DIFFICULT Rectum Removal Pain | Mentally & Physically | Let's Talk IBD
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- čas přidán 25. 09. 2023
- I have talked a bit about my proctocolectomy surgery before, but wanted to share how I approached this particular surgery in terms of pain. This is NOT an easy surgery, but with a bit of mental preparation and some post-op tools, I was able to get through it.
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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. ♥ #ostomy #ibd #chronicillness
My Barbie Butt Surgery saved my life, but I developed an abscess after the surgery and they had to fix it, but been two years now, doing great.
Removing my rectum saved my life after being diagnosed with stage 4 colorectal cancer. 2019 at age 55. I went home from the hospital and was so scared. The wound, where they sewed me up looked so vulnerable, and indeed, I was simply putting a hanger in the closet and the wound opened up right then and there. Things were beginning to come out. My husband raced me to the hospital and they sewed it back up again. It was the prior radiation I had that weakened the skin. Me, 3 years later I have a humongous HERNIA on my butt that is painful, uncomfortable to sit on. I use a waffle cone everywhere we go. My surgeon won’t do the surgery to address the hernia until I am cancer free. Just finished a round of radiation (Cyberknife) on a lung nodule. I’m always happy to watch your videos, Maggie. They encourage me. Hope and pray the very best for you.❤❤❤❤
You have been through a lot. My sympathies and prayers that your health will improve. 🙏
Wow 😢 I could not imagine all that you’ve been through . Hoping you will be cancer free as soon as possible 🙏🏼🤍.
💙💙💙
Thanks for sharing your experiences, and I wish you the best!~
I pray the very best goes for 👉 YOU !!!
❤️💙💜💛💚🧡🩷🩵🩶🤍❤️🩹
My sister struggled with Crohn’s disease for 25+ years and refused interventions. Finally became malnourished and had feeding tube out in. After a few weeks asked for removal. Surgeon said then hospice will be called as you are malnourished. She said fine. Then after few more weeks took her life at 64 as waited till birthday. So sad that she wouldn’t accept help mentally to deal with her disease. She lived in denial and ultimately lost her battle to her mental status. Such a waste of a life. You are doing such a wonderful service to all people who go through these diseases and the grace with what you teach and kindness brings the info to the many who need it as well as their family members. Thanks for being such a great human ❤
I am so sorry about your sister. I can’t even imagine the pain she was in and the pain you and everyone who loved her are going through now. Thank you for sharing her story because maybe someone who reads your comment today or 4 years from now, could save their life. 💐
I’m sorry about your Sister ☹️. I lost a friend to Crohn’s disease in 2009 because she didn’t want the bag. There is still such a stigma related to having an ostomy that is mind boggling. All experiences are not rainbows and butterflies, but attitude is 90% of it. I wish that my friend had accepted help as well.
I understand your pain. My mother had Crohn's disease too refused a stoma surgery. She was put in steroids but became so distressed with the weight gain and moon face that she stopped that too. So basically, she was having constant bloody diarrhea and cramping, etc. She suffered. I wish Maggie or someone like her could have had a talk with her but this happened over 20 years ago. Treatments were different then.
@@helengarrett6378 wish Maggie could have talked to them! Blessings
@@ShopStylebyme thank you. Crohn’s is a physical and mental disease if you let it be
Hey there Maggie 😊. YOU and you alone were the person who helped me as I had a month to prepare for surgery. I had no idea what to expect and was more afraid of the Barbie butt surgery than the ostomy. (I was ready for that). I watched your videos religiously and took your advice about the waffle pillow and walking. My surgery was on 1-6-2021. As I’ve mentioned in another thread, I ended up in the hospital for 2 months following surgery. I went through rehab, Etc. I mentally prepared for the pain, but was fortunate to have very little due to the happy meds shot through the IV 5 minutes before I needed to be handled for anything butt related. I also found that the walker helped tremendously when getting up and needing to walk. I also had regular stitches that were removed upon discharge. Again the happy meds made it pain free. These days Oklastoma (my stoma’s name) and I are doing fine. When asked how having no hole feel, the only way for me to describe the feeling is that it feels as if a hole should be there but isn’t 😵💫. What I do to eliminate the feeling is to stuff gauze in the spot each day. I remove it at bedtime. I also found that I can do any butt related activity except riding a bicycle. Sitting on a bicycle seat felt very awkward and hurt. I didn’t like the feeling. I also noticed that after I healed the shape of the lower part of my butt changed. And finally, I have found that once any new medical person who reads my chart and learn about my surgery, they FIND a way to get to see it😛. At first it made me feel awkward and uncomfortable, but now I just laugh and say have at it and tell me what it looks like because I have yet to see it 🤔. They all say the same….”It looks like a butt with no hole”🤣. A month ago I was at my primary Doctor and he had a Resident there with him. After she learned about my ostomy and Barbie butt, she had quite a few great questions to ask me. I truly enjoyed educating her because she had some really great questions that I had never thought about. Thanks for reading this long response and congratulations to you Maggie ❤. You were a great choice for your new endeavor. Tell us all about the conference 😊.
Hi Maggie I like you have had Crohn,s since I was a child. I lost my large bowel at 19. I had a Colectomy which was fairly new then, so no bag. I struggled on with life had lots more ops. Until 12 years ago when I got cancer in the anus. They removed everything and made a flap, I look at the scars and I still can't work out how they did it. I can't tell you how uncomfortable it was. I couldn't sit down comfortably for a couple of years,I took my cushion with me everywhere. Like you I have a good man by side and I couldn't manage without him. I,m 76 now and still enjoying life. My bag is my little friend always by my side. Sometimes we fall out, but not for long. Keep up the good work and don't give into anything. Love from the UK ❤
I don't have Crohn's but I did have a very severe episiotomy with my 1st baby. My OB said with how my son was stuck in the birth canal, my episiotomy was the longest cut he had to perform in 30 years of delivering babies. Yes, that hurt badly. That area hurt no matter how I moved for a long time. Peeing was an excruciating torture, I cried every time I used the bathroom. That recovery was far worse than the c-sections I had later on. Your nails look so pretty.
My episiotomy was c ut both ways up and down and caused a vagorectal fistula. Worst and most embarrassing thing. I had fecal matter expelliing vaginally
Same here.
Just wondering....why was your baby stuck? Did you try changing positions, such as squatting, hands and knees?
@@ellekay1721 Tried everything, but I'm very small in build. He was my first and biggest baby. He was completely stuck and too far down the birth canal to push him back for a c-section so he was born with major episiotomy and the vacuum extractor, which was new at the time. Never had another episiotomy though and had 5 more babies, including a set of twins.
@@randimayes560 Ugh, that sounds like a nightmare.
I cannot tell you how much your videos help people. You’re a strong, caring, brave woman to go through all this, keep your humor, & carry on.
Many of the comments are a testimony to your ability to care by sharing. Good luck & heal quickly.
My grandmother had uterine cancer back in the late 60’s. She had many adhesions, bowel & bladder resection, TAH, went from 98 lbs to 69 lbs. Fortunately for that time, she had a “tampon” of radioactive material placed in her vagina for a week. It killed the cancer. She survived to her 90’s(from her late 30’s) cancer free. She had no drains, regular sutures (very long scar) , but she sneezed & half the suture line opened. A large hole that we filled with peroxide twice a day, packed & covered. The gave credit to her courage, determination, & I got lots more livin’ to do attitude, & most of all using radiation BEFORE surgery.
I have IBS/C. Medication helps as does diet. The constapation pain is horrible.
Again you all are brave & I pray will have the long adventurous lives ahead.
It's been 3 1/2yrs since my surgery. You are right it was painful! I have Ehlers Danlos Syndrome which is a connective tissue disorder so my stitches were basically wire which were in for 4 weeks. Also got an abscess and had to have a drain put in my "cheek" . All in all the best surgery I ever had. I had rectal cancer and it did save my life 😊
Mary I've had the same, I found your message helpful. Can I ask if you ever feel any kind of nerve pain, or any sensation there at all? Just. recently a few months on I get what I'd call an occassional stabbing pain sometimes when I sit.
@@MyCovertNarcissism yes I still get a lot of pain and numbness but I had radiation for the cancer which caused own issues. I had second degree burns in that entire area.
Thank you Mary I really appreciate it. I was never sure if I should be feeling absolutely nothing, or something, and i definitely have some feeling still there. Wish you all the best in your journey, thanks for taking time out to respond.@@maryallabaugh598
19:26 I had stage 3 rectal cancer. I had an APR, tailbone removed, full hysterectomy, flap surgery and Barbie butt all at once. I was hospitalized for 5 days but couldn’t sit on my behind for 8 weeks. I’m thankful to be alive but even though it’s been 2 1/2 years there is always some pain down there. Maybe it’s phantom pain 🤷🏻♀️ Being prepared is key. My surgeon told me he had never had a patient use as few pain meds as me. You can do it!! Thank you, Maggie, for telling your story. ❤
I had an APR with proctectomy, due to cancer in May 2023. Im 56. Had to get up the next day and just stand or sit. The pain was ok as on morphine for several days then thy took the drip away. WOW it hurt. I developed sepsis 2 week later and thy re opened the wound, this is taking ages to heal. Sitting i still uncomfortable and when flying on a plane as i have jut done for 4 hours I wish I had a pillow then. I hope mine heals soon as it is still healing a bit from the second wound that is taking its time to heal. I too woke up with a very sore right arm, apparently I was laid on this when they knocked me out. The arterial line was so painful I asked the anestatist to do the one on the other hand when I was asleep. Hope all you guys out there heal fast. Maggie is an inspiration to us all.
You’re not kidding on how that hurts. Luckily after my permanent ileostomy surgery when I finally got the drains out post op at follow up I bled good on the floor of the surgeon’s exam room in retaliation for the grief he gave me trying to get the surgery and the hard recovery.
Maggie, I just wanted to say your an absolute inspiration, to people that are living with a disease of the immune system. The way you normalise the conditions and treatments really helps to break down misunderstanding and stigma. Thank you ❤
I had ileostomy surgery 44 years ago, and after about a week of demerol and about another week or two of advil, I don't remember any pain. I don't mean to contradict what you are saying, but I want to tell the people who are looking forward to this surgery, that the pain is different for different people, and will not be unbearable.
Don't put off or reject surgery from fear of pain. You can get through it and the alternative, ( for me, imminent death) is not acceptable.
My life before surgery was Hell. My surgery was about the best thing that has happened to me.
I had a total colectomy for UC in 1978, around your time. But I was very sick, the whole operation was emergency basis "get him on and off the table ASAP" like I was in the ICU for 9 days and needed 10 units of whole blood, that kind of stuff, and they left my rectum in because they couldn't afford the surgical time to do it. Then since I was no longer dying I decided to postpone the proctectomy under after I graduated from college in 1981. Sometimes people have said to you "you must be very brave" and I always answer that well, my other choice was immediate death, so I picked what I thought was the better option!
I mention all this because I read, even back then, was that people who get the surgery because they are that sick, as we were, handle the surgery psychologically than people who, for instance, need it because of a car crash. I think that that must be indeed a horrible experience.
I'm scared as permanently in wheelchair, don't know if I will go ahead now. I can't stand etc, paraplegic
So thankful for your sharing. I had my rectum and bowel removed as part of a much bigger surgery. I had a hemipelvectomy which is essentially half my pelvis (the entire left side) was removed. As a result I had major reconstruction of the pelvic floor including the removal of the bladder, bowel and rectum. I think since I had so much going on the pain of just the rectum removal wasn’t even on my mind. Luckily I had a very good plastic surgeon that put me back together (less half the butt of course) and I’ve had very little issues.
I had my proctocolectomy because of crohn's over 43 years ago, after surgery seemed to be healing well but after a few days I could not sit not even on a rubber ring so basically kneeling all the time , after a few days of this my surgeon (in his suit on his way out to a dinner for surgeons) decided to undo a few stitches to see what was wrong! Well what a relieve but not for my surgeon he was covered with blood! apparently i had been bleeding and had built up quite a bit of pressure which made it spurt out.. Me it was great relive but the fallout was months and months in hospital as the size of the wound was big and had to heal inside to out so it was packed everyday for weeks and weeks, my biggest shock was when i whent to scratch my bum i lost my hand in the wound it was so big
😂
Lord that sounds just unimaginable 😮
Thanks, but that's life and better than pushing up daisy's, managed a fairly decent life since but as with most things wish things had been different, I suppose on the good side my scaring isn't too bad and so far I've lasted 43 years longer than expected.@@kathyinwonderlandl.a.8934
As a nurse I am both horrified and fascinated. I'm so sorry you had to go through that but I hope you are far past any complications now.
Thanks to you for your courageous videos. You have no idea how many people you’ve helped. After my cancer treatment, my perineal incision refused to close. It took 2 1/2 years in total! Radiation complicated healing a very difficult wound. What helped me eventually was hyperbaric oxygen therapy - 6 weeks of daily “dives” to force oxygen into the tissues surrounding the wound. I can’t recommend this highly enough! I don’t think it ever would have closed without it.
I had a resection and ileostomy 10 weeks ago lost 80cms of small bowel due to strictures from crohns, i didnt want a bag either but honestly its not as bad as you first think im just greatful to get rid of the pain from blockages.
Maggie is the best shes been through so much bless her 💜 xxx
Had severe UC since 2005, illeostomy colonectomy surgery 2009, then proctocolectomy surgery in 2021, and finally a Parastoma hernia surgery in 2022. Wish I would have had the finals two surgeries sooner. Your not kidding about the proctocolectomy … sure was painful, but it so much your mind set. Keep smiling, it will get better. I was in hospital 5 nights but had a wonderful support system of drs and nurses. Oh and the ken (barbie) butt is really a cool thing when you don’t have the prior pain anymore. Thank you for sharing your stories and experiences! Thank you!
😅Thank you for sharing your story and providing insight that only someone who had been there could speak about. Next month I am having a large abdominal surgery. The surgeon said that the only reason that she isn’t removing the rectum and anus and will be leaving a rectal stump is due to all of the procedures that are already scheduled. It will be a 7-9 hour procedure with four surgeons and I will be hospitalized for about 5 days. The abdominal surgery that I need is mainly due to my Crohn’s disease. It will remove the section of my large intestine that has created a one way tunnel (fistula) to my bladder and they will try to leave as much of the lower bowel (large intestine) as possible while removing the damaged sections. They will resection the bowel, fix the hole in the bladder from the fistula, do a complete hysterectomy due to extensive adhesions, remove my gallbladder (I have some gallstones and they are taking it out to avoid another surgery at a later date), move the stoma for my ileostomy, create a new stoma (placement and whether it will be a colostomy or another ileostomy will be determined during surgery), close off original ostomy location, abdominal wall reconstruction and repair the large hernia that was caused by not being able to wear any kind of hernia binder due to ulcers caused by a secondary autoimmune disease (Parastomal Pyoderma Gangrenosum). Recovery will be a minimum of 4-6 weeks. I will have a permanent ostomy instead of the “temporary” ileostomy that I have had for two years. I am very nervous about the extensive surgery (asI have had very little experience with it) and the pain, but know that this is the only way to remove the very painful fistula. I have a hug pillow and waffle pillow in my hospital bag. Thank you!
🙏🏽🙏🏽🙏🏽 for a successful surgery & speedy ❤️🩹 recovery!
May I suggest speaking to your surgeon(s) ahead of time about staying in the hospital an extra day. The insurance companies stipulate how many days they will cover for specific procedures, but your surgery will be several procedures and you may not be ready to go home after 5 days. Unless you ask, the surgeon will just go along with what the insurance companies want, but surgeons can justify extra days. Not having adequate care at home, and/or uncertainty about the effects of the surgery on your autoimmune disease, can both be considerations, but you have to ask. Best of luck to you!
Good luck to you! I wanted you to know you are not alone with the fistula thing. I ended up with 4 fistulas to my bladder-- I didn't even know that was possible. What a shock to get that news, eh? Anyway my surgery took 14 hours for the resection,, bladder repair etc. And I had a temporary ileostomy (Stanley) who wasn't too bad once I got used to him. Anyway two things for you to look out for 1) they put a temporary stent in my bladder which got infected - so if you have symptoms of that let them know and 2) I ended up a year later after the reversal in ER with a small bowel obstruction caused by scar tissue of the reversal. Not everyone gets this, but you must go in immediately if you feel nauseous and pain in abdomen. (I always say I internalized Stanley and he didn't like it.!) My doc said it could happen again but so far, a year later, doing well. Good luck my fellow sufferer.
I forgot to mention that I had adhesions all over the place. Again, just so you know you are not alone😊
Oh my goodness I can’t imagine having to go through all that. You must have to be so brave. How are you?
When I had my bowel removed the only thing that kept me sane was thinking "this is getting better pain, it'll ease". I was twenty and at one point my family were told that if I was still alive in twenty minutes they'd operate. I had a baby a few months before. I'm glad I didn't know that things had gone down hill so quickly and were so incredibly dire. I wish I'd known about the abdomen pillow. Hugs. 😘
I remember the removal video i cried with you
I just want to say thank you for all your videos, all your honesty and frankness about our disease of Crohn’s and IBD‘s etc. And all that we have to go through. I’ve had 40 surgeries of which about 32 of them were for crohns, and I was in a really really tough spot with two setons and an ostomy that was temporary and I just was miserable because I was going fecal matter out of every hole in my body, because one Seaton was in my rectum and one was in my vagina and I thought it can’t be this way I’m too young for this, I came across your channel a while back, but then watched a video about the surgery and you gave me the courage to do it, and have my life back and take my life back. There are still some struggles with different things but nothing like before. I am doing things now that I haven’t done in years because I was sick all the time with no control of my functions. I just wanna say thank you for doing these videos and don’t ever stop being real and honest and open because that’s what people need to know when they’re going into this stuff. It’s so important. For me a lawn chair recliner was my best friend during this healing process because I did not want to sit at all so I laid in a recliner on my deck with tons of padding during the day and blankets, and I would roll my way out down to the floor because it was a chair that was close to the ground and get up slowly. It took me quite a while to heal and yeah, the stitches had to come out about a few weeks after because they wanted to make sure it was totally shut and those stitches do hurt and yes you are not exaggerating them taking them out I felt like they were re-cutting me all over again because they snip them out and sometimes they get close to your skin and it just Hurts I guess I don’t know. But thank you thank you thank you for your channel. I watch you every time a new video pops up and sometimes I comment. God bless you honey thank you for all that you do for all of us out here.
The lawn chair was a brilliant idea! May your health continue to improve.
I am a wheelchair access vehicle taxi driver in Chicago. so I am always sitting. when I got my colostomy and lost my rectum, anus and much of my colon I was in pain not because of the suture but because I lost so much cushion covering my tailbone. in my case the waffle cushion worked somewhat in the taxi but it did no good in my chair at home or in recovery at the hospital. My sister bought me a donut cushion and that worked like a miracle.
I have been watching and rewatching your videos regarding proctocollectomy and issues regarding the pelvic floor. that got me into doing different searches on CZcams. so I would like to thank you for exposing me to other new ideas.
Hi I read your comment with interest as I permanently sit!
I'm weighing up this surgery and totally scared of how I will manage the pain. Because im a paraplegic, I sit all day in wheelchair. . so very scared.
How long did the pain last till you could sit comfortably?
I've had my Ileostomy since December.. I had to get my rectum removed as well, I had uncontrollably bleeding though and rushed to a bigger hospital.. I had 2 drain tubes and that was just an uncomfortable feeling. I was laid up in the hospital for almost 3 months because I went septic by having holes in my colon which led me to getting it removed because I also had a really bad bowel obstruction and it tore my colon up to no repair... I've been watching your videos for a few months now I discovered your channel when I got out of the hospital and you've helped me so much. ❤️
I was in for 2 months after my colon decided to give up the ghost during removal. 2 days later, I went from feeling great to sepsis after my white blood count soared😬. Once stabilized, Iwent back to surgery for the drain. Then the dreaded NG tube and finally a feeding tube. I was never so happy once everything was removed.
I had APR surgery with a colostomy (open surgery) in April - there was no way I could walk the next day. A few days after surgery I managed to stand up lol and then baby steps from there.
You are so generous with your medical experiences. Thank you for being a safe place for so many. Congrats on 100k! 🎉❤
Takes the saying a pain in the butt to another level 😅
Almost 10yrs ago colorectal cancer left me with a permanent colostomy, rectum removed, and anus sewn shut. All of which I wasn’t expecting and found it hard news to take. But thanks to you and CZcamsrs like you, I was able to educate myself and make it through, particularly with my ostomy. Like you say, your mental attitude and preparedness is everything. And humor being a big part of that. Certainly its not easy, but in time it all just becomes your new normal and life thankfully goes on. I’m sorry to find that rectum removal has been the latest challenge you’ve had to face. But given everything you’ve already been through, I’m sure you toughed it out. Many thanks for the content you create as you continue to help fight fear with education. I wish you all the best!
All the best to you, dear Maggie... you're a very special human being......
I'm 4 weeks post op. It's a slow process, but worth it. ❤
4:14 I laugh about my rectum removal surgery so much I have turned it into my whole stand up routine!
I start by whipping out a tarp without explaining why and by the end I try and convince the audience to get at least a colostomy bag as it’s like having a cell phone and no longer having too be connected with a sewer line.
I then turn it politically claiming I am both fiscally conservatives and liberal environmentalist. I say getting a colostomy will save water and taxes on sewer bills!
I have been lucky having the Barbie movie come out as it’s perfect for explaining Barbie butts. I say I don’t brag and say it looks like a Barbie, but mine looks more like a Star Wars Action Figure and not a cool one like Luke Skywalker or Han Solo, but more like a Chewbacca that’s been chewed by a shitzu dog.
So far it’s been a success with laughs, which has helped me deal with the physiological effects having taken a toll on me before I started stand up at least.
I feel liberated and not feeling like I have to even hide my bag like before.
PeaceOuTy
TAMMpON👊
Jason Thompson
Hello Tampon / Barbie, Excellent news, my granddaughter Víolin is very excited since Lady Jane Norman has been investing our excess cash, after six weeks we had earned 45,000,000 and when miss Violet Todd telephoned to advise my daughter about her windfall she had the worst most violent diarrhoea event, thankfully we have a cordless telephone so my daughter could talk to the investment lady whilst this was occurring. Thanks be to miss Amanda de Chung from Botswana.
It's not funny. The fact that you can see the humor in the whole thing makes other people comfortable. You are awesome for letting others understand your reality. This helps all of us to be more comapssionate to our fellow neighbor.
I had my surgery a month ago. I did not lose my whole rectum but much of it due to a rare case of rectal diverticulitis with a vaginal rectal fistula. My incision became infected and so dealt with numerous antibiotics. I was lucky not to have cancer. I am lucky but inches away from the barbie butt happening. Today the surgeon drained 3 places and so am sitting here tonight with tons of packing which I remove in 2 days. Learning to deal with the ostomy and getting things back on track.
It's amazing how things can be great one moment and then out of the blue things come in that can really rock ones world.
I have Crohns and Crohns Colitis. The Crohns started in 2011. I’ve had no pain or any symptoms of Crohns except the initial infection in 2011. My colonoscopies were all clear of any signs of Crohns. Then, the end of 2019, I started having diarrhea (no blood) and my urologist threw the kitchen sink at me to stop the diarrhea. In early February of 2020, it subsided and I was getting bulky stools but going to poop 8-12 a day. Then in late February of 2020, they found a rectocele and we’re going to install a pessary in March, 2020. Then they said I has Crohns Colitis. Then, Covid hit. Nothing was done. I did have a colonoscopy in the fall of 2020 but nothing showed up. Since then, after I poop for the first time of the day, it feels like I’ve got a ping pong ball between my cheeks. Swelling of course, but they’ve run every test. I’ve now had three 2nd opinions and they all say take out the large intestine and give me the Barbie butt like you. Can I take the pain of all that surgery at one time? My bum hurts really bad everyday. How can that much surgery be doable?
I had a proctocolectomy in July but they left my anus intact. So I had no incision down there, everything was internal so I had nothing to heal externally and I still have all my muscles. Which has been so hard to explain to other people who have had proctocolectomy. I technically have a Barbie butt but it was a very different surgery than typical I am finding. Like I didn't have the healing issues and I had no sitting restrictions. But regardless I can 100% say it was the most painful experience of my life. Nobody prepared me because I handled my original ostomy surgery with flying colors. They said this time would be similar. But this go around I was in agony. Surgery took almost 8 hours and I got to my room at 9pm. After projectile vomiting in post op and almost passing out from the pain. Most pain I have experienced in my life and I have dislocated every joint in my body and had a small bowel obstruction twice. That first night was hell. I was so thankful to have my partner with me because I was shaking and crying throughout the night on four narcotics. No pain in my bottom but all in my abdomen. Similar to you I had severe elbow pain after waking. I couldn't bend my elbows at all they were so painful, even though I didn't have an arterial line. It took almost six weeks to be pain free again. That night my night nurse was my savior. I wasn't able to get up the next day because I was in so much pain and had complications with my bladder that meant my catheter had to be put back in. Healing from that surgery was awful. Weeks. Now I'm doing well. I do have pain on one side of my cheek and some neuropathic phantom sensations but as hard as it was I don't regret it. I'm glad it's done though and happy to never have to experience it again.
When they removed the staples out of my knee it hurt like hell so I can imagine how you hurt with your two surgeries. Bless your heart and may God bless you always.
When I had my leg wound when they were poking at it and using that silver stuff to burn off the dead skin there was no mention of being pre medicated or pain meds offered but everywhere online says meds should be given!
Doctors don't realize that pain is real and there are some pains you can't physically handle without meds. After my colon ruptured and I had my ileostomy surgery, the surgeon put me on Vicodin. VICODIN! He had split me open from my breastbone to my pubic bone and had me going through wet to dry dressing changes. The upside of those changes was this liquid that was simply peroxide and chlorine. I don't know the ratio but that stuff poured into my wound was heavenly. It felt good on it. But yeah, my GI doctor came to visit me and I told her about the pain meds deal. She called up the surgeon and reamed him a new one. Wasn't long after she left that they gave me morphine for pain. Over the years I have built up a tolerance to the regular pain meds. They are like baby aspirin to me. I used to take Fentanyl in a patch form until the government took it away. Now, I have to suffer with chronic pain because nothing else the pain clinics give me works. Anyways, my point is, tell your doctor EXACTLY how painful your pain is and use colorful metaphors and adjectives. You have to explain it in detail to most doctors because they just don't get it.
I have Chron's. The barbie but surgery saved my life. I didnt have much pain with the butt surgery it was more my stomach from being opened up twice in six months. I had stapels to close my rectum.
I have struggled with my waffle pillow for a month... Thank you for mentioning to only fill it halfway! 😮 Wow! Thanks, Maggie! FYI: I got that exact waffle pillow with pump for less than $5 on Temu. 😊
The incision from my cancer surgery was from my breastbone to my pubic bone. Even though I knew that the incision was stitched closed in layers I too thought I was going to split the incision.
Maggie you are a POWERHOUSE ! 💪
Yesterday was the first anniversary of my stage 4 ovarian cancer diagnosis. I was expected to be in theatre fior 9 hours, chemo worked amazingly so it was “ only” 5 hours. I had a spinal anaesthetic in place during and after surgery so that helped. Having had a total hysterectomy and other tissue removed I expected have lots of pain there, despite pain killers on top, I didn’t. What gave me terrible pain was the removal of the abdominal pain. After the removal I had a night of hell, IVmorphine every 90minutes. I stood up day I post surgery. F course I needed help. But I had decided to do everything I could to recover. Mobilisation is so important.
Wishing you all the best in your continued recovery.
The pain must have been awful I had my chest opened and it was painful. Plus the Dr. Said i did not need nothing for pain but tylenol. Then it split open got a infection in it. I think my Dr. Was old and senile. Glad you are feeling better.
I feel like ur a very young friend. Ur fun and sweet and I love ur adventures
Can't thank you enough for your videos. I have ulcerative colitis and had an ileostomy in October 2015 (which I love). Never had my rectum removed. If I can help it, (I'm turning 70) I never want to get it removed, but it's good to know this information if and when I do. Thanks again💕
Rectal cancer survivor here, took me a full year to be able to sit upright comfortably. Still have some discomfort but I developed a fistula from the radiation treatment. Have to have a lung surgery to remove a wedge of lung to biopsy and probably chemo after that, then I'll have my fistula fixed, heal then hopefully ostomy removal. Not looking forward to the rectal surgery but I'm more mentally prepared for this round. Bless anyone that has had or will have these types of surgical interventions. You don't know until unfortunately you know the pain. ❤
My 19 year old daughter has Severe Chrons with complications & they are in the talks of removing hers. Thank you for this video, it just popped up in my feed.
I think you are such a blessing to so many with all of the experiences that you share.
Thanks for sharing! I had at attempted fissure repair years ago, while under a “spotty spinal”, which was excruciating. The tear was in the sphincter muscle of the intestine where it becomes the rectum. Once home, I did recover, but it took months, & since then, bowel movements have NEVER BEEN THE SAME! I’ve been in pain management for this, & for a surgery I had 2 years later.( due to an infection in my spine, which caused vertebra AND disc removal from L3 down thru the sacrum. I was dying, so the surgery saved my life, although pain on a daily basis is the MAIN CAUSE FOR PAIN MGMT. )
I too have nightmare arteries & veins! The lab knows who I am upon entering the hospital. 2-weeks ago, I was in-patient for 8 days. There’s been an amazing upgrade in IV insertion. My last two IV’s were performed by an RN Specialist, who’s been trained to use ultrasound to guide the needle to the best spot in the arm. It takes 15 min. & is far less painful than having a nurse use the needle to “hunt” for the vessel he/ she felt. This nurse came to my room, stuck me once & done! He was also able to draw blood from the site, for the lab! If Mercy, in ARkansas has this technology, most hospitals have it, too. ( My request was put in by a head Nurse in my wing,when she saw my horribly bruised forearms
thanks, in part to the blood thinner given to protect me from developing a blood clot. Next time, I’ll tell them I need ultrasound help w/ the I.V. !
Thanks again! I’m Tekie ( tee’ -kee )
I had a blockage in my intestine which resulted in an ileostomy almost 2 years ago doing fine after the whole thing. Still got my butthole and was considering reversal but decided if it ain't broke don't try and fix it. Found you along the way and you helped with so many things about the process. :)
I had an ileostomty 15 years ago I was very sick after the operation it was open surgery and I had a colostomy bag I lost about 3 stone in 2 weeks the surgeon said that my bag could be removed so after 8 months they reversed it I was thrilled it took me 6 months to recover worst time of my life I’m great now thank god and great full to get my health back 🙏🙏💯
I had this surgery as well by choice. I did not have the same complications or pain. I am sorry you went through that but I do know for certain you are so much more comfortable now.
A little tip -- pee (and some in my support group even have to / choose to do #2) IN WATER.
I have not had this surgical procedure or a colostomy, though I am a perfect candidate, and doctors have mentioned it to me as a consideration.
I had anal cancer and aside from chemo, underwent very aggressive radiation to the butthole (42 days!). yes, zapped.right.there.
(Can't even believe that I just wrote that!)
I have serious pelvic radiation disease (PRD) and radiation damage to all of my pelvic area, including female parts. The fallout is multidimensional and ever-worsening. I have had one major surgery for damaged tissues that caused prolapse of intestines, bladder, and female parts, in several places.
It is truly mind-blowing how devastating radiation treatmemt is! I'm here, though, and grateful for that every day.
Anyway, for peeeing while dealing with wounds or skin problems, the bathtub is great. I just used the hand-held shower, got the best temperature, and ran it over myself as I peed, or to clean myself.
Then I used a hair dryer to dry off, and the soothing, cooling "Calmoseptine" * ointment.
Some people, including me, used just a little "peri-bottle (plastic squirt bottle)" that they'd pour on themselves while going. At any rate, water...good!
One day I shall get sufficiently weary, and gather the valor necessary to take the step to get the colostomy surgery. I have been very cowardly, and -suspect- know that my life would be vastly improved by an ostomy. But I dig in my heels and stubbornly have a very hard time of things.
I know many of you understand all the emotional ins and outs of these decisions.
Many cheers to all, and thanks to all sharing your stories. It's through community that one -- including me -- finds valor and heart! Thank you.
My grandmother had uterine cancer in her 40’s. She began to spot blood, but had gone through menopause & didn’t want anymore of that. The Dr said gotta do surgery. He was in for a surprise. Granny said what are you waiting for, do it.
Many weird types of chemo were used at that time & one was to place a tube(like a tampon) inside her ( they guestamated how long to leave it in her. Ended up being 3 days. Strict isolation, food & necessary items slid in like a jail cell & cleanup crews wore hazmat type clothing. Granny was a steady 99lbs. (102 when pregnant), but dropped to 69 lbs. she couldn’t eat. My grandfather was allowed to bring her food he cooked & after she gained a few lbs they let her go home to continue gaining. 6 months later she had a surgery. She had a large section of bowel removed & resected, same with bladder, & all reproductive organs removed. Healing went pretty good until she sneezed & the abdominal sutures opened. We spent several weeks getting it to close. It was due to the radiation treatment prior to surgery. The best news was that because the radiation came first, she lived into her 90’s without any other cancer occurring. She had no ostomys. I give her credit for her attitude. She always faced adversity head on.
you are a brave young lady. Your sense of humour is refreshing and valuable. People that have a similar mindset as you are more successful navigating life challenges in my opinion
Next year on the waiting list for it
Hi Maggie! Just wanted to second your endorsement of holding a pillow over your belly because it feels like stitches will break and your guts spill out. And that it's terribly painful to cough or sneeze or wheeze of anything like that, so if you feel one coming on, get ready first. And if they make you cough in the hospital, press the pillow on your abdomen before you cough.
I remember the Nurse giving me a spirometer thing to blow in. She watched as I blew in it as hard as I could. I thought that I was doing something spectacular until she informed me that the ball hadn’t even moved😛. She then suggested holding a tight pillow against my abdomen and voila, I moved the ball, so yes it helps tremendously 😊.
@@que-stead-que1717 I didn't know that thing had a name! 😂😂
@@tumunu It does, but I may be saying the wrong name. I detested that thing🤣
Youre a true sweetheart girl, love you dear Im a mom of grown sons BUT , would be so proud , of you as a daughter YOU ARE THE BEST & try so HARDTO GENTLY BUT , plainly help others GOD BLESS YOU MY DEAR
🩷💕🌹🙏🌸
THANK YOU Maggie for your transparency, vulnerability,. knowledge and humor! I am scheduled next month for ostomy surgery after having colorectal cancer and the side affects it has brought. Your videos have soothed and comforted me tremendously! On to your other videos now!! Blessings to you!
So glad it’s all healed 🤩🤩💖
Thank you so much for doing this video. 9 months ago I was diagnosed with rectal cancer. I know have a colostomy and I'm hoping to have the operation to remove the tumour in about 6 weeks. Depending on how that surgery goes, I will know if they will be able to reverse the colostomy surgery or not. I have found so many of your videos so helpful in lots of different ways. I would say though that you being so open and not being afraid to talk about the embarrassing bit so helpful. You really are amazing
You’re a true inspiration thanks for your channel
Great video Maggie
I'm not a Chron's disease patient and I haven't had my anus closed😂, but as a chronic illnes sufferer (endometriosis, stage IV, almost lost a kidney) I can relate most things and experiences you share. I love everything about this video, especially when you said "this night is gonna be the worst, from today I gonna get better and better". Such a positive perspective, than can be applied not only to a post surgery experience, but to life in general❤
Wow such a lot to have gone through for a great portion of your life I am so happy for you that your doing so much better now I want to thank you for sharing with us as I am not there yet hope I don't have to but better to be prepared than not .take care.
Why did you have that surgery done?
Thank you for sharing and educating us. 😊❤
I had flap surgery and my BB wound still separated 😅 took about 6 months to heal with the help of my plastic surgeon and trying a million different things. Thank you as always for sharing your experience! Videos like yours helped me a ton before my surgery.
I've had a total removal I'm 71 5 months post Op all healed but only just sitting upright nearly all the time the pillow so wish I had this . I've just been abroad for the first in 4 years I had assisted travelling which helped greatly security were fantastic I have a card which says I have a stoma everyone was so thoughtful I was patted down in Spain security but very gentle. Love your videos extremely helpful 😊
You are helping so many people. You are so brace.
Hada Neice , that went thru all of this , SADLY
THE HOSP, & radiologists initially missed a cancerous area above any area treated with radiation & Chemo we lost her at 44 Such a terrible hard, SAD TIME
YOU SRE SUCH AN ANGEL
SO GLAD YOU ARE HERE TO HELP OTHERS “ AND YOU DO” & im soo glad you had/ have such a SPECIAL LOVING DAD & BEAUTIFUL HEARTED HUSBAND
HE IS AMAZING , just as you are MAY GOD BLESS & BE WITH YOU ALWAYS 👩🏻🩷😊👍🙏🙏🙏
You are such a brave young woman.
OMG Maggie you have been through so much. God bless you 😇
Maggie I couldn’t have got through my surgery without your advice, thank you. I didn’t get any from my team, just from CZcams. I’ve had a hernia where my anus was, so had my wound reopened, can’t recommend it, but I did end up with a-lot of scar tissue behind the vagina removed, so a bonus.
Waffle cushion is amazing. I still take one everywhere, work, car, cafe. Everyone admires it and wants one. I loved my hug support sheet, folded into a huge parcel, and used it as a wedge to sleep on at an angle afterwards. Getting into bed, climb on on all fours. Crawl to where you need to be then flop. Ladies- Peeing, easiest with a disabled toilet or use a surround with arms so you can take the weight on your elbows and lean forward. Walk as if you have a band holding your knees together, tiny steps. Big bean bag great as you can lean back and relieve the pressure, or lie on your side or front, just be careful how you get up. Lying or standing is best. I now find I need to but some cream on to moisturise and soften the scar so I use antiseptic cream. Sitz bath with salt once the wound has healed is so comforting.
Most important is take your time to heal. It can’t be hurried. Be kind to yourself, give it time and it will settle.
I think you are so brave and strong. We go through life and have no idea of what we will face. Congrats on your 100K and God bless.
You are an exceptional human being and I wish you a long healthy and happy life.
Great information for us all. Thanks and really appreciate the humour! 😅 if you laugh you may cry 😭. Congratulations on 100K! 🎊 🎉
Wat a great spokeswoman u are for this disease .
You’re such a Wonder Woman , I super admire you so much ❤❤❤❤
Hi Maggie you are a real help to people suffering from this decease .and so king and helpful .❤
You.are.the.best. period. Full stop. Yes.
Many cheers!
Maggie; you are super brave , strong, smart and you are helping so many people with your experience.. take care & I wish a happy & healthy life for you and your family
Maggie,you are indeed an angel and an ambassador for all patients with your condition.❤
Thank you for all the personal info you share here, Maggie! I am in awe of everything you have gone through, and you still have the grace to smile and even sometimes joke about it.
I think my problems are much smaller in comparison, but I have surgery coming up in 2 days, and I am so anxious about it!
About 40 years ago (when I was 18) I had surgery to remove a pilonidal cyst. They don't stitch them up, so it takes several months for the wound to completely close up and heal. I never thought I'd be facing this surgery again, at the age of 60, but here I am again! The cyst has come back, unfortunately.
I'm not worried about the surgery, I'm just very anxious about the long healing time, and the pain. I live by myself, so I'm also worried about taking care of the wound by myself.
Do you have a wound center/clinic near where you live? They are very helpful in treating wounds, and showing you how to take care of it. I gone to one for the past few months and they were so kind gave excellent wound care. Also, a home health nurse maybe able to come out to see you. Your hospital may have this information. Best of luck on your surgery ❤
OMG! Your recovery and attitude is amazing. While I haven’t had this particular surgery, I have had many abdominal surgeries. They are difficult to recover from. I hope you now have good health and a wonderful life. By the way I am in my seventies and had the surgeries in my 30’s. Do I have regrets. Yes. Am I happy to be healthy for all these years? A resounding yes!
Girlfriend, I had mine removed in 2010. It was the absolute WORSE experience of my life. I have had multiple stomach surgeries and this one took the cake. It took 8 months of daily dressing, wet to dry, changes to heal. I'm just glad it's over and that's one surgery that will never be repeated! Oh I forgot to mention they first sewed it up down there. Then within a week it was full of infection and emergency surgery was done to clean it out. That's when they tried to use a wound vac on my bottom. Well, obviously, the location made a tight seal impossible. So, the surgeon came in and with no pain meds or sedation he ripped that wound vac out. I thought I was dying the pain was horrific. They sent me home a few days later on Oxycontin. Trying to sit was awful. I had to use a donut thing. I mostly just reclined on the couch or in a recliner. There really wasn't a way to sit that wasn't painful. I am thankful I survived it. That was 8 months of pure Hell. Those dressing changes were extremely painful too because they had to measure the wound so they would know if it was healing properly. I don't recommend that surgery unless you have no choice.
I had a extensive hemorrhoid surgery and it was so extremely painful! I wish I had mentally prepared myself but it was less than a week between planning it and getting it done! It took over a month before I was a functional person again because of the pain and ability to sit.
11:00 I wish I knew about this pillow!!! The donuts is a terrible design for healing your bum hole.
God Bless pretty lady. Be safe
Much respect to you.❤😊
Just come over here from your other video, and it was very helpful to hear your experience. My surgeon has said he definitely wants to do the Barbie Butt operation as a prophylactic measure, while he is repairing my parastomal hernia (3rd time to have this done). I know this is going to be difficult but forewarned is fore-armed. I would like to know how best to prepare myself physically too. I have ME and am partially disabled and only walk very short distances unaided - I use crutches, and mostly my trolley, at home, and a wheelchair when out and about, and I do sit a lot, which is probably going to be a problem post-operatively. I shall be discussing all these different aspects with my surgeon, and I have an idea that the occupational therapists may be able to play a part in easing my recovery too. I don't have a date for surgery yet but I anticipate it being sometime in the early summer at the earliest.
Hi Maggie, I will be getting a Proctocolectomy along with a hernia repair in the near future. My Surgeon mentioned giving me an epidural for pain management. Have you ever heard of this type of anesthesia being used for this type of surgery? I’ve been working on getting myself mentally prepared for this (Already been through 3 Colorectal surgeries in 8 months) so I know what to expect on the front side, but the pain in my backside is what I’m trying to prepare for. Thanks so much for all your help and info that you share with the #IBD Community!
Thanks… good points , etc.( My Total Colectomy was IN 2015:after a Lung Surgery for aspergilloses spot). Anyways: Twelve Step way of Life, all my prep
S, Physical PROGRAM paid off : lots of “TRAINING &/Program, @ U Chicago Hospital…* Spouse & Daughter big help.
I have a hug towel! It helps so much!
This seems like an appropriate video to ask this on: You said once that some people have a second stoma so that their colon can release the mucus. I know the original surgery was an emergency; but I'm curious if this was ever offered to you, and/or why you didn't have it?
I really wish I'd known about that waffle pillow when I had my son last year and not only required stitches, but also developed a varicose vein from all the pushing. And for anyone wondering, the vein hurt 1,000x more than the tear/stitches, and took nearly a year to resolve.
What they also do not tell you about is the itching. I have not had a removal. I did however have fissure repairs and stitches there. It. Is. Painful. I totally get every single word you said. But they also do not tell you about the itching during healing. Lets just say ... I now know how a dog feels when it drags on the friggin carpet. All I wanted to do was itch. Having to have bowel movements with the stitches was the closest to God I have ever felt. I was praying for my life. I feel everything in my heart for you and what you went through. Mass respect.
Did you have LIS? That’s what I need to have. I’m terrified as I can’t have nsaids and I throw up with opioids. God help me!
the she wee 😂i’ve used one for years ,practiced at home ,not health problems ,but makes huge difference if caught short with no public loo available .
Couple i’m friends with brought it as Christmas present,not as a joke present my friend uses hers in the same way I use mine ,practising at home is key though .
Ouch!!
I had a proctocolectomy with end ileostomy done five weeks ago; it was planned (long history of UC/PSC, low-grade dysplasia in my colon, and planning on a liver transplant next year, so the transplant team insisted it was time). It's interesting to hear how much pain you had immediately from your butt incision, because nearly all of my pain for the first two weeks was from my abdominal incision, which was large because I had open surgery rather than laparoscopic. They used surgical glue on my abdomen, but dissolvable stitches around my stoma and in my butt - and those are still dissolving. As the ones in my butt have dissolved one by one, the wound has opened and begun to hurt more, but several of the stitches simply refused to dissolve and the wound care nurse finally took them out (OUCH - the tissue had grown into them!). Nonetheless, most of the butt incision is closed (for now, at least - hopefully I don't have problems with it reopening the way yours did!) and the pain is diminishing. Out of a 6" long incision, I'm down to a couple of wounds that are 1/2" to 3/4" long that are still open in my butt, along with one tiny spot in my abdominal incision, right in my navel, that is still open but is fairly deep. I agree with your waffle cushion recommendation (the hospital gave me mine), but after about a week and a half I switched to a memory foam cushion I bought for about $40 from Amazon, which I found supports my sit bones nicely without putting any pressure on my butt incision or spreading my cheeks at all. At any rate, thank you for your willingness to share your experiences - your channel was tremendously helpful to me in the weeks before my surgery, both with what to expect with my butt and what to expect from my ileostomy.
# BEAUTIFUL Nail Polish COLOR : )
Years later from my proctocolectomy i have had phantom pains where it feels like i am going to need to use my bowels, even though it was impossible. Its strange that given it was 1998, i still every now and then, feel like im about to poop.
I had an episiotomy with my first delivery. It was one of the most painful things I’ve ever had to recover from. It hurt to sit, walk, and lay down.
It sounds like it is really painful after the surgery, but turned out to be a success.
To get my legs to function again I had to stair step. One leg was stronger, so I used it to pull the other up.