It's ok, I did it for years too. I read a lot and we didn't have social media then. It makes no sense that leather suede is pronounced swade, yet if it's suedo (something), then it should be soodo.
Your willingness to be vulnerable and share your very, very personal journey with us and articulate it in such a relaxed, educational manner is admirable. I can't imagine the positive impact you have on other people facing the same issues, their friends, and their families. Hearing it from a human who has been through it is much more profound that Googling an article. Thank you. And Zach.
I have had a total proctocolectomy due to ulcerative colitis and also an esophagectomy and 1/3 of my stomach removed because of esophageal cancer. I am thankful that I still live a fairly normal life.
My son suffers from ulcerative colitis. Suffers, although he is careful. His dad had colon cancer and ostomy, and we are aware that unmanaged UC can lead to that. didn't know it could lead to proctocolectomy too. I hope your surgeries have taken care of all the problems and glad that you are still living and enjoying life. The things we learn! All this is news to me.
@@arlenemaxwellcopeland1644 l have been through colon cancer and had the cancerous tumour taken out and resected which meant cutting out the part of my colon where the tumour was attached and then some. I wore a iliostomy bag for 8 months post surgery to give the colon time to heal up After the bag was removed my intestines were sewn back together, Well the first few days everything I ate literally came straight through me ⅞u
@@sophiajoyceferry7150 When I had my illeostoma the first time I drank orange juice, the bag exploded, because my intestants reacted so strong.. It was producing like crazy
I am lucky to not have issues yet I enjoy your videos. I am not even sure how I stumbled across your channel but you seem like such a wonderful person who is so upbeat and willing to share your story to help others which I think is amazing given the sensitive topic! Plus, it is just sweet to watch you and you adorable husband interact!
My best friends mum had this surgery a year ago cos of cancer and I was able to tell her not to worry about the surgery as you coped just fine xxx thank-you xxx
I'm a pharmacy technician at an infusion pharmacy and I was on the phone doing a refill call for one of our Crohn's (or UC, I can't recall, sorry!) patients who was about to undergo an ostomy procedure and was so scared. I wanted so bad to just refer her to your channel, but worried it might be inappropriate at work, so I just relayed a lot of what I'd heard from you. The more times we talk, hopefully we'll get more friendly and I can point her your way!
You have been through a lot of pain Maggie, the fact that you can comfortably look back at it with hope for the future is amazing. Good luck for a future pregnancy, lots of love all the way from Australia. 🐨 🦘
I had my large intestine removed due to colitis but I was so lucky that an internal ileo pouch could be made and I only had an ileostomy bag for a year. The op was life changing. No more pain, anaemia and sickness. I really appreciate and respect people who speak out about IBD. ❤️
I’ve had a pouch since 1995. It’s fantastic to hear such candor, especially from a young woman. I was 20 when I had my surgery. Good luck to you, Sarah!
My surgeon tried to talk me into reversing my ileostomy .. I absolutely do not want to reverse .. I tried reversal .. strictures and scar tissue made reversal very very painful and just did not go well.. I had 4 surgeries.. I am perfectly happy and have a much better life living with my ileostomy👍👍 I can do things I couldn’t do with my colon connected.. I have had my ileostomy for one year now and I’m happy 😃 You are looking great Maggie !!
Maggie my cousin has three teenage boys. She had an iliostomy way before any of her three pregnancies. Everything turned out great. My daughter is named Maggie
Your experience leading up to your proctocolectomy sounds so much like mine. I’ve been following you for a long time both here and on instagram, but actually hearing you talk in detail about passing mucous, leakage, strictures, and all of that was such a crazy relatable experience! This was definitely the scariest and most difficult surgery, I’m only 3 weeks post-op so I’m still very sore and slow moving but it does seem to get better every day.
OK, I'm a 73yo guy so this is a bit different but my experience a month ago tracks yours sort of. Just had an ileostomy last month. 4 drain catheters, 2 thru the abdomen, 2 in my butt plus the one through my nose to keep my stomach empty. 2 weeks ago I had 14 staples removed. My colon was removed 12 years ago so this time around my rectum and anus had to be taken out due to progressive degeneration. I've had 7 fistulas, 2 abdominal, 5 anal. They sewed my behind shut - feels like I'm sitting on a log. My ileostomy is working OK so far, I sleep on towels just in case. I've had 5 previous related surgeries (colectomy, fistulectomies, fixes for infections) so there was a lot of scar tissue. Abdomen looks like a road map. Surgeon took 5 hours to do that final ileostomy and there was one added emergency midnight surgery for some blockage. Gotta tell you, that little "button" the nurse showed me is a god sent. (pain meds) I can completely commiserate with you. A week in hospital is like a year in prison. Like you, I couldn't turn in bed. Never more than 2 hours of low-quality sleep. 3 weeks at home now and watching your videos. I'm so thankful there is someone with this condition willing to go on line to discuss it - don't feel so alone. THANK YOU. Zak is awesome. How many guys????? Be sure to feed him his Wheaties and hope you get pregnant. Thumbs crossed.
Just spent 5 more days in Hospital. My BP crashed and Husband had to pick me up off the floor. Dehydration has now affected my heart and now dealing with AFib. Our hope is that when we find the right medication for the UC it will all correct itself.
Mags...I continue to be super impressed with your attitude and strength. I did see the video where you had the stitches removed from your butt. Seeing you cry broke my heart and was comforted by the fact that Zac was there holding your hand. I’m sure the pups were very comforting to you when you got home. God bless.
My friend was hospitalized in a coma and ended up having this surgery. I never really felt comfortable asking personal questions about it. TY for the video.
Maggie, I am having an Abdominal Perineal Resection, Parastomal hernia repair, and relocation of my stoma April 30th at Penn Medicine. I too have Crohn's. It was your videos a few years ago that got me through my bowel resection and colostomy. I have a huge undertaking coming up, and pain management/ recovery concerns me. Positioning is also a concern. I will have a large horizontal incision on my abdomen, and an incision from the proctocolectomy. Maybe I will just hang upside down like a bat, lol! However, watching you always helps me. Looking forward to your video today!
Your channel is awesome. I love how you’re matter-of-fact, but relatable and non-robotic. My roommate is a Crohnie. She’s at four bowel resections and counting.
I had my ileostomy due to FAP then get it revised to a j pouch now I have mine back again 8-11-21 and I love mine over the j pouch so much better 4/30/19 cancer free 7/30/19 j pouch full 8/11/21 removal of j pouch to ileostomy bag for good! I love it
I live without my colon, too. But you’re far more courageous than I’ll ever be! I absolutely love your positivity! And may I add, with every challenge met and defeated, even brighter blessings will come your way! You are a true source of inspiration!!!
Can we please have an up close of you're rock. I'm a ring freak and have a huge mystic topaz for my alternative. I do have diamonds but I love so many stones. Its become a perpetual habit.
I agree with Carson. As a 71 yr old man jut beginning to see the evidence of my mortality more each day, you are an inspiration to me in your courage and positivity. I wish you all the best. You have no idea how your sharings help so many in so many varied ways no matter what we are dealing with . Thank you so much.
So glad you were able to find a solution for your period! Discs scare me, but I love my cup. If you're thinking about trying the cup again, maybe that's something you can work on with your pelvic floor therapist
Wow. I had a cleft lift due to a damn big cyst on my lower low low tail bone. My story is not your story. I still sleep on my side and on long trips i sit on a 🍩! Thanks you for sharing🤗
Hello Sweet Maggie , I hope your feeling very well ! Can I please email or text you a few questions that I’d love to ask you in regards to your colon & Removal Of organs . Thank you so much for being real and raw . I want to watch all of your videos ❤ ! You are So Beautiful ❤
My only 'connection' with Crohn's Disease was years ago I had a friend with IBS. Unfortunately we both got married, and moved and we lost track of each other. I like your videos because I am very curious about a lot of things, and I very much enjoy that your videos are adult, truly informed, honest, very human and often humorous. Thank you.
Maggie, you always astound me. The willingness, the courage, the dignity and the humanity you prove in every single video are really inspiring to me. Thank you for this infos! You deserve nothing but the best!
I remember it too & I bawled for her because I have experienced so many pains my heart fell to the floor watching her! She is an amazing woman & extremely brave in my eyes!
I would personally love a part 2 type video with this stuff - if you talk about more of even in more detail about what you discussed here. so helpful as i have basically the same story as you
You are just a breath of fresh air to countless patients pre- as well as post-op. I’m a retired RN and using our own life experiences can make for great teaching moments. My GI tract is together, but I tuned in to watch your forthright advice and experience. Thank you for that and God bless!
Thank you so much for your videos Maggie. I also have Crohn's disease, which in my case affects the last part of my small intestine, and I think it's awesome that you are shedding light on what it is like to live with this disease. I feel like not many people know about it and the struggles related to it. It must have been absolutely horrible to live with constant discharge in that area - that is actually one of my biggest fears and worries related to the illness, urgently needing the bathroom at any given time... So thank you so much for educating people on the matter and being so brave to talk about topics which are often tabboo so openly. My doctor told me that I will probably need to have part of my small intestine removed in the near future and I hope I can handle this situation when it comes with as much bravery as you have!
Having to still pass mucus with an ostomy sucked. I thought it was so weird that stuff still came out. My ostomy was reversed and I’m so afraid to have to get one again because my skin reacted so bad to the adhesive. No matter what I tried it got inflamed, oozy and even ulcerated in some spots. I put on crusting powder, tegaderm....nothing worked. It was so bad at the end that the bags wouldn’t even stay on, I had to tape them on around the edges.
I also have an ileostomy bag I’ve had it for about 4 years now, I had chemo that destroyed my colon and large intestine I had numerous surgeries over the years. I can’t get mine reversed I’ve learned to adjust to the situation and live with it.
This video was very honest and informative. There are probably many other situations that could be explained in important detail on social media by other as equally intelligent and effective people if certain social media platforms were willing to allow it. It is an old saying but knowledge is power and it was so kind of Maggie to share that knowledge.
Have bad IBS, had to have a complete hemorrhoidectomy last August, and recovery was brutally painful! Got fissures, which are still not healed. Imagine your surgery was also not remotely fun. As bad as my gut issues are, seeing your story makes me realize things could be MUCH worse! Your videos have helped me a,lot in my recovery journey. Thanks.
Omgoodness. The catheter was the first thing I begged to be removed after every surgery or post epidural after giving birth. Those things are the devil!
I had to have an ostomy 17 months ago at 91 and you helped me so very much. You are so positive and constructive and beautiful too. You showed an ostomy aid and my granddaughter who lives in New Mexico sent me one as they are unobtainable in South Africa, what a blessing that has been. I think you and Zak are so inspiring and don’t ever doubt the help you have been to so many. God bless you and may you have many many very happy years together. Zak is a really fine character and as for you your bravery and courage is inspirational .
Thanks for talking about leaking! I was the same for years. You helped me so much with my osteomy and information I am much more well now. It was the best decision I made. I have cerebral palsy too and you have helped me to think around some of the problems I have had with my bag and sort them. You are a great advocate.
OMGOODNESS!! I can’t believe I just saw you here pop up! I honestly think even RU-vid hid you from people. One minute you were here, the next...POOF you were gone. Well, I don’t know what happened but I’m glad your back! Or, I’m glad I found you again..I do t know what happened! Before, every time you posted a new vid, RU-vid would let me know...well, I no longer saw you were posting. Kinda like out of sight out of mind. Well, you have always been on my mind, you helped me through a lot!! (TY) So, let me finish watching, and I will have a smile because...well, there you are and it’s good to see you! I hope all is well. XO
I dont know if you will ever see this but I had to say something. I have dealt with health problems my whole life, had Guillain-Barre at 4 yrs old, and my step father had colon cancer resulting in him losing his colon and rectum and he has a colostomy bag as well now. So my experience with health issues is well versed and I CANNOT imagine the strength and courage it takes for you to make these videos. It blows my mind. I'm really in awe to be honest. Sorry you had to go through all of that but you are an inspiration to anyone dealing with medical problems and surgeries in my book.
Just read some of your comments. I have not tagged 'thumbs up' so many times! Ever! Most of these are better written than anything I can write. You are an inspiration. And a gifted speaker/teacher. Thank you from everyone! Please carry on!
Years ago I worked with a young beautiful person that suffered with horrible digestive issues . She went to several doctors that decided because of her beauty, they decided she was annorexic . Of course it was Chrones disease . I hope people with this disease are treated with more respect than years ago . Thank you for your informative video . Hope you stay well .
I admire your ability to be so open to tell your story. I’ve had the same operation. Full Panproctocolectomy but have severe small bowel syndrome with three previous operations on the small bowel
My surgeon said he didn’t want to do the Barbie Butt operation on me because it was a very difficult one and had a long recovery period involving a lot of pain and discomfort - all of which I have heard from those who have had it. I have a small rectal stump of about an inch and a half and every 2 to 3 weeks I can feel a build-up of mucus in there, reminding me of what it used to feel like when I needed to poo. I can’t push this out as it feels as if there is nothing to bear down on. I have made myself quite sore in that area by trying to open things up with toilet paper. The physiotherapist said to me that in the West we poo and pee in a very unnatural position, sitting upright as on a chair - in the Third World people tend to squat, and this gets the various parts into the correct position. She said you can get a product called a Squatty Potty which is like a plastic box that goes round the base of the toilet that you put your feet on, and this gets you into the correct position. I find that if I lift my legs up and away from me it has the same effect, and I usually manage to expel the mucus OK now. After my initial surgery, when I was having my chemo, I had a lot of trouble with mucus and couldn’t get rid of it at all. They couldn’t even get a proctoscope inside to have a look, because it was such a mess in there and it was very painful when they tried. In the end I had it cleaned out under general anaesthetic and was also told that there was some infection in there where the wound was. They said that if the problem recurred I might need the Barbie Butt surgery, but fortunately it’s been manageable since then. They also said that how things were could have been an effect of the chemo I was on. Initially they gave me some mini-enemas - you break the top off the little container and squirt the contents inside you and keep it in there for 5 or 10 minutes and this is supposed to help get the mucus out. In my case I couldn’t keep it in more than a minute or two because it caused intense pain. I was also told that I would still have ulcerative colitis in what little remains, and that I could still be at risk of it causing a further cancer but I haven’t really had much trouble with it since the difficulties initially. Things are much better now, 7 years on, and what little problem there is with the mucus, I am managing it OK. Interesting what you say about how the colon supports other internal organs. This sounds very logical! In my case when I had my colectomy, I had already had a hysterectomy. It’s surprising that having so much removed from my abdomen, it is still so large lol!! Partly this is the hernia I’ve got but it’s rather depressing not having a flat stomach when they’ve removed most of the contents!!
Hi Maggie. For some reason the algorithm recommended I watched your videos (probably because I recently watched a video by Chubby Emu on his Heme Review channel about Phylum Husk...) and I have to say, your videos are really interesting. I'd known someone with Chrons in my teens, so having learnt of it at the time through her - I had thought it was something limited to/that only affected the intestines - I didn't realise it could affect your whole GI tract! (YLSNED...) About the red stuff. As someone who has had two children & never thought they could get pregnant due to having PCOS - I get where you're coming from on the whole having kids front. I hope that this isn't TMI, buuut... amusingly, I get the whole 'ginus things, because during both my pregnancies - I got labour pains - IN MY BUTT! It was really painful. I had to have an epidural both times. If you do ever get pregnant - you're probably going to have to talk with someone at some point about a pain management and other related contingency planning if you're going for natural Labor/Gina delivery. Based on your medical history though, I'm gonna assume that they would probably recommend that you have a cesarean if you did ever get pregnant - because it would probably result it less risks you personally/overall due to your personal circumstances. Something else to probably watch out for would be your iron intake. Some of the iron supplements for some women make us vomit - so it's probably an issue worth taking note of with you mentioning how important fluids and hydration are to yourself. For me, I found the Iron+VitC+Fibre supplements didn't make me sick - whereas the multivitamins containing iron did (looking at you Elavit...). Also... Ihad blood pressure issues. Lots of women have blood pressure issues. Blood pressure issues are really common during pregnancy. 1 in 5 of us also end up developing pre-eclampsia (which can then develop into renal issues 'cos your body isn't getting rid of toxins like it should be). I'm really curious how a pregnancy would go for you considering that last point. You say you're drinking lots of electrolyte drinks - but those are filled with salts and can negatively impact blood pressure. This said, they say you're blood pressure goes down if there's less pressure in your abdominal cavity from things like a full bladder/stool build up... ... If it comes to it, surrogacy is more and more acceptable these days also , so might be worth having friends on dial if it comes to it. (You and Zak would still be genetic parents but you're getting another woman to carry your baby to full term for you...) These are all my thoughts/opinions on your stuff. Hearing you talking honestly/openly about this stuff makes me want to do the like. I really hope you're successful in achieving your dreams for life - having kids included. Am subscribing now so that I can add you to my para-socials. ;)
I am so grateful i found your channel. On the 26 Aug I am having my full colon removed . I already have an illeostomy and have had one for 9 years . Have u ever heard of anyone having it this long? I find out Tues after I have another manometry test if I have to deal with downstairs dealt with as well . I am scared because I have anorexia and bulimia and I am not in recovery. I maintain my weight at a bmi 14 or so . I am so scared of losing weight. I can't afford to drop weight and do not want to deal with feeding tube's. After this procedure my colon needs to heal so i would not even be able to have an ng tube or one via stomach . I would need to get tpn . I refuse to go that path .I am petrified . I have had it in 9 years because i was trying to increase my weight. I have struggled since 8 with that . I am having the manometry test Tues. When I did a sigmoid flex test and the gi doc said that when I was under sedation it was hard to get the instrument upstairs and there were a lot of tightness and spasms. I just recently after 9 years feel so much pressure like I ate a lot and it is uncomfortable could this be a symptom that might require this procedure. I am scared and it is so hard to get my gi doc and colon doc on the same page. Gi doc understands eating disorder and colon surgeon is dismissive of that aspect. I am just venting so scared
Hi, I had my large intestines removed and a ileostomy bag surgery October of 2021. I go back in on January 17th to remove my rectum and do a hernia repair. Is this part of the surgery could you help me understand is it different, they are not removing my anus. They said it would be over kill at this point. I also watched your video on periods after and the same thing is happening to me, any advice would be greatly appreciated, with the fact that i get pouring blood and my period goes all month long sometimes. I also get vaginal leakage. I get vaginial pains. I also have crohns as well as I have a hernia, and pieodurmice, as well as inflammation in my eyes because of crohns. I'm just looking for advice, my surgery is open surgery. Thank you fir sharing your videos.
I have one too. I'm much older than you but it's tough, and hard to deal with.! I had mine in 2019...it effects every aspect of your pre proctocolectomy life seriously.. I have others conditions as well, which make it even harder..😥😫
You went though a lot. I feel sorry for you. I had the same thing done. For me my Ostomy surgery was an emergency surgery. In the hospital for a week and when the surgeon sough what was going on he immediately went into action. I pass out from all my pain an hour before surgery going to the bathroom. The doctor thought I might not wake up after passing out. My colon almost burst. After surgery recovery went Smooth for me really Smooth. The next surgery a year later to close up my butt was even smoother. There was no scar tissue when I was opened back up. That was the lords hand in everything. I could have been gone.
The hell you must have gone through and that you've had to get used to. I thought it was hard w/ IBS, and it is at times. It gives me a little taste of what you've dealt w/. The surgery complications would be a nightmare.
my husband has had prostate cancer twice. The first time round they did 38 radiation treatments, the last 10 double. He did very well for 8 years and then it came back, same numbers the whole thing. He had very few options left so he went for ileal conduit surgery. Unfortunately, the prostate was fried onto his bowel and while trying to remove it, the surgeon cut the bowel. My husband had to have an emergency colostomy surgery in the middle of the other surgery -- it took him 3 years to completely heal. His ostomies are not in the usual places and he is very self conscious about them. He doesn't feel comfortable changing a pouch anywhere except home and as a result -- we don't go any where and aren't intimate. Actually not intimate since the radiation. We have a good relationship but it lacks what it used to have.
You may not remember my posts to you on FB, but you've been a very long-time hero of mine. I've always recommended your blogs to anyone I ran into with questions, and as an inspiration, and I've always loved your product reviews over the years. I had my ileostomy/procto-colectomy back in 2013, and given the horrible year leading up to it with bleeding internally (and externally, when I began bleeding profusely while installing a computer system at a bank, which was really embarrassing,) being incredibly low on iron and needing IV iron infusions about every 5 or 6 weeks, and needing 3 blood transfusions in the year leading up to the surgery, it really has improved my life.
Oh your colon rectum was removed this could explain the video why your skin is flared up. So the bag holds your stool 😐. Oh thats why they say check your colon every year hint to me. Omg real stitches down there ouch
I am sorry you had a wound issue with your removal. I am a recent ostomate and had my anus, rectum and most of my colon removed. Plastic surgeon move a part of my left butt cheek to avoid wound failure. Butt crack is sewn and stitches went well.
My mom, brother, sister, both my daughters and three nieces had a illeostomy bag. All but my mom had procedure reversed. Hereditary. Familial Polyposis. My mom passed from colon cancer. Now two nieces have cancer. They are sisters. Matter of time for them. So, I know exactly what you're speaking about. Colonoscopies are done every six months. Top it off...I was diagnosed with Multiple Sclerosis in 2014. Husband left few months after diagnosis. I prefer being lonely to trusting. Anyone. Ever.
I have had bowel cancer and as such i now wear a bag and the surgery cannot be reversed, all i can say with first hand knowledge is, you are one incredible lady!!!!!
