What I've Lost After Colon & Rectum Removal | Intimacy, Infertility, & Adhesions | Let's Talk IBD
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- Äas pĆidĂĄn 30. 05. 2023
- Having your colon and rectum removed and your anus sewn shut (also known as panproctocolectomy or proctocolectomy surgery) is not an easy decision. It took me a decade from begging my surgeon to reverse my stoma to begging them to make it permanent! In this video, I reflect upon the things I have had to give up because of this surgery. Even with infertility, pain during intercourse, extensive pelvic floor therapy requirements, and scar tissue and adhesion build up, I am still glad I went through with it.
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*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.
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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. â„ #ostomy #ibd #chronicillness
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Thank you so much for tuning into the video! If you liked this, I'd love if you subscribed! â€
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Good for you and you have really nice beautiful bright white eyes BTW :) and, my sister couldn't have kids either but they eventually went to a local adoption clinic, where they got accepted and the mother that they qualified for ended up having 2 twin brothers. Not long after that she did finally get pregnant, I'm not saying that is the case for you but I think that could be something to think about! These boys got a very loving home, they still communicate with their biological mother but they are completely at home with my sister and her husband, who post pictures of them every day lol... All the best to you:)
Conventional medical doctors are stupid when it comes to Crohn's. Crohn's can be reversed without surgery. However, only functional medicine doctors know how to reverse disease. I'm sorry you've had poor medical care:(
@LetsTalkIBD Iâve been a subscriber for many many years!!!!!!!! Love your videos!!!!
Did they remove your ass đ?
I'm a female retired trauma surgeon and you have my utmost respect. Hardly anyone in your circumstance would be talking about this. You got guts....uh, balls.....uh....you're an Amazon đ đ .
Hahahahaha thank you so much, I love this comment!
A Jeff Bezos?
Amazing?
@@bigmacbricky4866 Amazon, as in the mythical Greek and Roman warrior women.
She is an incredibly brave lady and commendable in sharing such a difficult situation
I had this surgery years ago. The only thing I lost was all the pain and misery I was going through. Because of my colostomy (33 years now)and the proctocolectomy surgery , I am headed to my 74th birthday in August. I had no clue that life could feel so good! Itâs like having life and life more abundantly.
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Happy early Birthday Joyce!!!
Blessing you for an early 74th birthdayđâ€ïž
Happy early birthday!! I hope life is treating you well right now đ€
How bad does it need to be? I'm sure surgeons have some kind of threshold, like not being able to work or being on long term pain meds or whatnot.
In 2017 my partner was diagnosed with cancer. A scan showed half a dozen large masses in her abdomen. Surgery was scheduled immediately. But when the surgeon had her opened up, he discovered that her entire colon was covered in cancer. So he removed it and created a stoma with the end of her small intestine. Well, she was shocked. It took some time for us to adjust to that, and using the pouches etc. We found a support group that she joined. There was a 22 year old man who spoke to the group about having an ostemy pouch and he loved to do competitive cycling. He talked about how if he ever crashes at high speed, it was going to be a mess. But he refused to let that slow him down. It was something she needed to hear. So thank you for sharing your experience.
does anyone else see the irony of a nurse worried about losing her position if she doesn't recover and return to work in a specified time period?
Also you are probably the most transparent person I've seen on youtube. Such honesty is refreshing.
I thought that too. How perplexing. Medical staff being fired for taking too long to heal. God Bless America đą
@@queenofswords420 It happens all the time. I have had to deal with this as a nurse patient. They donât like you taking time off from work.
That's how it is. Our healthcare system is beyond broken.
I have watched this with my aunt so much. They work her to the bone and nag and harass her to come in anytime she's off work for a holiday or vacation
@@OceanMomma13 Bless her heart. Iâve been there and done that. They try to make you feel guilty. I didnât. Iâm retired now from a very bad back due to nursing.
My story is too long for a comment but briefly I contracted UC at 28, had a portion of my colon removed at 35, 10 years later a surgeon connected my small intestine to my anus and I lived for years without a pouch. What I was not told was that UC can manifest itself in the anus and that happened so eventually I had my anus removed and a stoma created again. That was 20 years ago and I am now cured of UC. My recovery was about 3 months but now I am fine except for occasional leakage problems. We are warriors who survived and still managed to have a life after our disease. Thanks for your videos. I am a man and before each surgery I was told I could have problems with ED. Thankfully that never happened. Courage and be of good cheer!!!
Where do you from if you don't have an anus?
I had ulcerative colitis from 11 yrs old until 24 when it was so bad that I couldn't take it any more and I decided to have pan procto-colectomy surgery. That was 35 years ago and I don't regret it for a minute as it gave me my life back. However, I did have trouble conceiving a child so went down the path of IVF which thankfully resulted in a son being born 10 years later. Interestingly, I conceived for a second time 3 years later without any intervention and had a daughter. I am very thankful that I was able to have children even though it was a difficult path at first. Please don't lose hope yet, keep trying and look into possible interventions. Sending you the best of luck, Maggie. You are amazing and so inspirational!
Did they inherit your condition?
@@williamparker7025 fortunately they didnât.
For anyone who has had this surgery, you put me to shame. There are no words. I honor each and every one of you. May you have the happiest and healthiest lives ahead of you. You are warriors.
this is funny to because this surgery wouldn't be needed if we did not invent the auto immune disease that causes it to be needed in the first place though.
Miss Maggie. I have been following you for a few years now and I am confident in saying that this video today is the most poignant and impactful one I have seen. Thank you so much for sharing and providing insight and information to your viewers. You are amazing.
That is so sweet!! Thank you so much!
Iâm facing this as my spinal cord damage as a male. I was police, got hurt, had numerous spinal cord stimulator trials, (which caused tumors- rare), Iâm a male have self cath 10xs a day and now this. Iâm nearly divorced now and am totally isolated. You are amazing and glad I found your channel.
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Oh mate I hear you there are dating sites for ostomates if you need to divorce just do it less stress
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You are not alone...
I am so sorry that happened to you. đą
I had a daughter in 2000. I was sick for many years prior to that but didnât yet have a Crohnâs diagnosis. When my daughter was 2 1/2 I had a terrible flare and ended up hospitalized and had to have an open surgery bowel resection. We wanted to have a large family. I was never able to conceive again. We did try some fertility treatments short of IVF as we couldnât afford that at the time. All efforts were unsuccessful. I know it is not the same as I was blessed with my one child, but I spent many years heartbroken that I could never conceive again. I feel for you and all the other ladies who experience this pain. I hope you will yet get to become the momma you want to be. Blessings. đ
So do I Maggie. Youâre such a sweet person and I pray God will bless you and your husband with a little one.
Thank you Maggie for this amazing and revealing video. At age 57, I had my proctocolectomy surgery, and though it was a long and hard recovery, I got my life back and have carried on virtually free of Crohns symptoms. A few years later, I met my and then married my wonderful wife - we met dancing - and now in my 70s, my life has never been better. In my case, the surgery has not interfered with intimacy - although I had feared it would. I'm so thankful for the modern medical advances and great health care heros that have given me a second chance. For those contemplating this major surgery, I'm here to remind you that miracles are possible.
Dear Maggie. Youâre a friend magnet. Yes, having surgery is like the domino effect. Other things are affected in the chain. Maggie, youâre beautiful in so many ways. Youâre a treasure to Zak, your family, your friends, and us your CZcams friends. You touched all of us. Iâll say a đ for you and Zak. Much đ€ and đ from me.
It must have been so hard for you to give up your nursing job caring for people in person, but it seems to me that you're doing a ton of good here, helping people through their medical challenges. Maybe you're even reaching more people this way.
I hope that your efforts at parenthood turn out in a wonderful way for you and Zac, whenever that may be.â€
I am now 58 and had my Ileostomy/Colostomy ages 21 so 37 years ago and what it gave me was my life back what I lost was sweet eff all. That said the ulcerative colitis came back last year in the form of a blocked bile duct and pancreatic cancer was found so yet another massive operation (whipple). We are survivors and live to tell a tale, in the end only one thing matters, your still alive
I just wanna say I wish you the best full recovery if it hasn't happened already and also want you to know you're a warrior. May this year be the best year of your life yet not as good as every single one thereon â€
I have stage 4 ovarian cancer and during my debulking surgery it was found that the tumor was all over my colon. Waking up from a 8 hour surgery I had an iliostomy. Supposedly it will be closed when I complete all my chemotherapies.
Praise God for all of us!!!
@@catherineepommett8526 Some people are lucky and the process can be reversed but its also not always successful. Good luck and all the best xx
Oh Maggie. My husband and I have followed your channel since before his ostomy surgery 7/2020. You have given us so much useful information! We truly appreciate your candor.
My husband had his proctocolectomy 12/2022. The minute they got him out of surgery and into his ICU room, he said, something is wrong âdown there.â He is currently seeing a urologist with little to no improvement. I am so glad you are recommending the Pelvic Floor Therapist!!! (As you stated, everything is in such close proximity down there, thereâs bound to be nerve issues) Also, my husband had massive amounts of scar tissue from an infection that was a result of his ileostomy surgery in 2020. His proctocolectomy took over 9.5hrs because the Dr had to painstakingly dissect the colon from the scar tissue.
Anyway, THANK YOU for the great information! We will most definitely speak to his urologist about PFT at his appointment this Friday! â€
AMEN to pelvic floor therapy - I have been recommending your channel to my patients because of your calm and thorough educational style. :)
Your video should be required viewing for anyone considering this surgery, imo! A very good friend of mine went through it following a recurrence of his colon cancer and his recovery trajectory was similar to yours. These operations used to keep people in the hospital for months (Miles procedures, et c.) and are huge, life-altering operations (both good and bad) and physicians/surgeons can only give part of the whole story. As an aside, I am a urologist who has been involved in these surgeries and their aftercare who knows how life changing they are, and having done plenty of radical cystectomies and radical prostatectomies I agree with you completely that pelvic floor rehab is a huge component to overall recovery, to the point where I have my patients considering any pelvic 'exenteritive' surgery to go to rehab first (I call it 'prehab') so they get a leg up on their recovery! Best of luck to you and I hope you can continue to help others in this very unique situation!
Wow. Is all I can say. Immense Strength, humility, and educational all in one video. Videos like these should be shown in school to help increase TRUE understanding and empathy. Bless you and your husband...đ
I'm a celiac, not sure how I got recommended this, but autoimmune disorders run in my family. I'm also a brain surgery survivor. Your positive attitude is pretty awesome. Not everyone with chronic illness can laugh about it. If you want, there's a T-shirt you can get that says, "Ask Me About My Butthole" based on an ancient meme. đ If you don't laugh about adversity, you'll cry about it, in my experience.
Also, pelvic floor exercises are life-changing for many. My wife developed stress incontinence as a result of the birth of our youngest. The Dr. Betty Dodson-designed vaginal barbell is both worth every penny and fun to explain to the TSA according to my wife. She has has few issues since getting disciplined about pelvic floor muscle tone.
This was a very gentle yet informative way of explaining what a patient can expect from this type of surgery. Not that I regret any of my past experiences of being operated on (not for IBD), but I have never received as much clarity regarding any medical procedure as I have on this channel. Perhaps I did not ask the right questions or doctors just do not get courses on patient conversations.
You are warrior. I applaud your courage, strength, and willingness to talk so openly. I am thankful for the wisdom you shared.
Your empathic manner, combined with your upbeat attitude, make you a blessing and a source of encouragement.
Absolutely true đŻ
Iâve just had the joy of having my bottom wound reopened as I developed an internal hernia 3m after my rectal cancer surgery. The pelvic organs were flopping back into it! V rare so others please donât worry. Iâve booked myself a pelvic floor therapist to start in a few weeks time as no one, except you Maggie, can give me any advice! I think the revised scar is actually better as there is much less bunched scar tissue. It almost feels lucky to be post menopause and single as that scarring and the loss of rectal support to the other organs doesnât affect me too much, except v slow bladder emptying. These are the things they donât tell you, but there wasnât an option and Iâm very glad to be cured and alive. đ
Oh my gosh, that sounds awful. How are you doing now?
@@kylieshaye6562 making good progress thank you.
I had my colon removed in January and I can now say that it was the best decision for me that I ever made. It was a rough surgery and a rough recovery but I am doing well now. I had an IRA and it was successful đ. Thank you for sharing such intimate details. I appreciate it.
Dear Maggie,
I have been following your story for a long time. I hope and pray that you and Zack get your child soon.đđ
You are one remarkable woman!!! Your strength and courage is so powerful. Your knowledge and experience are helping so many and you bring peace to those who need guidance. â€â€â€â€â€
You are the most outstanding person I have ever had the honour to listen to
Wow, you are a master at doing this. I have great admiration for what youâre doing for people who are struggling with all the issues that this disease throws at them!
You are helping millions. God bless you.
Your channel is seriously one of the channels I look forward to watching. Always so honest, thorough, and comforting. THANK YOU!
Maggie, you have a wonderful way of speaking, and educating. I could literally listen to you speak all day ! I really hope that one day you can have your own little ones running around, wherever the journey to achieving them takes you - because I think you would be a sensational Mum! You're amazing, Luv.. absolutely amazing..
You are going to help so many people with this video!!!!! Such great information and great conversations for people to have with their surgeon!!! Love your content Maggie, you are so open and informative â€. Thank you for educating all of us.
Love you Maggie my daughter used your videos to teach me what she needed to do. She haas been I heaven at the age of 25. Surgery went wrong and she go septic went on ecmo and did not recover . Doctor trying to cover his butt
I dealt with infertility for 11 years and finally had my son after a lot of medical help. While I've never had crohns disease or a proctolectomy, the struggle, frustration, loneliness, and heartache of infertility is the same. One year I had two sisters, one sister-in-law, and one step sister all pregnant at the same time - it is hard. Just no way around it. Big hugs to you âŁ
I had a c-section gone wrong - breech any and they didnât close correctly- did not know until my second C-section after trying a VBAC. Surgeon said she had never seen anything like this in her 20 years. There was so much scar tissue that I had to have reconstruction. Now 14 years later, I am in horrific pain most likely from scar tissue and I have been denied and gaslighted by every doctor I tried to get help from. I really wish I could get someone to listen about adhesion especially in the abdomen.
OMG wtffff đź maybe Turkish doctors can solve this đ€·đ»ââïž
This is why American medicine is terrible especially Womenâs health. It is possible to turn a breech baby (Chiropractors do this) or at least trying to.
Also my Sister was born breech AND WAS FINE. MY MOM TOO!
I am now 70 years old, and I have suffered with IBS-D for many years. At this point, I do not foresee ever having the kind of surgery you have had, but I thank you for educating all of us about what all is involved and how it has affected every part of your life. There do not seem to be many people who are willing to be as open about it as you are, and you have answered so many questions. Thanks for all your videos. I have learned so much!
I had IBS for 30 years, always had to be near a toilet. Quitting dairy helped, quitting all plants (ALL fibre) and eating a pure carnivore diet cured it within days. 4 years on and I'm able to eat some plants without issue but I'm still so much better if I stick with meat.
@@sportysbusinessThat's so interesting... I'm a lifelong vegetarian (for ethical reasons), and my colon is an absolute mess. I also feel better when I eat less fiber, more processed food, etc., but I just cannot get myself to eat meat...
@@JackAShepherd I understand it's difficult when it's such a large part of your beliefs. Could you bring yourself to eat fish? A fatty fish like salmon or sardines? Have you ever fasted? Just fasting for a few days to give your colon a rest will help. I remember how horrible IBS was, the pain, gas, bloating and huge amounts of toilet paper. I was whole food plant based for 2 years and that was the worst I'd ever been. I'd never go back to a high fibre diet. Good luck, hard decision.
@@sportysbusiness At this point it's more the ick factor than the beliefs, even... I have tried chicken a few times but it just doesn't sit well in my upper GI. I can't even go near fish... The smell makes me gag. I am hoping lab-grown meat will make it easier for me to non-grossly prepare grilled chicken, and that that'll be the solution (albeit in a few years)... I have tried fasting as well but my colon goes crazy when it's totally empty đ„ș
@@JackAShepherd Sorry to hear fasting didn't work, your gut is really messed up eh. Try ruminant animals rather than chicken, humans digest ruminant meat far more easily than chicken. I'm a 4 year carnivore and still struggle with chicken myself. Interestingly, I have the ick factor with the concept of meat 'grown' in a sterile lab with no natural enzymes. I don't think I could ever bring myself to eat that by choice! Isn't it funny how we're all the same and yet so different. If only society could accept differences instead of fighting over them...
I so admire you being able to stand up and let others know they are not alone.
Maggie, you are such a wealth of resource to discuss all these matters with such confidence!
Maggie , This camera and the way you have things focused is beautiful. I donât think Iâve ever seen a CZcams with such fine clarity. I donât know anything about photography and filming so⊠but anyway, Iâm sorry that youâve had to go through all of this and had all these consequences. Youâve made the best of everything †and that is quite an achievement.
Your experiences are things I had never even thought of. I really appreciate how straightforward, honest, and informative this video is. I learned a lot and I appreciate you as a person. I hope things get much easier and better for you in the future.
You're A trooper, you've been through so much. Its just amazing how the human body can change and keep going. I'm sorry about your fertility issues, its so hard.
You are providing a huge service and a lot of education. I hope you never stop doing it.
â€Thank you for your honesty and providing those possibly facing this surgery with firsthand information. Even though I am quite a bit older than you, I was only diagnosed with Crohnâs in 11/21 and am now classified as a âcomplicated patientâ. Listening to your videos is like chatting with a close friend. I often hear you say the exact words that either I have said or I have felt.
Iâve had 24 general anesthesia surgeries after a skydiving and a motorcycle accident. It is amazing how resilient the human animal is. I really admire your optimism. Aside from that you are very smart and pretty. If you were my daughter Iâd be soooo proud. Have a great life!
This is such a helpful video. Thank you for being so brave and willing to share this information with others. I know that you're a nurse and so you're accustomed to these kinds of details, but I could see that it was still a bit difficult for you. As a clinical social worker and therapist, I have mad respect for you. Well done!
You are so refreshing to watch your explanation of this procedure is so well done. Things like this are needed for folks experiencing like procedures. Thank you so much you are a doll.
Love how open and honest you are . I find sitting for long periods my ass gets sore and find myself lying on the bed to take away the pain keep up the great videos â€
You have my respect! I canât even imagine going through that many surgeries and going through what you have gone through. Stay strong đȘ and may God bless you and keep you healthy
i'm so sorry you've been given so much to deal with. i know how defeating & angry it can make one feel. i'm glad you got some relief. i hope you get your baby. & i pray it is a beautiful experience.
Maggie you are very special and so empathetic to share very personal parts of your life. I know this will help many people who have similar problems and don't know what they should do. Also there are always people who will give well meaning (maybe) advice about what that person should do, even having no medical knowledge.
Thank you for being so brave and altruistic in telling what you went through to help other people.
You are a champ for telling people who have these problems what to expect. I think your video is very helpful to those people who suffer..
You are one of the most amazing persons I have encountered here on CZcams. I cannot imagine the pain you have gone through... absolutely not. I wish you all the best for the future which must be very bright for you!
Mad respect for you and your videos. I know many post on you tube about thier surgeries but all those others always seem self-serving.. you always come across as ao genuine!!
Thanks for being so forthcoming and honest on the subject.
You are wonderful at delivering this information to us viewers. Such sensitive hush hush talk and you made me very comfortable talking about it. I do not know my results yet. But I am currently battling the pain and suffering at age 50 Bless your heart for such an early age. You take care and be well ! â€
When I feel really sick I always watch your videos to motivate me to be strong đ„
I still have hope for you to have a family someday. Thank you for sharing so much with us. You are a wonderful and strong woman! Love all your videos!
How strong are you girl, coming out and talking about this issue that others with similar can find advice and comfort. Cheers to you my friend.
Sending love! Youâre so sweet to share this!đđđŒđ
I discovered your channel when I decided to go forward with my colectomy, ileostomy. Best decision I ever made going forward with the operation. I suffered with UC for the majority of my life. I was diagnosed in 1977. I am now considering making this permanent. You have given me some great information to assist in making the tough decision.
You are looking so much healthier in this video. God bless you
â€â€â€ This helped a lot. Really hit home. I'm getting my surgery next month, and although I'm crying right now, don't worry, you didn't scare me. Information is power. Now I can take better and well thought decisions, and next week I'm starting with pelvic floor therapy. THANK YOU for your honesty. I wish you the best.
You are a brave and beautiful woman all around. You help people by discussing this topic and the work you did as a nurse. They are, and I can see you, angels on earth. Ignore the prior negative comments and continue to push forward with your positivity. We need more articulate and wonderful people like you.
For some reason this video popped up on my feed, although thankfully none of this pertains to me I did watch this because I know a couple of people who have gone through this. I want to commend you for being so open and honest about what you went through. This will give someone else fighting this disease alot of help. Hopefully you will have a child of your own someday and if not there are so many other ways to do it now days!! I hope you continue to heal and continue to help others. I really appreciate you. Your such a beautiful women!!
I have Crohnâs disease as well, I had 5 surgeries in my abdomen, and I always thought the scar tissue was constricting me in my movements. My belly is hard and non flexible. But I always thought I was stupid for thinking that, but to hear you talk about it, it makes sense now. So, big thanks to you, you are a great help to other patients!!
You are lovely đ. I know that this was a more vulnerable video for you. I can only imagine how precious and valuable this information is for other patients.
Hi Maggie, what a wonderful video, this should be available everywhere! All the very best from Australia.
THANK YOU so much for your videos! I just had my colostomy & proctectomy surgeries slightly over 2 wks ago (also a hysterectomy because Iâm apparently an overachiever)⊠so Iâm VERY early in the healing process. Iâve had lots of surgeries before & have always pushed my body a bit more than I should have after surgeries. But, having your wise insights have given me a different perspective. Your videos have helped me in so many ways, I canât even begin to express my gratitude for your candor. Iâm dealing with the âgushing & drainingâ still. Iâm sure there is a lot of fluid built up in there since the whole pumpkin was carved/cleaned out. So, Iâve been trying to express the fluid as much as I can manually when I shower. Iâm also dealing with a slight fungal infection along my crack. My surgeon says both are normal. But, itâs just all new territory for me. Do you have any other tips on what sitting/laying positions work best to minimize the pain down there? Standing/walking for longer periods of time have helped, but arenât sustainable because I am still pretty weak. Thank you for reading & for being amazing! Please keep rocking this channel. đ
Maggie, love the dark blue on youâŠyour open honesty is overwhelming, thank you so much for sharing..cheers from The Maritimes
The USA needs to do far more pelvic floor therapy for so many things. Women in France are prescribed it for vaginal child birth as a standard I believe. Women in France do not all have the collective experience of peeing themselves for the remainder of their lives if they laugh too hard or sneeze at anywhere close to the rates in the USA
100% agree with this. Iâve never had children and donât plan to, but have had other injuries and medical issues in the past, and pelvic floor physical therapy changed my life.
Thank you for sharing your experience and being honest. I am 3 months out from my surgery. In addition to having my rectum and anus removed I had to have flap surgery. Cellulitis has been my problem with the flap incisions, but my surgery was the best decision that I made in my life (other than marrying my husband).
Everytime fertility comes into the room... i wish wish wish i could say something reassuring or helpful. i cant. it is so heartbreaking every month seeing the blood again. and i am sorry. i just am. I can only say... there are so many days and possibilitys left for your life who knows what will happen! i wish you wonderful things in the world!!
My proctectomy surgery did not go smoothly. Iâm currently dealing with a dehisced wound and having it packed and unpacked every other day đ itâs incredibly painful and Iâm facing having a scar revision due to adhesions entrapping nerves and itâs just wonât settle down no matter what. I had my ostomy surgery in March of 2022 due to ulcerative colitis⊠by dec of 2022 my rectum and anus became stenotic and my colorectal surgeon and gastroenterologist said they needed to be removed . thus the surgery. I will say it has put my ulcerative colitis in remission and Iâm looking forward to healing from this surgery. I know Iâm also only just past three months post op and for the extent of what my body has been through itâs still early. You are a blessing to all of us and I will keep you in my prayers for that baby !
Oh yes , my rectum produced crazy amounts of mucous and because my rectum was devoid of peristalsis, I couldnât push the mucous out . That was extremely painful as well so I knew the surgery had to be done. I absolutely do NOT regret having had the surgery
You're an amazing person Maggie! Thank you for all you do for the IBD community â€â€â€â€
Wishing much peace and love to you. As so many others have articulated, your honesty is disarming and encouraging . You are inspiring the very empathy and compassion so desperately needed regarding this specific disease and more broadly the world over. You are making it a better place and that's all any human can do.. we are lucky to share time and space with you and would all do well to follow your example. Thank you
Thank you so much for sharing your life's experience, I've been following you for quite some time, and you have helped me through my own struggles. I have Ehlers Danlos Syndrome and it destroyed my gastrointestinal system. I am also a Registered Nurse and EMT, I was working on the requirements for my PHRN and had a Aeromedical department that was very interested in me. I ended up giving up on that dream of mine, bc I just knew it wouldn't have lasted long anyways. I then went to work at Catholic extended care facility, with a skilled unit and memory care unit. I actually fell in love with my career at St. Anne, I am Catholic and it just felt right, but my health still kept on declining. Eventually I needed a leave of absence for surgery, then another leave when I didn't heal as fast as we hoped. I was physically dragging my ass out of bed each day, and one day I was in so much pain, so sick and I handed my boss a resignation letter. The CEO actually begged me to stay and offered me a different less physical position. I was the daylight supervisor in charge of almost everything, and I loved it. I couldn't take the RNAC position, I didn't get into nursing to work at a desk. I hoped that in dur time I would be able to return. Well EDS destroys everything and I went down hill so quickly. My 30th birthday I ended up hospitalized and I am 38 now, and in the last 8 years, I was inpatient over 1600 days, had a total of 26 surgeries, actually gave up at one point. I am 5'8" and was down to 94 lbs my organs had begun to shut down. My family and friends convinced me to revoke hospice and accept IV fluids, try another NG tube, then jtube, then TPN. Evacuating was so hard, I had a rectocele, relyed on fleets and digital evacuation. So I started with a loop ileostomy, but I was always hopping the loop and despite the fact I had a ileostomy I was still having stuff that needed to come out my rectum. I had numerous stoma revisions, and making the decision to have it all gone was difficult and I still have regrets at times. Nothing healed correctly, I had already gone through more abdominal surgery then anyone I have ever met. But my mom happens to be a WOCN. She begged me to get it done, she felt I would get some quality of life back. Nope, I am in a sad state at the moment. If course my stoma is giving me hell at the moment and I am scheduled for a scope, I just pray that I don't need anymore surgery, but I know I do, so does my Mom. She's never had a patient with EDS neither has my surgeons, which is scary but I trust them. Still I have lost my career, my ability to have children, but I had children young and didn't know what was going on with me at the time. But spending more time in the hospital than home for the past 8 years really strained my relationship with my kids, they also both inherited my EDS and one child inherited my bleeding disorder VWD as well. My daughter fears everyday that she is going to end up like me. I missed all the holidays, so many special moments, my biggest surgery was also in the beginning of the pandemic so I was in for 65 days, had surgery, and no visitors. I ended up having a ministroke during that hospitalization, and that when they found chiari malformation and now I have seizures too. It's been a couple years since then and I still can't eat, and I lost my long natural red hair, my teeth, and my sex life, sex hurts, I'm actually starting pelvic floor therapy soon, I hope it helps. Thank you so very much đ†for putting your life out there like this, bc honestly you, Hannah Witton, and some others young woman facing all this shit, literally has really helped me know that I am not alone. Sending you so much love đ take care hun, and as long as u continue making videos I will be watching!
OMG- so sorry. I pray you heal fully and NEVER have to be sick again. God bless you
Oh, your poor girl. You have been through so much, my heart breaks for you. I will pray that God helps you and heals your body.
To say I am not scared would b a lie. Soon will have my bladder and prostate removed. Your journey and honesty has been calming. What u have endured is way more challenging than my upcoming surgery. Thank you for your courage
I just came across your video, and I have such respect for your willingness to discuss this topic. A good friend is faced with the decision to undergo this surgery and I have shared this with her. Thank you and all the best going forward â
Thank you so much for talking so openly and candidly about such a complex and difficult subject. Like you, I also have crohns and a couple of years ago I underwent emergency surgery had a full ileostomy and now they want to remove my end stump as I constantly get flare ups there, which as you know is very painful and uncomfortable.. I have always been against the idea of having this further surgery as I feel that I need to be on medication to treat my crohns as a starting point (I'm only on lots of pain medication and a low dose steroid). Thank you for giving me such a valuable insight into your own personal experiences and issues since your surgery, these are precisely the things I'm worried about and the things my Dr's never tell me about.. I think you're so inspirational and thank you for sharing your journey as I can relate to a lot of what you say.. I feel there is nobody in my life that can provide me with honest conversation about this subject. You have been a lifeline for me. Please keep on doing what you do, you have no idea just how much you are appreciated and inspiring. sending you much love from the UK đŹđ§ â€ïž
You are an awesome inspiration. I promise to NEVER complain about a little minor constipation as long as I live after watching this...
You are so courageous. I have a failed Jpouch with an ileostomy and have considered the surgery but can commit. Karah from Karahâs life sent me here to learn how to care for irritated skin under the tape from the flange and Iâve been watching your videos. Thank you for being so open and sharing. It really means a lot.
Thank you so much for speaking about this subject! I'm a new stomised woman and it's so good to have insight about all of this!
Wow! You're a really strong woman! Good luck in the future!
Maggie, stumbled upon your video. I believe this video will be invaluable to many. Your great, well done.
Like others have said, you have my admiration and respect for everything that you have gone through and continue to go through. You are amazing!
You are so brave, honest and a shining light. I think, just me saying, that you will be such a wonderful MomâŠI have been through fertility treatments and they are so worth it, I think you have been through much worseâŠwould be happy to walk you thru fertility stuff any time you want
Maggie, your honesty, insight, and no holds barred videos should be part of any patients colon & rectum pre-surgery protocol. Your journey is inspiring for anyone looking at this intense life-changing procedure.
I have two questions, a) how would a pregnancy effect your body and could it cause complications, and b) could a child inherit this disease?
Thank you for your sweet personality and open heart. đ
Maggie I don't have crohns disease but I have cancer since 2014 I've had an illiostomy and now a colostomy I followed you because of the ostomy information and to also follow your journey because you are awsome Maggie truely awsome thank you for sharing tge information and this very important video đ
So glad to feel like I'm not alone in this, seriously thank you for sharing.
Thank you for your honesty and candour in talking about this difficult subject.
Respect,respect,respect! You are a breath of fresh air, your honesty is refreshing. Kudos girl! I love you so â€â€ prayers đđđ
What a warrior! A brave woman! Incredibly beautiful and brave.
Im so glad you are so open and talking about this. Its so important. Thank you!
Great video , I have had my first surgery 10 yrs ago , then bowel resection surgery 3yrs ago , this video is going to be good for anyone newly diagnosed or just had surgery done , you mentioned lots of stuff the surgeon and doctor don't tell you !! , Looking fabulous xxx
I am here because of a random youtube recommendation. May I just say that you, and others like you who have undergone major surgeries and/or serious illness, and who come here to talk about it, to tell the world what it is really like to experience these things - and do so with the honesty, humour and grace that you do, are beyond praise. Thank you.
Maggie I adore you and Iâm praying for you on your journey to conceive.
Maggie, you are amazing and your videos are wonderful. I had this surgery a year ago and had no idea what to expect beforehand - I wish I had known about your videos then! Your sharing of your experience has resonated stongly with me and has validated my own. It's been a lot to take in. I'll be looking for pelvic floor therapy now that I know about it! Thank you soooo much.
Your ability to share your experience is phenomenal. Thank you so much for sharing.....
This was the best video ever on this topic! Much love!
Wow! I have Crohnâs too - and itâs so calming to hear of someone elseâs experiences â€