What Having Your Colon & Rectum Removed Is Really Like | Let's Talk IBD
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- Опубліковано 2 чер 2024
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If I could only send one video to a patient looking at proctocolectomy surgery, I'd send them this one!
More on Proctocolectomies: • Proctocolectomy Surgery
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#ostomy #ibd #chronicillness
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Yes, I realize I say "pseudo" wrong. No need to comment as many already have!
You go, girl!! Smart as a whip & just dripping with personality... :)))
A suede-o rectum?? Ha, ha -- too cute.
It's ok, I did it for years too. I read a lot and we didn't have social media then. It makes no sense that leather suede is pronounced swade, yet if it's suedo (something), then it should be soodo.
I have had a total proctocolectomy due to ulcerative colitis and also an esophagectomy and 1/3 of my stomach removed because of esophageal cancer. I am thankful that I still live a fairly normal life.
My son suffers from ulcerative colitis. Suffers, although he is careful. His dad had colon cancer and ostomy, and we are aware that unmanaged UC can lead to that. didn't know it could lead to proctocolectomy too. I hope your surgeries have taken care of all the problems and glad that you are still living and enjoying life. The things we learn! All this is news to me.
@@arlenemaxwellcopeland1644 l have been through colon cancer and had the cancerous tumour taken out and resected which meant cutting out the part of my colon where the tumour was attached and then some.
I wore a iliostomy bag for 8 months post surgery to give the colon time to heal up
After the bag was removed my intestines were sewn back together,
Well the first few days everything I ate literally came straight through me ⅞u
@@sophiajoyceferry7150 When I had my illeostoma the first time I drank orange juice, the bag exploded, because my intestants reacted so strong.. It was producing like crazy
Prayers streaming
You're one of a kind and irreplaceable. Appreciate your videos.
Agree
Maggie...you are one of those rare types that make this world a better place! I just adore you...and Zak too of course 😘❤️
I thought that what you said was beautiful . Judi Beth you are what makes the world a better place. Bless you 😊
Your willingness to be vulnerable and share your very, very personal journey with us and articulate it in such a relaxed, educational manner is admirable. I can't imagine the positive impact you have on other people facing the same issues, their friends, and their families. Hearing it from a human who has been through it is much more profound that Googling an article. Thank you. And Zach.
You said what I was trying to say but did it so much better than me!
I also have an iliostomy. One year ago my daughter donated her kidney to me and I received her kidney. She gave life back to me
Wow. I hope you're both doing well. Such love! :-)
How uplifting! God bless you both!❤️
Awww. What a sweet and kind daughter you have.
Your wedding gown was STUNNING!!!!
She was an incredibly sweet bride!
Your transparency is only exceeded by your courage. I am an admirer. Your husband is a lucky man.
I'm a pharmacy technician at an infusion pharmacy and I was on the phone doing a refill call for one of our Crohn's (or UC, I can't recall, sorry!) patients who was about to undergo an ostomy procedure and was so scared. I wanted so bad to just refer her to your channel, but worried it might be inappropriate at work, so I just relayed a lot of what I'd heard from you. The more times we talk, hopefully we'll get more friendly and I can point her your way!
My surgeon tried to talk me into reversing my ileostomy .. I absolutely do not want to reverse .. I tried reversal .. strictures and scar tissue made reversal very very painful and just did not go well.. I had 4 surgeries.. I am perfectly happy and have a much better life living with my ileostomy👍👍 I can do things I couldn’t do with my colon connected.. I have had my ileostomy for one year now and I’m happy 😃
You are looking great Maggie !!
My best friends mum had this surgery a year ago cos of cancer and I was able to tell her not to worry about the surgery as you coped just fine xxx thank-you xxx
I had my large intestine removed due to colitis but I was so lucky that an internal ileo pouch could be made and I only had an ileostomy bag for a year. The op was life changing. No more pain, anaemia and sickness. I really appreciate and respect people who speak out about IBD. ❤️
I’ve had a pouch since 1995. It’s fantastic to hear such candor, especially from a young woman. I was 20 when I had my surgery. Good luck to you, Sarah!
@@alif7903 I
@@alif7903 is
How have your lives been affected, on a day-to-day basis: traveling, swimming, working out, sex, going out, diet, managing the pouch, etc.?
Thnx!
It's really generous of you to put your experiences out here on the internet for everyone to learn from. I wish you so much happiness and health!
My friend was hospitalized in a coma and ended up having this surgery. I never really felt comfortable asking personal questions about it. TY for the video.
I am lucky to not have issues yet I enjoy your videos. I am not even sure how I stumbled across your channel but you seem like such a wonderful person who is so upbeat and willing to share your story to help others which I think is amazing given the sensitive topic! Plus, it is just sweet to watch you and you adorable husband interact!
I had to have an ostomy 17 months ago at 91 and you helped me so very much. You are so positive and constructive and beautiful too. You showed an ostomy aid and my granddaughter who lives in New Mexico sent me one as they are unobtainable in South Africa, what a blessing that has been. I think you and Zak are so inspiring and don’t ever doubt the help you have been to so many. God bless you and may you have many many very happy years together. Zak is a really fine character and as for you your bravery and courage is inspirational .
Wow amazing well done you😊😊😊
Pat Martens. GOD BLESS YOU! May you have better health, now🙏🏼
I agree with Carson. As a 71 yr old man jut beginning to see the evidence of my mortality more each day, you are an inspiration to me in your courage and positivity. I wish you all the best. You have no idea how your sharings help so many in so many varied ways no matter what we are dealing with . Thank you so much.
Maggie my cousin has three teenage boys. She had an iliostomy way before any of her three pregnancies. Everything turned out great. My daughter is named Maggie
I live without my colon, too. But you’re far more courageous than I’ll ever be! I absolutely love your positivity! And may I add, with every challenge met and defeated, even brighter blessings will come your way! You are a true source of inspiration!!!
Just spent 5 more days in Hospital. My BP crashed and Husband had to pick me up off the floor. Dehydration has now affected my heart and now dealing with AFib. Our hope is that when we find the right medication for the UC it will all correct itself.
I think you are a amazing, brave, stunning young women, and anyone that had you for a nurse would be very lucky!
Maggie, I am having an Abdominal Perineal Resection, Parastomal hernia repair, and relocation of my stoma April 30th at Penn Medicine. I too have Crohn's. It was your videos a few years ago that got me through my bowel resection and colostomy. I have a huge undertaking coming up, and pain management/ recovery concerns me. Positioning is also a concern. I will have a large horizontal incision on my abdomen, and an incision from the proctocolectomy. Maybe I will just hang upside down like a bat, lol! However, watching you always helps me. Looking forward to your video today!
Julie, as an ( old timer Ostomate), I wish you the very best of good health after your surgery! GOD BLESS
@@hummingbird275 , Thank you so much! God Bless.
Julie Katz 🙏🏼🙏🏼♥️
You have been through a lot of pain Maggie, the fact that you can comfortably look back at it with hope for the future is amazing. Good luck for a future pregnancy, lots of love all the way from Australia. 🐨 🦘
Thank you for telling your story, I am losing my lower bowel on 6/2. I'm scared but I am so sick and need to get this pain under control:((
Your channel is awesome. I love how you’re matter-of-fact, but relatable and non-robotic. My roommate is a Crohnie. She’s at four bowel resections and counting.
my butt hurts watching you talk about the surgery 😭 you’re awesome for going through that
Your experience leading up to your proctocolectomy sounds so much like mine. I’ve been following you for a long time both here and on instagram, but actually hearing you talk in detail about passing mucous, leakage, strictures, and all of that was such a crazy relatable experience! This was definitely the scariest and most difficult surgery, I’m only 3 weeks post-op so I’m still very sore and slow moving but it does seem to get better every day.
Wishing you the best friend.
How are you doing? I will be having the same surgery. How is the recovery going
i might be getting my colon removed and i’m terrified but your videos always help❤️
❤️Praying for you.
It is a life changing experience. I had UC and this procedure gave my life back. Been 3 years now and haven't regretted it ,,for a moment
Same and scared 😊😊
I have UC and I’m terrified of getting the surgery 😢
Naila i’m getting the surgery and i’m very scared but everything holds a purpose and we have to stay strong !!
You are amazing. I wish my mom, who had an ileostomy the last 7 years of her life, had an opportunity to watch your videos before she passed.
THANKS SO MUCH MAGGIE! You may have saved my daughter's life. She's lived with symptoms from IBS since she was in her early teens. She's now 50 and has bouts of nausea lasting from days to weeks. This year kicked off with constant diarhea. She's had enough. She survived several suicide attempts. No Dr can tell us what it is, but she has SEVERE ANXIETY all the time.
Thanks once again. You MUST write a book. You have SO MUCH to tell. 🥰🥰🥰😇😇😇🌸
Mags...I continue to be super impressed with your attitude and strength. I did see the video where you had the stitches removed from your butt. Seeing you cry broke my heart and was comforted by the fact that Zac was there holding your hand. I’m sure the pups were very comforting to you when you got home. God bless.
My only 'connection' with Crohn's Disease was years ago I had a friend with IBS. Unfortunately we both got married, and moved and we lost track of each other. I like your videos because I am very curious about a lot of things, and I very much enjoy that your videos are adult, truly informed, honest, very human and often humorous. Thank you.
I.B.S and Crohn's are two different things I have I.B.S and it is in no way related to Crohns.
You are just a breath of fresh air to countless patients pre- as well as post-op. I’m a retired RN and using our own life experiences can make for great teaching moments. My GI tract is together, but I tuned in to watch your forthright advice and experience. Thank you for that and God bless!
I dont know if you will ever see this but I had to say something. I have dealt with health problems my whole life, had Guillain-Barre at 4 yrs old, and my step father had colon cancer resulting in him losing his colon and rectum and he has a colostomy bag as well now. So my experience with health issues is well versed and I CANNOT imagine the strength and courage it takes for you to make these videos. It blows my mind. I'm really in awe to be honest. Sorry you had to go through all of that but you are an inspiration to anyone dealing with medical problems and surgeries in my book.
I have had bowel cancer and as such i now wear a bag and the surgery cannot be reversed, all i can say with first hand knowledge is, you are one incredible lady!!!!!
Have bad IBS, had to have a complete hemorrhoidectomy last August, and recovery was brutally painful! Got fissures, which are still not healed. Imagine your surgery was also not remotely fun. As bad as my gut issues are, seeing your story makes me realize things could be MUCH worse! Your videos have helped me a,lot in my recovery journey. Thanks.
Wow. I had a cleft lift due to a damn big cyst on my lower low low tail bone. My story is not your story. I still sleep on my side and on long trips i sit on a 🍩! Thanks you for sharing🤗
I had a proctocolectomy when I was 27 back in 1988. I am now 60 years old my worst complaint is painful sex and I blame it on them sewing me shut too close to my vagina. I am waiting to see a plastic surgeon to see if they will fix this. Otherwise, this surgery saved my life and couldn't be happier to have "Oscar" on my side.
Years ago I worked with a young beautiful person that suffered with horrible digestive issues . She went to several doctors that decided because of her beauty, they decided she was annorexic . Of course it was Chrones disease . I hope people with this disease are treated with more respect than years ago . Thank you for your informative video . Hope you stay well .
I remember watching when you had your stitches taken out. I felt so bad for you.
I remember it too & I bawled for her because I have experienced so many pains my heart fell to the floor watching her! She is an amazing woman & extremely brave in my eyes!
I had my ileostomy due to FAP then get it revised to a j pouch now I have mine back again 8-11-21 and I love mine over the j pouch so much better 4/30/19 cancer free 7/30/19 j pouch full 8/11/21 removal of j pouch to ileostomy bag for good! I love it
I admire your ability to be so open about your experience, and do it with grace and even a bit of humor. Thank you, from someone who also has Crohns.
This video was very honest and informative. There are probably many other situations that could be explained in important detail on social media by other as equally intelligent and effective people if certain social media platforms were willing to allow it. It is an old saying but knowledge is power and it was so kind of Maggie to share that knowledge.
you are so so brave. I don't have chronic illness but your attitude and way of dealing with your life is truly inspiring. Keep at it and keep the haters at bay!
Maggie, you always astound me. The willingness, the courage, the dignity and the humanity you prove in every single video are really inspiring to me. Thank you for this infos! You deserve nothing but the best!
So glad you were able to find a solution for your period! Discs scare me, but I love my cup. If you're thinking about trying the cup again, maybe that's something you can work on with your pelvic floor therapist
Just read some of your comments.
I have not tagged 'thumbs up' so many times! Ever! Most of these are better written than anything I can write. You are an inspiration. And a gifted speaker/teacher. Thank you from everyone! Please carry on!
Thank you Maggie! Your videos are so informative 🙂
Love your videos! Your honesty is so refreshing!!
I admire your ability to be so open to tell your story. I’ve had the same operation. Full Panproctocolectomy but have severe small bowel syndrome with three previous operations on the small bowel
Like, even though your bottom got hosed and you had to have a rectumectomy, you're still awesome. You go, girl!
You’re a trooper! Lots of empathy for all you’ve been through.
Thanks for taking the time to provide details that help others.
Thank you for being so sharing and open.
Definitely enjoy listening to you! Thanx for sharing 😻
You are a special soul. Wow. I hope life finds you fortune and peace.
Wow... I admire you Maggie ❤ I'm 65 and had exactly the same as you two & a half years ago....
You are awesome. I have learned a lot from you and this community. :)
Incredible strong person
Maggie this is an awesome video that I am going to send to friends, family etc the next time they have questions. Love your videos, so much great information that is pertinent to me and my journey. Thank you!!
I find this channel fascinating. Your delivery of information is spot on!
You are a strong person! Gobless u
You make a challenging topic so easy to talk about. Thank you for your spunk!
Great video ad always❤
Thank you so much for your videos Maggie. I also have Crohn's disease, which in my case affects the last part of my small intestine, and I think it's awesome that you are shedding light on what it is like to live with this disease. I feel like not many people know about it and the struggles related to it. It must have been absolutely horrible to live with constant discharge in that area - that is actually one of my biggest fears and worries related to the illness, urgently needing the bathroom at any given time... So thank you so much for educating people on the matter and being so brave to talk about topics which are often tabboo so openly. My doctor told me that I will probably need to have part of my small intestine removed in the near future and I hope I can handle this situation when it comes with as much bravery as you have!
Hi Maggie❤ so glad you finally healed
Your so young. So sorry you had to go thru all that. Stay strong!
Thank you so much for sharing. This has been fascinating
I had ulcers colitis for 20 years till Dec 3rd 2020 on Oct 2nd 2020 I was diagnosed with colon cancer which led to a total colectomy on Dec 3rd i.
I started watching this channel and several others since my cancer diagnoses. She is one of the best on the subject she is a gift to ostomate!
Oh I’m so so glad pelvic floor therapy has helped you so much :)
I learned a lot. Thank you for sharing. And you are very pretty. Good luck with all you future plans.
Don’t plan on sitting down for a month after surgery, or driving for extended periods (ouch). And a stand up desk is recommended
Thank u!! I was just diagnosed with crohn's disease a year ago at the age of 43.. and although I know everything is different for each individual person it's nice to hear the what ifs.. trying to brace myself for whatever may come
I stumbled across your videos somehow months ago and I just think you are so adorable and I love love love your personality.
Awesome video. Thank you.
Good advice giving yourself "success" markers, goals. That is good in all things, not just after surgery.
I have Crohn’s and your videos help me out!!!! Thank you so much for all that you are doing!!!
Great video. Thanks for sharing. 😊😊
You are brave strong and resilient. Your attitude is wonderful. Best wishes.
@LetsTalkIBD you are super courageous and an AwEsOmE person... and a fellow RN😉. God bless you and yours from South Africa
You are SO amazing!!!
Maggie is my Mom's name and is a nurse too......thank you for sharing and being such an aweome human being!
You may not remember my posts to you on FB, but you've been a very long-time hero of mine. I've always recommended your blogs to anyone I ran into with questions, and as an inspiration, and I've always loved your product reviews over the years. I had my ileostomy/procto-colectomy back in 2013, and given the horrible year leading up to it with bleeding internally (and externally, when I began bleeding profusely while installing a computer system at a bank, which was really embarrassing,) being incredibly low on iron and needing IV iron infusions about every 5 or 6 weeks, and needing 3 blood transfusions in the year leading up to the surgery, it really has improved my life.
Well done Maggie. 👏👏👏😘
You are so beautiful!! You are awesome so happy I found you!! You are a beautiful light in this dark world right now! 😘
You are so amazing and strong and an inspiration 💟💟💟
Great video and very educational!👍🏻👏🏻
Wow. You are amazingly brave. This is my first time ever hearing of this very well explained and detailed.
I would personally love a part 2 type video with this stuff - if you talk about more of even in more detail about what you discussed here. so helpful as i have basically the same story as you
Wow, you are an inspiration. God bless you.
I like your straight talking.
Thanks for talking about leaking! I was the same for years. You helped me so much with my osteomy and information I am much more well now. It was the best decision I made. I have cerebral palsy too and you have helped me to think around some of the problems I have had with my bag and sort them. You are a great advocate.
Miss Baldwin, no matter how tough the circumstances are, you can get through them smoothly and stay strong. (I subscribed to you 2 years ago, but have not watched your videos for a long time)
My son has chrons , and has the same opp as you, its a lot to have and go through, all the best and I hope all goes well for the future.
Thanks Maggie! I was told to “not wait too long” (age) if I was going to do this (already have Ileostomy x 3 yrs) and appreciate all of your journey! My channel isn’t quite geared for my IBD journey right now but I’ll seriously consider possibly a new one to document; although I’m not going to be getting pregnant...(endo & loss of ovaries then uterus bc of it dashed that for me during those years) but I believe we all need each other and I really appreciate your advocacy efforts!
I wish you were around 19 years ago, when I had the same surgery. You’re amazing. I too, had major skin issues I have Crohn’s. I like to refer my pouch as my purse, then my wafer. Thank you for being so open.
Your a brave young lady!
I have a friend having this surgery soon and I’m here to learn more 💚
I enjoyed your video and how well you covered the subject. My second surgery was November 3, 2020. I had the option of j pouch or keeping my ileostomy but my rectum had to be removed because of the severe damage caused from Ulcerative Colitis over the previous 40 years since diagnosis. Fortunately I had no complications from the surgery. My suture removal was not a problem for me. I do still get the sensation from the muscles around the anus of needing to have a bowel movement. My body is still adjusting from the changes and I feel like it has turned on other autoimmune diseases now that UC is supposedly not an issue any longer. I am very happy with my decision to keep my ileostomy but I still find changing the bag to be a real hassle and frustrating time consuming headache at times. Keep these great videos coming! You’re awesome!!
I'm impressed! You're willingness to share your story is so commendable! I can only imagine what kind of thoughtless comments you get. Sorry to hear about your ig account. I don't get any of the social media platforms. They allow the crap to remain and remove educational information. 🙄 I don't have crohn's disease but I liked learning about the things that could be involved with having it. Thank you Maggie! Best wishes today and always. 🥰