Honest Proctocolectomy Advice (from someone without their rectum) | Let's Talk IBD
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- čas přidán 8. 07. 2024
- Let's talk about proctocolectomies (closure of the anus and removal of at least the rectum) honestly! Yes, it is a difficult surgery but there are many ways to prepare to ease your recovery period.
00:29 Intro
01:38 Prepare Your Body Physically
03:06 Figure Out Surgery-Day Logistics
05:16 Setting Realistic Expectations
12:11 Preparing Your Home
13:47 Items to Keep on Hand
17:53 Wound Care
22:06 Other Services to Look Into
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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 had my proctocolectomy in 2009. My recovery was difficult, but when it was over, I felt like I had my life back again after almost 20 years of Crohns. Today I'm healthy and active - and very happily married. Thanks for the work you do Maggie!
Hello Maggie. Maggie, I am in a state of stun. I never thought I would be writing these words. After a year, the third surgeon I went to see (the first two surgeons let me down) got in touch with me. Here in the UK, I am having my colostomy surgery next month. Please, wish me a good outcome.
I am keeping my fingers and toes crossed that everything goes beautifully for you and recovery is smooth!!
All the best, it’s not too bad once things have healed. Welcome to the club😊
God Bless you ❤
Praying for the best for you! You can do it! ❤
I am 6 weeks out now and still healing but no regrets about it. Although I will say this recovery has been extremely hard.
As always great content , I'm 9 weeks post protectomy and fully healed with no complications, as you said I was in good condition going into the surgery ,daily walks and swims for the six months prior to surgery ,
I had keyhole surgery and the butt incision was closed from the inside ,all I have now is a thin line where the anus used to be ,
Just wanted to inform people that some surgeries can go well and I was one of the many fortunate ones .
That is AWESOME! I'm so glad you are healing well!!
Believe me my husband had this done and never looked back.He died 2 years ago but not because of this he had gotten sepsis from a wound I had him for 15 years more because of this surgery..Go for it if u need it ! You'll be fine.❤
I am so sorry for your loss. God bless you for encouraging others❤
Sorry for your loss
Was very fortunate to have my rectal removal surgery in Ontario Canada.
I had a nurse come every morning from Ontario Home Care to change the dressing and give advice until it was healed.
They also supplied all the medical stuff.
The hospital arranged it automatically and was free.
Mine saved my life. Would not change a thing.
Got my ileostomy 3 months ago and it has been awesome since.
So happy to see another Crohn's patient sharing your story as well there is not enough of us shareing about this disease. Your channel inspired me to start talking about my journey on YT as well
That's awesome!! Just subscribed!
I’m currently facing a potential APR. It’s scary and overwhelming, but your videos have been comforting and educational. Thank you for taking the time to make these.
I also feel like my situation is very similar to yours. I have severe perianal Crohn’s disease and had an emergency ileostomy in October 2023. I was told that this would resolve everything, but I have mucus bowel movements at least 3 times a day with pain and urgency. My colorectal surgeon told me he doesn’t know how I’m managing to work or even function daily. I’m in nursing school right now and it’s been really disheartening to have to put my life on hold, but I’ve learned that health comes first.
You are so good at talking and bringing to the surface the subject that is so embarrassing to talk about for many. Thank you for daring. I had surgery to remove my rectum in February this year (have colon removed and stoma in 2022). The surgeon told me that they sew in layers and the problem I have had is that one of the stitches from the layer underneath has stuck out and caused irritation. It was like sitting on a sewing needle constantly. Twice they have cut open the skin in the butt to try to remove the thread I felt. The last attempt was successful and since then it is much better. Only hurts if I happen to stretch the wrong way or get in the wrong position with my body so the skin is pulled out down there. So my biggest problem now is fatigue. Removed the cervical plug in May and I notice that the body does not know where to focus on healing first and that I have a hard time staying awake when something happens.
Maggie, just reading the comments posted here, your video(s) are so helpful!
I am so glad I had laparoscopic surgery. It made recovery much easier
thanks for making this video. I've been there but many will go down this road. very very accurate.
Thank you for sharing this info. Im going into surgery in two weeks and they are telling me three days in hospital too. Your video gave me realistic recovery expectations which is what ive been seeking.
best of luck to you!🙏
Lifesaving for me and very few issues after 30 years! Went on to have 2 children after IVF and stoma behaved perfectly throughout both pregnancies.
My greatest regret regarding proctocolectomy comes from the nerve damage and subsequent chronic pain that resulted. There are a lot of nerves down there, folks! I've had to use strong pain medicine as a result for decades. My advice to anyone would be, educate yourself and ask questions before going down this road.
You are so right it's been 2yrs.and I am still dealing with the leakage of the wound.
These are good things to know, but I’m so sorry for you both. 😢
@@bettylee2004 after 1 month i still have some leakage , like yellowish and a little watery blood, not so much but its annoyin..i need to change gauze once per day atleast..surgeon told me that they did left a liitle gap so it can go outside so they dont need to reopen wound ..i hope it will stop soon...cuz its rly annoying.
@@bettylee2004 I hate to be the bearer of bad news, but my surgery is 30 years old and it has never healed. Sometimes it gets worse, sometimes better, but I always wear the sorts of pads that older ladies wear for bladder leakage. On the other hand, I am sure that I would have died in 1994 without the surgery and alive with some pain and inconvenience beats dead every time.
I asked about possible nerve pain from my doctor and they said long time pain is possible, but it's not likely that will happen. Is there some way how I could prevent long time nerve pain? (Other ways than skipping the surgery)
What a wonderful service you are providing! It's great to see someone talk so openly about something that can be a very embarrassing and frustrating topic. Keep up the good work! (And, start that group! 🙂)
This was really useful. For me, my stoma was created in 2009 and I’m now considering proctocolectomy.
Maggie, interesting talk. I don't have the same problems you have but my mom did and I have irritable bowel. So, I watch. Sometimes you do have tips I can use.
Oh, and btw, the flowers on the table are so pretty. Another arrangement from your garden? Lovely! My balcony garden in full bloom. I'm a flower lover too.
I'm glad I can provide an occasional tip! And yes! My stargazer lilies just started blooming :)
thanks for helping me understand my sister a little bit more
Bless you for taking the time to understand her. She is truly blessed to have you. My sister used to be my biggest supporter, but has had issues within herself that have pushed us apart (NOT my choice, but I've had to accept that I can't force her into a place of understanding or support just because I need it. Having me almost die a few years ago traumatized her, and she hasn't been able to deal with it. I'm fine as I can be now, but there will always be risks with these health issues, and it scares her). I just pray for her and love her where she is; its all I can do.🙏🏼❤
Hi Maggie i just had my surgery in april . Surgery went well. So far I'm doing ok. Thankyou for sharing your information 😊
Thank You.
It is impossible not to like you.. 😊
Oh my God me too with the yellowish discharge. I do have to change my guaze also and yes it can get annoying.
This is good advice for any surgery.
Thank you for this , Maggie. I've been contemplating this surgery for a few months now, I had a full ileostomy exactly four years ago but I still get painful ulcers in my end bit that bleeds for days and continues to leak fluid daily. My GI consultant thinks a stoma reversal would be good for me, but my output is always watery, so I'm petrified of leaks from my bum! I just want the leaking to stop, it goes everywhere, despite me taking many precautions, I even keep tissue paper folded and wedged between my cheeks as well as permanently wearing an extra long night time pad! And I sleep on an incontinence mat in bed. My skin is very delicate and sometimes gets sore. My small intestine seems clear for now, but does that guarantee that it will always stay disease-free? I really don't know what to do! 😢
I'm not an active on comments but I needed to write my comment down. You look amazingly stunning. Your physical appearance has increased for the best. Your face is glowing and more healthy. Best decision made ever getting the colon removed 😊
Thank you so much!!
Amen to that 🙏
I’m having a partial colectomy in the morning 7/10/24.
I wish you a very successful surgery and recovery!❤
Hope it goes well!! Best of luck!
You are in my prayers.
@@hope4all366 I had the procedure. Feeling good thanks to the pain meds. I need to get up and start moving around.
Thank you for thinking of me.
I started scar tissue massage therapy/PT in the past 6mos after multiple small bowel obstructions. I still am going to be getting a PEG tube soon to help manage if I get obstructed (because it is nearly IMPOSSIBLE to do an NG tube on me to vent the gut, due to nasal polyps), but I really think the surgical scar tissue mobilization is helping. Just being aware that these abdominal surgeries CAN lead to obstructions even YEARS after the fact is important. I never realized this could happen until it became a huge issue for me.
Maggie; what is your experience (if any) with adhesion and scar related obstructions/other issues? Thanks for talking about all this chronic health stuff. I dont have IBD, but I do have gastroparesis and autoimmune and other health issues chronically, and your channel has been a ray of sunshine in an often dark room!❤
Maggie I just had my proctectomy on June 25th. They sent me home with 15 pain pills and muscle relaxers and pads to put on my behind. The pain has been awful plus lots of leakage and burning. They never gave me home health care. I feel like giving up. Surgeons office wants me to visit nurse practitioner tomorrow for them to look at incision in my bottom. Scared. It’s a 40 minute drive each way. Hubby driving but scared for the pain. I really wish they had a nurse come to my home to check me out. Any tips? You have helped me through my journey so much. I love my Ileostomy have had her a year. She saved my life
They only gave me 15 pain pills as well! I’m glad they gave me refills as long as I needed them. I had my surgery in February. The pain is a lot better now, but it was so bad for a while. My surgeon is 2 hours away and the drives did suck.
@@jaimerzford5479 you are so lucky. How long did it take for your pain to be better? It hurts so much. I’m expected to go back to work in 4 weeks
Hi Maggie in the uk my stoma nurse got me a valley cushion on prescription which was brilliant for sitting on , it has 2 sides to it that can be inflated individually making it great to adjust for comfort.
Maggie, I haven't had a proctocoloectomy, but I had a pilonidal cyst surgery many years ago, and it took months to heal (mine was a gaping hole that was not stitched and left open to heal slowly from the inside out). It was not fun at all! That part of the body is not very conducive to healing, because it doesn't get any air flow, and the skin is always touching.
I was wondering, do you (or anyone else on here) have any experience with old scars becoming inflamed and painful? About a year and half ago, my very old pilonidal cyst scar began hurting, and I went to see the doctor. That began a series of me being handed off to various types of doctors (a colorectal surgeon, and now a plastic surgeon). I had multiple appointments with the colorectal surgeon, an MRI, and even an exam in the hospital under aesthesia, to see if the cyst had returned. The surgeon said there was no cyst, but my scar is still very inflamed and painful. He referrred me to a plastic surgeon, and he did a cortisone injection into the scar to try to relieve the tenderness. It didn't help, and it seems actually worse now! The scar is very firm and raised (hypertrophic), and it's painful to sit for more than about 30 minutes at a time.
Anyway, I'm so fed up with no one being able to figure out what is going on with my painful scar! Has anyone else ever had an experience like this? Or maybe I'm the only weird freak in the world with this problem? 😂
I too had pilonidal surgery many years ago. Can't say that my old scar ever pains me, but every blue moon, that area will get puffy (like there's a small fluid buildup) and will lightly bleed if I wipe in the top of my cleft. But this never lingers more than a day or two, and it resolves on its own. (I always assumed it was my perianal Crohn's irritating my pilonidal in some way, but who can say...) Sorry I can't offer more insight into your pilonidal pain. But I do hope you get answers, and as always, healing!
@@TiffanyM3 Thank you for sharing your experience, I appreciate it! This isn't the kind of thing I feel comfortable discussing in everyday conversation (nobody really talks about their "butt issues" openly). That's why I appreciate Maggie's channel so much, because she talks about the "unmentionable" things in a straightforward, honest way!
I have another appointment with the plastic surgeon in a few days, so we'll see what he says after taking a look at the area. We gave it a month since my last appointment (10 weeks since the injection), to see if the inflammation would calm down, but to me it still looks the same, and it still hurts. I'm just so sick and tired of dealing with this!
I wish you well in your healing, as well, and again, thank you for your reply! 😊
I had my proctocolectomy procedure on the 29 Feb 2024. My anus split leaving me with a wound 7cm long x 4cm wide and 5cm deep. It's taken 15 weeks to close the wound but I find that I am still very tender and painful there. Also I have restricted movement now on my bottom and it really feels tight. Is this normal? And does the pain and tightness end?
Definitely make sure you're bringing these concerns to your surgeon, but in my own experience, it was tender for as long as it was open and even a little after that (so over a year)! The pain went away for me, but there is a bit of tightness because of the scar. It isn't enough to bother me daily, but every now and then I notice it gets irritated if the skin gets pulled a little!
@@LetsTalkIBD Thank you for your honesty, openness and bravery for talking about this procedure. It's so isolating here in the UK and there isn't really anyone to discuss issues or problems with. Keep up this insightful and informative channel please
@@paulwestwood3895 💛💛💛
I also had mine in February and mine split too. It was 9cm deep and is now 6.5cm deep. It is healing so slowly. The pain is a lot more tolerable. I just wish it would heal faster. Also had complications right after surgery so I was in the hospital for 2 weeks.
My mom had a proctocolectomy 14 months ago, she had cancer, her incision also split where her anus was and a big amount of fluid came out of it, it took a lot of time to heal… she used period pads, several a day…and it needed to be healed so she could go to chemo, to this day she says it’s really weird, feels restricted, she has a phantom rectum feeling, it took a lot of her and us, her daughters. All of you guys are such strong people XOXO
You can comfortably ride a bike! I miss riding my bike!
after 1 month i still have some leakage , like yellowish and a little watery blood, not so much but its annoyin..i need to change gauze once per day atleast..surgeon told me that they did left a liitle gap so it can go outside so they dont need to reopen wound ..i hope it will stop soon...cuz its rly annoying. Maggie how long it take ur wound to stop leaking, i dont know i didnt have any pain down after surgey but every1 told it hurts as hell but its a liitle uncomfortable when i sitting for short time.
How did you do your own wound care in that spot? TMI, but when it comes to that area, I can't see or reach to even wax myself.
I used a makeup mirror!
The toughest part for me was when anesthesia wore off. The abdomen was on fire🔥
Yes!! You think you aren't in much pain and then suddenly... you are!
I thought one of two things had happened when I came out of the anesthesia for this surgery: I had either been hit by a truck or a strong man with a sledgehammer had been beating on my guts while I was under.
❤❤❤❤❤God bless you
Hi, I had my proctocolectomy 2 months ago and it really wasn't easy because I also had fistulas that went from my small intestine to the surface of the skin and down to the rest of the rectum, which then also went over the left half of my butt. It consisted of 3 large ones But I only woke up when they were all over because it took several days. I was in an artificial coma for that long. When I woke up, I had only had VAC therapy for a few weeks. Now at home, a wound nurse comes every morning, as you said, especially for wounds, she tamponates them wound always with Aquacell plus extra, it's something with silver in it (that's the name of the product) and it works very well with it for a few weeks now but I also have the problem that the wound releases so much fluid, it's very annoying, it happens to you and so down terrible that's why I also wear absorbent pads anyway I hope it gets better I'm only 19 and that's anything but easy but the video has helped me to approach the matter positively now, thank you very much, greetings from Germany ✌🏻
and sorry for my bad english 😅
God loves you❤
Hey , I have watched many videos of yours since last two months. I have been diagnosed with chrons in 2022. According to doctors it has affected only 8cm of the last part of the intestine so far. So they have recommended to remove it. They said that it is not spreading and is localized so far. so if we remove there are chances that things will go well. I am approximately near 40 years. Do you think it can go bad in the near furure. Any advices please. I am very scared and i have a surgery in Aug 2024 . Looking for some advices and experiences.
"My rectum was dying"
Is that from IBD? Crohns thats was killing it? Or from not being used for so long? How long had it been since it was used?
Thanks in advance.
My Crohn's disease caused severe inflammation which led to stricturing and scar tissue in the rectum. It had been 10 years since it had been used!
@LetsTalkIBD I had a misdiagnosis, and they removed my entire sigmoid colon and half my rectum. The biopsy showed NO CANCER. The anastamosis they used to connect my colon to the last of my rectum was too large, and my colon got stuck in it. I was unable to go to thrE bathroom, pass gas, I didnt eat for 42 days, I lost 72 lbs. Another surgeon saved me at the last minute. I now have a stoma, a distal colon with a mucus fistula. Problem is the damage done to my rectum. It's left me in chronic pain. I also have a structure behind my stoma. Like after the first surgery, they think I'm crazy. One has to advocate for ones self. I want them to remove the mucus fistula redundant colon, dissected just below the anastamosis and staple my rectum shut, leaving me with a rectal stump. The mucus fistula redundant Colin goes through the same stomach muscle with my functioning decending colon. When waste goes through it triggers the redundant colon which in turn makes my rectum react, pain and tenesmus happens.
This is why I asked you, I don't have any disease, I am told by some that a rectum can be left on its own, detached from the colon.
You are an inspiration and a wealth of knowledge .
I’ve had an ileostomy for 8 years. Over the last few years, I have had bowel movements through rectum. With this, I have severe stomach cramps, weakness, sweating and weakness with shaking. I have been told my rectum is 2 inches in length, but my output consists of several bouts of a lot of stool. This was the reason I had an ileostomy, the very same symptoms. I’ve even gone to ER when I can’t take the pain even with enema. This seems to happening a few times each month. My surgeon has been informed of this problem, but doesn’t seem to be too concerned. I don’t want to go through another episode. Is having my rectum removed the answer. If rectum is closed, where does this poop go. Will I have a worse problem with built up stool and no way to release it. I spend a lot of time in bed because of L5-S1 nerve pain for which I receive injections. Some times injection doesn’t help, but over the years, I have had good luck with relief lasting 6 months. I’m scheduled for injection to help this pain next week. So I have two separate problems. Can you give me any advice?
I had my jpouch surgery in 1994, and in 2021, I got an iliostomy (but my jpouch is still intact. I’m in denial that I will get my barbie butt surgery in the coming years. I really really really don’t want to get it done. I’m freaking out
Hello Maggie, I'm in the UK. What does this Waffle Cushion look like? Keep up the great work, Regards Paul
🙏♥️😊☀️😎🌟👍