How I Got an Ostomy | Failed Intestinal Resection & Peritonitis at 16 | Let's Talk IBD

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In today's video, I share the full story of how I got my ostomy at 16 - I mean all the gritty details! Some are able to have their stoma surgeries schedules, but mine occurred as emergency surgery after a failed intestinal resection and peritonitis. My surgeon saved my life with this ostomy, but it was only intended to be temporary. The first six months after surgery, I wanted nothing more than to have it reversed. This slowly changed as I felt myself finally feeling better!
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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

[@LetsTalkIBD]

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[@normabyde4766]

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[@tracychristensenrn2063]

My ostomy saved my life and I am forever grateful for it. I have stage 4 colon cancer, was given 3 months or less to live and now I'm going on 4 years. I couldn't have survived without it.

[@EllieIrelandLaw]

Maggie- it was such relief to hear you say the sound of an ostomy sounded like a relief or a break to you... I am currently living a shell of a live with severe lower GI issues... hours in the restroom, anxiety, pain, fatigue..... last night I dreamed I had gotten an ostomy and when I woke up I cried because it wasn't real. It really hit me then that at 26 years old I would rather have a bag for the rest of my life than live this way anymore... I often feel guilty for wanting an ostomy for that relief, as I know so many people with ostomies have no choice and absolutely did not/ do not want to have one. Sorry for the ramble- just had to share!

[@margievanhandel259]

Sounds like you might be experiencing the same miserable existence that I had for years. Finally the anxiety was so out of control that I only left home to buy groceries and often times those trips ended up being a disaster! I was unhappy. I was SO affecting my husband's lack of enjoyment; just wanted to stay home (My Safe Spot). I finally pulled the trigger, determining that I had had enough! Even though the specialist thought I might want to try one more option, I said NO,and scheduled colectomy surgery. Best decision ever! I have my life back and am ready to hit the road whenever the opportunity presents itself. Good luck with your future plans. Only You know what you are willing to handle, especially, Emotionally.

[@tonyp4894]

@@margievanhandel259 Recently, I had an opportunity to reverse my ostomy operation that I've had for five years after colon cancer. I told the doc, no way Jose. There are so many advantages to having a bag, that I don't want to go back to the old ways.

[@AccidentallyOnPurpose]

Ostomies can improve some people's lives, and hinder other's, and both are very valid experiences. Don't feel bad if you believe an ostomy is the right thing for you, it would actually a good conversation to have with your doctor.

[@susieybarra2620]

Love your channel. You are a delight!

[@MusicalMachineEtc]

This description makes me think of Footless Jo, who got her foot removed due to severe chronic pain caused by a childhood injury. A lot of people criticized her for going through with optional amputation, but the quality of her life drastically changed as she's able to be active again with her prosthetic.

[@michellem8284]

It's interesting .... when I see a new doctor (for example) and they review my medical history and hear that I've had proctocolectomy surgery (removal of colon, rectum, and anus sewed shut) they usually give me a look of "Oh, no, how awful." I have to quickly reassure them that it's really not so bad and doesn't really bother me at all and is, in fact, so much better than what I was dealing with beforehand. I CHOSE the surgery. I was so sick and tired of being sick and tired that I ASKED for the surgery and one of the reasons I was brave enough to go forward was people like Maggie who share their positive stories online. Thank you for all you do!

[@sandraalcon253]

How brave you are!! I really can't imagine a proctocolectomy, even the word is large and hard to say. Thank you for sharing and helping me to see there are many brave warriors out there. Shine on!!

[@jenniferdignan8507]

Wow, the science teacher seemed kind of rude about it. It's not like you were getting cosmetic surgery in the middle of the school year.

[@LetsTalkIBD]

He actually wound up being the most kind and helpful afterwards! He came to my house to teach me and would chat with my dad (which I know my dad so appreciated)! I probably didn't articulate how serious even the resection was either

[@jenniferdignan8507]

@@LetsTalkIBD Aww, that's good to hear.

[@pjk1714]

I had the same response when I had mine knowing I wouldn't start my year on time. It was brutal going back despite scheduling the day after the last year ended.

[@mariannagalligani8854]

As always, thank you for sharing ❤ Anyone else absolutely disgusted by the teacher who was frustrated that someone had to have SURGERY because they would miss class? Unreal.

[@Bluebloods7]

Teach; this surgery will save my life. Science has no value to me if I'm not alive.

[@Sandgee62]

Maggie, again, wonderful story. I have had my Crohns since 1985, but at least I was 28 when I had to start dealing with it all. Your statement towards the end is exactly what I have said over and over to myself, if I could go back to the beginning, the years of medication that did nothing, years of IV’s that destroyed veins, and years of taking my large and three quarters of my small intestine, piece by piece,I would have skipped to the Barbie Butt and Ileostomy immediately. When you have been as sick as we have been, I too spent weeks in ICU way back in the late 1990’s, because my intestine had so many holes I had to be kept open and just packed and repacked for two weeks of cleaning me out. I was pretty much out of it with all the sleepy juice they pumped into but my brothers and parents said that they were not sure I would make. Inside of me, which I think has clouded my life, was my reaction to the drugs because I thought people were coming to bury me and hold a funeral. I screamed and screamed but did not make a sound. Twice in my life I had to go through it. But, we survive, we go on. I am sixty now, but my brain still thinks I am 28. Was a smack in the face at my 60th birthday last summer…. I was alone during it all, meaning I had no people who were going thru the same thing. Maggie, keep on going and tell your story. One day, maybe I will also.

[@asherrogers2687]

I had to keep checking your name because our stories were so similar. I kept thinking I must have already left a comment. I always tell people that I look through my eyes as if I were 28. But then I pass by a mirror and reality sets in. Take care :)

[@Sandgee62]

@@asherrogers2687 Exactly. 👍

[@julesbee728]

@@Sandgee62 THANK YOU for your comment! My Grandma had Crohn's, I have UC (since 1989) and am also a nurse so I have seen many people struggling with IBD. I feel VERY FORTUNATE that I have had only one severe flare that put me in the hospital, on TPN, for just shy of a month. Doctors initially advised a colectomy but I pleaded for conservative treatment which lead to strict bowel rest for the month. Ultimately I improved, was evaluated at Mayo clinic and have remained stable on meds since. What I appreciate and LOVE most is your comment that you are 60 (I will be 62 next month) "but my brain still thinks I am 28". It resonates and hits home so much for me it nearly brought me to tears. It is, the only word I can think of is, heartwarming to know someone else feels that way. And your comment "we survive, we go on" anyone with IBD knows the struggle. I hope all is well for you. Take care.

[@sweetivorywhite]

I am going through some of what you went through. The only difference is that I am 48. I have had an ostomy since February, and I am so very thankful. As awful as most would think that having an ostomy could be; I suffered for months in extreme agony, to the point that I honestly thought that I couldn’t survive the pain. I lost 30lbs in six weeks. My ileostomy is meant to be temporary. Two weeks ago I had almost two feet of colon removed, plus my ovaries and Fallopian tubes. I see my surgeon next week, and I know that she is going to want to schedule me for a reversal, sooner, rather than later. I am terrified. I am terrified that all of the cysts, abscesses, blockages, and adhesions will come back with a vengeance. I am afraid the reversal won’t last, and I will have to have a permanent ostomy. I have had three surgeries since December, so the reversal will be the fourth. Ugh… anyhoo… love from Canada 😊

[@NorseButterfly]

I'm very thankful you had great care after the resection. After my lumbar fusion in 2012, I had been home for a few days, so I got in the shower. Midway through that shower, I suddenly got very weak, something was terribly wrong. Two days later, my mom took me to the ER. My left leg had turned red and started swelling. The vascular surgeon who had assisted in my surgery, sent me home quickly. I was back the next day, my leg in worse condition. That same surgeon was getting my discharge papers ready for the second time, when another surgeon saw me on his way to lunch. He was taking a shortcut through the ER, and thank God he did! I don't remember much, but things moved really fast. The ultrasound of my leg, according to my mom, looked like gravel had been poured into my veins from groin to ankle. A different vascular surgeon took over my care and banned the original one. I was never told everything that had been done to save my life. I asked the surgeon at every followup. He insisted I didn't need to know. I had to walk with a cane, partially dragging my left leg when I left the hospital. I had to learn how to walk on that leg again. People who I thought were my friends insisted that this was all preventable and that I had done it to myself. I didn't learn the extent of all the procedures and diagnoses until my disability lawyer has the judge get my medical records. It took 6 years to get those.

[@katefish3754]

What happened?

[@rondaherriott]

Not IBD related but parent to parent support related. My son, my husband and I lived at Children’s Hospital when my son was not even 2. It took 2 weeks to even find out what was wrong. My husband had a break down out in the hallway. A parent nearby came out and talked with him about it. She made the biggest difference in our well-being during that wait. When we finally got a diagnosis, even though it was bad, it was such a relief because we now had a name of what we were fighting. Which is exactly what that mom had told my husband would happen. She “celebrated” with us when we got that dx. My son is now 12 and you’d never know what he went through. I am forever grateful to that mom - I wish I remembered her name but my brain was mush back then. I send her good vibes every time I think of her. I hope she feels it.

[@cynthiaakacyndsmith6539]

I thought I was fine, I was not. My ostomy came about due to cancer, from my rectum to the transverse colon. I to have a Barbie butt. I no longer fight it. I am glad I got it, my colon tried to kill me.. I too am a survivor.

[@sheliamoore6901]

Hi, I wanted to let you know I have chronic pancreatitis and was on TPN for 5 years with 6 groshongs placed on over those 5 years. My story is so much like yours except my eating and digestion and bowel problems isn't from crohns. It has been a very long and painful road to be on. I remember you daily and I enjoy your chats so much. Thank you 🩷

[@kristys7172]

I was throwing up everything before my gallbladder split inhalf, it was full of gallstones, I was 29, I had emergency surgery, was septic, that taste is unforgettable.

[@sallydavidson4471]

I can't believe the doctors let you eat real food after your surgery. I had peritonitis after getting an abscess drained. 6 days after having a laparotomy to drain the abscess I was back in the hospital for emergency surgery for peritonitis and sepsis. I ended up with an ostomy after a 4.5 hour surgery with four surgeons! I woke up in the ICU, on a respirator (Which I wouldn't wish on my worst enemy), tied down! I spent 10 days in the ICU and wasn't allowed ANY food for days! I was then allowed apple juice, cranberry juice and then graduated to jello, applesauce, pudding and a little ice cream. They also gave me TPN as I was getting crabby without solid food. I will say that after my laparotomy, the original surgeon allowed me to eat real food the day after surgery and I think that's how I perforated my intestines afterward! I have delayed my reconnection surgery now and my concern is that i may have too much scar tissue that may create problems. 🤞 I wish you nothing but future good health!

[@sybilkent4913]

That's it - life giving instead of ruining. I have the same feeling. Funny you didn't want the nurse to touch your stoma - I didn't want too - poor Peter, my first ostomy 'teacher'. But I learned so much right from the start to be independent caring myself.

[@kn7807]

Maggie, your videos have been so helpful to me. I was petrified of getting an ostomy…did not want to have it for the rest of my life. My surgery was also emergency. I had severe UC, no drugs helped. I got much worse so my GI doctor had me admitted in the hospital. The prednisone I was on for over a year, and the UC too, had destroyed my entire colon. My surgeon literally had to peel my colon out piece by piece. Needless to say, my surgery took much longer than normal. That was in 2019. I, now, am so grateful for my ostomy. It is truly a lifesaver and gave me back my life. Thanks so much for sharing your experiences on how to live with an ostomy. You have given me so much inspiration and support along the way. Thanks again. Lots of love. ❤

[@ronnielalli6394]

I m a young 74, and I relate to your talks. I was 21 when crowns was not “popular” took 6 years for real crohns 😢diagnosis. No tv commercials. No guy Wtg on line at a theatre. I could never wait on airline line, no concerts, I have to know all rest rooms, still. To see you, I regret not having known more, or given that option. Too late now, I just manage, know all the tricks, all the restrooms. I wonder if anyone looking for part time employment, has to request, no cashier duties. I d constantly have rest room in my thoughts. I must reveal this in job interview. You go girl, it’s getting so advanced, yet so many think of disgust. Good for you passing t around what the hell is it like.

[@patriciaconstantino4669]

Yes! Just like you Maggie when I woke up after my fourth surgery which was supposed to be a removal of stricture and reconnection .. I woke up five hours later with another ileostomy and kept saying as I was so depressed, my life will never be the same. I was extremely depressed!! Well, three years later , my life is not the same with my ostomy!! It is 100per cent better and I have no desire to reverse. I so relate to what you felt that how something you think is so awful actually becomes a blessing!! 🙏🙏🙏

[@kelleyakakillimore]

Loved your story! Just saw your channel for the first time yesterday. I swear our devices listen. Lol. Because I’m home recovering from my 3rd intestinal resection and your channel popped up in my recommended. Couldn’t be a more perfect time to find you. My second resection was an emergency one because my intestines had perforated due to the disease eating away at me. I was filling up with gases and couldn’t catch my breath because my lungs were being compressed. They wanted to med vac me but I wouldn’t let them because I don’t fly. Lol No real pain though thankfully. I have also been put in a storage room! But, I’m not sure when because I’ve been in the hospital so many times. I’ve also recovered in a hallway once. Hated that. Anyway, glad I found you! I have Crohns in my ilium, 33 years so far, and a perinatal fistula being treated with Stelara pretty successfully.

[@barbarawolcott6999]

Maggie, I have watched your videos for about 4yrs. I had an illeostomy while having cancer. Radiation disease has gotten so much worse over the years. I will have a permanent colostomy on April 17, 2024…just two weeks away.

[@staceyhowell5761]

Due to have surgery to form an ileostomy next week. Nervous but also excited to have my life back and leave all the pain, worry and prune juice behind! Hearing stories like this really helps, thank you for sharing.

[@alisoncaronflyingfree]

Oh yes I do know what it is like to throw up things that, as you say, should never come out of my mouth. Thank goodness it only happened once but that was enough. I do not have Crohns but I have had intestinal problems for years due to radiation that I received back in '82 for cervical cancer. That and too many years of stress. Thank you so very much for telling your story. You are an amazing woman.

[@lisahutchins8186]

Sorry to hear this Alison. All the best to you xx

[@KJ4SEI]

I had UC for 20 years and had the dreaded colonscopy every year. In 2007 my GI doc said "it's coming out due to dysplasia." so, June 28 of '07 I had surgery. Went home after about 5 days and in less that a week I was back in the hospital with a high fever. Basically they had taken my colon and left just a bit attached to my rectum. It was supposed to drain but it sealed up and the drainage collected in my lower abdomen. Poked a tube up my bum and all that "stuff" came out so I got to spend the 4th of July in the hospital. BUT, the next summer I got to hike with my son for 5 days on the AT! I NEVER could have done that before surgery. At 65 I am now retired and enjoy working with Eight Days of Hope and Team Rubicon in disaster relief. There is life after surgery, and it is MUCH better!

[@iriswilliamson1133]

maggie, you have the beauty of Catherine, Princess of Wales, and the courage of a lion! thank you for these videos! ❤️

[@melodysmithey3172]

You look so beautiful today! You look like Princess Kate!!!

[@amac6421]

Now that you said that I see Princess Kate too! 👑

[@jackieperkins691]

Thank you for sharing, Maggie. On Jan. 29, 2022, I got so sick from intestinal issues that I didn't know I had, I took a taxi to the ER. I couldn't keep anything down, I was very constipated, I was nauseous, weak from throwing up, and I was feeling very woozy. I, also, was throwing up what a person shouldn't be throwing up. In the ER I found out that I have diverticulitis. Thank you, Jesus, it was not perforated. But they did have to do emergency colostomy. Actually, the surgeon did a resection. I didn't like the idea of having to wear a bag, either. The surgery is reversable after six months. Since I don't want to go through another major surgery, especially at my age, I haven't gotten it reversed. I am so grateful for the good hospitals and medical people we have in the USA but I hate being in the hospital. I do have to wear a bag but it's not as big of a pain as I thought it would be. It's not great but it's not as bad as I thought it would be. Another reason I didn't get the reversal surgery is I thought that if I did get it, I might have a flare up of the diverticulitis and have to go through another surgery. By the way, I use a one-piece bag and don't know how anyone can use a two-piece bag. I'm glad they work for you, though. God bless.

[@NostalgiNorden]

Great story!

[@dawnmarie09]

I love your channel! I don’t have an ostomy! I just think you’re a very genuine human. My son had a colostomy when he was a baby it’s been reversed, but he has so much scar tissue that at 27. He ended up with a blockage and has had two surgeries since.

[@denisemedford3799]

I had severe ulcerative colitis and had. Pan-proctocolectomy and iliostomy. I had been on steroids, sulfur drugs, and fed through IVs. Many hospitalizations. In 1985,my hubby and dad drove me to the Mayo clinic in Minnesota on the reco.endation of my doc. 2 days of tests and appointments, and I was scheduled for surgery. I was totally ready but scared, too. I had the surgery done, and like you, I didn't want anyone messing with the sto.a. I did well, got up and walked. Learned how to change the apiance and went home in less than a week. I was relieved and so happy not to be so sick all the time. I had a couple of setbacks, but overall, I did amazingly well. I have never regretted my decision. My younger brother has also developed colitis. He takes an infusion and is doing okay. I'm proud of him because it hasn't been easy for him. The nurses did tell me how impressed they were with my recovery. They said that because I had such a great attitude, they believed it helped me recover more quickly. Thank you so much for your videos. I am now 63 years old, and I am still learning new things from you. ❤ you are appreciated! P.S. My husband has been amazing through all of this. Just like yours.

[@riaavelar8491]

My heart breaks for the younger Maggie that had to endure everything you did growing up. I know it made you the most amazing woman you are today but I just hate how bad it was for you. Thank God for your amazing dad and your resilience. ❤❤

[@karendeakin9628]

You are only person I’ve heard of but me being put in a storage room I got put in there during my first Labour as nurse told me I was fine and being a drama queen! I was surrounded by vomit trays which I needed as my bp had risen to 220/180! I eventually blue light ambulances to city hospital!

[@LetsTalkIBD]

Are you kidding me?! Well, at least we were well-stocked!! I'm so sorry!

[@lethacaltagarone1942]

I had peritonitis due to a ruptured ovarian cyst. It was the worst pain I have ever had. My surgeon who was also my ob/gynecologist doctor said that if i didnt have emergency surgery i would have died in two days. What a scary thought that was. Now I'm dealing with IBS-D. It seems like no matter what i do or what i eat i take the risk of having an accident if i go out in public. Been dealing with this for about 7-8 years and I have had enough. Thank you for being courageous and sharing your story.

[@sherrybohn7050]

Thanks Maggie you helped my daughter at the age of 18 she had the same rectual surgery

[@fionamann1553]

You poor thing, you have been through so much. My dad had colon cancer when i was a teenager. He had a colostomy and I remember the smell vividly, its very distinctive. I vowed i would never have that. Now, many years later, i have collagenous microscopic colitis and spend have the day (exaggeration) sitting on the toilet. Still dont know if i could do it (have a colostomy).Sending the very best wishes to you from Australia

[@kdtfiles1]

I's going on 4 1/2 years with my Ileo, spend a year begging, fighting tooth and nail, with my insurance to let me have the surgery. I'd failed every medication they forced me to try, pills, injections and infusions. Had to get blood transfusions monthly. Was down to 98lbs by the time they finally let me do it. Watching your videos especially, helped me prepare for surgery in so many ways. When I went into get marked for stoma placement I was answering the nurse's questions before she even asked, I knew what everything meant, how to apply/remove appliances. She said I was one of the best/most prepared patients she'd ever worked with. Thankfully my surgery went amazingly well, only pain I had was the morning after surgery, by afternoon I was up - and getting yelled at - and walking the halls solo, apparently they don't like patients just walking off on their own so they put an alarm thingy on my bed. Second day after surgery the wound care nurse came in to "show me" how to do a bag change, I did it myself without her help. SO literally I've done all my appliance changes and the only one I didn't do was when the surgeon put on the original bag during surgery. Life has been so much better not being sick. Output is super watery, haven't gotten that to stop and highly active dure to there still being some UC issues in the last bit of the small intestine. but I'll take that any day over what I lived with for 5 years of being sick. Occasionally I get mini-prolapses, but the skin has always been great and I can go upwards of 10 days between changes most times. I've been cleared for reversal, but I'm not going to do it, Would rather live with a bag than live on the toilet again.

[@deborahsmyth8835]

Beautiful story...I want to hear more please

[@D77711]

You are so brave!! Can’t even imagine what you went through. All the best to you from 🇩🇪

[@miroslavasedejkosir7180]

I admire you. Best regards from Slovenia.

[@tamaraaa3160]

Hello Maggie, all your videos are awesome you the greatest 😊

[@myjoy211]

Such a strong person with a really great message for those who may be struggling. ❤️

[@hollyross8900]

My daughter has IBS but a chronic version as the doctor puts it 😮 But lately when she's having a flare up she's experiencing blood from her rectum so now she's waiting for surgery to see what else is going on. She's been experiencing problems with going to the bathroom since she hit puberty and she's 26 this year so I'm hoping finally she'll get some answers!!! As she's afraid to eat certain foods now incase it hurts or makes her feel sick and in pain.

[@richardahlstrom9694]

You certainly have survived alot. Thanks for sharing.

[@mommabearrival8518]

I am so glad I came across your channel, almost 2 months or so ago! I have decided to get a colostomy bag. I am on blood thinners, and will have to be for the rest of my life. I am also having a horrible flare of my ulcerative colitis, the two don't mix well together. I keep going in circles of losing too much blood and having to get transfusion very often. I am tired of doing so, between the pain, and now it is starting to affect my heart also. So I am grateful for your videos! ❤

[@imaginecastles]

Thank you for sharing your incredible story. I'm traumatized just listening to it. You've done an amazing job getting through to the other side.

[@karencull9518]

Great story. And A lot of it sounds so fimiliar. Thank you! 😊❤

[@magdalenadetoffol6406]

I don’t have an health problems that I know of but you’re such an inspiration to live life to the fullest and not sweat over small stuff. Lots of love to you and Zak. My heart is with you ❤️❤️❤️

[@lorrainesmallwoods7281]

THANK YOU SO MUCH MAGGIE. I CAN SO RELATE TO YOUR EXPERIECES. LOVE YOU SO MUCH. XXX

[@carolynking4828]

Hi there. Thank you for your story here, and what an incredibly brave lady you are!! I will share mine now. In January 2022 I had bowel resection surgery at the age of 57 as my consultant and his team had discovered that I had a stricture in my colon after being in and out of hospital for several years with serious digestive problems. I ended up having about 70% of my colon removed, and then a week later unfortunately I suffered a life threatening complication of a hernia in my bowel which was found on a CT scan earlier one afternoon. So I had to go back into theatre to have the hernia repair, which thankfully was done successfully by keyhole surgery. The resection had to be done as open surgery as keyhole failed. Thankfully I don't have an ostomy, which is a huge relief. Then a couple of weeks later the surgeons discovered a blood clot on my liver, so I had to stay on blood thinning injections of Fragmin for 7 months, and that was absolute hell! My husband had to do them daily when I got home from hospital, and I ended up absolutely covered in bruises all over my thighs which were absolute agony! I was in hospital a total of 3 weeks, and even now I'm still struggling to recover. Anyway I'm taking one day at a time, and I'm just glad to be home. Obviously I'm not working, so I can take life slowly, so I do! I still have bad days, it's very much an up and down thing, and of course if I eat the wrong thing, then I get really ill. Our health service here in the UK, the NHS, is collapsing, with a chronic shortage of doctors and nurses, 130,000 vacancies after the no jab no job mandates last year, and now industrial action by doctors and nurses too!! So I absolutely dread the prospect of returning into hospital, as I would have to go back to London, being really far away from home and my husband. Anyway we still battle on, and take every day as it comes, giving thanks for the good days. I only have my husband to look after me, there's no family, so it can be very scary at times!! But I'm a fighter, and we carry on as best we can, and our church friends are very kind and supportive.

[@jaimiejust7365]

What a hard thing to go through at such a young age! And it’s awesome that it inspired you into the nursing field. I’m also an RN, although due to degenerative hearing loss I’m unable to work bedside anymore 😢. I admire your videos and honesty! I’m considering doing some videos about what I’ve been through as a parent through my daughter’s brain AVM rupture and ischemic stroke. It’s a lot and it’s traumatic, but like you said about the videos being therapeutic and keeping the memories fresh, maybe I should!

[@gerria2000]

When I had surgery the Dr mentioned there was a very slight chance I would need a bag. I found your videos somehow. You were a cute, happy person who had one and it made it ok. Thanks!

[@pativy9598]

Maggie I watched you in the early days of your surgeries and I don’t know how you stood the pain. I’m so happy to see this video and know you’re finally feeling wonderful and helping so many facing what you’ve been through. God bless you and your husband. ❤️🙏🏻

[@karenshepler7128]

Thank you for sharing your journey and story, as it's very helpful .It gave you a new lease on life .As I have been going through tests and the reason is because I have pain after I eat anything and the gas ..so over it.

[@meredithmorris2233]

I had to have spinal surgery at 22. I remember all the people who told me it was a mistake, to just hold out and thinking if they only knew the pain. I am almost 10 years post op and I KNOW I would not be where I am and have the life I have if I had listened and not had the surgery.

[@jennyrice2216]

Oh my goodness, what a journey! I'm glad you mentioned that you had some trouble in the beginning with the ostomy bag only because I kind of have the same thing and every video I see of people changing their bags all goes so quickly and with no real clean up. I have had my ileostomy for 3 month now, done 21 bag changes and I still have to use 4 - 5 adhesive removal wipes to get all the barrier ring residue off. I'm so glad everything went well for you in the end. I really enjoy your channel and have learned a lot. Thank you for putting out these videos.

[@ionaglover5635]

Nice to see someone talk about this so openly. I also had crohns from the age of 12 at 19 i had my first operation to split my intestines in two. One end for an ileostomy bag and the other just above left open with gauze covering the opening with the intention of resting the lower intestines and bowl but it wasnt to be. I had total removal of my intestines and bowl so now have a permanent stoma. Long story short ive had my stoma 43yrs and i can honestly say it saved my life. Keep up the good work and everyone well informed. 👏👏

[@spiritmediumclaytonsilva649]

Maggie I don’t have IBD but I love your story and channel and watch you quite a bit. I went to school to be a PA so anything health is interesting. Although pain management is my focus I love learning from you! Thank you!

[@jrz3320]

You are a very courageous young lady to share your experiences. There is no doubt that many find strength from you. I am a "senior citizen" now but I helped my Dad with his colostomy due to cancer and am quite familiar with all things related. I wish you the best, and know that you are helping many people cope. May God bless you.

[@rmh691]

No idea why KZbin suggested this video to me, but I was transfixed watching it just now. You are an incredible person. There is no doubt that your testimony has saved someone’s life. It’s like you say, that what you’ve been through would seem to be devastating and life-ruining. It breaks my heart, not only for you, but for your parents having their young child be so afflicted. The world needs more people like you. I’ve been on this planet for 65 years and have not made an impact on anyone to the degree that I’m sure you have by being so open and honest, sharing your very personal life experience. I don’t think I’ve come across anyone else as awesomely amazing, and uplifting, as you are. You are a beauty as well! XOXO

[@the.reading.momma.22]

Not that I would wish this life and the pain that accompanies it on anyone, it’s so helpful to hear someone else’s story and remind me that I’m not alone. I’ve had my ostomy for 8 years now and it was pretty emergent also, although I knew I was getting it and had 3 days to *try* to process. I was the opposite though in the sense that I was afraid of mine. It took months before I would even touch it or attempt to change my bag myself. I wouldn’t look at it while I was in the hospital and I had a home care nurse come for a couple months post op. I know now that my quality of life is so much better and quite honestly I would’ve been dead long ago if I didn’t get it but I still sometimes long for that “normal life” and wish I didn’t have it

[@marybaker8291]

Maggie I just started watching u love your show I have malrotation have had many female operation all took out many adhesion surgery in 2017 resection over 60 percent took out 2 areas now Im getting infection and abscess they sent to a special coolon rectal doc they said any more infection and they would haft to bag me my rection was 2 sections and ware its reconnected is ware i had a hole this last time they said not enough colon left to work with thats why bag if I get sick again Im just scared I drink lots milk of mag Im IBS with C first surgery was when I was 12 now Im 58 so sad always feel sick eat for a couple days dont eat for a couple days depreciation very loving and understanding husband watching u helps me prepare and know if it comes to this it will be ok and Ill live thats the main thing please keep your channel going it helps so much My mom died when I had my hysterectomy ng tube which ive had many of times but your case is the worst of the worst but u are so strong and God gave you a purpose to help others ty for your channel

[@kjzeigler]

I also had an emergency ostomy after having peritonitis. I had my resection 10 years before it failed and I became septic and nearly died. I also thought the life I knew had ended when my husband told me they did am ostomy. Now aftera year, I wish I had just had the ostomy done instead of the resection

[@rocoosp70]

Right there with ya. I have fistulas Crohn’s.

[@Chorkymom]

My daughter does as well, 2 now, she’s 21 and freaking out. She just cries.

[@nixagotay8540]

Thank you for sharing. Dealing with many of your symptoms since 2005; colitis, IBSM have had jeyunal obstruction but still no Dx. Dealing with pain 24/7. Tired but not willing for this to beat me. Pls keep us informed. Many blessings from Puerto Rico 🇵🇷

[@debbieblair3329]

Thank you so much for sharing this,

[@kare8502]

I just found your channel today. I’m so appreciative of you sharing your story and experiences. In 2019, at the age of 57, I had a volvulus of my sigmoid colon. I’d had no prior symptoms or diagnoses of bowel disease, other than “tortuous colon”, identified when I was in my 30s. The initial surgery was a left hemicolectomy. I had to have an ostomy that prolapsed 3 weeks later and had to be redone. I had postoperative ileus ater the revision, which resulted in a PICC line and eventual discovery of 2 large abdominal abscesses. I was so sick and nearly died. The recommendation was to wait a year to reconnect, but the ostomy gradually prolapsed again to a point where they were afraid there may not be enough to reconnect. So they did the reconnection 5 months after the first surgery, then had to redo the reconnection 6 months later because the connection site kept collapsing in on itself and causing obstruction. I went along fine after that, but had another volvulus in Dec 2021, at which time they removed the rest of the colon. Since I still had my rectum and it was in good shape, I opted to have a direct connection (no J-pouch). Now a year and a half after my last surgery, I’ve finally hit a pretty good stride with managing quality and quantity of output with diet and a few key supplements recommended by a functional medicine provide). I typically have 6-8 movements a day. I use a ‘travel bidet’ to avoid soreness around the anus that toilet paper alone would cause, and I’m fortunate not to have incontinence. I’ve wondered and worried that my sphincter muscle may weaken with age, and I’ll have to eventually require an ileostomy. Hearing your story and learning how you’ve adapted has made me less apprehension. I feel reassured that if it does happen, I’ll still be able to have a good quality of life. Thank you again for sharing what has worked for you 💙

[@roygbivire]

Prune juice is a warrior's drink

[@richardsimpson9902]

What a wonderful attitude! I had issues from diverticulitis 2022 which resulted in a fistula requiring surgery in 2022. My sigmoid colon was removed. What i didn’t expect was a osmotic bag when I woke up! I was in my late 60’s, never in a hospital. MentallyI was a mess. 11 days later i was sent home by myself to care for thinking it would be a few weeks and be removed. No. 6 months later they tried to rejoin my colon but no, i then got an I’ll ileostomy for another 6 months. Removal was terrible. Another 11 days in the hospital. Feeding tube. I wanted to die. This is September 2023 and i continue to watch your story and can relate so well. Thank you. Today no bags, feeling fairly well, with multiple scars which remind me how miserable I was. Keep telling your story so others can find hope.

[@crystalebner954]

Im going through the same thing, had thr same surgery and woke up with a bag, dr told me i will only have it for 6 to 8 weeks just so my would could heal (when connecting my colon back together it tore), im so scared that i will have this bag forever!!

[@richardsimpson9902]

@@crystalebner954 good luck to you. I had the same surgeon each time but two different hospitals which makes a huge difference. I had to have a Gastro tube for three or four days. Had the fistula and ostomy bag surprise for over six months. Because of staffing went to another hospital to get it removed and colon attached but he wanted to make sure it didnt leak and healed properly. Woke up with an illostomy for another six months before it was finally removed. Almost one year to the day for all of it. I guess many years ago this would not have been possible so we have that to be thankful for. Today, no bags, no issues I know of, large scars no diet restrictions except PORK does give me indigestion? This work posting does a wonderful job explaining her journey. Way worse than mine. Bless her.

[@crystalebner954]

@richardsimpson9902 oh my goodness, why did you have to have your bag longer

[@mickmiah7605]

TY for your entire channel you are precious. Your story is a complete horror and I feel for you. I, too, have Crohn's disease and frankly it has ruined my life. The inflammation always hits me in the mood. I think my Crohn's came on when I was 19 at least that was the first time I passed a large amount of blood. I was diagnosed when I was 42. I always wondered why my mood would absolutely crash and I would have no energy to move- my perception of myself was not as someone who gets depressed but as someone who worked hard. It ruined my career as a Nurse and then as an IT tech and without the support of my wife I would have ended my own life. Abludiblumab and Mercaptopurine has kept me tolerably well with the Crohns still active but under control and most of the most distressing symptoms kept at bay. When I actually leave my house I plan toilet hop to toilet hop just in case. I do wonder whether an ostomy might have been better for me than just carrying on. I do hope your life is good now. Best Wishes to you and the Blonde feller who I presume is Hubby.

[@ashleyhuffman4969]

Although my total colectomy and end ileostomy was a scheduled procedure I also expected it to be the most terrible life altering thing. It has been quite the opposite and changed my life for the better. I was so sick because of Crohn's disease, primarily Crohn's colitis and tried on several biologics, iron infusions, etc for 8 years until I was in so much pain and exhaustion I could no longer take it. I had several strictures and could barely eat. I'm 6 months post ileostomy surgery and am active, can eat anything I want and finally am in remission with no nutritional deficiencies. I wish I had the surgery sooner! Thank you so much Maggie for sharing your experiences. Your story gave me the confidence that I could get through this. Your videos helped prepare me for life after surgery and helped me feel less alone. ❤

[@marikotrue3488]

As always I am amazed at the intelligent, detailed and good-natured presentation of this data. I know that there were difficulties with your Mom and her struggles but I wonder if her medical knowledge and attitude helped her daughter survive these emergencies emotionally and mentally. I have had some intimidating experiences in regards to medical procedures, but nothing at the level discussed on this channel. It can be difficult, but I highly recommend that you speak up for yourself (not in an adversarial manner) as much as possible. Casually ask, if you can talk during the procedure. I was having a highly scary, but not painful, procedure done on me fully awake. The physician working on me said sure. I tried to ask a few relevant questions and then made a joke about the procedure. I cannot fully explain the rush of confidence I regained when I made him laugh. At that moment, I was not as scared or as depressed as I had been earlier. It helped me to get through that day.

[@chrisp7548]

Thank you for sharing.

[@davidlaroche4537]

I had colon surgery for cancer… supposed to be in/out in 3-5 days. First two days not bad. Over weekend after surgery, I got a fever. My resection had failed and I got peritonitis, then back into surgery 5 days later. I received my stoma during that second surgery to repair the leakage. Then, spent 20 days in the hospital. I was not eating well after that and they gave me two more tubes down the nose… ugh. Left hospital finally and spent two weeks in rehab. Then home care for two months… Got to tell you, I understand your feelings. Got a big decision to make in a year from now… my stoma is reversible, do I get it reversed? After my first experience, I’ve got a lot of thinking to do. Time in hospital and rehab have made me ‘gun shy’ of fooling with my gut. Thanks for sharing Maggie !!

[@sandraalcon253]

Wow, I am so thankful to hear your stories of your journey with a stoma bag. My husband got one on the 24 of may and was in the hospital for 5 weeks and in the beginning they tried to heal it with antibiotics and other things, he had tubes inside of him all over the place, but when that failed they had to do the surgery and it looks like he was actually gutted! Huge cut. We did not think he was going to make it. Anyway I would like to find your video of the one where you didn't want the stoma for a while, because my husband, I think although he hasn't said anything, doesn't want it either. I don't know how to help him with that thought so I always help him with the changing and cleaning so he doesn't hate it so much. He was told by the wound and stoma nurses and surgery trauma doctor that the stoma saved his life. That made it a little better. He is a cowboy/rancher and he isn't able to do all the things he loves and I am wondering if there is some kind of therapy that you know of to help someone so strong and able minded with. Thank You

[@mikebravek3771]

BE AWARE OF PARISTOMAL HERNIA WITH AN OSTOMY. I HAVE A NICE SOFT BALL SIZE ONE

[@janwilloughby1384]

I agree the pain was really bad!!!!

[@hannahmaxwell7289]

I would be very interested in a video discussing more in depth your decision to keep your stoma, and not try reconnection. This channel is so informative, I really appreciate you sharing with us! It takes a lot to be vulnerable enough to share a story like this, you rock Maggie!!

[@sandraalcon253]

I to would like to know why she wants to keep it.

[@jackiebeans2689]

Thanks so much!!!!💕💕💕💕💫

[@teijaflink2226]

Good the ostomi ended up being the right thing for you.

[@karenrockemam7921]

You've been through a lot at such a young age and have a really positive attitude and outlook. I had a perianal abscess that caused sepsis in my 40s. You're not kidding about that being an extremely painful area! I remember being pretty out of it waiting for surgery but watching my BP on the monitor going lower and lower. Was in hospital for a week, off work for a month, couldn't even sit right for about that long, one more surgery, and thankfully no problems since. Thanks for sharing your very personal stories.

[@helengarrett6378]

Oh dear girl! This is a horror story for a little girl. It hurts to hear this. I've heard you tell this in part before but this rendition was complete. It makes you who you are but what a hard row to hoe for a child.

[@zerolightness6674]

childrens hospital is one of the best in thecworld people come from all over the world to go to childrens hospital.❤

[@moniquehebert178]

We have lots in common!

[@peachxtaehyung]

Yes omg the process of gettig the bags to stick and taking them off is like torture sometimes lol. I have a urostomy that i got in 2017 and oml they didnt know how to get it to stay on and it was constantly leaking. And it ended up where my entire lower abdomen was rashy and everything to the point where it was oozing constantly which made bags even harder to stick! Finally we started putting liquid bandage on the rash (idk if that is ok to do but we were desperate) and finally started healing after like 2 or 3 months of it

[@EricMoore538]

You have beautiful eyes

[@Waywardtrickdogs]

I’ve had IBS symptoms for most of my life (there’s no way to diagnose IBS but what I have is being managed how IBS is managed. Supposedly since I was a kid .. I’m in my 20s now) .. still learning to cope with it (I’m scared to eat almost anything because sometimes I can eat something and be ok and other times I could have symptoms). I have found a few foods that have never caused me symptoms (which means I won’t starve if I become more scared of eating)

[@OlisaPrice-qq1wm]

Maggie when you get your ostany? And what happened right after you reserve your ostany ? And what was your feelings right after you get your ostany Maggie?

[@parkertruluck]

I have lots of gut/health problems, everytime you mentioned prune juice I almost vomited.

[@davidlaroche4537]

Thank you. Your experience(s) and sharing helped. ❤ I had colon cancer surgery first and then complications set in (with fever) and they had to do a second surgery 5 days later due to leakage where section of my colon was removed (peritonitis). After that surgery, I received my stoma/colostomy. I was not pleased since my dad had a similar cancer with a stoma, and he was not the same again. I was hospitalized for 20+ days with about 2+ weeks of NG tube(s), IVs, pics, etc. More CTscans than I care to count. Finally, got sent to a rehab center to learn to stand, walk and swallow. Home care was next. It has been a long ordeal, but I am slowly getting my strength back and doing some ‘normal’ stuff again. Next ordeal… my stoma can be reversed… do I get it done in 12 months from now hoping NOT to have a similar ordeal? Or, do I keep the stoma/colostomy? Big question. 😮

[@davidlaroche4537]

BTW, my wife found your KZbin channel and told me about you. Your videos are quite good. I am struggling with changing my shield/bag. I have mastered emptying it… at my age, I have some adjusting to do. I’ll see how it goes. Once again, thank you! ❤

[@tanianigelwade8935]

Yip I maybe older but I have been through the same things. No ostomy yet. So much pain. Xoxoxoxo Throwing up poo 💩 sucks. I had 3 months in hospital ICU. Strictures suck. The Dr's don't want to do more harm. I hate the pain, being tired getting blocked all the time. I hate it 😒. What's next. 😢

[@blondebobbi4505]

I know about those 5 hours in the bathroom!

[@HeatherSchumacher-je5zz]

Is there a way to talk with you about being sick and continuing a nursing career, without leaving a comment for everyone to read? If not I totally get it. Just had a couple questions to ask you.

[@LetsTalkIBD]

If you want to send me an email you can! I am a little slow to respond so I apologize in advance if it takes me a little bit to get back! My email is [e-mail]

[@ImMichelle93]

I have a question out of curiosity- I swear there's no intent behind it, it's just not something I can google lol- if you had spoken up about your pain earlier, could it have upped your chances of getting it reversed later on? Or was it going to happen the way it ended up either way? Not a chrohn's sufferer, but I'm a spoonie too, so I understand your experience as a long-term illness/chronic pain patient. ♡

[@bershkha1]

I really really want to know can you have coffee with crohn's , does that trigger in any way

[@ghost105st]

What ruined my life? It was my crohn's disease and colitis disease and me have body rash

[@luciedvorakova2167]

I don't understand why your surgeon attempted the resection, when it was known that you have the rectum narrowing causing you severe constipation. I think this complication was therefore entirely predictable...

[@pjk1714]

It's called a patch up until we meet again. That's the mindset they still tend to have unless you can advocate for yourself.

[@kristys7172]

Why weren't you on iv pain meds?

[@LetsTalkIBD]

Oh I was! Haha thats why I don't remember most of the day leading up

[@NostalgiNorden]

Great story!

[@NostalgiNorden]

Great story!