashygrrl]

I fortunately had a friend warn me about how it might feel!

[@Karrambide]

Gosh my mom would know how u feel.

[@ladyfaye06]

That’s odd. I had one and I’m 32 and I don’t feel any different (sex and orgasms are normal, not emptiness or anything like that) . Is there a medical reason why this happens to some people and not others? Just curious!

[@Flashygrrl]

@@ladyfaye06 probably just that everyone is different.

[@irenecalderon969]

We are in 2020 and we are STILL finding "new" things about women's bodies...🙄 its frustrating that there isn't more information about our bodies.

[@Mentocthemindtaker]

Medical science is still catching up in the "finding out about women's bodies" area.

[@allotherlightsgoout]

Women are pretty darn amazing. God made us wonderfully, and I think it will be a long time until doctors know every thing about our bodies. What's amazing is they are learning all about men's and children's bodies, too! And they're discovering more and more cures for various sicknesses. The creativity and intelligence God has given mankind to explore and discover is truly AMAZING.

[@heavennunya809]

Honestly, it's 2020 and we still find new things about everyone's bodies. We are farm from the point where we know "everything" about a man. Modern medicine is also relatively recently as advanced as it is. It's all grand and wonderful to say "It's 2020", but it really doesn't mean much. I mean, it's 2020 and we're still learning "new" things about physics! It's 2020 and we're still learning "new" things about math. We will always be learning.

[@Zebracorn46]

It's not just women's bodies we're learning about...still so many questions about how the human body fully functions. It's a phenomenal system. It's insane what has to go right just for one successful heartbeat to occur.

[@jayjaydubful]

Yep. Have you read Invisible Women? It's an essential read & exposes how women have been ignored in research & data & the impact that has. It's the best explanation of systemic sexism I know of & men need to read it as much if not more than men do

[@TristouMTL]

Well, with this Covid thing, or perhaps it's the rising cost of labour in China, or climate change affecting their natural habitat, I haven't been able to find unicorn tears anywhere, not even on Amazon. It's reassuring to hear that they're not as effective as they're made out to be. Thanks for clearing that up!

[@pennybutcher4074]

I’m post surgery and have had two periods . Exactly the same issue , pooling . Thank goodness I had seen this and knew what could be going on .

[@LordPrometheous]

When I started my first job as a field tech, I shadowed a guy who had Crohn's disease. It sucked for him, but he was used to it, so he just dealt with it. Once, we were working in a customer's house while she waited upstairs, and at some point she went to sleep. Of course, he eventually needed to use the bathroom--he didn't have an ostomy bag, he just had to drop a deuce several times a day. He used the downstairs bathroom, and of course then she decides to wake up. I was in the living room, cleaning up after the install since we were finished, not knowing what to say, expecting her to ask where the other guy went. (We're not supposed to use customer's bathrooms). He was quick on his feet (so to speak), and came out of the bathroom holding his hand, saying he had cut himself and needed to clean it in the bathroom. She was fine with that, and offered a band-aid but he said he had a first aid kit in the truck. We got outside and of course he hadn't cut himself, but I guess having Crohn's when you are always in the field, you gotta learn to be creative b/c like it or not, you're gonna have to use the bathroom.

[@kalen9395]

I would really love to see Mama Doctor Jones here on KZbin gynecologically weigh in on this! I really love the she has covered other KZbinrs stories and experiences and has a great wealth of knowledge. But best of luck to you girl and huge props for remaining positive throughout it!

[@kalen9395]

I’m not sure how to tag her on here, but if someone does please feel free

[@LetsTalkIBD]

I messaged her on Instagram - lets keep our fingers crossed this is a topic she can talk about!

[@hanamink]

Also, not surprising that you have discovered that a woman’s body isn’t being paid attention to by the medical profession..

[@kpzcbttp]

Yes, so very true!

[@jessicawendling2200]

I’ve been a surgical nurse my ENTIRE life and have had three C-sections myself... your sharing of experience and positivity is AMAZING 💗💗💗💗 I love your sweet, giving heart and willingness to open up your life to help others get through theirs. You are using the Internet for GREAT GOOD and it shines a light in a world that can seem so dark and hard for others.

[@sandrameesala6804]

I'm a med student and we were discussing IBD today. This is interesting!

[@empathicstarseed8860]

Please be the best doctor you can be. I am a medical assistant in an OB/GYN and have worked in primary care as well and I really do not trust doctors 🥼.

[@ashleyadkins464]

@@empathicstarseed8860 👀details please

[@roxannerodriguez7075]

@@empathicstarseed8860 that's so sad... You're seeing the ins and outs of the doctors office, and you don't trust doctors now? But I'm so thankful for your honesty! Because it just lets us know that we need to be diligent when it comes to our health, and ask as many questions as we can! Sometimes we need a 2nd opinion! Research online or find a group for people who have the same diagnosis or surgery we have! We can learn a lot from each other! I also like to use the pharmacist as well- sometimes docs want to prescribe me so many medicines without much consideration for the "whole me". But the pharmacist knows what meds I'm on or have been on, and they often know more about the medications themselves, than the doctors do. Or they will do more research into the medicine for you than the doctor may have. I just appreciate the pharmacist I guess, lol. 😊 I hope you find a doc to work with one day, that will restore your faith in their work!! 🙌

[@lorrainequintana1082]

Mama doctor Jones would be a perfect person to collaborate with!!!!

[@jerryroubideaux1266]

I admire you Maggie my wife Lisa lost her colon November of 2019 and had to ware an ostomy bag I lost her 9 weeks later

[@lauraarcher6996]

I'm so sorry about that. That's awful.💖

[@simplylydia4981]

I’m so sorry. You are so strong and thank you for sharing

[@E.Nicole]

So sorry about the passing of your wife.

[@sondrabradberry7590]

I m very sorry for the loss of your wife

[@happytraveller2122]

So sorry to hear that. My condolences ❤️

[@joshuaokoro-sokoh2993]

Me upon seeing the thumbnail - Periods come from the uterus. the Colon has nothing to do with it. Me after watching this video - Oh I see. It's an organ support thing.

[@Rlj38823]

You should reach out to moma dr. Jones on the gyn stuff...

[@irispostema]

A video with the both of them would be very interesting

[@Flashygrrl]

Yes!!!

[@emmaausten8365]

Yes It would help explain prolapse bleeding too. Thanks for talking about it.

[@stepheniegonzalez4507]

I love dr mama Jones!!

[@LetsTalkIBD]

I just messaged her, who knows if she will see! :) Would be a fantastic topic to cover as I did not realize how many suffer from this - even without the surgeries I have had!

[@jessicarenae5107]

*I am here bc I'm weird and I just enjoy learning about anatomy and anything about how our bodies work so this is really interesting to me! But the fact that you share your health issues and what you deal with is so amazing bc .. well of course your helping ppl!! And the fact that this issue is so personal, other ppl can get inspired by you to not feel embarrassed! Your amazing for being so brave to share your struggles and that's greatly appreciated!!*

[@penniewyatt9391]

Usually medical journals charge for the research papers/articles, but the authors are allowed to send them to you free for the asking.

[@stephaniefoster8603]

Came here to say this. If you email the authors and ask for a PDF, they are allowed to send it to you. They don't get any money from the publisher when you pay for the article.

[@evcotter08]

Also check out sci hub

[@mirimiriela480]

In my experience, they are usually happy someone wants to read it! Alternately, if anyone you know is connected with a college or university, they can ask a librarian for access. I know that isn't super common everywhere, though.

[@ayquemierda]

@@evcotter08 second sci-hub!

[@Starry_Night_Sky7455]

The more interesting question! How are you paying for all of this high end medical specialty stuff? What brilliant insurance is actually paying it?

[@DoulaGarcia]

Oh mygosh, I'm SO GLAD you mentioned Pelvic Floor Physical Therapy!! Not enough people know about this important therapy for both men and women. I kept thinking to suggest you look into PFPT, then you said you're looking into going and I shouted, "Yes!" Thank you for sharing your experience and educating. ❤❤❤

[@ArmednotTriggered]

Yes! Pelvic Floor PT seriously changed my life!

[@sarahwebb1778]

I'm so glad to hear another persons experience with this horrible complication/side - effect. I have the same since my proctectomy 3 years ago. Good to feel not so alone.

[@debiduncan8462]

My mother had most of her large and small intestine out and she also had the same problems with her periods . She has passed a few years back. She would have liked to have known about all this .

[@miffanwy]

Same, except mine was 8 years ago.

[@LIrons-Gators]

I have been trying to figure this out since my proctectomy surgery in 9/2019; it's maddening! I hope you have gotten some relief!

[@ChristineInNornia]

I don’t have IBD but I do have Endometriosis with adhesions around my bowel and bladder, my sympathies and my empathies♥️

[@EmilyRedeker]

I have that too! Endo flare up can really effect the large intestine and cause a ton of pain.

[@ChristineInNornia]

@@EmilyRedeker yes♥️

[@phoenixmoon5580]

Can you please give me some resources you'd recommend regarding endometriosis around the bladder? I am having bladder issues. My doctor is not wanting to do any testing for endometriosis due to the longer-term management of it being essentially medication I am already on. I would like to have some advice.

[@aldaddar]

@@phoenixmoon5580 get a new doctor

[@EmilyRedeker]

@@phoenixmoon5580 It's very common for people with endometriosis to also have interstitial cystitis, which causes the inside of the bladder to become inflamed and irritated. This is what I have, and it could be a possibility for you as well, but it may be something else. I'd recommend finding a women's health clinic if at all possible and tell them about your issues. I really hope you can find a doctor who will listen to your concerns. It's ridiculous how much medical neglect happens to women.

[@sophroniel]

I don't understand how you can talk about this difficult subject so gracefully. Thank you

[@LetMeThink007]

Agree re: lack of info for many female issues. Well done for speaking up. Stay safe x

[@princesslisamarie7860]

Totally agree. So many women suffer with so many things and no one speaks up. They think they are alone or they think it’s normal but in fact they are far from alone and it is far from normal. I don’t know why it is so hard for feminine issues to get talked about and studied.

[@nikkid.3318]

okayy... but she's literally the cutest and sweetest person omg

[@hupfer7047]

I’m a med student with a chronic disease. I think talks about these kind of experiences with any disease are really important . I will definitely keep that in my mind for later.

[@thaisb.6815]

You give me hope for a new generation of better doctors!

[@hupfer7047]

@@thaisb.6815 Don’t be too hopeful. As someone experiencing strange rare symptoms myself, I’m in a different position and have a different kind of motivation. The other med students around me are more mainstream. They don’t look outside the box. That’s sad.

[@suann9790]

I don't know why KZbin recommended this to me but this was such a great video, super interesting and educational. You're such a lovely well-spoken woman and I'm sure an amazing inspiration to everyone who has the same condition. All the best ♡

[@chelseaholbrook3189]

I had my proctocolectomy July 2019 for my severe Ulcerative Colitis that was unresponsive to medication and my colon was so severely damaged that it became necrotic. I have the best colorectal surgeon but when I came to him with the same issue as you about 4 months post op he had no answers for me and he use to be a colorectal surgeon at the mayo clinic and does these procedures regularly.

[@TheLumaya]

Mama Doctor Jones needs to react on this.

[@aliorios]

Thanks for talking about this! I recently started working at a colorectal surgery outpatient office . I never heard of this before and will definitely ask the surgeons at our practice about it!