Top 'Sick' Moments with IBD | Let's Talk IBD
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- čas přidán 14. 12. 2021
- In this video I talk about some of my scariest and sickest moments while having IBD. Its a good reminder to pay attention to the signs my body gives me!
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I would have been lost without you. My colon exploded and many organs fused together. They tell me I would have died if I hadn’t gone to the ER. I had a stoma named Edith for almost a year. This happened during the pandemic. My husband is my advocate and could not be there. Thankfully I have an amazing surgeon and am now re connected. You are are a blessing!
How terrible! Glad you got through that!
I'm scheduled for reconnection in a few months. Can you tell me about your experience with the reconnection? How long was the surgery and how long was the recovery?
Was your first #2 painful?
Thanks!
You really are a champion. My daughter experienced death for the first time in 5th grade when one of her friends died from Chrons. I feel like she died because they failed to diagnose her quickly enough. That’s why what you’re doing is so important. Education is essential.
Precious Lambs each child and every teacher who could comprehend what the gravity of that situation meant!
May each one carry that knowledge to help save lives.
I agree Maggie is truly doing the work of a Nurse, Patient, and Advocate!
It's that IBD effect, we put up with so much we normally don't go in until we are in really bad shape.
I will never forget my 1st hospitalization. I was in so much pain that I quite literally could not fall asleep that night, just kept watching the hours pass. Finally around 4:00am I decided that was enough and at least if I go into the ER they can give me pain meds. Turns out I had perfed :(
I had shingles at 10 it was so painful! Typhoid at 12 (many may not believe that) and mono at 13. Born with VSD. Recently had a brain leak, the list goes on and on, I’m so glad I’m not alone! We survivors need to stick together
I have chronic illness also. It’s not always easy but makes you stronger.
Your dad sounds like an amazing man!
I liked this video it was informative and some of the same stuff happened to me! A lot of the problem is Drs don’t always pay attention to your illness and let it lead to big problems !
You are the definition of a warrior. Keep living life, and having fun. I wish you well!!💙
Brings back my horrible memories of my three weeks in the hospital...lol..glad you are doing much better now.
You have suffered so much over the years, and been through so much, you still manage to keep smiling, a ireal trouper 😊
Great video as always Maggie. One of the stories really resonated with me. I have been having some tummy problems so I went to see a doctor about it a few months ago when it started and he recommended a colonoscopy to see what was happening. He did the procedure and found nothing. The problem starting to get worse so I went to a gynecologist because I along with my sister and mom thought that maybe my uterus was prolapseing he said I wasn't and recommended I go to a ostomy and gastroenterologist. I did and he did a rectal exam and discovered I had a Massive ball of mucus in my rectum and he recommended an ennama. My sister helped me with it. After I kid you not I felt so much better than before. He even recommended that I do it every 3 to 6 months. I am definitely going to keep doing for as long as I have to.
Oh goodness, you have been through a LOT with your chronic illness! I thought I have had it bad, and I have had some doozy times since having my life threatening colo-rectal infection, which has resulted in a permanent colostomy. I share an avoidance of hospitals and surgeries/procedures, it's horrible! You definitely have had a much worse time of it, but there was a time when, I think it was about a year after my colostomy, they wanted to see if it could at all be reversed. They had to do this procedure where, I was totally awake, alert, and they were going to take this hose like thing and fill my rectum up with water to see how much, if any it could hold. I couldn't do it, I started crying so badly right as they were beginning the procedure, so they stopped it. They let me go, but they asked me as I was leaving if I had ever been sexually assaulted, I guess because of my reaction. There are many stories and events we can all share with each other, it's a good thing, really, even though some may not see it like that. It helps to share, we can learn, and it is helpful and a comfort knowing you are not alone. I am SO sorry I went on and on here, but it helps me I guess. Thank you for sharing your stories/history of your illness, God Bless You and I'm thankful I discovered your channel! Many hugs to you and Zak!!! 😊💕🎄
Oh sweet Maggie ❤️ You have been through soooooo much in your young life 😢 Praying for better days, weeks, months, and years ahead❤️ You have an excellent partner to help you through this moving forward! Thankfully you dad was there for you soooo many times! Blessings from Green 🌱Ohio 😇
Thank you for being you!!
Wow thanks for sharing! You have been through so much!
Thank you for sharing your experiences Maggie!
You're such a great teacher, Maggie, thank you for sharing with us 🤗
I'm glad you took the time to share.
You are right about paying attention to what your body is trying to tell you. When you reach out for help it usually narrows down the possible issues if you have a Doc that listens.
They were more stressed over zero outflow but as soon as blockage was relieved I could empty bladder. They just didn't get it. Rarely have any specialist in our ER unless called.
Stay warm and love that shirt. Take care
You’re incredible Maggie. Thank you for your videos.
Oh what a story.... I am speechless you have endured so much... Dear Maggie my love n prayers for your health and wellness... ❤❤❤❤sending you hugs..
I have a hard time knowing how you have come thru these serious issues and kept your beauty and your attitude. You are a walking information for all other people with similar problems. God Bless you.
Great idea on Zac helping create video, put together the memories also sweetie being w u many moments 💖
You sound like me. 👍 So glad to be alive but blockages suck. I get them all the time . I have so much scar tissue in my abdominal area. Xoxoxoxo 💞 Love you both and Merry Christmas from Wanganui in New Zealand 🇳🇿 ❤
You are a hero!!!!
Hope you don't have any more troubles in the future. I haven't had as many physical problems as you have, but Thanks to you, I had some help with my emergency ostomy. Since the reversal about 2 years ago, I ended up having a quadruple bypass last year, and I get the fact that you tend to get weaker through each operation. IOW, I wouldn't even have fully recovered from one thing when I had the next thing happen. I'm doing pretty good, but my arms are pretty trashed (relatively speaking), but I'll get better slowly. My biggest enemy is my age, so things don't recover as quickly and easily as in younger days. Oh, btw, tell Zak I'm still jealous...😊
You are so well spoken! Such a pleasure listening to you: to the point: important info is told … what a journey !! I will think of you when my inflammation keeps me awake at night 💓❤️🔥
Thank you once again Maggie for a very helpful and informative video.. you have been so very helpful to me for the past 3 yrs since my ostomy surgeries .. I knew nothing about Ostomies before I woke up from surgery with first a colostomy , then an ileostomy, a failed reversal next and now an ileostomy which I am keeping as my colon is just very uncooperative and honestly my quality of life is so much better with my ostomy which I will have for two years on March 4, 2022… I do still have my colon however … so I’m going to ask my dr when I see him in Jan about the mucous which I don’t see often at all 🤔 just had a CAT scan as I do have a parastomal hernia .. everything looked good.. output is good.. everything moving as it should be.. I try to take one day at a time and hope no complications develop 🙏 I have learned so so much from you.. you are such a trooper .. you have been through so very much from a young age.. btw… my colon issued started with diverticulitis. I got a blockage from it, stricture and abscess..
Woow I'm so inspired with your video Sis. I'm sorry you have to go through all these but thank God you are strong. I just subscribed to your channel. I had a pyeloplasty surgery 3 years ago. But right now I'm having complications due to scar tissue formation on my right ureter. Making it difficult for urine to drain from my right kidney. I have been in and out of hospital. Here in Africa we don't really get the medical attention we need. I'm scared each day that passes. How I wish I'm in the western world with good medical attention. I wish you all the best. Thanks for your inspiration.
Thank you.
Yes this is to help others and how far u come
Hi Maggie My name is Shmuel and i'm from ISRAEL. my wife has crohn's disease since she was 18, the disease broke out during her military service due to the harsh sanitary conditions that she had to endure in her military service.
that was almost 20 years ago.
lately she is having a lot of emotional difficulty in dealing with the disease, and she is not someone who is afraid of working hard.
i know that she appreciates you and your way of dealing with the disease, and thought maybe you could talk to her a little about what motivates you to continue and fight for your life.
please write back to me, it will mean a great dill
with regards
Shmuel
🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰 Oh hon, you are a brave person, I hope that you do not go thru anymore pain .
I had a perforated bowel in 2017. Some of the worst pain ever. Extremely high temperature, cold chills that lasted 30 minutes with me shaking so hard. I didn’t get diagnosed for over two weeks. First it was viral infection, then a kidney infection, then a bladder infection.
Wow are med paths are so similar. Ty for sharing
Maggie, I got shingles at 18! My scares are in almost the same place just a little more towards my side instead of tummy. That ish hurt! I feel your pain.
My worst moments were mostly in 2015-2016. In the same year I got a severe anemia as an adverse reaction to the medication I was taking for my ulcerative colitis, less than a month later I got a pancreatitis, they said idiopathic as they never found out why I got it but it's probably from the same medication even though I had stop it for a few weeks before... and 6 months later my colon was still not feeling well so I got an hepatic abcess when a bacteria slip off. Knock on wood, I didn't get as sick since then and I'm feeling good for the last 5 years. Wishing us good health for 2022 !
God bless y!
I still remembered that I got a terrible stomachache (Gastroenteritis) for a whole day in sixth grade of elementary school, after ate something bad a day before, which couldn't participate the Science field trip, it was a bummer.
I'm so sorry
I want to hear about what makes for good nurses/what makes for bad one's and your experiences.
Poor thing, how did you ever tolerate all this horror?
I have not endured any GI issues you and many of your viewers have, but I did have the blockage and severe contractions, of my body tried to expel what it couldn't, also blocking my bladder. I was 8 months pregnant. Not being able to release urine was also horrific pain, but then the baby would move a different way and urine would fly out, out of my control. They first thought I had gone into labor by my uterus wasn't what was contracting. I knew it was constipation to a level I didn't know possible, but unsure if that was putting me into labor. My body just had spasms as bad as hard labor, to where I came close to fainting from the pain. I needed emergency surgery while awake with an epidural, while they had the NICU team and OB team there in case the baby went into distress or I went into extreme labor where they had to deliver. They felt safer for the baby with possibilities than general anesthesia would be. It was so much pain, so frightening and so scary. This was baby #4, and my husband still never had proof I pooped (I'm good lol), and here I was with me and the entire hospital room smelling like hell, having to have doctors go in after it with multiple emergency teams there ready to act. Thankfully I was 32 weeks pg, and I was able to hold my son in until 37 weeks, and he was healthy. That child is now 15, and I am now so petrified of even minor constipation that I have had nightmares of that happening again, but my baby dies in my dreams.
Oh yes, have had shingles, very painful.
My first and only ER visit: I had Strep C.
...
Severe Crohn's Disease didn't put me in the ER (though it tried), it was a freaking animal-based strep from farmers goats milk.
With that being said, I just realized this year that I haven't had a strep case in about seven or eight years despite being around people who had it, so apparently it gave me some immunity or something (lol).
I got shingles in high school during the summer. It was aweful a decade later I still have scars on my stomach from it. Thankfully my mom brought me samples of a wound care cream that was like magic. It would go on like liquid bandaid and dry crusty and then it pealed off on it's own the blister was healed. I have also had norovirus I have almost never been so sick to my stomach.
666666666666666
I've had 1 near death experience so far, and it wasn't caused by my intestines. It happened right after getting home from having lumbar fusion surgery 10 years ago. I went to the ER with pain and redness in my upper left thigh. The ER Dr consulted with the vascular surgeon who assisted in my back surgery, and I was sent home. The next day I returned with more redness and swelling, again I was being discharged. But I got lucky. A surgeon was passing through the ER on his way to lunch and passed by my cubical, heard me crying hysterically in pain and stopped in. I was admitted immediately. That Dr saved my life! My iiliac vein and artery had collapsed on each other, filling my left leg with clots. If I had been sent home, I wouldn't have survived. My mom told me that it looked like someone had poured gravel into my leg, filling it from my ankle to my groin. I only remember bits and pieces of the end of September and beginning of October of that year. I do remember being in ICU, crying, when my then bf's best friend came in (he was a nurse at that hospital), and told me that when I was better, he'd explain how all this was my fault. I had the great pleasure of sending him a dm not so long ago, telling him that I have May-Thurner Syndrome, and he could shove any notion of me doing that to myself.
3 yrs ago my colon ruptured taken from ER by ambulance to another hospital where the surgeon was had surgery and found out it was cancerous had 10 in of my colon taken out ,had chemo then immunotherapy right now I’m cancer free just had my latest scan but my problem now is diarrhea all the time and sometime I can’t make it to the bathroom I get so upset my oncologist just gave me some new medicine hope it works
Mercaptopurine made me so sick also. I got a horrid rash over my whole body. I had already had anaphylaxis to infliximab and a reaction to azathioprine. So my doctor didn’t believe I was sick until he saw the rash. I think the rash was a side effect not an infection though. I’ve also got 3 strictures 2 at the end of my small intestine and 1 at the start of my large and When I get a flare up I get obstructions every few days causing vomiting and that horrid spasms pain until my body clears it and I get better. Side note: when I was first I’ll with the obstructions and I’d been throwing up for 3 days the ambulance that came refused to take me to hospital because they thought it was norovirus. Because of that I left it almost a year of these obstructions every couple of weeks before I ended up getting admitted to hospital and finding out about the 3 strictures.
what is the intro song? I love it
Ive had norovirus
Compared to when u were young u feel better
Shingles is terrible. I had the same problem. I had full blown rash that hurt. My doctor said that I had shingles. I was given OxyContin. Ugh!
I got my first kidney stone after my son was born back in 2016. I remember that night because it was the first time he slept for 4 hours. Got a stent that was supposed to be in for a week and was in for a month. I've had my daughter and knew I had a stone but thought I could deal with it but it turned into an infection that went into my bloodstream and almost killed me. Spent 3 days in the ICU with a central line and somehow breastfed through it. I've had stones since then but again, I can handle them. Well this last month has been horrible! I got a stone that was to painful so I went in to find I have multiple stones in both kidneys. That turned into an infection. Now they are treating me horribly and think all I want is pain meds. I don't....I want my life back. I have 5 kids and haven't been able to fully parent this month. It's so depressing 💔
Amazing… I spoke of coincidence to you the other night, but I’m having the mucus build up 9due to slow transit, which is why I have my stoma) but has caused a parastomal hernia, which has been so bad that im actually in hospital now. BUT GET THIS as im watching this my Dr comes in and tells me he spoke to a couple of his colorectal surgeon colleagues that want to wait as it’s not obstructed (so the scans say, but I have had times the stoma isn’t working) but it’s Christmas and they will do it in a couple of weeks and take colon and fix hernia (which is supposed to be very painful which will be fun with my pain disorder YIKES!😳
Dont forgetb
your pillr
Some of the moments shared in this were Real Scary ( I don’t want to sound Real negative here but Sepsis can kill people) With all You’ve been through, it’s a darn wonder that You, Zac and Your Father haven’t had to have some time talking to a Pyscharist at least. Some of this is terrifying......... And despite the ups and downs You’ve had to endure Maggie, thanks to the wonders of Medical Science You’re here. And that is something to be absolutely Thankful for............... ⚛️☮️ 🌻 🌏
Poison ivy is so itchy!!!! I recently found out that I am allergic to it and it's freaking horrible
Its seems doctors are often slow to diagnose things, seems to be lack of experience
Maggie do you have a video on what led you to get the colectomy? Was it due to anything you talked about here?
This video is sort of a summary, but essentially my Crohn's disease was mainly in my rectum causing severe stricturing and scarring meaning the rectum/anus would never function properly, and my colon was producing so much mucus that I struggled to get out daily, so I finally decided to get rid of it! czcams.com/video/7EJvl1llBNc/video.html
@@LetsTalkIBD thank you so much for replying!
I don't think the shingles vax was around yet when we were kids (pretty sure we're the same age) but they still don't give it to us young people even now. I think 50+ is when they start doing it now
💛🌴🙏🏻🎄
I have chronic illness too but I’m confused why we are highlighting our “top” sick moments. Placing so much focus on remembering our most unhealthy moments takes away from all we do have and the healing, positive thoughts we should be thinking about.
I think 90% if not more of my videos show the positivity I have despite this, and wanted to share this to remind patients to listen to the warning signs their body gives them that could potentially save them.