Rectum Removal & The Most Common Questions About This Surgery | Let's Talk IBD

[@LetsTalkIBD]

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[@shenazpatel8195]

First yeah!!!

[@darcyjeanske821]

I'm so glad that I watched this today! Fellow nurse here! I never knew that you were a nurse also! All of your terminology, your descriptive words, and being so careful to not shy away from detail, tells me all I need to know about what an excellent nurse you are. Praying for many blessings along your journey in this pregnancy. ❤😊

[@lorijohnson1478]

I had a tumor. Shrunk with radiation which really helped the pain. But my bowel and vagina were damaged by the cancer. The veteran's hospital here in Minnesota jumped right on it too. I was overwhelmed with everything for the first couple of weeks but got right into radiation. Then chemotherapy. They decided to send me to U of M hospital to one of the best surgeons for this type of cancer. I was home in two days. It's been 3 weeks and I'm a pro with this colostomy bag! Pain lasted about 5 days, but pain meds controlled it pretty good. Now I have no pain, I feel great. I still have another surgery for my fistula but I'm very confident in the surgeon at U of M. I'm going to be able to go for walks with my dog and visit friends and go out to eat now. Oh and I'll be 68 in 4 weeks. I'm still here and whatever life has in store for me, I'm going to enjoy every minute. This was a life giving surgery for me. Thanks for letting people know how much more you can get out of life. This is not the best outcome, but it's better than the alternative

[@carolweakland8546]

I’m glad I’m seeing this today- my daughter is getting her proctectomy on Monday (colectomy was 18 months ago) due to Crohns. All this information is extremely appreciated! The anxiety is running pretty high right now! Thank you so much for sharing your journey!!!

[@LetsTalkIBD]

I hope everything goes smoothly and she is comfortable!! 🩷

[@carolweakland8546]

@@LetsTalkIBD Thank you so much for your well wishes! She’s extremely blessed to have such a great medical team! Still… we can’t wait till it’s done now 😁

[@4cats2008]

Wishing your daughter all the best! (my cousin also had colectomy first, then proctectomy later..due to UC. She's 68 & nothing stops her! Social butterfly!)

[@AdAstra870]

You are a survivor! You're brave to go through so many surgeries. Thanks for sharing your experience. Have been contemplating the BB surgery but given how complicated this sounds I feel like I'd like to find a super competent surgeon. My Ileostomy surgery went ok but I felt like there were things my current surgeon didn't know/didn't tell me that he should have known. Thanks to this channel and various ostomy support groups I got the info I needed.

[@mcrchickenluvr]

I used to be a youth leader at our old church. We had a kid in the high school group that had to have this surgery. I can’t go into detail as to why he needed it because there’s still some legal things involved. He had the surgery almost 2 years ago. I often sent him your videos so he’d know at least some of what to expect post op. Even though the reason for his need of the surgery was totally different, you really helped him feel a lot better about it.

[@mosaicgirl4002]

🎉 Great job with this video! You are an excellent presenter… loads of honest detail, sprinkled with insight & humour ( so important!) and such a brave & lovely young woman…so exciting about your baby! Yay to you 😊 with love & admiration from Australia 🇦🇺

[@carilariviere505]

Canada, same here!

[@m.suwolitch12]

Im 8 weeks out from surgery. But incision is almost completely healed. I see my surgeon Monday for a follow up. Sitting certain ways still hurt. Thankfully I found your channel before my surgery and prepared myself for the pain and it helped me so much! I feel so much better than before surgery for sure.

[@que-stead-que1717]

My surgery was performed on 01-06-21 all in one swoop due to UC and Crohns. I found that I can no longer ride a bike afterwards. Everything healed up well within a year although I was able to fish, garden, and do normal activities within 3-4 months. To this day, I still stuff my rectal area with a small piece of gauze because otherwise it feels hollow whenever bare. I unstuff at night. When asked how it feels, I tell others that it feels as if a butthole should be there but isn’t 😛 Last Summer, my primary Physician had a Resident working with him in his office on the day of my appointment. She was planning on becoming a colorectal surgeon. She asked if she could speak to me about the surgery from a patient perspective and I agreed. We went to another room and talked at length. My hope is that our discussion would help. I reiterated to her that everyone is different.

[@michellem8284]

Kayla Glumac just had this surgery and is sharing her journey on KZbin

[@4cats2008]

Tks for sharing. You are one strong gal. I appreciate this as now I know what my (senior female) cousin went thru! She had UC since a teen and had her surgery a little b4 u had yours. She ended up having her rectum removed when her UC kept recurring despite entire colon having been removed! UC can be a nightmare even if you only have a tiny piece of colon. She opted for rectum removal & the opening was sewn shut. She's doing great & nothing stops her. I call her the "energizer bunny"! God Bless & best wishes for a smooth next 20 wks and then delivery! Really enjoy following your pregnancy too!

[@rm2828]

First I want to CONGRATULATE you & Zach on being Pregnant & what AMAZING parents you will be!! Maggie you are such a JOY to listen to…LOVE you warmth and knowledge and humour in accurately sharing medical information…Plus your speaking voice is So Pleasant and you always look gorgeous and positive! I am a medical professional and have watched you for years because you are truly a WONDERFUL person and many medical professionals could learn a thing or two from you about PROPERLY communicating with their patients! ❤from Montreal

[@JohnR31415]

I had a laparoscopic panproctocolectomy a month ago now, whole lot out in one, stoma installed… I was in hospital for surgery on the Monday morning and left by early Friday! Had no real pain at all (though I was on IV paracetamol for the first day and a half). I was sitting up in bed on the Tuesday (maybe even the Monday evening, but I don’t recall much of that day). I was back at work (from home) less than a week after going home…. I had two paracetamol on the Saturday because I was sat up on the sofa too long and my core muscles complained a bit… Not saying it’s not a painful process - but it’s not always… I’ve clearly been very fortunate.

[@missyme2673]

You're my hero! I have mine coming up in March, and I'm absolutely petrified, especially the recovery and post-op complications.

[@rcs3030]

WHAT A BEAUTIFUL PERSON......INSIDE AND OUT !!!!

[@andywindes4968]

Pain! I was promised that this surgery would solve all my problems. The surgeon did some sort of nerve damage and I have been in constant pain since 1996. My advice--if you want this surgery--is to seek out the most competent colo-rectal surgeon I could find and have him or her lay out all the downsides as well as upsides. Keep in mind--nerve damage is a known consequence, and you will sign a release acknowledging as much. I would never have this surgery (at least under the conditions I had it) if I could do it all over.

[@LetsTalkIBD]

I'm so sorry! It's definitely a huge risk with this and I've heard of many having long-term issues with the nerve pain it can cause. Hopefully something will come along to give relief for this!

[@andywindes4968]

@@LetsTalkIBD The last thing I would want to do is come across as a whiner--I'm sure you understand. I was born in 1963, first got sick with IBD in my teens. Surgery in 1994 is why I am still here, have had a marriage, children , and a career (that admittedly got cut a little short.) We all have our crosses to bear, so to speak. I want people to understand that when they go into any medical situation that they should be well-informed and have realistic expectations. I'm really happy that you are doing what you are because it shows that we are stronger than we know and there is no reason to fail to shoot high. I'm 61 and continue to live a very good if not perfect life. But who does? Count your blessings!

[@janenebookyworm2453]

@@andywindes4968 Can you describe nerve pain you have please? My non verbal disabled son has to have this surgery soon. He wont be able to tell me about his pain. I will have to watch like a hawk and try best that I can to minimize pain for him. It would help me to know what he might be experiencing if he has this so I can help. He is just used to being in pain a lot and doesn't know how to communicate this, so he just bears it.

[@pixie706]

Maggie you are so brave and cheerful . You make me feel ashamed of moaning about anything . ❤❤

[@DorothyDNelson]

Thank you so much for this. I'm facing this surgery in my future. I've done lots of research, and hearing from someone who has been through it helps. ❤

[@lorifox4699]

Beautifully said. I don't have chrons or any of the side effects, but i stick around for the way you live through the good and bad things. Thank you for sharing your experience and outlook. ❤❤❤❤

[@4cats2008]

I also don't have these issues, but got hooked when trying to learn more of my cousin's journey with UC after she had these same 2 surgeries. My 3rd grandbaby recently arrived (1st baby for my 41 yr-old daughter) so Maggie's pregnancy is a joy to be following now too!

[@kasiapek7575]

I stumbled on your chanel when you had this surgery, cos it sound do horrific and wierd and stayed! You are such a nice person!:) and i like when you show your daily life, trips or home because it is so interesting for me and different:) and now your journey is so craaaazy! Im really really happy, that you will have what you dreamed of: a family:)

[@Ashvsmovies]

Amazing info!! Had my BB 4 months ago and your videos helped tremendously. My wound still isn’t healed all the way either :/ super weepy and just seems at a halt for healing. So hard to get all the hair from down there and keep it dry. I am hopeful it will heal sooner than a year :/

[@wendydyer9505]

Love your channel..I am waiting to get a surgeon for my stomi surgery. Learning a lot from you. Thanks..So glad to hear you are pregnant

[@michellem8284]

I had heard you talk previously about how painful it was to have the stitches removed, and I was therefore terrified to have my stitches removed. My stitch removal was completely painless. Just wanted to let people know that it is not always painful.

[@LetsTalkIBD]

It's so interesting how the experience differs between people! I've never experienced anything more painful - maybe I have too many nerve endings on my backside 🤣

[@angelairvine3091]

I had my ileostomy and rectum surgery done the same day 15yrs ago I was in hospital for 3 months recovering

[@madampolo]

Thank you for the information. There are people who need it and will benefit from it.

[@marthab255]

9 years now for me. I am surviving. I had Squamous Cell Carcinoma that metastasized to my liver. 4 years since liver ablation. I now have medication induced Lupus and Discoid Lupus Erythematosus. I am still living but not easy with an ostomy. 😢we call it a Barbie Butt.

[@Dexy83]

Happy 2025! As I'm watching, 10,000 views/987 likes... Never see that! Great job, Maggie!

[@rebeccawiens4224]

Hannah Witton mentioned! My two favourite KZbinrs with IBD.

[@lisamoore6804]

I had 'roid surgery a few years ago (took me almost a year to heal) and that was sooo painful so I really do believe you when you say you had so much pain after your surgery and a long healing time. I'm really glad things did work out so well for you after all that you went through.

[@que-stead-que1717]

Hi Lisa, I had my surgery (everything at once) on 01-06-21. I have also had roid surgery back in 2004. I can very honestly say to all that for me the pain from my hemorrhoid removal surgery was much worse than from the proctolectomy portion of my colectomy surgery. Yes it’s painful, but for me it was far more tolerable with the proper pain management medication.

[@leslieburnfin7612]

Yes I have the very same issues and was told no one would fix my problem.

[@DianePicard-e3n]

I’m 64 and had ileostomy in 2023 I’m waiting to have thé rectum removal . I was told by my surgeon that I will stay in the hospital for 5 days and that she had a patient that two month later her patient was riding her bike. But hearing your experience I’m not sure.😮

[@kelseydesrosier5661]

I developed sepsis/peritonitis following my rectum removal. I am not sure why this happened exactly since it was done locally via the rectum not abdomen, but I had to have an emergency bowel resection about 36 hours after my proctectomy. Thankfully I was still in the hospital!

[@LetsTalkIBD]

Oh my gosh that is awful! That is how I wound up with my ostomy - a resection led to a bowel perforation, peritonitis and sepsis. Awful, awful pain! I hope you're doing well now!

[@kelseydesrosier5661]

It was definitely awful at the time, even my doctor admitted afterwards that he wasn’t sure if I’d survive 😳 Doing a 1000 times better now though!

[@lachilo2]

Ooh my God, you scarred me ….thank God you’re safe❤

[@OurConvictPast]

My father in law had a colostomy due to bowel cancer. He really struggled with gas, and some foods definitely made it worse, was this your experience as well?

[@annegreenwood3624]

you look pretty love your shirt thanks for sharing I too have bowel disease,learn so much from your channel

[@juliae.8237]

Thank you for this video I am getting this in the next few months. I have a question how was going up and down stairs? Were you restricted to one floor for any period of time? Thanks

[@OzarkSoaper]

I am having this surgery in a week. I am having it robotically we hope. I am well aware of what the surgery entails as I am a retired Certified Surgical Technician and have assisted on these surgeries before. However, with the issues I am having with my rectum and bleeding it is a risk I am willing to take.

[@NikkiSeal]

I have had ileostomy for 8 years with no normal time, I have bowel movements through rectum with great pain. I have pain in my saddle area and tailbone area without much relief. I just underwent pain pump surgery 4 weeks ago and now have surgical pain as well as burning and deep pain in rectum, urethra, abdomen,bladder cramping and side pain. I try to get up each day for as long as I can. I was hoping the pain pump would help, but still too much surgical pain that is probably covering up regular pain. I was hoping for tailbone or rectum removal, but not too excited about this now. The pain from surgery is still too much. Help me please. Where do i turn?

[@robinthornton8282]

Why couldn't they give you a local when they took your stitches out?

[@TonyCoates-r4e]

hi maggie..........i had a proctocolectomy a few weeks before you did...............a few days later i asked the surgeon wnether he'd taken any biopsies.............he held his arms out wide and said "i sent the whole thing "..............a few days later still the surgeon and the senior nurse came to inspect my anus surgery so i got on the bed and bent up-----------bit embarassing but made worse by the nurse being an old friend of my daughter and who i knew well..............tony from australia

[@L._._]

Sorry for the crass question or thought… do you miss farting ? I’m so sorry to ask. I’m an RN and curious about all things medical or TMI … feel free to ignore ofcourse 😂

[@BeckyNix-h9d]

@@L._._, no problem! My Ostomy takes care of that little function. Loudly, sometimes!

[@que-stead-que1717]

⁠@@BeckyNix-h9dlol and let’s not forget uncontrollably 😂. My Oklastoma (its name) only gets noisy in front of guests.

[@BeckyNix-h9d]

I had this surgery almost 2 years ago. Since then, I have developed a large perianal hernia that ‘hangs’ out of my former anal area. I can feel it when I walk, cough, clear my throat, and sometimes when I sit. My gastric surgeon has not given me a solution. Do you know of other people who have this problem and how it was remedied? I also have a large abdominal hernia, which was fixed one time already. Please give me some hope that I won’t have extra on my bottom for the rest of my life. I am 75.

[@LetsTalkIBD]

I do not currently know anyone experiencing a perianal hernia - I am so sorry you are experiencing this and haven't received any potential solutions from your team! I will ask around to see if I can learn anything about this. I highly recommend that if you're on facebook joining an ostomy group. The members can ask questions and usually get a number of responses!

[@BeckyNix-h9d]

@, thanks, Maggie. Love that you are having a little sweetheart in May!!

[@leslieburnfin7612]

I am 73 and I think they won't help me because of my age. This happened to me because I lifted something too heavy a year ago causing everything in my abdomen to move around and drop down and where my anus used to be, that's where my pain is like I'm sitting on a tennis ball all the time.

[@BeckyNix-h9d]

@@leslieburnfin7612, surely not age discrimination in 2025!!

[@glancycorner7425]

@@leslieburnfin7612😢

[@Roo2Cat]

Can I ask an ostomy question. Is a mouldable ring better than a protective seal?

[@LetsTalkIBD]

Do you have specific brands / products you are referring to? It's a little different for everyone but I can try to share benefits/cons to certain products!

[@Roo2Cat]

@@LetsTalkIBDThanks. I’m using the Coloplast Brava protective seal just now, but it seems to ‘dissolve’ before the base plate needs changing - I’m trying to preserve my skin by not constantly sticking and un-sticking the base plates!

[@carol-eo6yl]

thank God i do not have that.

[@TheMutantCreeper]

I plan on getting ileostomy surgery for my ulcerative colitis so they’ll keep my rectum. I know the rectum surgery will come in the future but god this is something I will not look forward to.

[@michellem8284]

Please consider just doing it all at once. Kayla Glumac just had the rectum removal surgery and is documenting it on KZbin. Personally, it seems tougher to have the two surgeries separately.

[@p.michaelpell6540]

All I have to say is don't ever consider this type of surgery if you plan on having it done at any VA... unfortunately I had one performed at a VA on the East Coast in 2019 and it has been an utter nightmare ever since!

[@ireneandreasson8008]

How long is the recovery time. I got Chrome and did my colostomy 4 years ago but my anua produce a lot of slimelike moisture every day. I am 60 years old. Can you recommend a stop for this cause I dont want a 4 years recovery. Can I use a tapon in my anus? I got no muscles left in my anus. Do you have a ansver how to stop the flow and dont have to use cotton in my underwear/ Irene from Sweden. You are super to make videos ❤

[@LetsTalkIBD]

Hi there! I do talk about recovery in this but if you still have a rectal stump, it is normal for mucus to still be produced. A pelvic floor therapist may be able to help you work how to expel it but it does need to continue to come out. You may want to talk to your GI to see if there is anyway you can help reduce this or remove the mucus on your own time. I had so much mucus which was a big reason I went for the full removal with anal closure so I have nothing to produce anymore of it.

[@BeckyNix-h9d]

@@ireneandreasson8008, I had a LOT Of mucous from my rectal area for a year. Nothing I tried stopped it, which is why I chose to have my rectum closed.

[@AdAstra870]

I have to suction out mucous every other day + then do an enema flush. If you have a loop ostomy there is a device you can buy to insert a cather into the bottom segment of the colon from the stoma to flush it out from the top but I have not tried that yet. I plan on asking my WOCN about that.

[@carolemantha8958]

❤😊

[@malinnesse3876]

☀️🌼

[@chrisjohanson9284]

♥️🙏☀️😎😎👋👍🌟🤰🧸🌺💖