Periods without a Colon/Rectum... Two Years After Surgery! | Let's Talk IBD
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- čas přidán 28. 06. 2024
- In this video, I talk about the difficulties I had with my period after colon and rectum removal!
Period discs I use: amzn.to/3PsobVS
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I hope you know how important it is that you are talking about this and are so open with your experiences! You're awesome.
She is very awesome and has a positive attitude even with what she has gone through.
I believe you've mastered the art of the thumbnail
Those who demonetize this really need to be mature. People need to know all this. Thank you!
THANK YOU--as a medical sociologist with an emphasis on gender/sexuality/periods/reproduction, I was so excited to find your channel and that you talk about periods! YOU ARE ***** GREAT!
I think you should do a collab/chat video with mama doctor jones on this kind of topic! I’d be interested in the education about womens health stuff with an ostomy from each of you chatting.
That would be absolutely fantastic.
I raised this with my surgeon before my proctectomy and he didn't know anything about it. I felt the anatomical/muscular difference as soon as I woke up from surgery.
Maggie!! I can’t even begin to tell you how helpfully informative and empowering your videos are. I also live in Bucks Co and have had unaddressed GI issues for years. Your content has helped me recognize my need to finally get things addressed and I have my first GI appointment tomorrow!!! And I’m excited!!! Your voice is important both locally and in the GI world - thank you for doing what you do!!
Maggie, keep talking about it! You are correct that folks need to know this.
Thank you so much for the informative video!
My spouse had a subtotal colectomy a couple of years ago. Soon after, his surgery, the surgeon went through some options: j pouch or proctectomy. We asked about complications and his response was “Nothing! We sew everything up and bingo”. After doing my own research, I found numerous posts and descriptions of serious issues/outcomes. Mainly the incidence of erectile dysfunction in men post surgery. It’s really upsetting that medical professionals aren’t giving us all the info we need to make an informed decision.
Yes, during the proctectomy, nerves get cut and the outcome is inability to have an erection. They will suggest a penile implant. Easy for them to say, not so easy for patients to hear. People have to do their now researches. It is available everywhere now. No excuses. Many surgeons see the positive outcome as their minds go blank about the complications. I remember a surgeon, explaining to a patient about his kidney transplant. It stuck into my mind as I was nearby, listening to him, while he explained everything to that patient, including what could go wrong, the complications, the meds he had to take, to stop the rejection, etc.....I was so amazed of his honesty and fortitude but what blew my mind, was looking at the patient face, as his eyes, lost focus, about one minute into the talk of the surgeon. He had tuned him out. He did not want to hear anything that was not positive. That is human behavior, I will never forget that reaction.....The surgeon, covering everything he needed to disclose and the patient, totally blowing him off. That is perhaps why , many surgeons keep information to a minimum. They know patients do not want to hear anything negative.
I love the fact you talk about taboo issues. So many people have some kind of problem with periods but yet it is hardly ever talked about. I haven't had a period now since June 2019 and I still don't know why. As someone who is overweight and has been a psychiatric patient I find it so hard to be taken seriously by doctors. But aged 25 I am facing the fact I may never be able to get pregnant. But the more I open up about the issues I am having the more I realise how many women have some kind of issue with menstruation. Videos like this will help even more people talk. So thank you!
This is how I found your channel in the first place a year or two ago-when I researched my symptoms and also couldn't find info except I found you and was like "Yes! Exactly this!". My gyno also thought about fistulas, I was treated for infections because of the discharge,etc. Neither my GI or gyn had info (and we're both women). Thanks for providing helpful information🙂
You, Maggie are such a resource for your community. Bravo!
Oh my god, thank you for talking about this. I have had similar issues. I have fibroids and have very heavy periods. The blood pools up and clots inside me and I have to take multiple showers each day of my period so that I can get all of the blood out. It's so painful that I can't do anything except lie on the sofa or in bed and take showers in between. My doctor has put me back on the combined pill to try and manage the times I have my period despite being over 40 and that not being as safe any more. I spoke to my stoma nurse about it and she said she's never had another woman report this kind of thing before!! I have another appointment with my GP next week to see if there's anything else that can be done. It's getting to the point where I either just want to go through the menopause now to get my periods over and done with or have a hysterectomy! But I really don't want any more surgery!
Thank you for discussing this!! No one told me what to expect once my vagina and uterus no longer had that support. I found tampons and sex so, so painful. There really needs to be more research and information given to patients.
Edit: I got ads while watching so I hope you're video isn't demonetized!🤞
and it's not like they dont have it either, they've known for ages now that removing any organ/part in the pelvis can cause the rest of them to collapse
I actually got an add for the part that goes with the bag I believe.
Thank you for sharing this information. I'm almost 3 months post hysterectomy, have suffered IBS my whole life, dx celiac 4 years ago. (Also, have severe sinus issues, aka allergies to everything.) Love the channel and the information, it's 2022, and far past time of women's health being taboo
Man, you really have been through it the last couple of years! Sending you healing vibes and love.
You're such a great example of overcoming, not being a victim of your condition and showing people what is possible. Incredible
Bravo to you for talking about this! I’m sure that you have helped more people than you will ever know! 👏🌺🌻
I love how open you are about this!
Maggie you are here for such a time. Thank you for helping so many people, even though you can't see. God bless and keep you and the fam.
This is a great video , I too have had my ostomy for 13yrs and was never told any of this before or after my operation, thanks so much for making things a lot clearer , your amazing 💕
It would be really cool if you could do a collab with Kim from Period Nirvana - she knows everything about menstrual products (including loads about reusable discs) and also has Crohn's herself
Maggie, you are helping so many people by being so open about your healthcare. I do not have an ostemy and am so surprised at how having one causes problems in other areas of the body. It seems like a lot to take on every day. You handle it well but I'm sure it must be overwhelming to others. Your videos will help them a lot.
I am interested in what you have to say, though I don't have any bowel problems, because I like to learn new things. One of my daughters had suffered from constipation for years and nothing we tried solved the problem. She also has an undiagnosed problem with her bladder . One day I listened to you talk about how helpful pelvic floor therapy had been to you, and I wondered if that might be helpful for my daughter. I had never heard of this before you mentioned it. My daughter is now seeing a pelvic floor therapist. She found out that her pelvic muscles are too tight, which has been causing some of her problems. My daughter now has a regime which seems to have solved her chronic constipation and is hoping that she will also be able to get assistance with her bladder problems. None of the doctors and specialists I took my daughter to ever mentioned pelvic floor therapy. I am very grateful to you for talking about it because it is helping my daughter. Thank you.
Your daughter is a very lucky girl!😇😇😇
Hello Maggie. You are providing an excellent public service! It is a pity that so many health professionals are unaware of the all the possible consequences of this operation. Shame on them and I hope they take the time to educate themselves on this important topic.
Maggie, you look fabulous in pink, your make up is spot on, and you don’t sound as nasally…hope the antibiotic nasal rinse is working…cheers from The Maritimes.
I have learned so much from this video! I had so many of the same symptoms (including the discharge and infertility, etc) that you do. I'm past my childbearing years, but it's still good to get some clarity and validation for what I went through.
I admire you so very much lady. I have had multiple surgeries and never once did anyone “talk about it “ it is wonderful how you just talk about your body in a language that we all know. God bless you and Zack
Excellent information! This knowledge is going to be so useful for so many women. Thanks for sharing.
Thanks for sharing! The medical community is always reluctant to investigate/research problems that only affect women. So little funding is allocated to women's issues!
Yes, I agree. You’re wonderful. People need to know what to expect.🎶💞
Thank you sweetie for touching on this subject with us. Your so helpful. Love you and ZAC. Xoxoxoxo
I hope you're feeling better ❤
I find that seriously negligent that you were not warned. I have been suffering with "lady/ period things" for years... finally know I have Adenomyosis and Endometriosis... the things I've been through, medically, surgically. . Blow my mind. And I feel the same thing every time I hear one of your videos (lol, not lol!!!) Totes not fair!!
You are fantastic! Thanks for sharing this with us
Very informative and fascinating. Thank you for addressing. ❤️
You are awesome! Total respect 😊
Thank you so much for the info !
By the way, your hair looks great !
Hi Maggie, you might like the Institute of Human Anatomy CZcams channel. They make super interesting yet easy to understand videos featuring different systems in the body and common issues. They do use real cadavers to demonstrate so I was picturing their female reproductive disection as you were explaining the structure...it shows all surrounding structures in place. Thought you might like their videos, especially given your nursing background.
Period products that I LOVE. saalt is the best. Their period underwear are so comfortable, and they have a reusable disc. I got a different brand before they came out with it and it works so much better than cups for me!
God Bless you and your husband, you are so strong.
Hey Maggie! I just watched your first period video because I had a proctectomy ~5 weeks ago (also years after my original ileostomy) and now, with my period back, I immediately noticed things are different in... annoying ways -_- I quickly realized that I have the "inconsistent flow" you mentioned, but to my greater annoyance, my menstrual cup no longer fits in there cause my vagina takes a 60 degree turn that it didn't before. I feel like I had periods all worked out before and now I have to change my whole approach. Unlike you, I did kind of expect some of these things, but it doesn't make them less annoying. I appreciate that someone is talking about this! Like you, I immediately started dreaming up the educational materials I wish existed that for some reason do not.
Wait I never thought about that. I didn’t get my period until after my ostomy surgery and whenever I use a tampon i feel it in my rectum. I thought I was putting it in weird but I guess it makes sense that’s they’re up against each other and the tampon puts pressure on the scar tissue and stitches.
Thanks! For all your information.
Great information and thank you for sharing!
Thank you so much for talking about this ! I’m having major issues with pelvic floor muscles getting so tight it feels like a brick is in my rectum ( I do have my rectum ) . I had lots of complications with my stoma surgery.
The PRESSURE is so severe it keeps me in bed a lot . I also found out my bladder got decompressed during one of my surgeries in March 2022 so it burns a lot .
I just had another CT scan and found out about my bladder issue. Thank you so much for discussing all of these changes that can happen.
I hope I can get past the pain I felt with pelvic floor PT - I think I need to find another therapist for that. Maybe she was too rough with my levator Ani muscle which is hypertonic and SO uncomfortable
You look so pretty I love that shirt
i'm studying gyn to become a PA so this is really interesting and makes total sense! the unfortunate thing is that a lot of sanitary products weren't tested with period blood-like substances... they were mostly tested with saline water, i believe. which, as any person that gets a period will tell you, is NOT the same!
this is something i'll have to think about if i ever meet anyone with no / minimal colon. i appreciate your advice to fellow folks! i'll start recommending the disc for folks :D
Thank you for talking about this. It's amazing how everything is so connected and intertwined. I follow your channel, although I don't have IBD, but just wanted to share that I also get uterine cramps when I'm gassy or constipated (like someone else mentioned in another comment) and I use a menstrual cup which "obstructs" my urethra, so I can't completely empty my bladder unless I take it out (and it definitely needs to come out before I poop!). It's all connected!
Same here, I have no health issues but my menstrual cup will push into my bladder which makes peeing difficult and pooping impossible! I just have to have patience when peeing and I take it out when pooping, so it's not so bad.
@@neeledijkstra3328 Yes, exactly! I do the same :) And I don't really need to wear it at night past cycle day 2, so it makes things less complicated.
there are reusable period discs as well. i really recommend the channel period nirvana for info on which one to pick
Thank you! I've just had my barbie butt surgery and couldn't quite figure how if discharge was coming from my vagina or my butt wound! Makes sense now after watching your video, its coming from both! First period here too after surgery and all makes sense now with the pooling! Thank you 🤗
To give you something funny to think about I am a 57-year-old female also had Crohn’s I had to have a small bowel transplant because of the Crohn’s I’ve lost my bottom also in 2015 had to have a total hysterectomy at age 28 when they did my surgery and closed my bottom one of my nurses said you are now a “Barbie butt” I get gold because I always try to find a positive and everything and to look at myself and have a laugh because I’m different my husband finds it amusing he just laughs I recently was in the hospital because I wasn’t doing very well for a while and I had a young man who was training as a nurse he was my STNA and he said you have no bottom I said no I’m a Barbie butt he looked at me and wanted to laugh but was holding back I said honey go ahead and laugh because it’s funny so now if I go for a check up or I have to go in for some thing and he’s around he always looks at me points and smiles and giggles I always give him a thumbs up just something funny I wanted to share I hope you find it funny also love you Maggie you’ve helped me a lot
You look beautiful Maggie!
You are open minded to tell your story about after surgery, Miss Maggie, it seems that you are maintaining your health, too.
Our bodies are wonderful, but it takes some time for our bodies to adjust. My mother had a hysterectomy in '75 and it took her a bit to bounce back and there was now "space" and yes, the muscles had to learn to adjust, especially for bowel movements in her case. We now know more about every ailment from the past and it keeps getting " easier" to handle although no sickness is ever easy, just saying quality of life is better from the strides we make in medicine .
Good morning all. I have come to the conclusion that GI surgeons do not like to admit that their surgeries can negatively impact people or can result in adverse consequences.
Likely not limited to GI...however I'd guess that it's more that even doctors don't know everything (especially if the doc is male and patient is female), and that book learning can't compensate for experience. Patients may not be able to explain WHY something is happening, but we know how we feel inside and no amount of "it shouldn't" can change that.
Also as Maggie said, there's probably not as much feedback as there should be, if patients just don't tell their doctors about post-op symptoms.
Hello there
Has anyone suggested tacking?
Uterus to stomach, bladder, uterus to stomach.
It used to be a option when pregnant and the baby was to large.
One draw back can be when the uterus must be removed. Robotic surgery in that case.
My mother had to be disassembled to remove during cancer scare about 45 years after tack job done.
Just having a bladder is issue too that can cause frequent infections with no real floor support.
I'm glad you broach this subject.
Little support can cause a never ending cycle with random accidents.
I don't think surgeons thought this part through or discussed with GYN.
Thanks for sharing
You are an amazing Woman! your understanding and simple explanation of not just what can be men's or woman's problems but their ability to function together.
Great info Thank You !
It's not demonetized yet! I'm getting ads for ostomy supplies.
The docs probably don't talk about it because it seems like with most things, the studies or whatever are done on men & if women are studied at all, they may be older & no longer of childbearing/menstruating ages?
Even the misdiagnoses you received are inexcusable for medical professionals, you could have spoken to a Fertility Awareness Educator and they would have told you that was cervical mucus collecting :) Im sorry they put you through all the unnecessary medication and stress!!
I still have my rectum but that being said, I was born without a rectum and I was unable to have children because of that. I have had trouble my whole life with having normal bowel movements and the pain and surgeries to fix prolapses. I now have a ostomy and thought oh now no more butt problems. Wrong I am having surgery again for the prolapse. This has been a life long problem that I don’t see ever being right. I know your problem is different than mind but not so much when it comes to not having a butt! I never knew anyone before that was born without a rectum or had theirs removed until I found you. Thanks so much for sharing all you do.
Hello Pauline how are you doing today
@@kenhartman9981 doing ok just ready for surgery this week.
@@paulineking1968 Oh I see I wish you good luck. Where are you from?
@@kenhartman9981 Thank you Ken. I went today for blood work and the getting ready for Wednesday’s surgery.
@@paulineking1968 Oh okay. So where are you from?
Beautiful strong intelligent women. ❤️
Videos like this make me want to go into the medical research field so someone can actually look into this stuff
“All i was suppose to do is not have a butthole” 😆😆love ya Maggie!
Hi Maggie! Thank you for talking about this. I hope you see my question, would it be the same for someone just having there rectum removed? Thanks again for this video. 💖
Maggie, awesome as always. The “disc” looks somewhat like a diaphragm. Just wondering, … as a diaphragm has a bit of a cup if that might be something worth trying.
I just started using discs, I have some pelvic floor issues due to frequent Kidney stones, and they’re much less painful since they aren’t dry cotton tampons. Highly recommend.
You may want to check out precious stars her earlier videos talk about reusable menstrual products
Always for helpful.
Hi Maggie! I’ve gotten uterine cramps when my Crohn’s was flaring. My Gastro dr told me that one part of the intestine runs behind the uterus or something like that 🤣. You look gorgeous 🥰
How can anyone say that rectum and vagina have nothing to do with each other? I’ve heard of women who had colon cancer and had a section of their colon removed and also had to have the uterus removed. The section of the colon where the cancer was happened to be right near the uterus.
I think I'd go on the period preventative chip that goes under the skin on the deltoid. The "4 times a year" period plan. But it's hormones, maybe testosterone. Not sure. My niece got it for endometriosis, sort of a type of painful period syndrome. Pelvic floor therapists are abundant in Florida. They're so great at giving us tricks. The diaphragm holds a fair amount of period fluids. Life saver for me.
(Nice lace sweater btw-- pink is nice on you.)
God bless u
Love your top ;)
Very helpful info really! ❤️ But also if you want more info on ibd and pregnancy stuff... Is a channel called Hanna Wilton she is a sx educator that has ibd very similar to yours... She has a 2 year old video that's called (pregnancy with ostomy) or something like that.. And for me was shocking info... I believe that every pensient has the right to know this before the sergury and every sergun should do their research on this to provide all the info and loops around it... And then the pensient to take the final call is their body and should be informed... At list is out their for people like you that talks about this stuff openly us you can!
❤️ ❤️ ❤️
My operation was 10 years ago it gets better thing do change with age
Kinda similar to have a complete hysterectomy everything moves and drops and goes where it wants to!! I wasn’t warned either!!!
Another you tube person, Sam Webster has great anatomy videos and might have diagrams. Very matter-of-fact class presentations to help students and others of us who just want to learn about the body.
"All I was s'posed to do was not have a butthole" made me giggle after a long day haha
omg thank you!! having a rectocele I know the vagina can collapse but I wondered what would happen because I'll likely need my rectum removed in the future.
This is super important information, thank you!! Would you make a video on how sex is after this surgery?
I actually already have a few on my channel! :)
I just had surgery in October to remove my colon and rectum. I didn’t get a bb, they left a small amount of my anus. I haven’t really been having issues with my periods, they’ve been a little different, but not like that. I’ve been having so many issues with my bladder. Since they removed my catheter after surgery I’ve had issues emptying my bladder all of the way at once. I was told this was normal and would resolve itself after a couple of weeks. Well it’s been 7 and a half months and I’m still having issues. Some days are better than others, but it’s a problem. I remember seeing your videos from right after your surgery and you were having these issues and went to a urologist to get help and to make sure nothing was wrong but also to get a prescription for pelvic floor therapy. He wasn’t going to preside it at first, because he said it’s usually used for people who have a hard time holding their pee. He wanted me to go on medication and I was like no way not happening without trying non medication options first. But I guess my whole point is thank you for these videos. They’ve helped me so much since the beginning of me learning I would need an ostomy. I wouldn’t even have known if pelvic floor therapy was an option if I hadn’t seen it.
Maggie what you are using “disc” is somewhat like a diaphragm. I have you tried a diaphragm as it has a bit of a cup. Just wondering if that might be helpful.
Some surgeons are into looking at the big picture of procedures , while most others, just "see" their part and do not actively describe what may go on, in the next "specialty". That is a real shame because they should share that information. I have scrubbed in many specialties and I can tell you, it is easy to slightly take a little more tissue, where you should not. The separation between the vagina and the rectum is not much as we know it, when women have vaginal deliveries. They often defecate if their bowels have not been empty prior to the delivery. In the surgical procedures, to knick the bowel while performing hysterectomies is not unusual. To make a story short, the systems appear separated, only in the anatomy books, but they are in fact, very close neighbors. When you look at the body, you see how it is all so close together, they can easily be affected......not intentionally. I expect in your case, fistulas can occur and you have wondered, what was going on ? In terms of pregnancy, even though your ovaries and uterus are likely fine, I think it may be tricky to have the pressure of a fetus, growing into your abdominal cavity. You could try a surrogate, if it was important to you, to have your own bio kid. I am not an MD, and I only speak from my experience in assisting these guys. In terms of Crohn's disease, is there any chance it can be , somewhat , genetic ? Food for thoughts. You are doing a great job explaining to other women in your condition, what they may not have heard from their medical teams. That is priceless. You seem to be doing just great, with your fantastic sense of humor and gracious acceptance of the reality you are dealing with. Good job ! Looking great too !
I was 41 and finally had my period gone my period was insane got uterus the lining burnt off still had period pain but no more bleeding. 🎉
What were your symptoms before and after your ostomy?
I have suffered from IBS symptoms, pain with bowels and extreme pain with almost everything I consume. I've been told from a doctor that I was forcing myself to loose weight when that is not the case I've been struggling for years to gain weight and it's hard when you have abdominal pain almost all day every day and it's worse when doctors cant find what is really going on.
Maggie, have you thought about stopping your period?
Hi Maggie. Why dont you try period undies. I use them and its the best call I ever made.
They should pay you twice as much!!
I have crohns disease and get my period twice a month. Just wondering if anyone else gets theirs as much as I do xx
It's my first period after surgery. I had my colostomy put in about 6 days ago >.
You are to cute and an inspiration
Don’t ask me why
Never heard of a period disk. Where do you get them?
She linked them in the info section. It looks like Amazon.
@@vickytime3855 thank you for the information. Very helpful.
@@sherryclarkthomas3130 absolutely, glad to help
Try Institute of Human Anatomy CZcams channel
Does the problems your having after having your colon-rectum.. removed.. etc effect you having sex.. making love.. with everything moved due to it loosing the rectum etc support.. this is something we would love to know as noone talks about it ty x6
Here's a video I did on this awhile ago! czcams.com/video/D0w1eQT6hts/video.html
I was wondering about this after having my colon removed....
🤣🤣😁
I didn't watch this video
So what you’re saying is that the doctor closed your butt?
I hope you got a new doctor after this. Yours sounds pretty incompetent