Four Years Later - No Regrets with Removing My Colon | Let's Talk IBD
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- Опубликовано: 16 дек 2023
- I can't believe it has been four whole years since I left the hospital from my proctocolectomy surgery (rectum and colon removal). It gave me such relief from my Crohn's disease but it was quite the decision to make - it meant my ileostomy would be permanent.
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*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ibd #crohnsdisease #ostomy
I do not consider any details, TMI level. This is not a rare operation. So to quote a commercial, (having access to this information for all of us with/going to have/currently no IBD issues), it is priceless. Thank you Maggie.
Agreed. Context is everything. If I were standing in the check out queue and someone tapped me on the shoulder and started talking about this, I'd be a bit taken aback. I mean, I'd probably still be interested but I'd think it's kind of odd. However , when someone clicks on a video about colon removal, they can't be all that surprised to hear details about colon removal and if they are, clicking away from the video just takes a moment.
It took us 8 years to conceive. Don't give up hope. Our son is going to be 16 in January.
Merry Christmas Maggie and Zak! I had my Bone Marrow Transplant a year ago in November of 2022. I also had an embolism a year ago yesterday. Health milestones are something to be celebrated.
You are the most honest person I’ve even known….well you know what I mean. Lol. If everyone were this forthright with information, man wouldnt that be something! (Dr’s I’m really speaking to you…😬) lol.
I had my own rectum removed in September of last year. It healed great initially, until it opened in two small areas five months after surgery. We’re still struggling to get it to completely close. 😢
Zak and you make a cute couple. May your bond last forever 💖
I also get phantom rectal pain around my period. It feels like I need to bare down. But like you said, it's less and less each year that goes by.
I am shocked at the weird similarities I have heard you talk about. I am having a proctocolectomy in March. Over the last month I have grown this weird skin tag similar to what you described. I spend hours trying to pass mucous and have had bleeding several times with it. I have so much pain when sitting. I am so scared to have the surgery but know I will feel healthier once it is done and I am healed. Thank you for sharing!
I had ulcerative colitis when I was 15 and had surgery at 18. I’ve had an Illeostomy with no rectum for 47 years. That was in 1976. Got married in 1979. I’ve had 4 c sections multiple other surgeries along the way. But never any issues w my Illeostomy.
But in just the last 3 years I’ve developed a fistula in my non-rectum area🤦🏻♀️. Doctors say it will make it worse if they try and remove/close it up again. It drains a bloody sometimes mucus substance which is very irritating!
If any of your followers have had this issue I’d appreciate some insight on how to proceed. Thanks for being so vulnerable and sharing your story.
Your story is alit like mine. I had ulcerative colitis at 14 and an ileostomy at 16. Unfortunately unable to have any children but have 2 amazing adopted children. Married 42 years. Luckily no fistulas.
I have a question I’ve had a drain in my bum cheek for over a year now because of two fistulas had colonoscopy done August 17 of this year. My drain is still in is this normal ? Can’t they fix the fistula? This is very frustrating all these doctors and nobody tells me anything literally had to watch RUclips videos to find out what to do when changing my colostomy bag only had one lesson in the hospital and that was when I was all doped up. I’m supposed to have an ostomy nurse, but having issues with insurance so I’m just doing things on my own every since
You sound like an extremely intelligent, courageous woman who is sharing details of her story that have enormous potential in helping other people go through this. very difficult issue and come out of it with hope and love in their life and the mission to make such a journey be at least a wee bit "easier' and possible to go through. That is what I hear in this video.
These videos are so important for people who consider this specially as seems there not that much information like this.
Happy 4 years!! That's awesome! 🎉❤️
Love your humor!!!
Happy 4 years!!!!!
You are such an inspiration 🙏🏻
Thanks for your candor.
Good of you to share this sensitive information.Thk you.
Happy 4th yr since your surgery. 😅. I know you are so happy to have that behind you( as I am from mime years ago) and now you are healthier and working on having a family. That's so wonderful. 😊❤.
Wow. It doesn't seem like it's been 4 years already. I'm glad you are doing better.
Merry Christmas to you both. I wish nothing but happiness.
So glad that you are doing well. You are such an inspiration to all of us and Zak is such a wonderful partner 💕
You look well and beautiful Maggie. Merry Christmas to you both
Hello there Maggie. You have come a long way since your surgery and I am so pleased that everything turned out well.
I remember your struggles with pooling and your doctors had no idea why it was happening, fortunately another IBD patient was able to enlighten you. I agree that medics should be aware of the consequences of this surgery on their younger female patients. Merry Christmas and sending best wishes from the UK.
lovely to see you,you look lovely 🥰🌲🌲💕
It's very interesting discussion you present, I have hemorrhoids (for over 10 years now) and tried to have them surgically removed, but was told by two proctologists that it would far too painful to remove them at this point, so I've just learned to live with them. I have to always carry Preparation H wipes with me to the bathroom just in case I need them. It's worse when I have diarrhea, so I have to be conscious of my diet. But my issues are minor in comparison to having IBD to the extent of needing to live with a stoma and having your rectum surgically removed. I appreciate your candor and sharing your experiences. I don't doubt you'll have the family you've been praying for soon. Just keep believing! God bless!
I had hemorrhoid removal surgery 10 years before my proctocolectomy. I can say with certainty that the hemorrhoid removal was worse😬. Probably because I had great pain management for the proctocolectomy and not with the other. After the numbness wore off 😮😮😮😮😮😮😮.
Wow! Thanks for sharing. Now I'm really glad I listened to the proctologists! @@UrbanOstomy-ir2iv
Merry Christmas, Zak and Maggie. Love you guys, and I have enjoyed your videos. I had UC and had all removed. Best decision I ever made.
Hi! I am brand new here and start binge watching your videos lol. I have colorectal cancer and just had my sigmoid and rectum removed and there's not a lot of info about what that is like out there and you are a huge help. I have also decided to keep my ileostomy permanent :)
Thank you so much for your story... I'm dealing with post-op complications and to see you doing so much better 4 years later is really a relief. Thank you, thank you, thank you. (I had an ileorectal anastomosis, the rectum is giving me issues.)
It was purely thanks to your videos on the pooling issue that I didn’t worry when the same happened to me. I was then able to explain to my gp exactly what was going on because they had no clue
Maggie I live listening to you like my Grandpa use to say you can learn something new every day have a great day I am praying for you to have a Baby!
Omg the car challenge! I had to be in the car for 6 hours only a few weeks after pilonidal cyst excision. Luckily my brother was able to drive the majority of that trip, and whenever we got stuck in traffic I went into the back seat to lay on my stomach on a body pillow.
Yes! More research pleaseeee. And for pregnancy after a proctocolectomy. Currently dealing with an incarcerated uterus while pregnant because my uterus is in the wrong spot due to no colon support. It’s awful! My doctors keep mentioning there’s not a lot of literature on it.
The last time I was in hospital I met someone who was there because she was getting botox injected for the spasms.
Also, I'm glad for what you call too much information, it's helpful when you're in the same situation.
Hi there hope you are both OK i love watching your vlogs ❤❤❤❤
Regarding the comment of how there should be studies on other side effects of having the rectum removed, I think it's more of people need to report it, and report it to the correct people and often. Because there are so many conditions and side effects to study that unless someone is communicating new issues, ignore issues, etc the medical establishment won't look in that direction.
My surgery will be 3 years in January. I had it all done in one swoop. I ended up hospitalized for 2 months after an infection. Still no regrets. I wish that I had known about the funnel. I shared my story on my channel. Although I’m totally healed, to this day I stuff gauze in my cheeks because it feels weird otherwise. I describe it as feeling as if a hole should be there but isn’t 🙄. The gauze makes it feel normal. Everything shifted as well and took some getting used to.
Adding, I used to get phantom butt as I call it too. I can clinch 100%. I mentioned that I could to my surgeon because I thought that something was wrong and she mentioned that the muscles still work. The clinch comes in handy for my gauze 😛.
I have had the same operation but for cancer and i think it is the muscles in the cheeks that help you clench as there is no muscle left after this operation as far as I know. The sphincter will have been removed along with wide margins along the length of the rectum.
Well, you definitely know where your partner stands with the through sickness and health when you have surgery like this or get seriously injured or a serious illness
Wow, three days seems fast, a bit over four years ago I had part of my stomach removed, just about small enough that it was keyhole, though the hole they pulled it out of was a bit bigger and rather gnarly. Anyway, I wasn’t being fully opened up, I was told four days, but it ended up being 6 due to breathing complications (I gather they are more common in keyhole surgery) and was very close to being 7, the physiotherapist was really close to not clearing me. Funny thing is, once I got home I was off painkillers so quick and eating normally when in hospital I’d basically been on a liquid diet. Also sympathise with the discharge process and not getting pain medication at the right time.
I have kids and I don’t think I ever managed to be a year surgery free at the time of conception. One of my conceptions was after serious damage to my rectum, it was an unplanned pregnancy, those swimmers made it through a condom. Also have issues with pooling.
This wasn’t weight loss surgery, I had a rare abnormality of my stomach, in the end the surgery became urgent, though I don’t really fully understand why, but then nor did my surgeon, as it was his first time seeing it. We’d discussed elective surgery, but with minimal research out there, it was hard to be confident it would do anything for me, my digestive woes were relatively mild, in the sense that I had no difficulty with nourishment, but I did have issues eating socially and with vomiting, in the end it’s made quite a dramatic difference, I don’t think I realised how unwell and in how much pain I was in until I wasn’t.
Wow,, three days seems fast, a bit over four years ago I had part of my stomach removed, just about small enough that it was keyhole, though the hole they pulled it out of was a bit bigger and rather gnarly. Anyway, I wasn’t being fully opened up, I was told four days, but it ended up being 6 due to breathing complications (I gather they are more common in keyhole surgery) and was very close to being 7, the physiotherapist was really close to not clearing me. Funny thing is, once I got home I was off painkillers so quick and eating normally when in hospital I’d basically been on a liquid diet. Also sympathise with the discharge process and not getting pain medication at the right time.
I have kids and I don’t think I ever managed to be a year surgery free at the time of conception. One of my conceptions was after serious damage to my rectum, it was an unplanned pregnancy, those swimmers made it through a condom. Also have issues with pooling.
Just over a year for me with the complication of a hernia in the wound where my anus was and having the wound opened for a second time 8 months later… that mri showed cervix and bladder in the defect! I’m tall, I think that’s why everything has drifted so far back. I learnt almost nothing from my surgical team, and everything from here, thank you.
I’m amazed how many different ways of closing the wound there are. Mine was supernatural up in 4 layers and the outside skin closed, no dressings. It felt like they’d sewn a cord in between the two edges at first.
I had my surgery for cancer and my bladder has been affected with loss of bladder feeling. When it’s very full it moves everything else so let’s me know to go. Does anyone else get that?
Maggie, I had a proctocolectomy with ileostomy a year and two months ago. It was done laparoscopically. I didn't have any issues with healing in the rectal area like you talked about. Is that the difference? It did hurt with the stitches in and painful when the surgeon removed them. If you can comment I would Greatly appreciate it. Thank you so much. I have learned so much from you. God❤ bless you
My surgery was also laproscopic! I'm not sure why mine split, but it may have been my fault! About 2 months after I took a flight out to California for work and that's when it split open. I guess I did too much activity too quickly! I'm so glad yours is healing well!
@@LetsTalkIBDThank you so much for the quick reply. I am glad you're doing well 4 years out. It is encouraging to me and makes me grateful to learn so much from you. I am 72. Had colitis since I was a teenager which developed into ulcerative colitis the last 20 years. When I see all you have been through in your young years I am amazed at your courage, strength, and the inspiration you give. Thank you for all you have shared. You are a tremendous help to all of us who need more education in dealing with an ostomy. ❤️❤️❤️
I have an ileostomy now for 2and half year but have still colon pain and mucus Still irritating ,I have eds and am 55 want it removed but prone to infection and poor healing so worried about the operation
I do not have IBD but I too had a major surgery on a Friday the (13th week to the day after I had the same surgery on the other shoulder) to scientifically test the Friday the 13th myth. Friday the 13th surgery sisters and myth busters! 😊🎉
They could not send you home with a streatcher cab? So you could lay down on the way home?
Do you still have Crohn’s symptoms now? Do you still have to take medicine for it?
Yes! Nothing like when I had a colon though! I do take a medicine called Humira to keep my small intestine in check. Where my stoma is I had some small inflammation pop up but the Humira took care of that
You are so lucky you only have pooling issues. I not only have that but also a fistula! This can only be corrected by another surgery.
I’m so confused I thought I saw a video where you said you had to tell Zac about your ostomy bag..
I thought you already had that when you guys met. Maybe I just heard it wrong !
I got my ostomy in 2009, but still had my colon/rectum (just detached, not functioning) until 2019!
Thank you Maggie…got it! You’re so awesome! 🥰
🌼☀️
My. Surgery. Three. Month. Permanent. Ostmey. Gas. Problem
I did not quite understand until you said "Barbie Butt". What is a fistula?
Google it
A fistula is essentially a tunneling the body makes! In my case, because I had a rectal stricture making it difficult for me to go to the bathroom, my body tried to make an alternative route out! This meant a tunnel was formed from my rectum to my tailbone and outward. It meant I had a hole leaking stool - very awful!
@@LetsTalkIBD Thank you! I try to follow your videos, but sometimes I need a medical dictionary. 🙂
No problem!! I know there is a lot of technical terms!
In case someone else is going through this, a donut cushion might help.
Donut cushions are actually not recommended as they pull the cheeks apart which can potentially pull the incision apart
You don't have a colon?
I pray for you and Zak every night! You are a blessing to so many who listen!
This Christmas, I hope you know the Savior who was born in Bethlehem, in a personal way. Invite Him into your hearts!❤️❤️
You know what, Maggie? I wonder if your weight issue contributes to your infertility? You menstruate regularly but maybe you aren't conceiving because you have been underweight? Nah, that's not it. I don't think so, but once way or another you are moving forward and you look pretty great now. Best I've seen since I've been following you. Hope you enjoy the holiday season.
My GI is actually quite happy with my weight- I've gained a bit over the last year!
Female funnels are over-rated. I could never get it to work for me.
Sorta cut yourself off there at the intro lol.
Check your vajj Ph balance. I wasn't getting pregnant for years. I did a douch with plain yogurt and water. Got pregnant right away