My *Updated* Story with Crohn's Disease
ฝัง
- เผยแพร่เมื่อ 28 มี.ค. 2017
- Let's Talk IBD is on Facebook and Instagram!
Check out my other channel, Makin' Up Maggie:
/ @maggiemo
Consider donating to Cure for IBD (a foundation that gives 100% of money raised to research for Inflammatory Bowel Disease). Check it out and consider joining! cureforibd.donordrive.com/inde...
Let's Talk IBD on FB: / 173363562736069
As a father, I would be horrified if my daughter had to go through the pain you have. I just want to give you a hug and make it all better. I imagine your parents are so relieved at how well you are doing and all you have accomplished. Thanks for sharing your story.
I find it really cool that you decided to study health afterward. I think you said you're currently a nurse? Your story is able to touch so many patients.
I just found your channel and I totally love it .. I too suffers from chrons disease for 15 years now .. I have not have any surgeries but I’ve been on immunosuppressant drugs for years .. I was on Humira at first and I’m on Stelara now ... My doctor has been telling me that I’m gonna need surgery eventually because I do have strictures on my small bowel .. watching you just give me a positive outlook on bowel surgery and living after .. because it always scares me to have and ostomy/ileostomy ..
Glad I found your channel .. you are amazing ❤️
Maggie you are quite an amazing woman. Dealing with Crohn's disease and the infection and surgery. Becoming an RN and having a supportive husband.
You have a positive attitude and I wish you the best.
Omg Maggie! How adorable you were! So cute! I just now saw this and it made me cry!!!!! Just sweet!
I have so much empathy for you, sweet girl! My older daughter has struggled with Crohns since she was about 10 years old. She's on her third ostomy, since the first two were disasters, and is on Stelara once per month. Now my younger daughter is showing signs of IBD. Fun stuff! I am sending you the best, most positive wishes for a great life!!!! You're a doll! Thanks for sharing your story 😍
Hi Maggie! My friend Michelle recently met you (I think she works with you) and told me about you and your channel. I also have IBD (UC) and I also am a peds RN (Hopkins)
You are such an inspiration and honestly your videos have helped me more than you know. I'm so scared to have my colon removed but I am so ready to feel good again. Thank you for sharing your story! Xo
Hello Maggie
I am from Cape Town, South Africa and a I also have Crohn's and it's just so nice to watch your story. You have given me hope when things felt hopeless and I want to thank you for that.
Thank you. Your Bravery helps me to be brave with things that have nothing to do with IBD. I can see you/ your life, but think of all of us you don't "see" but have "saved" without even knowing it. Keep going so that the rest of us can.
I’m so happy I seen this video. I’m at the very beginning of your journey
I had portion of my colon taken out at 3 days old and a couple years ago when I was 14-15 years old I kept having super bad flare ups where I cry in pain and I’ve been hospital a lot and finally 3 colonoscopy and endoscopes later I was diagnosed with IBD that shows sign of crohns. I also have super bad constipation and miralax doesn’t even work. I sometimes have to drink colonoscopy prep stuff in small quantities because I get so impacted. I relate a lot to not being able to gain weight sometimes esp when it flares up. I love watching your videos!
Samantha, I feel for you. It must be so difficult to have Crohn's disease. I have had IBS since I was a teen.
Stress could really cause a lot of problems. I'm sure that my issues are nothing compared to what you have been through.
I hope that you feel better.
I really like your channel. I've stumbled upon some of your older videos a few weeks ago and liked them a lot because you just seem like such a nice person (and also you're super pretty).
So I was super excited that you've been doing regular videos lately. They're super informative but also fun to watch especially since the quality is also really good.
Also how the hell do you get your eyeliner so perfect? I've stared at it in all the latest videos and just, how? It's so pretty and perfect, I'm jealous. If you ever run out of topics to talk about, I'd totally watch an eyeliner tutorial 🙈😄
just four weeks ago got an ostomy bag a large part of my intestine was dead inside with scar tissue growing around it anyway I just want to tell you that I really have learned a lot from your videos and I think you do absolutely great job of explaining things thank you so much
Thank you for sharing your story!
You are very brave and tough. It gives me hope that after going through so much you are now healthy enough to work and help others as a nurse. And you still take time to do videos to spread awareness. That is awesome!
This is my first video of yours I have watched. But I loved hearing your story my daughter is 8 and was just diagnosed and I am wanting to document her journey because I can't find any kids story's and yours kind of shares all of it from a child to now.
hey I just found your channel I think its awesome you are getting information about crohns out there
You are so so brave and smart and amazing!
You are a very inspirational person and I am certain your patients love you very much 😘
I had peritonitis when I was about 18, and you are right, the nurses told me later one night my surgeon came in and we talked for at least 2 hours and i remember none of it.
I have Crohn’s disease and I got very very close to needing a colostomy bag. I ended up having my small intestine and appendix taken out. It wasn’t a in process. They thought I would be able to go home within 5 days after my surgery but I ended up being in there for 18 more days. I’m still in and out of the hospital almost every month with flair ups. I got put on many different medicine and none of them worked. And then I finally got put on remicade and that only worked for about 4 months or so. Right after I got done with my infusion I would get very very sick and end up in the hospital the next day. So the doctors decided that it’s probably not working anymore. So I go in the day before thanksgiving to see if hey will take me off of remicade and put me on humira. I was in remission for awhile but then it got very very bad once again then ended up in the hospital with sever pain. They did a CT scan, and ultrasound, had me swallow the weird pill thing that has a camera on it, and a colonoscopy. They found out I was bleeding inside so they put me on like 10 different medications. I get told everyday by people that don’t even know me that I’m faking my disease because hey can’t see it. My pain gets so bad that I can’t get out of bed or even move. I’m so far behind in school because of this. People say I look fine and that I have no pain and that I’m dramatic. But it really feels like someone is stabbing me in y stomach over and over again. But people never believe me (besides my family) that I’m going through so much pain. They don’t understand what we go through and what we will feel for the rest of our lives.
it's crazy how similar our stories are when I was younger!
(minus the ostomy and dilations part)
It's so crazy how similar our stories are in some aspects. I was diagnosed officially in 7th grade, but started exhibiting symptoms in 5th grade. My first symptoms were swollen lips and then in 7th grade I wound up losing a bunch of weight which prompted a full GI workup (Colonoscopy, Endoscopy and lab work). We specifically asked my pediatrician to test me for Crohn's because it runs on my dad's side of the family and at first my pediatrician was like "You're too young for that". But when the blood tests came back positive for Crohn's, she called us and said, "Oh my gosh. You were right." That's when I met my GI and we started Prednisone and Mercaptopurine. I've been on and off Prednisone many times for Crohn's flares and other health conditions related to Crohn's. In 2011, I developed peri-anal Crohn's (abscess and fistula) and have had many surgical procedures for that and been on Humira which worked wonders for about 4 years and then I reacted to it (neurological symptoms...numbness and tingling throughout my whole body). I've had numerous reactions to medications. I had one successful infusion of Remicade, but came back for a second one and stopped breathing, so needless to say, no more Remicade for me after that. I also was on Metronidazole and Cipro. I reacted to Metronidazole as well (I had stroke-like symptoms with that...trouble talking, walking, etc). There's a lot more to tell, but that's the basics. In December 2011, I was told that I needed a colostomy basically for the same reason Maggie needed hers, to let her gut rest and the abscess and fistula to heal and then I would be reconnected. Well, that's not what happened. It's now 2017 and I have a permanent ostomy now because last April 2016 I had surgery to remove my Rectum because the abscess and fistula weren't healing and I was so done with the vicious cycle of hospitalizations, pain meds, etc... I'm now on Entivyo infusions every 4 weeks and weekly Methotrexate injections. I'm also on Folic Acid, Prevacid and a lot of Vitamins and Supplements. Would I change a thing? Absolutely not. I feel the best I've felt ever since being diagnosed and I'm happy to say that I'm in remission for the first time ever. That's my story in a nutshell. I'm currently in my third year of technical college and pursuing a career as a Radiology Technician. I specifically want to be an MRI Technician. It's funny how after all the medical things that I've gone through (and Maggie, too) that we want to pursue careers in the healthcare field, but I think that's because we know what patients go through and we are empathetic towards them and understand their needs, fears, etc. When all said and done, I would love to work as a Pediatric Radiology Technician.
Jacob Kellen Same! I have Crohns. I was just diagnosed with it in February. And I want to do something in the health field like a pediatrician☺ hope your journey goes well ❤
poor thing thank you for sharing this experience. I hope you are doing well now. i just got my first infusion of entyvio today
Oh God honey i am so glad you survived all of this
I just found out about pouch liners-they're flushable. It's been a game changer for me. Brand name is Colo-majic. May not work for Ileostomy output, but for colostomy it's great!
Your video's have been very helpful. My aunt was diagnosed with colon cancer 2017. She has a ostomy. I take care of it. We have had some issues with, but with your help we are doing better. The main problem now is pancaking . If you give advice on that I would appreciate it.
She is such brave girl
Philly! are you from the philly area?! i am! born and raised. i thought you might be when you said shore in another video, but maybe not. CHOP is so amazing for residents and visitors alike. i had a stress test done there, they diagnosed me with a slight arrythmia
Thank you.
Just had my ileostomy 2 weeks ago and I'm having a very hard time dealing with it. And I am amazed at the lack of knowledge MOST of my medical professionals here have had concerning ostomy products/applications. Mine is also VERY close to my belly button so it tends to detach there a lot and leak. Very annoying.
That sounds super tough :( I hope your doing well now
Hi can I ask a question I want to go 2 great America but I was wondering do u use anything to protect your stoma when riding rides if so can u let me know
I had problem with stomach aches, fatigue and pale skin here and there from about 11 years of age, and I also lost weight a lot. When I was 15 I had a period when I just felt like "if I don't go to the bathroom in 5 seconds, I'll crap myself." It went away and when I was 16 my stomach pains became worse. We went to the ER and I had to stay overnight. The next morning I had an ultrasound and eventually a colonoscopy that confirmed Crohn's. I was put on some medication I can't remember the name of, which I had an allergic reaction too, and we switched to Prednisolone and Purinethol, which I've been on since then (5 years). For the past 2 years though, I've had more problems with blood in stool, nausea, cramps, fatigue and weight loss. My doctor would only prescribe a 3-month treatment of antibiotics and cortisone. About 3 weeks after the treatment ended I'd flare up again and the 3-month treatment began again. She wouldn't do a second colonoscopy or anything to check how my "regular" treatment for the past 5 years worked for me. So now that I've moved, I switched doctor, and he had me do an MRI, colonoscopy, bloodwork and feces work. Now it's been confirmed that my regular treatment isn't working for me so I'm actually going there today to discuss other options! Haven't needed surgery or something huge yet so I'm very grateful but I'm still annoyed at my old doctor, she didn't even journal everything in my records :(
I have a 48 year old daughter and she’s been struggling with loose bowls for about the last 10 years. She’s been to many doctors and many tests to no avail. Could this possibly be Crohns. She’s miserable all the time because she doesn’t know when it’s going to happen. Any suggestions.
is it true the only way to get diagnosed is a surgery n testing of your digestive track? or is theyre a new test? Ive always thought ive had it w my gluten n dairy diet but my dr never seems to be on board
Hi Maggie, your videos are fantastic and really helpful - you are a star! My name is Mark from Ireland and I am paralyzed for almost 19 years and have been told that I am to have an Ostomy/Stoma done ASAP due to severe incontinence- was told I’d have to have this and a Sprapubic Catheter done. Had the catheter done a year ago and it’s brilliant but am very nervous re stoma. Your videos and site are excellent congrats!
Can I contact you in private? Congrats on your engagement last year - hope you are both very very happy. You so deserve it.
Talk2u soon,
Loads of hugs,
MarkC
Dublin, Ireland
I can totally relate to your story. I hadn't taken any Crohn's meds for 5 year's. I never had any success with any of the treatment's or surgery. I did however go into full remission in Nov 2016 and it's been great. Yes I just had two more surgeries but I done feel like the Crohn's is back.
Don't feel
where in pa are you from? i’m from chester county!!!
wow we had surgery around the same time my surgery was June of 2010.
Whats a gravity feed?
Hello Maggie, I feel I have to contact you [if this is possible] to thank you for the numerous posts you have listed.Just after Xmas we had some awesome bushfires and during this time my wife Sandy had an emergency op.and ended up sporting a stoma.There seemed to be lots of professional information but nothing practicle as far as I was concerned. Your posts helped me no end, so I have watched you for six months now and I have learned so much about this new way of life.{there is also a mental aspect to having a stoma] thankfully we have had a clear run so far with no infections on the skin under the bag and Sandy's mental attitude is still a little fragile. Thank you again for being so forthright with your own experiences
acompanho seu canal mais nem todos os videos tem legenda bjos
I have not had any diagnosis yet but I have had stomach problems my whole life. My main symptoms have always been heartburn, acid reflux, constipation and changing bowel habits, and GAS. GAS IS TERRIBLE. I often look about 4-5 months pregnant. I also did something really stupid as a kid. I used to hold my poop for days because I was afraid of having diarrhea. I would hold it for sometimes a week and I feel like that messed me up for the rest of my life. I dont think thats the cause, I just think I made it worse. I have learned to be very happy about a good crap haha. I am supposed to go for an endoscopy and colonoscopy (my first) but with my anxiety disorder its so hard to book. I am afraid of having no control over my body. I was a very little kid like you Maggie, I was 40lbs when I was 6 hahah and 80 when I was 13. I was severely underweight and no matter what I ate I didnt gain. When I was 15 I caught my first and HORRIBLE week long stomach virus that landed me in and out of the ER for fluids, gravol and pain medication. I went back like 3 times in 2 days. I pooped to the point of there just being a toilet tissue full of green mucus. I cleaned myself out to the point of wiping out my entire gut of every healthy bacteria in there. My kidneys also failed from dehydration. I was feeling better by the 1 week mark but it took me a couple weeks to get my strength back and my stomach to stop hurting. After that virus I began to gain weight on my own for the first time in my entire life. I gained 40lbs in 1 year. That virus changed my metabolism or did something odd. I am also very sensitive, anything that irritates my intestines such as a virus it takes me a lot longer to recover then the average person. I caught another virus when I was 18 and this time it was your average 24 hour bug, low grade fever, diarrhea and one episode of vomiting. I lost maybe 4 lbs in 24 hours? (which is normal for anyone with gastro) but the following weeks is what did it for me. I lost an additional 10lbs after the bug because I just couldnt stomach anything for 3 weeks. No appetite at all and I kept getting diarrhea so id have to go on 48 hr clear fluid diets. I have only had 2 bouts of legitimate stomach flu ever and im thankful I dont get it much. It does a real number on me and I dont know why. I also cut out gluten and it helped temporarily but now I can't eat it because when I do I feel so sick. I also have weird "flares" once and a while where my anus feels irritated on the inside and I pass mucus, it has been blood tinged on 2 occasions. I dont think I have crohns but I do know I likely have IBS or some type of IBD. I am a Registered Practical Nurse and we had a norovirus outbreak at work recently and I was terrified of getting it (luckily I didnt). I guess I should book my scopes. Im tired of my stomach hurting every day, I dont know what its like to feel normal. Ive learned to tolerate it and work through it when a normal person would be in the ER from so much pain related to gas buildup.
Emily Joy have you been checked for endometriosis via laparoscopy? I had horrible GI issues for years, thought maybe it was IBD, but all my scopes came back clean. It turned out the outside of my colon and other organs were full of endometrial tissue and adhesions. I had excision surgery and the worst segment of my colon removed which helped my lower GI issues a lot. I still have upper GI problems though sadly no clue what's causing them (I found this channel doing feeding tube research). Anyway, it is worth checking into endo if your scopes come back clean. Most doctors don't know endometriosis can grow on the bowels to such an extent. The inflammation it causes in your abdominal cavity can cause all kinds of GI symptoms. It took years and years for me to get properly diagnosed. Doctor always write off everything as "stress" and "anxiety" until the day they finally do the right test so don't give up!
How to gain weight in chons patient
Hi. Please are would like to ask you a few questions.
Do people carry their colonstomy bag for a life time or they would at some point in life stop using the bag.?
Can a woman with a colonstomy bag get pregnant and carry the pregnancy to full term?
I believe they can, though sometimes the alteration of the shape of the digestive system can mean the uterus is positioned differently and the baby doesn't get in the right position for vaginal birth and a c-section is necessary.
I've seen all your videos Maggie and the difference in your health since the ostomy is remarkable. I've had mine two years and was supposed to get it reversed after 6 months. Ended up with more surgery, changing from a loop to an end ileostomy because I was frequently still passing stool. Not sure where I'm going from here yet. Also can I ask a personal question. You always mention your dad and I wondered what happened to your mum. Sorry if this is not app for me to ask. Xx
Loved your story. I pray you are eating a healthy organic diet, no processed foods etc. to minimize any flare-ups. I don't have your illness, but I have had auto immune disorders in the past, until I changed my diet 5 years ago to an all organic diet, reversing my illness. Unfortunately, doctors are not trained in nutrition, and just seem to write out prescription after prescription. God bless you Maggie!! You're one brave strong woman!!
So, you never had bleeding as a symptom? I would REALLY like to email you some of my images. I have Ehlers-Danlos Syndrome, and my current GI isn't familiar with THAT, but he's also insistent that I'm having a bad IBS flare. I KNOW my IBS... this isn't it. I've developed hyperlipidemia, and my hair and eyelashes are falling out, my fingernails are breaking, peeling, ridged deeply. My regular meds aren't working properly. I can't eat.
actually very early on I had terrible bleeding before I my strictures developed!
I also have EDS and am having some gastro issues that I'm not getting on particularly well with solving.
Actually blood in the stool is much more prominent in patients with ulcerative colitis. It is not a classic symptom for Crohn’s.
I just find it funny how nonchalant you were when the doctors asked you if everything was okay because you looked sick and then replyed, "yah I'm fine." Even though you probably were thinking to yourself, "NO I'M NOT FINE!!! THIS HURTS!!!"
Hi Maggie. Brand new to your channel, as well as my own ileostomy (currently 70 days since surgery). You have great content on the subject and I thank you for it. My one question is, how did you decide that you wanted to share your story with the world on the internet? I myself have tackled with the idea of sharing my story and creating more awareness around the disease and everything that goes along with it, but I have always been worried that would become my identity and that people might discount me or write me off because they have doubts about my own abilities due to having the disease or so much to deal with. I've always told myself I'll share my story once I amount to some kind of success just to show people, that despite what I have and what I've gone through, I can still be succesful as a human being, however that may be defined. I just haven't defined what success looks like yet. Would love to hear your thoughts.
haha "stupid beep beep pump".
You will never believe the number of people who admire you, Friend. As I wrote below, this is something that you NEVER chose to have when you were born. I truly admire you and the way you explain what you have gone through. All you need ((I hope is a reality now) is a TRUE husband and a companion who is there for you at all times, to pamper you, to help you, to spoil and adore you all the way, and believe me... some men are out there and who are TRUE men, no matter what!!!
I was diagnosed back in the early 70's. They treated my Crohn's with laxatives, because children don't get Crohn's. I was able to somewhat deal with it on my own until I turned 38. Done all the drugs and biologics for 14 years now. My Crohn's came back 100 times worse.
I'm right now doing my research on whether having the surgery with the stoma afterwards is worth it for me.
Love your videos and thanks.
1st off No way would they use laxative to treat Crohn’s Second there a loss of cases of kids been diagnosed with Crohn’s disease and third the first time you get surgery you don’t end up with an awesome a bag ..... They remove the diseased area trying to avoid that
Yeah one of my family has it
OMG...I was just about to complain about your camera and audio lol
Why do doctors always recommend milk? It's the worst thing for ppl with GI issues.
Makes me sad to hear about your story about doctors milking you because they have no idea what they are doing or are greedy fux. And because of poorly chosen treatments you might develop cancer if you haven't already.
Are you familiar with Dr. Mark Hyman’s TH-cam channel? He has very valuable information on how to heal/recover, which may help you. In short, American food / diet is TOXIC. Dramatic change in diet may help. Also, intermittent fasting is helpful. Last, read Kathryne Pirtle’s book, PERFORMANCE WITHOUT PAIN.