Phantom Rectum | Let's Talk IBD

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4 жыл бұрын

Ever hear of phantom rectum? Its a totally real thing post-proctocolectomy, and quite a strange side effect of the surgery!
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Пікірлер: 122

@barbsullivan2352 4 жыл бұрын

Has anyone who had a prococolectomy have there incision in their rectum open up and if so how long did it take to heal. I mean the whole incision.

@staceyarmstrong6606 4 жыл бұрын

My whole incision opened back up a few days after surgery. My surgeon had a wound vac placed, I had it for 3 months and healed beautifully.

@Level1Bob 3 жыл бұрын

I had my surgery on February 1st of this year and my incision opened up approxiately two months later. I was prescribed a wound vac and home health and it just finally healed up, completely, about two weeks ago. I know Maggie chose to not go that that way, because of logistics, but it worked great for me...except for being hostage to the vacuum all of the time. I also get phantom rectum symptoms. For me it is a precursor to my stoma blowing a lot of wind.

@erockromulan9329 4 жыл бұрын

All seriousness aside, Phantom Rectum is an awesome band name.

@LetsTalkIBD 4 жыл бұрын

YESSSS

@blankblank5524 3 жыл бұрын

Agreed!

@tinabreitfelder592 4 жыл бұрын

Omg, I needed you a year ago! Seriously no one tells you these things. I remember freaking out to my dr. saying that I had just "pooped" and how is that possible with having an ostomy etc. A year later I totally understand and actually think its fascinating that my colon still produces mucous thinking that it is doing something. I have noticed too that it seems to correlate with the consistency of the contents of my ostomy bag. If it is more liquid then I have more mucous, almost as if, had everything still been attached I might have had diarrhea. It is so weird though to feel that urge. Thank you for enlightening so many people. Wish I knew sooner.

@cindyfurlow3186 4 жыл бұрын

I have had my ostomy for about 3 years. I still have my colon and rectum and with that comes the mucus and the phantom rectum. My ostomy was a result of radiation treatments for anal cancer which caused a quarter size hole to develop and my stool to come out places it shouldn't. I know this sounds crazy, but I love my ostomy and all that comes with it because it saved my life.

@mizboom 4 жыл бұрын

Oh not crazy at all. I’ve been having really bad pain from my colon and rectum for three years now (I have Crohn‘s) and it was switched off the minute I had my surgery four weeks ago now. The relief is unbelievable. And even though there’s complications I still love my ostomy!

@beckyhuber6206 4 жыл бұрын

I had my proctocolectomy back in 1993 and I still from time to time get phantom poop cramps! It is crazy! Love you, your channel and your home .. God bless you both .

@SharonLaMotte 4 жыл бұрын

Hi Maggie, Yes I get the feeling of having a phantom rectum. I had proctocolectomy 7 mos ago due to rectal tumor and its less often now . i am cancer free ! Yeah. And. thank you for all you do,; You helped me to learn how to care for my colostomy and deal with the issues early on.

@lisatowan4536 4 жыл бұрын

I had my sigmoid colon removed and had a temporary colostomy. I experienced phantom rectum. I had mucus and even passed gas a few times. Strange when things aren't even connected.

@jamiesingleton3909 4 жыл бұрын

Omg that barn is looking amazing! I had never really paid a ton of attention to what your plans were, so it’s amazing to see that!

@ronderulijkummar7453 4 жыл бұрын

Awww those chickens are absolutely adorable! And your yard is beautiful! I love those flowers!

@LetsTalkIBD 4 жыл бұрын

Thank you!!

@Joyce-dd3fm 4 жыл бұрын

Forgot to add that you have been through so much and you still look very beautiful, Maggie. You and Zak make a perfect couple. 💕

@caravellecrashcaravellecra252 3 жыл бұрын

Hi, from Dublin, Ireland. Wish I had found you three years ago!! Had a protocolectomy for rectal cancer three years ago. Wound took a year to heal. Very difficult to get information about it at all. Delighted to have found your channel , its really helpful. Thanks Serena

@Ascensiion1 4 жыл бұрын

Oh my gosh your property is beautiful and the progress on the barn is really coming along. I'll say it again, I'm so happy for you both! Stay safe and take good care of each other! God bless! ❤🙏❤

@rhondahelfrich2563 4 ай бұрын

Love you both! Thank you for sharing 😊

@amymyers79 4 жыл бұрын

Hello from a nearby PA ostomate. Thanks for doing all you do for the community, Maggie! Zak too!

@astrol64 4 жыл бұрын

the chickies are adorable! And beautiful flowers, Maggie! Building is lookin good!

@Joyce-dd3fm 4 жыл бұрын

Chicks are so cute. The barn is looking good! Beautiful flowers!

@sheilac4368 4 жыл бұрын

Your flowers are beautiful, they are Sweet Williams.... and ole timey flower ❤ Sweet fur babies.... 🐕🐕 .....Take care of yourself, I love your videos, my youngest Son has Crohns and he is 34 years old and his is in remission, he has had several major surgeries... But he is doing good 💙

@aleshairwin8838 4 жыл бұрын

Very pretty flowers!! That storm looks like some of the ones we have & talk about humidity - you should feel it here in Florida!! It was a gorgeous day here today though!

@mizboom 4 жыл бұрын

I was really glad I had seen your videos before ostomy surgery: I knew to expect the mucus. Would have scared me otherwise.

@daynal 4 жыл бұрын

I am an RN and worked on a Colorectal Unit and the surgeons never told their patients about it!! So I would have to explain the mucous and that is normal despite having an ostomy.

@McChrister 4 жыл бұрын

Yup, those are sweet Williams....The birds are pullets by now. Love your house and garden... Love your dogs as well. God Bless you both....🙏🏼🍀♥️👋🏼🇨🇦

@franciscoortega2674 3 жыл бұрын

It´s a weird sensation even if you know is no way that happens but the body after almost two years of the surgery still tries to do what always do. Its strange that the doctor never mentions it.

@remahreid8431 4 жыл бұрын

I get the feeling I need to go to the bathroom even though I have no colon and no rectum. You're right we are not told to expect this. It is the strangest feeling. 23 years later and still it goes on . The Joy's of life. Your barn is looking Amazing, I love the little chicken's and dogs too. Blessings to you and Zak.

@steve323f 4 жыл бұрын

I used to get phantom rectum for about 3 or 4 years after my surgery. I found that going to the toilet and (pardon the pun) going through the motions of what I used to do eased the strange feeling. Also I got the feeling to pass gas, like a bloated lower abdominal feeling which I called phantom pharting 😂. 20 years on I don't get any of that at all now.

@paulmccorry3974 4 жыл бұрын

I had my whole large Intestine removed 13 years ago and yes I also get phantom contractions but it is strange seems to only happen with me like for a few minutes once every six months

@atlantis7029 4 жыл бұрын

Hi, my name is Alan from the UK and I had this operation 2 years ago and everything you have been through since Christmas I went through but I still get the feeling that I really need to pass wind.

@ginathompson8774 4 жыл бұрын

I have had a collecting and Barbie butt. I get the feelings All the time still and mine was done last August so I know what you mean.

@laurabess6446 4 жыл бұрын

I do not have a rectum or sigmoid colon anymore. I have a barbie butt too. I have felt like I need to have a BM back there. I thought it was just me.

@adelarodriguez3717 3 жыл бұрын

You two are so adorable!

@vancekershaw6876 4 жыл бұрын

I like your videos and I wish you both the best in life ❤

@nancyterrywhittemore2015 3 жыл бұрын

You have a beautiful and property---Can't wait to see the finished or the wedding venue!

@5p674 4 жыл бұрын

Nice chickens, beautiful garden, handsome dogs, great barn, lovely property...The Phantom Rectum sounds like a horror story!

@valeriemillns3415 4 жыл бұрын

Sweet Williams are biennial July will be 40 years since I had my ileostomy,

@maryalice8507 4 жыл бұрын

I’ve had the procto since jan 2018 and i still get the feeling that i need to pass gas out of my rectum. Weird feeling. I have a colonostomy and can feel the feces moving through my bowels and know when it is going to start coming out of my stoma. I even have to push to get it out sometimes which is very strange. Everyone else i talk to say they don’t even know they’re going until they feel their bag filling.

@RedSpiralHandTV 4 жыл бұрын

It seems like there is a HUGE upsurge of people who are having these procedures. I have a background in public health, medical research and epidemiology so I'm interested in this subject. As an adult in my 60s I don't remember this as being so widely done on so many people. I wonder that more IBS symptoms are getting bad due to pesticides and GMOs...it's actually listed as a side effect of glycosides, you know....

@annegreenwood3624 4 жыл бұрын

the barn looks so awesome lv the flowers the hard thing about covid if you hv bowel disease no public bathrooms thankful some have let me use there’s the spasms the worst the chickens super cute another great video

@almazmengistu8400 4 жыл бұрын

I had the same surgery you had and have feelings to go to bathroom and sit . I sit in the toilet for few seconds and goes away sometimes little painful.

@danidthesupersupporter 4 жыл бұрын

Just started watching you guys a month ago it popped up in my suggestions

@jhors7777 3 жыл бұрын

I love your blue polish and your hair

@Astrid591000 4 жыл бұрын

I get phantom rectum on and off ive had my ostomy long time and rectum removed. Its a weird feeling of wanting the bathroom When you know you can’t pass anything. When im worried or stressed i seem to get it also xx💕

@melissahuddle6064 3 жыл бұрын

My bowels ruptured in july. super painful. The doc says reversal should be doable..so jan I get a colonoscpy and if all is well back to.getting the pipes hooked back up at the back door.

@jeffwombold9167 4 жыл бұрын

I have to admit I had that feeling every now and then, it was somewhat uncomfortable sometimes but it didn't last but a few minutes. I didn't have mine removed, but it was disconnected, it would be almost like a spasm occasionally. It actually hurt a couple times. (Not quite the same thing as yours, but related I think). I did have to occasionally clean it out though, but that didn't really coincide with the spasms. I think it's got something to do with the circulation and nerves reestablishing themselves through new channels, at least that would be my thought. Thanks again. 😊

@ashleym2579 3 жыл бұрын

Girllllll same here. Lol! It’s so crazy. I had an ileostomy twice it’s taken down now. But along with having that urge to got to the bathroom mucus always came out. Like a bunch. Lol. No one tells you these kind of thing before your surgery. I’m glad you’re helping others understand what we go through with all of this. I’ve watched you for so long, since almost the beginning. You’re the reason I made a KZfaq channel to talk about my situation and journey too.💜

@DoubleDogsBFF 3 жыл бұрын

Did you have to do a enema or anything to clean the mucus out and if so how often?

@tamijansen8025 4 жыл бұрын

What video do they talk about the plans for the barn? I haven't watched in a long time.. I didn't get notifications 😕 so I am kind of working backwards... ugh.

@LetsTalkIBD 4 жыл бұрын

We are renting it out as a wedding venue after our wedding :)

@liannebenn2097 3 жыл бұрын

What is easier to live with, an ileostomy or a colostomy assuming there is a choice?

@denisefraustro8630 4 жыл бұрын

I saw you on The Frey Life Vlog today.

@phoenixtears25 4 жыл бұрын

Wait what’s being built? It’s HUUUGE! So exciting!

@bluevalkyrie8981 3 жыл бұрын

I have lived with a proctocolectomy for almost 7 years now. I still have problems with phantom rectum and nerve issues. I take Lyrica to deal with it. The pain was severe enough at times that I would feel the need to hang out in the bathroom to bear down on the toilet. It had happened often enough that it would feel like I was in the midst of one of my flare moments. I won’t say that Lyrica has been perfect for all of my phantom and nerve pain, but I will say it has made life considerably better.

@paulp6804 4 жыл бұрын

Phantom rectum I used to get it really bad in the early days 12years ago only way I could ease it was to sit on the toilet and it would go away, it's extremely rare I get the feeling anymore if at all and it's only for a second or two. It's a bit like when you stop smoking years later you can still fancy a cigarette, although the process has been taken away the brain must need a lot longer to reset.

@feliciabourque 4 жыл бұрын

I still have my rectum and colon and have definitely experienced the mucus that comes out.

@LetsTalkIBD 4 жыл бұрын

It's no fun!

@carpediem2445 4 жыл бұрын

I am experiencing that! It is worrisome.😞

@DavidMcgee957 4 жыл бұрын

I had that for a little and then I don’t thing about it since my butt has been gone

@meljohnunwin7568 4 жыл бұрын

Hi Maggie - I live in Australia and have been following you on your You Tube channel since my Ileostomy surgery in December last year. I Just want to say a huge thank you for sharing your stories. I follow a couple people on You Tube - and between yourself and the gorgeous Amber from Ostomy Diaries, i really felt informed and confident going into surgery. So thank you from the bottom of my heart! You really made such a difference! I find it interesting about your comment on mucus and how your surgeon didn’t tell you about it. Mine didn’t either, no one did. It was only by listening to videos like yours and being member of a Facebook ileostomy support group that it was mentioned - I have terrible trouble passing my mucus as my colon has no muscle movement at all, so it can’t push it along. I am due to have a total colectomy done in September. It is so common with people with an ileostomy to get mucus, and it causes me significant pain, I can’t believe that is not something the surgeon or stomal therapy nurses advise you about. Anyway - thanks again to you and Zac for sharing your story and your beautiful barn!! Stay safe. Mel

@kimberleyslauenwhite9004 2 жыл бұрын

It's been about 14 years since my surgery and still occasionally get this. No colon and no rectum but still get feeling of having to "go".

@SQUEAKS818 4 жыл бұрын

Hi Maggie and Zak😀😀😀😀.....The barn is coming along beautifully 😀😀😀😀😀😀😀.....your yard is AMAZING 😀😀😀😀😀.....Hi little Chickens😀😀😀😀😀😀

@paulmccorry3974 4 жыл бұрын

Another thing I forgot to mention are used to also have discharge from my rectum every couple of months but after about three years after my surgery when I figured out on how to have the right diet eating the right foods and supplements my discharge stopped

@moiraivory250 4 жыл бұрын

Hi what foods etc did you eat or stop to help with the discharge. Interested to know.

@ln5423 4 жыл бұрын

You guys were meant for each other.

@florentcastelli 4 жыл бұрын

Had an ileostomy for a year a while back and it was very rare, maybe went to the bathroom 2 or 3 times total. I have another one now and this is definitely more pronounced now and I've been 3 times to the bathroom for some mucus since the surgery 3 weeks ago. It definitely feels weird but I knew to expect it!

@Gimo76 2 жыл бұрын

Oh my I farted yesterday and I have a colostomy. I have a part colon and my rectum stump gets a really hard urge a lot and it drives me crazy. Will it have to be removed someday. Sorry so many questions in one day. Love love love your chickens.

@asmrmaryem7004 4 жыл бұрын

GOD BLESS YOU

@nancywilliams6777 4 жыл бұрын

They are called Sweet William, aka Dianthus.

@richardstafford4170 Жыл бұрын

I have Ulcerative colitis and pass lots of mucus at the moment ,I am waiting for a pan proctocolectomy which I will hopefully get it done in 3weeks ( had one operation cancelled)

@brandiguarino1778 4 ай бұрын

My husband had a spinal cord injury due to Cauda Equina. He got an ostomy to help with abdominal pain and so he could stop doing 12 enemas a day. We have since discovered he has phantom rectum syndrome that is VERY painful. Does anyone have experience or ideas for successful treatment?

@sacoolman 4 жыл бұрын

Yeh,I get the same sensation.I had a Radical Cystectomy and have a Urostomy.I have a bag, occaisionally I get the feeling of going for a pee...Strange!

@littlemrpinkness295 4 жыл бұрын

That barn is turning into a showplace!

@catherinestevenson183 3 жыл бұрын

Thank you. I always feel fore armed is fore warned. Colorectal cancer. Tomorrow is my surgery, part of the colon, the rectum and anus removed. You have been very helpful. Stay well

@charlottesmom 3 жыл бұрын

Hope you are healing up rapidly.

@maryalice8507 4 жыл бұрын

Do you have a storm cellar ?

@leebernardo1000 5 ай бұрын

I have an ileostomy - about 47 years ago. I got those feelings for years and eventually they stopped. I was told it was my intestins getting settled to their new space and as gas bubbles move through it would create that feeling. It took years but it does go away/

@kayw 4 жыл бұрын

I have big problems with mucus I can't pass it and it's too painful xx

@sarahmorley1031 4 жыл бұрын

Im the same Kay. I always see people say that they have to rush to go to get rid of the mucus. But mine just builds up and causes so much pain in my stomach and bottom. I'm at my wits end with it. Thk you for sharing your experience, I feel less alone now xxx

@billwhite4414 3 жыл бұрын

Had a proctocolectomy 14 years ago. After the pain left, I actually have never had a phantom feeling. I went straight back to work so maybe that helped me.

@wilhelmtaylor9863 2 жыл бұрын

I'd like to share my recent experience and some good news. I had a total colectomy in '08, ileum connected to rectum. This worked for a long time until a year ago when I became incontinent. (I'm 73). I sought an ileostomy specialist and the surgery was performed a 3 weeks ago. In the process I lost my 73 yo rectum and my anus which has been riddled with fistulas over the years. The stitches came out 4 days ago. Here's the "good" part: I wad up a bunch of TP and lay in at the back of the toilet seat. This allows me to sit WAY back to empty my bag and is quite convenient. Obviously there's no output from my old friend the anus. This is something I can do in any establishment and it's quick. I carry a satchel (aka purse) for extra supplies, ESPECIALLY hand sanitizer - really important since few commercial restrooms have this. fyi: I use a velcro opening Hollister 2 piece which, though I have only a little experience, seems to last a few days. Good luck all.

@jasonadams6821 4 жыл бұрын

How did you guys meet

@l9685 3 жыл бұрын

I have never had Phantom Rectum but I have gone through similar I do know what it is like to lose something that has been a part of me. I have what I called Phantom Periods or Phantom period pains because I had a hysterectomy at 33. I don't have a uterus.

@jeremynemily 3 жыл бұрын

I was told that much of the cramping you experience during your period is actually the bowel. I have the same issue.

@eunchaneunchan 2 жыл бұрын

Hi, I just had mine 2 months ago...and I experienced the same thing like you.

@rachelfiddler4886 4 жыл бұрын

I get phantom rectum too! (total proctocolectomy with Barbie butt) It’s sooo weird!!! I think some of the muscles still remain and they get cramps or spasms every once in a while, at least that’s my theory

@miriambarnett2782 4 жыл бұрын

I have had a colostomy for about 3 1/2 years now. I had rectal cancer. I get phantom rectum urges too. I do have a Barbie butt. Sometimes it is really annoying too. I’m glad to find out that I’m not the only one.

@chrisfalkner9695 3 жыл бұрын

Yes....sweet williams 💙

@joecalobeer6396 3 жыл бұрын

I remember my Grandmother having some bowel removed with a colostomy. The phantom rectum affected her by what she called “Rabbit pellets!” I didn’t understand it at the time, but do now! I’m sorry you have to deal with this malady!😕

@brendaleegraham1949 2 жыл бұрын

I've had my colostomy for over 10 years now. Phantom pains are real . Unfortunately they still strike every now and then

@carpediem2445 4 жыл бұрын

I just recently stumbled across your channel hoping to find some relief. I have Crohn's disease and was diagnosed years ago. I have not had any surgeries for it as of yet. They have scheduled me but it fell through all 4 times. I have been hospitalized 6 times in the last 8 months. I am TERRIFIED to go to the ER right now. My stomach is so distended I am bigger then when I was 9 months pregnant. My body is swelled up. My legs are so bad they have bruises all over them and I can't walk without a cane. No BM's without having to use an enema. Which I've been using daily. No vomiting yet but I do have zofran just in case. I take 40mg prednisone daily and gave for years. I had a partial obstruction and that's why they kept admitting me. Is there ANYTHING I can do to help move this obstruction or the flare up of Crohn's? Any home remedies?? My biggest fear is the ND tube. I've had so many but last time they chipped my tooth and made my nose bleed. Still don't know how they chipped my tooth but it fell out when they were shoving the tube in. I feel awful, like I'm dying. Any ideas is appreciated!

@karenkramer83 3 жыл бұрын

I have that too.

@janiceannburn2678 4 жыл бұрын

I watch you all the way from South Africa.🇿🇦 I notice there are no masks or social distancing. Are you guys over the C or did you never have it. All you guys.

@eevee8861 3 жыл бұрын

I've actually been worried because I was told I would get discharge (mucus, old blood from surgery) and I haven't yet, 3 weeks post op! I've felt the need to go a couple of times and fresh blood has come out - they think I might have a small tear or irritation, but best to leave it alone to heal unless it becomes a problem. Fingers crossed it clears up!

@eevee8861 3 жыл бұрын

(I have ileostomy and only large bowel removed)

@catluva74 4 жыл бұрын

Has anyone had a flair that put them in the hospital that wasn't really painful?

@margiemartin8407 4 жыл бұрын

Wow, Maggie, the barn looks awesome.

@tammiestong8332 4 жыл бұрын

Yes phantom pain IS REAL!!!

@CC-blue 4 жыл бұрын

Your body is still remembering your rectum. You may not have a physical rectum but you still have an energetic one.

@victoriatucker6271 4 жыл бұрын

If you have a proctocollectony can you butt split open at the would? And would you say that you doctor failed to inform you about the phantom pains. Is that a failure of informed consent?

@LetsTalkIBD 4 жыл бұрын

It can and mine did a bit, xurrently it has opened. And no, the doctor explains there may be complications but they can't possibly explain everything that may happen.

@tarrahschuessler3297 4 жыл бұрын

Awaiting Barbie Butt but have severe Pyoderma Gangrenosum on my ankle 😔 have the mucous poops every morning and night!!! Was never warned about this and was literally freaking out the first time it happened lol!! I am not going to miss the ol mucous poo!!!

@researchplease 4 жыл бұрын

Phantom urges are the worse!

@ruthbrett7320 4 жыл бұрын

WoW You guys it’s looking good an so exciting the view from the barn is amazing 😉 😘💋

@ILOVEMEW10 4 жыл бұрын

Awww. Beautiful flowers,beautiful girlxx

@courtneygiles-irish102 4 жыл бұрын

This is not related to anything in the video but we have the same phone case! Haha! Love your videos

@kathleenbodnar2398 4 жыл бұрын

How can I email you?

@LetsTalkIBD 4 жыл бұрын

Letstalkibd@outlook.com - I heard you emailed my twin 🤣

@kathleenbodnar2398 4 жыл бұрын

LetsTalkIBD haha yes! I thought it was you !

@ldcemw 4 жыл бұрын

This is a silly question. At the beginning did you have to tell Zack that his shirt was inside out or did he discover it? I have 4 boys and a husband they all come down with clothes inside out! Lol

@LetsTalkIBD 4 жыл бұрын

He actually discovered it on his own! Hehe

@catluva74 4 жыл бұрын

Have they ever put on two different shoes but didn't realize it until they were out?

@nancystewart2063 4 жыл бұрын

I'm a new subscriber and recently found your videos. As someone who raises chickens, I thought I would recommend that you get a chicken waterer that they can't tip over. There are several different types, but they sure help keeping water to the chicks and chickens. Currently I have around 50 of them. If you plan on planting around the coop, you will want to clip the chickens wings. It's best to catch them while they are roosting at night, hold one upside down and pull out one wing from the body and clip the feathers kinda halfway from the bottom of the wing to the top depending on how long the feathers are. You only do it on one side so that if they try to fly over the fence they fly unevenly and give up. Gardens and chickens sometimes don't go well together, they will eat your flowers and veggies. So you might think of putting a vegetable garden outside your back door. Your place is so pretty and green. And I love that barn.

@LetsTalkIBD 4 жыл бұрын

Thanks for the tips on chickens! We kind of have been winging it (no pun intended) so this is helpful!!

@mandybarnett3647 2 жыл бұрын

The flowers are Sweet William and are bi annual!

@Itsme_jenna 3 жыл бұрын

Hiiii

@kimberlykitzmiller5042 4 жыл бұрын

I hate to be critical, but I don't care for it when people film meetings with 3rd parties where you can hear no one and have no idea what's going on. Other than that, love the vids.