Choosing Permanent Incontinence? | J-Pouch, BCIR, K-Pouch, & Stomas | Let's Talk IBD
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- เผยแพร่เมื่อ 29 ก.ย. 2024
- In today's video, I speak as to why I have chosen to be incontinent with my ileostomy as opposed to options like the J pouch procedure (of which I'm not able to get) and other continent reservoirs like BCIR and Kock Pouch. There are different options for those of us with stomas, even permanent stomas, and I share a little about them!
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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
Changing my wife's colostomy and performing wound management was a personal, intimate, act of caring every time to comfort her and reduce the anxiety and panic from her emergency cancer surgery until she entered hospice care. I learned how to care for and truly love somebody.
Sending lots of love your way! What an incredible thing to do for her to comfort her during that time! ❤
I too, care for my wife in changing out the entire Ostomy assembly. she can do it her self but feels more comfortable with me doing it. It is an intimate thing to do and I don't mind at all. Its is a way for us to get closer together. we have been married for over 50 years. she had to have her entire colon removed due to C-Diff contracted in the hospital after triple bypass surgery. She contracted every nasty bug a person can get from a hospital setting. Fact she is so lucky to be alive at all with all the infections she got from there. to be far to the Hospital, she was on Immune suppressing drugs from a Kidney transplant twenty years prior. She had three different infections in her blood as well, also pneumonia as well plus total kidney failure, so dialysis had to be started as well. She was in the Hospital for almost 6 months. She has been home now for 10 months and is still recovering. she lost 65#'s a lot of it was just mussel mass. so we need to get her into physical therapy. but struggling with getting that started. But I am so so thankful she is alive and back home with me.
I wore a ostamy bag during my cancer treatments and my wife cared for me the same way
You sound like an incredible husband… Sending hugs your way
Awesome video Maggie. I applaud the husbands and wives who are so supportive. 👍
Gay Pride is Sunday in NYC
Most of Fifth Avenue will be barricaded for Parade
UpTown will be less crowded
Hi, i got a question about blockage after you eat something. How do you do to get rid of the blockage? And please talk as long as you want, i love your videos :)
As long as it's not severe, I try to massage my stomach around my stoma, drink lots of fluids (especially warm fluids like tea), amd walk around! If it feels like a full blockage meaning nothing is coming out, I'd go to the ER!
@@LetsTalkIBD Oh that sounds really uncomfortable for you! It must be difficult to know when it's gonna happen. I hope you don't have it often!
I get blockages very often due to ehlers danlos syndrome. What works for me is magnesium and hot water, tummy rubs, vomiting, and going to the er for an NG tube.
Does anyone know if long term j pouch (over 40 years) can be changed to an ilostomy in an UC patient who is 77 years old??If it would work, I would do it due to constant almost blockage.
Thanks!
Aw thank you Brandon! ❤
Choosing *"Permanent Incontinence"?* What?!
you have single handedly saved me. my 73 year old dad had his bladder removed because of bladder cancer. the dr made it sound like a urostomy was gonna be a walk in the park! we were not educated at all and just believed in him. my dad went to 3 hospitals and 2 nursing care centers in the span of 2 months, after his surgery in march. NO ONE could get a bag to stick. he laid in his own urine pretty much..i was in extreme panic mode. in a fit of desperation i came onto youtube and i found you. i changed his bag. me. all by myself. you made me feel comfortable about the process and you gave me hope. my dad is back home now! sending love and hugs. ❤
Isn't Maggie the GREATEST! No Dr or Nurse Practictioner prepared me or could answer questions or help me with situations only another "stomate" could relate to!!
That's huge, and really shows just how much good is coming from Maggie's channel. It is amazing (and rather sad), her channel was able to help more than the medical profession to get your dad's problem under control to have a much better quality of life.
I must also congratulate you! I gather you were able to translate aspects of Maggie's advice on intestinal stoma care to urinary stoma care... really amazing as medical professionals were not able to make the same leap. ❤
I'm so glad you were able to figure it out!!! Praise God and may He bless you and your father ♥
Hello, I just read your comment. Trust me, you are not along! I’m a 54 year old paraplegic, and I had to have a colostomy permanently put in me do to complications from wounds on my buttocks area. I never got the proper education, as to what ostomy appliance would work best, or stick and not easily leak or pop right off! It really frustrating and humiliating to say the least. I was able to finally find a product that stayed on the best, without having a darn, disgusting mess! For me, I’ve found a brand and product, a two-piece, barrier/bag, that really stays on best. The barrier that sticks directly to the skin on my stomach, and the disposable, 500ml pouch, that had a double circular adhesive ring, that really sticks well to the silicon barrier attached to my stomach. I’ve found that if you are vigilant with cleaning your area first that the appliance stays on much better. If your dad’s skin can handle it, try to use an alcohol cloth or several of those small alcohol prep pads, to wipe lightly around the area you want to stick your product to. Make sure it’s very dry, then apply it and rub on it, back and forth several times. Hold the warmth of your hand on the product once applied. I never had one nurse clean me right after they changed my ostomy, in the early days, so I learned to do it myself, so I am very clean! Hopefully, your dad is able to physically do his own ostomy. Did you ever find a product that works well for your dad?
First of all, you are not just a nobody. You don't realise how much you mean to people like me who are in very similar situations as you have been in. You talking so frankly and candidly takes guts (no pun intended! ) it takes a very special kind of person to do what you do. I couldn't talk to anyone for three years after my ileostomy, I found the whole thing so traumatic. You are truly amazing and inspirational, and that's why you'll be celebrating soon when you hit that 100k mark! I've had more useful information from you than any of my Dr's put together. Thank you for being you and doing what you do. You are a true inspiration ❤️
I've said this before but I'm gonna say it again. You encourage and comfort so many people who are going ANY sort of chronic illness. I keep all those who suffer, including y'all, in my prayers.
♥
I understand completely about not having control over your output. I have severe Crohn's and have spent most on 2023 in hospital. I have a fistula that has tunneled into my stomach. So far I have had 7 blood tranfusions, my iron, potassium, vitamin D and magnesium are all low. Sometimes very low. I just started Remicade and it is slowly helping. First stay at hospital, was because of vomiting and as soon as I moved, I would have accidents. Second was because of not being able to control my bowels at all. That ended up being almost a 2 month stay. Third was because the vomiting and diarrhea came back. My GI said that I have the worst case she has ever seen. Good thing is that each time, the symptoms are not as bad. The Remicade is working. YAY! Just had another flare up that lasted a month but no hospital. Things are getting better. Thank heavens!
You've been through so much. Something as basic and normal as going for a poo is second nature to majority of us. Knowing there are people like yourself that can't and it could happen to anyone is very humbling. You're amazing. Wishing you nothings but health and happiness ❤
My mom had cancer of the uterus in the 70s.the radiation was so strong it killed the cancer but damaged her colon and bladder.she ended up with a stoma and a permanent catheter for her urine. She was a strong woman.She lived to the age of 77,passed away from a brain aneurysm.
You DO NOT talk on too long. Your generosity with your time is immensely helpful to me (63 year old year old Colostomy patient). Do not doubt or question your own throughly winning communication style. It's your strength and I am grateful to you for it EVERY DAY. Thank you, PERIOD.
I am a crohnie with a jpouch! We exist! It’s been rough, but I’m not quite ready for the final step of a permanent ostomy.
Whoa good luck iv never heard of your type it can be rough.
I have jpouch due to ulcerative colitis that has led to cancer.
I have had my Jpouch for 22 years and love it. I have help other understand theirs. If you ever need to talk I am here.
Me too!!! I’m a chrons patient with a jpouch. Unfortunately I battle chronic pouchitis. Seriously considering going to permanent ileo. I did great with my first ostomy. I’ve had my jpouch for about 11 years and have had pouchitis throughout and a twisting at the top of the jpouch/ stricture since 1 year in. Thankfully my surgeon figured it out and untwisted it and dilated it, but it looks like the stricture is back. What would you guys do? I feel at peace with an ostomy, but my wife is having a hard time with it. Any suggestions/ thoughts?
I am in awe with your positive attitude Maggie. Your honesty and fearless discussions on your journey is inspiring. My son was recently diagnosed with Crohn's. He's managing it pretty well so far. Thanks for all the info.
You don't talk too long! Your community appreciates you Maggie❤❤❤
Darn right!!!❤
i had bowel cancer i was given the choice to have a j-pouch or a ileostomy .i choose the ileostomy but when they did the surgery they found more tumours within 2cms of my anus so if i had choose j-pouch they could not have done it anyway .
since my surgery my life has improved so much since that day .
Btw your videos helped me so much to help me through my my early days and plus helped so many others as well .great videos and great content thank you.
Please ignore those comments I love to listen and learn please keep talking you are the brightest light ❤❤❤❤
I have had some serious stomach issues including diverticulitis. The thought of a possible ostomy terrified me. It is good that you showed me that it's not the end of the world and you can live after.
You have been the most helpful “random person” I’ve found on TH-cam, I wouldn’t have got through this last year without your wise words, thank you.
I also had a stricture Maggie which led me to an ostomy. I do not have Crohn’s, I had several bouts of diverticulitis which led to an abscess and severe inflammation causing a very stubborn stricture which resulted in a blockage in colon. I had a temp colostomy during that surgery.. long story short, reversal was tried months later and within a year stricture came back, balloon dilation a few times .. not successful so in March 2020 I was given a temporary ileostomy .. I decided I just felt so much better and 3 yrs later I am totally happy with my ileostomy and for me it’s working fine, I’ve adjusted well and as the saying goes, “if it’s not broken don’t fix it”!!! For me it’s been a blessing, but everyone has to do what works for them.
I love your videos, you’ve helped me so much, talk as long as you want!!!! Sending love to you and Zak and your pups
❤️🐾❤️
Wife of a Crohn's patient (dx in 1984-ileostomy done in 1999) and mother of two more Crohn's patients. I think what you are doing is very important. What I wouldn't have given to have had this channel as we went through my husband's surgery! Thanks for being willing to come out and talk publicly about CD and an ostomy!
I had a J pouch done over 30 years ago and it's been good so far. Just putting something positive out there. 💕
Thanks. Only negativity around the j pouch
I had the j pouch surgery in two stages, had some issues, and got an ileostomy again to give my j pouch a chance to heal, which was supposed to be temporary. I've been wearing it since November 2018 and I still struggle with it. I've had so many issues.
Anyways, I'm having part one of two reversal surgery tomorrow morning to hook my j pouch back up again and I'm terrified this time.
Can I ask how old you were when you were originally diagnosed? I was healthy my entire life until I hit 27. No family history either.
Thanks for sharing your experience and your decision. I ve had a colostomy bag since March 1st after my emergency surgery thanks to Diverticulitis I have a follow up with my surgeon soon to determine if I qualify for a reversal. However, I have to decide if I want it. A colostomy bag is a lifestyle change for sure but its nice not to have stomach pain etc. I knew I had diverticulitis, and at first it seemed to be a flare up and I wish my Dr had ordered a scan and it may have been treated with antibiotics to avoid this whole thing. Ive sat in on a few doctor's meetings about it. 1 out of 3 fail or have major complications like having to wear adult diapers for life, no thanks I would rather have the bag. Anyways it all depends if I qualify and how confident my surgeon is about the reversal in my case. My quality of life is great right now I dont want it to get worse. Its better then what I had before the surgery. I completely understand what you are saying. My family thought I was over thinking it and being so young that its no biggie. Once I shared the Dr meetings I attended and facts around it my family is more understanding, even though its ultimately my decision.
You can never talk to long Maggie, it is absolutely lovely to hear you talk about these, every video you make is so informative. Thank you so much, i do realize it takes a lot of work putting this together. Very interesting topic. I have a ileostomy for two years now and I am so grateful for the opportunity to have a normal life again.
Thank you so much. Lots of hugs to you and Zak 💐 💐 💐 💐
Thank you for all the information, Maggie. I had a temporary ileostomy in 2019, after surgery to remove a cancerous mass that also included removal of part of my rectum. It was reattached and the ostomy was to give the rectum time to heal. Now I am facing my seventh surgery because the cancer keeps recurring. This time I was told I am going to need a permanent colostomy due to the location of the mass and the removal of more rectum. I am not sure how a colostomy differs from the ileostomy in terms of output, etc. but I have accepted this is what is necessary. I enjoy your channel so much because you always reassure me that I can handle this.
There are a couple hundred people in Europe who've gotten implanted with one of those blockers. The group doing it is in Norway, and they're called "Ostomy Cure".. that said, I talked to a woman who had it done + I've read up on it more in depth, and it's not something I would ever want done (for a number of reasons). I like my bags plenty, and I don't want to mess with success...
Hmm the name is interesting! I'm not I feel like an ostomy needs a "cure", but rather maybe some alternatives! 🤣 thank you for letting me know! I'll have to look into this more!
Tummy issue are not fun
This was the down side to having a resection. 24/7 diarrhea. The anti diarrheal med pushes my stomach into my chest. No bueno.
You popped up in my recommended a few years aho and ive been interested in your story ever since. I never knew your condition was a thing before then but im so glad to be educated and understanding of other peoples experience.
Thannks Maggie for all your encouragement and the loads of info and experience with us. I just shared your channel with a friend who has a pretty serious cass of UC with fairly frequent flare ups. Congrats on 95k subscribers.
I was told doctors don’t do jpouch surgery with crohns patients. I was first diagnosed with ulcerative colitis so I had a jpouch for almost 20 years . Later I was told it was crohns . Just recently I have so much scar tissue that I now have to live with a stoma unless I try the Cleveland clinic where they do a k pouch for extreme cases. Only reason I didn’t go was that there was still no guarantee it would work. I have had pouchitis several time with 3 fistulas a different times. If I could I would keep my jpouch but no choice for now. Accepting this stoma as permanent has been to difficult for me.
Thank you again for bringing awareness and education on options that aren’t talked about nearly enough. The BCIR surgeons in St. Pete, Florida and California have both retired, but the Florida surgeon trained a surgeon in the UK who is now performing the procedure. There are several k-pouch surgeons in the US who are able to work on BCIRs since the two pouches are so similar. There are quite a few patients who have had their BCIR pouches fixed or revised into a k-pouch by the current surgeons available. Thank you again, Maggie! I’m glad that you’re feeling better! ❤
Actually, I subscribe to a lot of vloggers like you. Those people with medical conditions. I'm going through the same with sleep apnea. Just watching your videos makes me feel that I'm not alone in this. Thanks for the video! :)
U never talk to long
Hi Maggie. I have UC and had a temp ileostomy when I was 15 to allow my JPouch to heal. I almost died by the time they believed there was something more wrong with me than hemorrhoids! I am now 48 and have severe anal strictures. I have to have dilations in the hospital about every 4 months. The surgeons keep telling me that I can’t go on like this-meaning they want me to convert to a permanent ostomy. My main problem with the ostomy is that I have super sensitive skin and then skin around my stoma was always raw and bleeding. I’m terrified that would happen again and then what? There are only so many options for us. So I feel your pain.
You spoke about incontinence. I wanted to tell you that even with a JPouch you are not completely continent. My problem is leakage when I sleep. It’s terrible. My spouse sleeps in another room. He never said why he decided to do so, but has for about 10 years or more. Its a sad existence at this point. Thank you for speaking out on the matter.
Thanks for everything over the years. I am happier and healthier because of you.
It’s staggering how much you have suffered and still are! Love how you are so strong, sweet and kind through it all. Keep being you. ❤
I had a BCIR FOR 32 YRS. I just went to an external ileostomy due to blockages and an infection. I wish I could have kept my BCIR.
Honestly I enjoy your videos and think they're too short. I wouldn't mind a 30 minute video because I like hearing about medical stuff. That's just me. This was all fascinating though. Thank you!
Keep talking sister!!❤😂🎉
I find your videos to be enlightening and helpful. I deal with IBS C and diverticulitis. The majority of the time it's 2 maybe 3 weeks before I have a bowel movement. When it does finally kicks in, it lasts for hours and I don't always know which end to put over the toilet. I get very pale from it, and I'm normally pale, it wears me out. I get the urgency to have to go but can't, or might just pass mucous. I've been dealing with this since my early 30s.
Dear maggie you are such a nice person helping people with colon problems and putting their minds at rest.❤❤❤❤❤❤
I love your earrings they are so beautiful.
Hi maggi.after my colon removal i stitches and discharge from stitches.i have 9 months finished after surgery but still i have discharge.after surgery u have this problem and what u done for recover from that.i have permanent colostomy.still i have problem to sit down without soft pillow.plz just let me advise something for relief.
They tried to do a reversal on me twice, but unfortunately, my small intestine kept twisting.
Maggie, I've commented on your channel before, and had it not been for your sharing your story in such a personable manner, I'm not sure where I'd be today. Although I didn't deal with inflammation or strictures, I did experience the same embarrassing daily mishaps and I wasn't sure that I could deal any longer. Fecal incontinence controlled my Life, (or lack there of). There was one more option offered me before electing permanent Colectomy surgery and that was an InterStim implant. One more thing to put my body through without a guarantee for success. In fact, my Gastroenterologist asked if that surgery offered 10% improvement, wouldn't that be better than having a Colostomy for the rest of my Life? Ah... NO, it wasn't! Didn't seem like any real trade off, having the same issues plus anxiety 90% of the time! My Colostomy has been a "One and Done". I'm living a full Life, and just want for others to know that even though some times decisions can be difficult, we need to do what works for us. You erased that fear, and you can blabber on as long as you wish on Your Channel. You were and still are My God Send. Thank You So, So Much.
I had a reversal after my resection ( UC). I now have Crohns as well. I cannot have another resection because I now have pancolitis ( my entire colon is scarred with UC). My Crohns is less severe. I have two friends with jpouches and they both have cancer. I would not opt for a jpouch.
I have a j-pouch and have been having a rough journey with it. It was good for about a decade but in 2020 I started experiencing prolapse, chronic pouchitis, fecal incontinence, and pain. I had revision surgery for my prolapse in 2022 but even since then I've been battling my pouchitis and am so sick and tired of dealing with these issues. I'm going to be consulting with the Colorectal surgeons at UW in Seattle to hopefully figure out solutions but at this point I'm ready to go back to an ostomy.
I get the scar from massive infection from bowel ruptured. Strictures x3 plus. Leak bad from blaffer and bowel. Because of the scar tissue they don't want to touch me. It sucks. Xoxoxoxo 👍 😢😢😢
On March 1st, 2024,I had my anus and rectum removed 😢. I am new to this way of life but I am alive and they believe they removed my cancer. Looks like I will need a bit more surgery in July because my stoma has grown sideways facing down to my left hip. I have pancaking due to my opening position downward. Have you heard if this happening and what can I do to help out this condition?
15:58 You're probably talking about Palms of Pasadena Hospital (now HCA Florida Pasadena Hospital after a buyout about 10 years ago) in St. Petersburg, FL. Unfortunately they no longer do BCIR. It seems that their lead surgeon doing BCIR had several bad outcomes (with other surgeries) resulting in several Med-Mal claims. I believe they, unfortunately, discontinued BCIR there in 2019 and closed their 18-bed specialist BCIR unit.
Shoot! I read up afterwards and saw he retired, but didn't quite know the full story. Such a shame!
Another great video thank you Maggie!! I've been on the crossroads of keeping my stoma or reversal via j-pouch ... think maybe I'll keep my stoma ....although I have a hernia and also 2 fistulas so that will need to be fixed ... it's all so unknown! Anyway, great video and hope you are doing well :) xx
Doing a reversal can be be quite dangerous if it fails you become septic with kidney failure... Rip Charlie
I found you when I had my ostomy and desperately needed advice and an ostomy pal, and you were it! You made me feel so much better, more confident and normal. Now I'm post ostomy and I still love your channel. Thank you so much for what you do. You're the best!
Hello dear at 7 years old I had ulcerative colitis, this was in1960. I had it for three years they tried all kinds of things. Eventually in 1963 when I was 10 I had a illeostomy. Trust me in those days it was really different. Hard to get supplies, it was a black bag with a belt, it took a hour to change my bag. I also wore a panty girdle to smooth things out. I had it for 20 years. I had three revisions on my bag due to pregnancy mostly. So after my three children when I was 30 the Koch pouch had just come out. My surgeon had learned from Dr. Koch so this was 1983. It was scare because all I knew was a bag since I was little. I'm 70 now so I've had it almost 40 years. I only had one problem 15 years ago, but nothing since. I empty it with a catheter about three times a day. More if you have the flu. Sometimes when I worked in the hospital I couldn't empty it for 12 hours till I got home . that could be painful if you have gas or ate alot. One time we took a trip and I couldn't empty it for almost 24 hours which was painful. I can't complain I've been blessed to be here for 60 more years and I would have bled to death. So like you said " find the right thing for you" take care🌹❤🤗
thx for info iam alot older than you but i been going thur for about 3 or 4 years not be able to do normal bowel moments and i do get leakage also and when do my bowel movments i sit and strain and only little bit comes but weird thing i have no pain or signs i have lost weight but not a ton have talk to my doctor about and he just dont want to seem to get to problem he just keep telling take more fiber and when i do have to go its right here and now been couple times i could not even make to bathroom up untill 3 to or 4 years ago i had no prob going to bathroom and my job is over the road truck driver so bathroom can be far and few in between so i have to use incomitance products at times so i dont get embarrassed solution i love my job but if i cant get a handle on it i may have retire from job and i love to work as driver
Hello, my favorite vlogger🥰
After 27 years the doctor wants to move my stoma to the left side because of a hernia which has been repaired so many times. And can no longer be repaired. I have had a lot of blockages because of the hernia. So that's what I have to look forward to. There's a lot of scar tissue so no idea what they will see once they get in there.
After struggling for 8 years with a J Pouch, I'm going in Monday to get my stoma back. I really appreciate you Maggie, so thank you for everything!
Good luck!!! I hope everything goes amazingly for you Monday!!
@@LetsTalkIBD Thanks, Maggie! ❤
I just switched back from a J pouch to an ileostomy and I feel so much better! Going on 6 weeks. Good luck on your surgery!
@@carolynnewcomb2153 That's *awesome* to hear. Thank you so much!
Hi Michael, how did it go?
I’m a new Ileostomy patient & it just happens the woman across the street was talk into having it undone & turned into a pouch of some kind & she hates it & her body shows how much it didn’t work she’s so so skinny/ anorexic and wishes she hadn’t listen to that surgeon… I hate my stoma and Ileostomy, but I’m new with the problem I’m having due to the reason emergency surgery was done and my 15 pound colon was removed & I fill better in many ways than I have in 20 years of being weak, malnourished & wow the pain every time I had to pull a rock from my behind and still have 10+ pounds in there I could ever get out. So I hate to just stop eating EVER & I don’t want to try another major surgery to creat something & have pain & problems of any kind again… even though I’m not feeling great about this little shit hanging out my side burning me constantly and making a mess that being so disabled I can barely deal with, but I’m alone & healthier than I’ve been in 20 years & just don’t want to go through what could be “worse” like my Niebor is??? No thank you!!! I’ll keep my “ little shit” as I call him & only because the second that bag comes off since the day I got it & had a nurse for over 2 months come and change the bag & every time not matter what we tried he shoots in the air like a baby boy, so he’s my little a-hole!!!🤭❣️❣️❣️ Thanks Maggie for all info you share hear, I still watch on of your pouch change videos every time I have to change mine, like a football couch giving a pep talk 😉 So luv ya girl❤️❌❣️❣️❣️
Girl; you are a trooper. Thanks for normalising the not so sexy. It’s helps more people than you can imagine.
I have had rectal cancer 3 times. I currently have a stoma and I am also not in control of my bladder because during one of my surgeries, they damaged my bladder and right urator and completely destroyed the left one. I would love to talk to you sometime!
Lots of love from uk
I'm going through the reversal and is harsh and I'm just in the first surgery and two months from now the second final surgery and will see how that recovery goes.
I have a jpouch [as you know, HEY FRIEND 👋 ] and I will say I am considering going back to an Ostomy... strongly. And I had my surgeries over 10 years ago.
Hello Shawn, my husband had an ostomy for 3 years due to UC, he had a J-pouch done 3 months ago... He is 62... Have you had problems for all these 10 years? It's a bit rough right now.. hoping things get better..
@@suzanneharvey4885 off and on , short answer: yes. I started with UC and after my jpouch was diagnosed with Crohn’s. Then I had to start diff meds (very expensive Stelara) to combat issues I’ve had with pain, fatigue, frequency and inflammation. It’s way better than the life I had but it’s kinda like trading one list of problems for a new list. I’m still grateful for it and realize it’s a blessing but idk sometimes I wonder what life would be like without the surgeries and on stronger meds or something
I should have been subscribed. Turns out I wasn't. Hey guys check, it does happen.
Aw thanks!!
No surprise more people are subscribing because you are providing a much needed service. Not everyone is as candid, eloquent, and willing to talk about your experiences, holding back nothing. Also, you share your personal life to an extent, and even share Zak with us. He is such a sweetheart. May I make a suggestion? How about telling us what mL is in ounces and give an example. I looked it up, and the 800 mL you said you accumulated in mucous is about 28.5 oz., so almost 4 cups (32 oz.). If you would have said, ". . . nearly 4 cups" that would have been clearer (for me, anyway.) As a nurse you automatically speak in medical terms, I suppose. Can you dumb it down a little bit for this dummy? Thanks.
Maggie, you are the sweetest!
I've been referred to a surgeon to get a permanent ostomy bag and stoma. It's a scary step, but i know it will ease the pain and discomfort i'm currently in. I'm absolutely terrified. I know i need it, but i'm concerned about how much this is going to effect how i live and the way i function. Watching your videos has helped. Thank you for sharing your journey.
Forget those people with short attention spans. That's what's wrong with the world now.
Everyone that I watch who live streams regularly uses StreamYard
I just love you so much ! U spread so much positivity and awareness. I hope everything works out for you especially having babies . Be patient, God’s timing is best.
I on the other hand suffered from recto-vaginal endometriosis, had a hysterectomy and a rectal resection surgery same time, surgeon did not form an ileostomy initially but did 2 weeks later after some of the stitches ruptured leading to leaking of fecal matter into my abdomen … long story short , got a temporary loop ileostomy and I’ve had it for 6 months. Surgeon is waiting for the rectal hole to close before I can have the reversal. I must say this pass months have been the most depressing, devastating, loneliest and saddest, I have cried more tears than I have ever cried… I have a GGE appointment on the 29th and I pray the hole has closed completely or at least enough to have my reversal. I really don’t enjoy walking around with this bag but you have also inspired me so much. So THANK YOU. ❤
Yippee 95,000!!! 🥳🥂🎉 Congratulations Maggie & Zak. Maggie you've been so informative and transparent, and a trailblazer like no other. So happy for you. I've been a long-time subscriber and still love videos. Keep up the great work!❤
Thank you very much Maggie❤
I’m 71 and I now it so difficult to move my bowel Have force or push around my rectum what should I do to for my constipation
RestoreLax was the answer for me! Drink lots of water. Good luck. ❤️🇨🇦
And again good bless you the period you
I chuckled at the comments of others about you talking too long. I almost always look at how long a TH-cam video is before I decide to watch it. My time is valuable. Haha. But with you Maggie, I enjoy you and your videos, even if they're long. Keep up the good work. 🩷
You are a great couple you and your husband especially what you've been for it
I am about to go through the APR surgery tomorrow and i have been watching all you videos to help me understand what im gonna go through….. you have been a true inspiration for me….. i see how strong and brave you are…. I can not thank you enough for all your help! Xo ❤
Good luck!! I hope you have a smooth recovery!! 🩷
Most of us know nothing about Jpouch etc
I have had one for a year and a half
Thank you Maggie, I went thru some of what you went through, esp the not being able to control my bowls. I was always on pain and eventually my colon died and my stoma has saved my life and the last 5 years with my Ostomy has very much been a blessing for me. Thank you for understanding, a lot of people don't. Bless you.
We love you Maggie ❤
Hey Maggie!!!!! ❤ 😊 👍
I hope you Get pregnant
I totally get it ...after finding all issues are Cause by not having a gallbladder... Constant diarrhea, acid reflux
Omg...I've got somewhat under contral..there are day thought that I got deal with but they are far and few
You talk as long as you want maggie!
I love your earrings today!
First off, this is might be a long comment but I'll try and make it shirt. But thank you so much for the guidance on having an ostomy and how to take care of if. I found your videos and some other TH-camr videos about living with an ostomy back in May when I was diagnosed with colon cancer. I did a month worth of research and finding out what to expect, my surgeon gave me an open loop ileostomy and did a ultralow anterior resection to remove the mass I had in my colon. He said it would all be temporary until I have finished with chemotherapy. I rocked the ostomy from day one I've never had a leak or blow out and I've had it for 2 months so far. I take care of the skin around it and make sure everything looks good. I was alittle embarrassed about having it before the surgery, but I honestly think it gave me a boost of confidence after I had it done knowing I've done real good research on it before having the procedure. I've had amazing support at home with it and my wife is so surprised how well I have done with it. But when people ask me about having it reversed, I tell them sure I'd love to be somewhat normal again, but if there is going to be a problem with holding or constantly having to worry about finding a bathroom in time I'd rather keep the ostomy! I think I've grown quite attached to it so far even tho it will occasionally make noise when I'm in a quiet room around people lol. I'm also pretty young to be diagnosed with stage 3 colon cancer at 39 and I didn't know I had it for about a year, just letting it go thinking it was work related. But thank you again for the amazing tips and look into your life with dealing with an ostomy! Keep up the good work and advocating you do.
I highly suggest StreamYard HIGH myself, you stream yard, and I’m visually impaired and it’s great
That's cool
I had an ostomy bag for 8 months after literal midnight ER surgery with a twisted bowel. The anaesthetist allowed me to go into a state of panic before going under, saying that all things considered, he wouldn't really put me under otherwise, because my condition was so bad in general health, that you know, I might not wake up. (If I ever care to find out who that bastard was in 2008, I'd go and slap his face very hard, and dress him down loudly in public. I hope he's no longer practising.)
The "general" surgeon on emergency that night, placed my stoma far too high and too small, and I had nothing but grief and bag troubles for the FULL 8 months. The absolute worse time of my life after 39 years of Crohn's disease.
Whilst I staved off surgery until the "big one" of a colectomy with ileo-rectal anastomosis, I'm so glad I did. No more diseased large colon and immediately my general health returned! Although diarrhoea and dehydration was a constant at no different to these symptoms prior surgery, there was no more pain, and I returned to some sense of healthy, that most people take for granted! My rectum managed to take the 'responsibility' of the large colon, to differing respects.
Stayed in remission for nearly 11 years, but some Crohn's has flared again since 2018, which has coincided with that time of my father's long palliative care, and perhaps the stress/strain of that, and with me neglecting my own health.
Now qualified for expensive, but potentially remission-inducing immunotherapy, instead of my earlier regime 11 years ago of Prednisolone and Azathioprine. I'm so glad to report that the Australian Government has the immunotherapy on our Medicare system (after stringent eligibility criteria), so I pay $30 per 8 weeks, instead of $15,000.
Having said all this, I would NEVER, EVER go back to an ostomy bag again. I would try J-Pouch or any other method FIRST. As you say, everyone has different experiences - good or bad.
Thank you for your wonderful videos. I've followed you forever, and have always loved the comments and the community.
I am IBD/UC - Jpouch and now I wish I would have never had the surgery - I am still on the toilet 20+ times a day, so much pain, suicide watch in hospital.. the list goes on
Just subscribed and have listened to several of your videos. I can't relate to anyone with this problem but I like to learn. Plus I really needed something new to listen to. Things were getting boring. Hugs and Luv ❤
Yep☺️👍🙏
HiMaggie! I subbed today. I’m a RN since 1996. I lived where your house is. It’s beautiful there but I moved to Cape May, NJ. It surely is a beautiful place to live too! I don’t have Crohns but I do have IBD. I’ve went from 155lbs to 128 in almost 2 yearsI love your attitude , your garden, your house. Zach is so awesome. You’re both lucky to found each other. Take care and bless you both!
After watching your videos I understand that a person can still live a good life with an ostomy. I felt miserable having uc and just really uncomfortable talking about some of my symptoms like passing gas with blood or blood clots. I often had to sit on a toilet just to pass gas. I have started vedolizumab, hope it helps.
I've had a Kock Pouch for my bladder since 2000 and I LOVE it. I'm in a wheelchair and had the surgery so I wouldn't have to get on the toilet just to pee. I got my Colostomy in 2020 to keep a pressure sore sterile and wasn't sure if I wanted it to be permanent. But, the bag made my life SO much better. I told the Dr. I wanted to keep it 6 months in.
I had 3 bowel blockages prior to the Colostomy and didn't know, until after the fact, that I could still get them. But I know what it feels like, so when I started to get one I drank something hot. For me, hot water (coffee, tea, hot chocolate, etc.) works.
Thinking of a teenage girl having to go through all that (without her mom, you’re dads a superstar btw) and the home dialation 😢 omg no wonder this is much better. Sounds like getting a osteomy is worse to a “regular” pooper lol but damn.. that’s horrific once you explain it 😢 you are a gift from God, Maggie. I read all these comments of people you help with these issues. So so many. So happy your are so much better now , you deserve to feel awesome❤❤❤❤
CfK
You do NOT talk too much! If anything, you don’t talk enough. God bless you.