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I Didn't Know Crohn's Could Do This! (Symptoms I've Had OUTSIDE of My Intestines) | Let's Talk IBD
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- Опубліковано 15 бер 2023
- Today I am talking about the ways Crohn's Disease, Ulcerative Colitis, and other forms of Inflammatory Bowel Disease can cause complications outside of the GI tract, called extraintestinal manifestations. I share a bit of my own history, including kidney issues in which I've required pyleoplasty surgery and ureter stents well as other issues that can be experienced like anemia, Primary Sclerosing Cholangitis, arthritis, Pyoderma Gangrenosum, and Erythema Nodosum! If you think Crohn's was bad enough, it likes to get other organ systems involved in its fun, so do not ignore any symptoms you may experience!
Check out this great page from the Crohn's Colitis Foundation on Extraintestinal Manifestations: www.crohnscolitisfoundation.o...
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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
![4 Common Foods that Make Crohn's Disease Worse [AVOID THIS]: Gut Health Expert](/img/n.gif)
Irritable bowel and arthritis are twins. Oh boy is it uncomfortable when you are stuck in the bathroom with a sore back too. No comfort anywhere. Now the knees, shoulders, fingers, ankles and the small bones in the feet are becoming more arthritic. I refuse to stop doing things, though. It's more important to me to walk, garden, cook and live as full a life as possible than to try to coddle my achy bones. It slows me down but hasn't completely stopped me yet. I do, however, shuck the shoes the minute I get in the house and garden sitting on a low stool. There are adaptations that are necessary.
100%
Hi. Great video lots of good info. I have polyathrophy, ARs cousin. It affects my tissues so it is very extensive. Im a newby at all of this. Diagnosed on 2021. I am on Humira as well and have many GI issues. I also have a loving husband like you. And you are a sweet and awesome person. Hugs!!
Try using Aspercream. I have arthritis and use it every day and it really helps. The aspirin goes into the sore muscles and really helps me a lot! Good luck.
I’ve only had Chrohns for 2 years & I just started experiencing the osteoarthritis. It has changed my life; in dealing with excessive body aches. Reading your messages let’s me know; the arthritis is a side effect of Chrohns
In my 20's, a Dr I had said to run on ' symptoms, no matter how small, that last for seven days and are the same or worse, go get checked out'. His logic was if it lasts that long your body obviously isn't able to deal on its own. It's been my go to since and has head off more than a few incidents over the years.
Autoimmune diseases are awful & seem to all be connected. I was diagnosed with several..
Thanks for your info. Maggie. We all go through alot
I call AI the bad gift that keeps giving.
I had Ileostomy surgery 47 years ago due to ulcerative colitis. I have had over 30 kidney stones due to my Ileostomy (dehydration, low citrate). Life saving surgery, but it’s the gift that keeps giving😊
I'm a recent blow hole iliostomy patient. It has made me totally housebound. I was hospitalization for over 70 days. I'm home again after a revision that gave me a stoma. The stoma has retracted on the bottom. The ostomy nurses have been helping me for weeks to try and get a seal. My skin in the area is very painful.
I feel like I'm following in your footsteps.
I'm so grateful for your videos. They guide me on what I might expect and what I need to ask my surgeon.
Please know that your video work is helping many people who feel overwhelmed by this diagnosis. I'm facing this as a soon to be 73 year old!
I can practically write a book here on my family. Crohn's Disease is hereditary on my husband's and my side of the family. Crohn's Disease goes back down my Dad's mom's side of the family. I had a younger sister who was born with Crohn's. My 27 year old son was diagnosed with Crohn's at age 7. Due to his Crohn's, he has had pancreatitis, fatty Liver, joint issues, Vitamin D2 and calcium deficiencies. He was on Humira for 1 year. His GI doctor switched him over to Stelara due to the fact that the Humira wasn't working. My husband was diagnosed with Crohn's Disease at 33 years old. His got so bad that he had his whole large intestine and rectum removed. He now has an ileostomy. He has joint issues, kidney issues, vitamins B12 and D3 deficiencies. I was diagnosed with microscopic colitis years ago. I have also been diagnosed with follicular cystitis and interstitial cystitis. Both are very painful. My Dad, his younger sister, and 2 Maternal aunts were diagnosed with Crohn's Disease. My husband's mom was diagnosed with Crohn's Disease a few years back. We are always trying to find ways to have a better quality of life.
Wow that's horrible I'm so sorry :(
My gosh. I am so truly sorry to hear what your family has been going through. I have suffered from Crohn's disease since the age of 12 so I know how horrible this disease can be. I can't imagine your little boy going through it at the age of seven. You are all in my heart and my prayers.
I just have to say it, but why? Love is love, but we should more carefull in what we put our children
It is not hereditary. It is caused by bacteria- mycobacterium avium
Crohn is not autoimmune
@@user-gg5mk6mx8g that's wrong
Hi Maggie, I’m a nurse like you and have RA, I am being treated with Humira by my Rhumatologist. He has never done any Humira levels and had NO clue that Humira had all these potential risks!! Keep up your positivity you are a true trouper and an inspiration to many people!! Keep us posted on your barn? It’s worrisome because I know it means a lot to you and Zac 😢
I'm 73 and have had intestinal issues for 20 years. I have empathy, for sure
I have IBS and endometriosis. They both started around the same time and I feel like they are definitely related. As I have researched my conditions I have found out that if you have one, you often have the other, not surprising! And my Fibromyalgia seems to be connected as well, gotta love comorbidities lol.
Happy Colorectal Awareness month! As an RN I really appreciate your channel. I’ve told our colorectal surgeon about your channel in the hope he recommends it to his patients.
Great idea 🤗
You are an inspiration from God! I don't have Crohn's or any IBD issues, but I do have some depression issues as a result of sexual trauma as a young boy. At the very least, you've shown me that I have a whole whole lot to be happy and thankful for compared to your lifetime of medical issues. So BRAVE and RESILIENT! God Bless You for your work!
❣🙏
Q1
Autoimmune disease quickly became diseases. To all my sisters and brothers I send you gentle hugs and prayers for understanding family and friends. My social and work life have taken a serious hit.
Hi, Maggie, I have watched your all your videos. I have IBS was diagnosed about 4 years ago & I went through hell for about 4 months I was so sick at times couldn't get out of bed for a week. I went to so many doctors' appointments & er visits. When I was in with a GI doctor another doctor came in & asked do you mind if I take over your care. I just looked at her & was like why you would want to deal with me. Then I said sure why not another doctor LOL. Little did I know that she would change my life. The doctor Came over and look at my chart & said you have IBS I want you to take this med. & this one & track you foods. Ok no problem I took the meds. and it helped me so much I went from suffering to getting my life back on. My next visit with her I cried I am so very thankful to have her as my doctor. She has taught me that your intestines are your second brain it is mind blowing how much your intestines are linked to a lot of things.
Please what was the medicine. Thank you so much. Corinne. Brighton. England
What medicine please
I am 53 years old. I have had Crohn’s disease before I was a teenager. No one knew or found until I was 41. No matter how much bleeding or pain I was in due to a blockage. They would do a colonoscopy yearly but no one found or knew what they saw. They were more concerned with finding gang green again . I had that of the intestines as a infant. So with having my intestines already being compromised, my Crohn’s disease is so severe. In the past 12 years I have had two bowel resections. The infection made my healing so much worse and way longer than expected by the surgeons. My last blockage and surgery was bad enough that my intestines was ripping from the inside of my intestines. This happened because I was mixed up with two other women with my same first name. So all my tests got spread between those two and theirs were going in mine. So the specialist kept telling me there was nothing wrong with me even though I was vomiting constantly throughout the days. My daughter finally said that if I am still vomiting for a week again then we are going to the hospital. That happened and they found the extreme blockage. There is more to this long story but the conclusion to my story is that I know how difficult it is to just be able to function like everyone else. I am tired a lot . I have many different low vitamins including vitamin D. Lol. B12 has always been a issue since I was a child. That’s because I had 3/4 of my small intestines removed as a baby. Apparently it grew back but with scar tissue. Atleast that’s what I have been told. I was only 2 weeks old when my surgeries started and I was 7 months old when they figured out the only way to feed me without using my digestive tract was from my jugular veins and into my heart. It was experimental in 1971 when I was born. So the medical field has grown in knowledge so much since I was a kid. To many horror stories to tell about my intestines and tests. Haha
I loved watching your video because I do not feel so alone. I do not know anyone with this disease. So knowing that what I am going through. I am not the only one. Your a brave woman and keep up the great work on Utube!
You should have the scar tissue removed.
Thank you for putting this video together. I've had Pyoderma gangrenosum, Uveitis, Kidney stones, Anemia and Gallstones. I also have Inflamation behind my tailbone that I get a steroid shot where the doctor has to put a needle through my tailbone to inject it, and I get that every 6 months, as well as Primary Sclerosing Cholangitis. Inflamation for us primarily shows up in out intestinal tract, but inflamation still goes everywhere. It's good to remember that this is a whole body disease.
You are bringing back such memories for me. The E.N. On my shins and calves were so dang painful. My skin was so bad, and so much other immune inflammatory issues. I had to be on massive steroids for seven years, either via IV or by mouth. Destroyed my spine. I still need to get scans once a year and I have not had any kind of steroids in at least fifteen years. Unfortunately, all this maybe related to Crohn’s, but it is also a problem for many of the immune related illnesses. Now, 32 years later from diagnosis, thank goodness modern medicine does not have to include long term steroids. If I was young now (am 60) and was just now diagnosed, I would hope that a GI would go straight to the biologics.
I know for a fact my IBD has caused a lot of other issues. I could write a book 😂 my worst is severe arthritis. It stinks! Great topic and video Maggie! ❤ Thnx for educating people, they really have no clue what we go through…not their fault, it’s just because they don’t understand. That’s why it’s good to talk about these things. Have you ever been on Lialda?
I appreciate your videos bc you make me feel less alone with all the issues I have.
I totally understand your insurance struggles and all the exhaustion that comes with being ill so often.
Maggie you are amazing! IBD causes so many things … people just don’t get what we go through, I’ve had UC since 2015, colon removed in 2019 and I’m still suffering .. got 2 bags now as have fistula and hernia behind the stoma .. and have diabetes from the prednisone.. it’s like a never ending journey … hopefully surgery again soon to sort some of it … although wonder if it’s worth it?
But Maggie thank you for your posts I love and respect you so much ❤
You are a true warrior 😊
Am sorry 😞 sending you hugs 🫂
This is so spot on. I have been dealing with multiple autoimmune-driven and other processes and various surgeries for decades; and your channels help me keep my daily focus and outlook in a positive and peaceful perspective. Thank you so very much! May God bless you always.
Thanks Maggie for your insightful, quite informative and helpful Vlog on IBD. Your efforts are appreciated as us your sense of humor amidst your straight talk approach. While not affected by IBD, your series helps me better understand my nephew's experience. Thanks. 👍
I’m sure my Crohn’s medication had a lot to do with renal failure although they blamed it on my high blood pressure. I’ve heard of so many people who had Crohn’s (plus stoma) go on to have renal problems. My Crohn’s has been dormant for 30 yrs but I’ve then gone on with renal failure, dialysis, transplant for 15 yrs, now back on dialysis and hopefully another transplant.
You're looking especially fabulous today Maggie! That blue is divine on you 💙
Dear Maggie, I am so grateful for your video’s. It is so great to see how you spread awareness and are so open and honest about the issues that come along with living with this disease. I have been diagnosed with Crohn’s at 26 years old (I’m now 35), but the main reason it took so long to figure out why I was always anemic was because I also have problems with my Thyroid (yes, also an auto immune disease), and I figured that was the reason I was always so damn tired. I dragged myself through school with very limited ability to stay focused, because it is not something you can explain to an outsider without them thinking you’re just exaggerating.
I am very fortunate to have really manageable Crohn’s now that I’m on medication that works for me. I work at a pharmacy myself, but I too have been put on most of the medications you mentioned: Entrocort(Budesonide) for a few months, then mercatopurine as well, which actually worked pretty good for me for a few years. Eventually they wanted to switch to the more active component of Mercatopurine, which is Tioguanine (Thiosix), and so far that seems to be working too. I definitely experienced the hair loss as well when we tried upping the dose of Mercatopurine, so I’m glad that seems to have settled down.
I think being anemic is the most common, and because I cannot take the pills for it together with my other medication, it’s also the problem most frustrating for me to deal with.
So yes, I can confirm that having Crohn’s disease can come with lots of other issues and I’m glad you took the time to make others aware of it. Thank you for always being so positive and honest, even though you’ve had so much more struggles than I ever had!
You are a very strong ,brave beautiful woman. You have been through so much and I admire you. Thank you for sharing ❤
Hi Maggie. Very informative video. I have a friend that has Crohn’s , well we both do. I always thought it affected everyone the same. I learned through my friend, that the Crohn’s affected us both differently. It was a today years old that day. At 73, I learned from your video. Especially the part of being more aware of things that pop up that could potentially be a problem if not getting it checked sooner rather then later. Thank you.
Hi Maggie, I literally stumbled across your video and was so impressed with all the great information you shared. I now know that it was put in front of me for a reason, no coincidences! I have a long history of battling IBS. Over the years I have experienced some new symptoms as well as fluctuations from the same old symptoms. I am diabetic, I have 1 kidney, I have had numerous stomach issues for years. One thing I have noticed lately is that as I get older, the doctors are quick to dismiss my complaints and chalk it up to "It must be IBS related" and leave it at that. I am 63 yrs old but I am far from just settling. I try to advocate for myself, but it can be hard without knowing where to even begin. Your videos are going to be so helpful in this area so thank you! I am thinking about making an appointment to see a gastroenterologist to see if I might have Crohn's. Would you be so kind as to give me a few questions to ask him? I don't even know how Crohn's is diagnosed. I do have some symptoms but as I stated before they are similar to IBS, so knowing the main differences would be helpful. I look forward to more of your videos! Thanks again for your kindness and help. Blessings to you! Michelle
You are well versed in medical terminology! It's refreshing being taught something new. I've had Crohn's since age 13, I am now 54. So many side effects over the years. Thank you!
You are amazing Maggie.I find your videos very educational and enlightening God bless you..
Thank you for making a video so in depth I appreciate it it was very informative and helpful I have Crohn’s and lately life been kicking me down but I keep on fighting
I have Crohn’s disease and have had so many questions this was so helpful
I have really bad gum inflammation and some recession due to Crohn’s, but I guess that makes sense because the mouth is part of the digestive tract! I go to a periodontist and she said she’s getting more and more patients coming to her with Crohn’s and gum issues.
I just found out I have IBD Crohns and much more. Love your videos. I'm so happy to have your help with this disease.
Maggie, your videos are awesome! I just recently found a new to me extraintestinal manifestation of my Crohn's. Inflammation of lymph nodes in my lungs. My P.A. at the G.I.'s office said my CT exam it had 2 months ago found inflammed nymph nodes in my lungs. The PA in the pulmonologists office said he doesn't think it's Asthma, but instead it is Crohn's inflammation in the lungs. I googled this and found three studies that show it is related to Crohn's Dosease.
I have had leukemia when i was 9 and I had chemo and radiation from head to toe, I now have a chance to have cancers for the rest my life. I already have had Thyroid cancer, bump in my back that was cancerous, colon cancer and some type of cancer that they do not recognize. They sent a sample to the states, i live in Canada. I have a colostomy and soon i will have my eye operated. Before my colostomy I had lots small intestinal obstruction and colon issues and many of them sent me to the operating room.. So I just take a day at a time.
Hi Maggie! I SO love your videos they have helped me so much I started watching u in 2019 when I just got my bladder removed your videos helped me understand what ostemy stuff was, u beat the ostomy nurse of explaining it to me,way to go maggie!!!!!!!
Your still educating me I have always had bowel issues growing up but was always told to intake more fiber. Then in 2014 was diagnosed with radiation colitis from my cancer in 2003. 2014 after the colitis diagnose I had bladder cancer and the surgery went well. A month after the surgery the hospital I went to still has no idea why this kept happening but I think it was what u explained, because 1 area was affected which affected the other area, which is wht I think this kep happening.
For 5 years I would get a bowel blockage then I would get better go home, 2weeks later back in the hospital because I would get a hole in my bladder and the urine would go into my adimin they would do surgery. After 5 years of this would be over 100 surgeries on my bladder , surgeons refused to do surgery on any of my bowel obstructions 1 to 2 every month for 5 years. Final the bladder Dr told me u no longer have a bladder therefore, u need to have an ostemy or u will die, well not much of a choice.
I 2 went septic because the hospital in my town miss diagnosed me and said I had a bowel obstruction but instead had a hole in my bladder leaking urine into my adimin. I woke up only to hear I almost died 2x and was airlifted to a bigger hospital and was already on a ventilator. I was told noone thought I would live, I woke up not knowing who I was or where I was. I thought I went to heaven but realized I was at some hospital so then I thought I was in a car accident, til this day-I have memory issues, anxiety attacks, brain fog, migraines. I never had any of these prior to going septic. The Dr told me I was hours away from dying . The surgeon told me 1 more hour and I wouldn't of made it, needless to say I don't go to that hospital and I can always no when Im having constipation because my urine gets dark. I have only had 2x with uti and that's a whole nother story.
I also have ostemy wafer and pouches I don't need and would love for someone to use them.
Going on 60 and learning alot from your videos, keep educating us Maggie. I remember u saying one time-Im sick of being sick all the time so get it.
Have an awesome week
Hi Maggie, Im just a curious onlooker so to speak…first, I just want to say I have thought alot about you since ive found your channel which has only been two days but your story has been very enlightening. I watched a couple videos and could tell you have been through alot and we’re fighting back from starting to cry and I felt so bad about that and wished Incould just scoop you up and give you a hug…your an amazing , intelligent , beautiful young woman and you have a fan from michigan! Im a 60 year old married (3 times) mother of one son by the way….anyway my husband has alot of issues with his bowels …had quite a big section removed in his late thirties. I had no clue about so many people having stomas ….or even what this was in reality but now im going into the rabbit hole to look,around and get my eyeballs opened thanks to you😁🤣so ill be thinking of you and sending positive vibes honey…😊
Thanks so much for sharing. Really informative.
I was diagnosed with degenerative disk and joint disease in my 30's. By the age of 46 I was dx'd with Ehlers-Danlos Syndrome, which is a connective tissue disorder, causing the collagen in my body to be faulty. Hence the early onset of osteoarthritis in the majority of my body. I was born with GI issues, which finally got dx'd after my EDS diagnosis. Liver disease, dysautonomia, Chiari Malformation, skin issues (I was born with some kind of fungus on my right palm and was told not to remove it as it would come back worse and inside my body), rashes and hives. I have had many kidney stones and recently, reoccurring UTI's. I just got back a few of the blood tests my kidney specialist ordered, and everything points to ulcerative colitis and a plasma cell disorder.
Hello? Creator? I'd like to exchange this faulty body for one that's not broken. Ok, thanks!
Hi Maggie, I have Ulcerative Colitis since October 26th 2009. Before that I had a algodystrophy at left wrist, I never broke my wrist. I take Asacol 800 mg 2 times a day + Bio k in the morning. I'm in remission from Ulcerative Colitis for 8 years now ! 🙂
It is the gift that keeps on giving. Arthritis in my right shoulder and right foot.
Thank you Maggie, you are amazing ❤❤
Before and since my diagnosis with Crohn's I've experienced everything from hair loss, eyelid swelling, neurological and neuropsychiatric symptoms, seizures, significant hair loss causing large bald patches, total body muscle loss and persistent weakness, joint pain and inflammation, various skin rashes and nodules, chronic oral thrush, multiple episodes of acute pancreatitis, fatty liver changes, and high cholesterol and triglycerides as an underweight 29 year old. I can't honestly think of a body system that is unaffected in myself. It was crazy thinking for years that I had all these weird problems and nobody could tell me why.
I don't have Crohn's but I find your videos very interesting love watching you Maggie
Thanks for sharing ❤
THANK YOU FOR THIS VIDEO! Aside from Crohn’s for 30+ years and colectomy/ileostomy in the last year, I’ve experienced soooo many of these other issues/ailments/symptoms.
Anemia. Joint pain and arthritis. Knee surgery (because of avascular necrosis from long-term high-dose steroid use). HAIR LOSS! Lots of hair loss (Imuran, methotrexate, surgery, etc.). Many skin issues. Liver issues. Female issues… the list goes on!
Same as you, I go through the thoughts in my head every time I have a “different” issue come up - should I contact my dermatologist? Should I contact my ostomy nurse or surgeon? Should I contact my GI doc, etc!
My arthritis hit before the gi symptoms. It wasnt until 3 years later that I was diagnosed with a "nonspecific IBD", and 12 years after that before a definitive Crohn's diagnosis. I was on 6MP and 5ASA for 10 years before starting Remicade. Unfortunately, it took a surgery before I was switched over to the more effective treatment regimen.
I lost a lot of hair on remicade. And I tend to have more joint pain now after starting biological medication. It gets better after I start moving around. I also get dry patchy skin on my face. I’m currently on Stelara my 2nd shot is going to be on April 13th . Excited but scared.
Thank you for your informative videos Maggie! Love them and I wish you good health ❤️
I’ve had a lot of skin issues because of crohns. I had pyroderma gangrenosum most notably. There was a lot of medical misdiagnosis and mistreatment related to that resulting in a prolonged recovery and permanent scarring. Please make a mental note in case you ever experience this in the future. I don’t have an ostomy and my ulcers were on my foot so be aware that they can happen anywhere on the skin!
You are amazing and most appreciated. I’ve been dx with Crohn’s for 21 years now and my insurance does not have a specialty pharmacy to cover my Stelara. I’m working on other options. Frustrated that if I didn’t have insurance it would be covered by the pharmaceutical company. I’ve been on many biologics and the Stelara seemed to work the best. I currently do not have an ostomy, but another surgery will result in one. I was allergic to Budesonide and other meds have affected my liver. So currently I am going untreated. I feel like a ticking time bomb. I’m just really frustrated right now. I feel like my doctor could do more. I’ve been seeing him the last 21 years. Sorry. Just needed to vent to someone who gets it.
I have crohns disease and just recently went blind! I kept going to optometrist and giving me eye drops that didnt work. I couldnt drive or work at my home job. I finally called my gastrointerologist and she put me on high doses of steroidd and it was a miracle!! I had no idea crohns could cause this!!
Plus I've had problems with my left kidney and diverticulitis I dont know how many times.
First of all, that is so scary!! I'm glad the high dosis of steroids helped you 😊
Very curious though about this as someone who also has crohn's disease and who eyesight keeps getting worse! Did you became blind suddenly? Was it a quick decline? Or did it take years to develop? And what other possible side-effects did you have with your eyes?
If you want to answer, of course! Take care 🙏🌼
@@sofienummers Sofienummer, I have a hunch Brenda maybe had uveitis, which I had for 7 years.....often inflammatory diseases (I have AS) and especially ones affecting the gut can trigger eye inflammation. There were attacks where I could not see my hand in front of me (white out). Steroids and dilators are standard treatment. If not treated, you can get permanent blindness. Do see an ophthalmologist if your vision is declining (not just an optometrist).
@JumpinJavaJane Thank you for your reply :) Yes, uveitis sounds like a very plausible reason.
I'm glad there is a treatment for it, although no one likes to be on steroids...
Oh wow, that sounds scary! I hope you are you feeling better now 🌼
And thank you, I did go to an ophthalmologist, but thankfully she didn't see signs of uveitis. But I'll have an extra check-up, if my sight will deteriorate even more!
@@sofienummers I had trouble with my eyes having lots of sleep in them like more than normal for like a year then within about 2 weeks my eyesight declined drastically. I am on a lower steroid dosage now and my eyes are acting up again. Have an appointment with my gastro so I will see what she has to say.
I always appreciate the direct no-nonsense, yet friendly distribution of info on this channel. I survived a difficult time, but what helped me survive adversely affected my bones.While I am very OCD on observing any changes, my personal superpowers of deflection and procrastination can work against me. I carry a "cheat sheet" which is a one page (in small font/pitch) listing of my current medical issues, medications, vaccinations and past diagnostic/surgical procedures whenever I have a procedure or a medical visit.
I have an autoimmune disease but it isn't IBD, I too get some of the symptoms you have suffered with. My skin doesn't heal well, hair loss and arthritic pain. Constant infections , it is good to know there are others out there that also have similar symptoms
I have Crohns, Rheumatoid Arthritis & Epilepsy. Had my bowel removed 18mths ago. Have named my stoma Stan. I'm lucky I have great condition nails & hair but suffer with my skin. Around Stan is very sore though. Luv your vid's 😊
I got diagnosed with Chrohns disease in Sept 2021; I spent 81 days in the hospital & I’ve had 4 surgeries in 22 months. Arthritis is a major issue; also wearing a permanent colonoscopy bag, having part of my colon & small intestines removed; 2 fistula cyst in my stoma area requiring surgery. It’s new for me & I’m still trying to adjust to this New normal. Chrohns disease is very challenging 😰
Am so sorry 😢.
I love ❤ your videos
My erythema nodosum was diagnosed by a dermatologist in August 1997. That dermatologist DID NOT tell me anything about Crohn’s Disease. My Crohn’s Disease was not diagnosed until January 1999 by a gastroenterologist. 😡
My son was diagnosed when he was 20 yrs old. When he was 18 he started with swollen lips and after going back and forwards to the doctor he was sent to an oral surgeon who diagnosed oral granulomatosis but at the time he has no gastric issues. Fast forward a few years and he started with stomach pain. He was diagnosed with Crohn’s at that time but has refused all medication. He is now 36 and does suffer with bowel strictures that cause blockage and severe pain but mostly he manages his condition with fasting and eating small and often but with many dietary changes. This is not what I what for him but have not been able to convince him to seek more treatment with the exception of IV transfusions periodically. I worry that it is a time bomb waiting to go off - but nothing I can do but be there if he needs me.
I have an anxiety disorder and i cant tell you how many times i had to tell people no it's not just because i get scared and my heart beats a lot faster.... there are so many random things in you body that can be caused by "just anxiety". Throughout the years i have delt with weight loss and weight gain, acne, irregular periods, hair loss, rashes, heartburn disguised as chest wall pain....the list goes on! I once had a bad panic attack for no reason when i was just watching cartoons and eating dinner that was so bad it caused the left side of my face to become paralyzed. I thought i was having a stroke but turns out it was bells palsy due to stress. My face was paralyzed for a whole year before getting full function back in part with rigorous physical therapy......i hate that people can't comprehend invisible disabilities, illness, or disorders.....
Edit: it took years to find the perfect combination of medications for my anxiety. One medication in the past actually has given me a permanent ringing in my ears... :/
Hi Maggie…I have very thick hair, never lost any from the Remicade and 6MP, but I know we’re all different. I have Ankylosing Spondylitis which seems to be associated with Crohn’s too…but no one has ever heard of AS 😂. Thank you so much for all you do. These autoimmune illnesses can be very isolating ❤️😘
Doesn’t Dan Reynolds’s from Imagine Dragons and the guy from Try Guys have AS? Awareness is growing!
@@bee42Sad Yes!!! You're right! Thank you for letting me know. I knew about Dan Reynolds, but not the other guy.
@@judibeth6483 His name is Zach Kornfeld and I think he found out after doing a Try Guys yoga video and struggling so much many of the commenters told him to get assessed at a drs.
which medication you are on
Thank you söö much ❤
I've been losing my hair to where I need to use hair powders. It's awful and embarrassing and I still have no clue why it's happening.
Kwashiorkor can also cause hair loss and skin rashes, if your ostomy output is really high and your losing protein and underweight. EZMelts sublingual iron can be a real help if you have iron deficiency anemia. You put it under your tongue and a lot of it goes directly into the blood stream, bypassing the digestive tract altogether. Doesn't taste bad either (encased in vitamin C). Really helped me.
Love spidering symptoms like that. I had a hamstring injury that pulled my hip out of place that pulled my back so my spine herniated and that caused nerve damage down my left leg. Reached spine surgery after nine months of dealing with a major spine herniation. Was 1.5 months shy of my 20th birthday. Now I live with the pain and hope I don’t reherniate
I have had Crohn's in my eyes. They looked like I had blood in my whites. It was very creepy, and after seeing an eye doctor about it, he was seeing it in CD patients more and more often. I've had a lot of these problems.
As long as I had active colitis and was experimenting with all the different biologics (none ever worked) and taking Prednisone my symptoms just multiplied. A year after having my colon and rectum removed and getting off all those drugs, I feel great. Only have a little joint pain and minor leg weakness now which I am working very hard to improve with physical therapy and exercise.
In 2019 my colon perforated. I had emergency surgery and wound up with an ileostomy and diagnosed with UC. A year after, had j pouch surgery. Soon after that, I got the crohn’s dx…I wound up with several fistulas and had surgeries on those. A few months later in the middle of training for a new job I love, I started to have extreme pain in my knees. Just thought I was getting old, haha. The pain got worse and worse and soon after I could not walk. I then I noticed necrotic skin on my ankle (wtf! 😳) I wound up in the hospital again for the 38482th time with a mysterious condition on my ankles that was eating my skin from within - this ended up being pyoderma gangrenosum. Another month in the hospital, wound vacs, wheelchairs and walkers. Remicade was administered and seemed to work for a bit, but then failed. I gave up, I had enough of the suffering over the years. A Hail Mary in the form of Stelara was thrown and it *seems* to be working so far, but I’ve got a long way to go. TLDR: my IBD presented in ways that I had NO IDEA were possible. Thank you so much Maggie for all you do and to everyone else suffering, don’t give up yet. ❤️
I have psoriatic arthritis and I have found that I never know what my bowls are going to be up to on any given day 🤦🏻♀️ I go between being completely constipated to fully liquid within a day…very unsettling. I have also experienced hair loss and issues with my eyes that I never knew would come with arthritis.. I use immuneo suppressants subcut injections monthly and I have constant issues with my mouth, ulcers, swollen lips, oral thrush and cold sores 😕 oh the joys that they never tell you about when you first start treatment but when you experience it and ask about it then they tell you x
Maggie I have had Ankylosing Spondylitis since age 30 (age of diagnosis but I suspect I may have started in my teens). I recall always being exhausted in HS and I still am at age 67 with a good day tossed in on occasion. I suffered with uveitis/iritis for 7 years (age 49-56) and needed several eye surgeries. But this saga all began at age 29-30 - I kept getting very painful tendonitis's in my toes, a ganglion cyst on my foot and bursitis in a collarbone. One painful thing after another at just age 30 while taking care of 2 little active boys (a foot doc asked me if I was stepping on Legos!). Then I developed sciatica and swollen excruciating painful feet (from size 8B shoe to 8EEE; that lasted 2 years) as well as a 'sausage digit', meaning my middle finger was 2-3 times its normal size.. The feet, sciatica and a pelvic x-ray confirmed the diagnosis of AS, along with a blood test - HLA-B27 positive. Years of stomach issues. Today I have a trigger finger, alopecia (fortunately in places that are not noticeable) and bad knees. I also got breast cancer at 52 and I feel somehow there is a connection. This condition migrates from one place to another. I think what is scary is if this is what I see on the outside, what is it doing on the inside - AS can attack organs as well. Crazy thing is looking at you or at me, we get many doubters. In fact people say I am energetic! I just carry on as best I can....don't let it drag you down or be your life's ruling factor.
Wow, sounds like life’s been kicking your ass , hopefully you’re kicking it back. I got some anal absences issues and am hoping the idiot “ specialists “ I’m dealing with can provide some improvement.
Thanks for posting the video. I have developed an odd satisfaction with watching IBD videos on youtube :/ I have UC and from time to time extraintestinal symptoms like itchy skin, strange pains mostly in hands and feet, and acne on my scalp (yeah). I also have a stiff lower back in the mornings but not sure if that is something related. However, the worst is my struggle with heavy brain fog / mental fatigue and have not been able to work for more than a year because of it. I initially went to see my GP as the fatigue got a lot more intense after lingering for a decade... Nothing neurological found, and after doing a lot of tests I had my first colonoscopy and they found out I have mild to moderate UC and spirochetosis infection ( I have no idea how i have this infection as it is not common in my part of the world). I had 50 ESR, calprotectin 1200s, raised WBC and four or five blood tests for borrelia burgdorferi came back positive for antibodies indicating early stage borreliosis infection. I have not developed borreliosis since (did a spinal tap to confirm), and all doctors are sure that the antibodies are a cross reaction with something else. I hope this is not some antibody for another autoimmune disease. Has anyone else experienced something similar and can they run an array of tests to potentially match with another autoimmune antibody? Please reply if you have come across something similar.
Dang! Your hair is so beautiful!
arthritis , uveitis , psoriasis all my life. Never diagnosed until age 65 although my twin sister was at 17 , at 20 she had a total colectomy with rectal removal.
I began with the arthritis for 20yrs prior to the IBD. I was told that the accompanying arthritis could not cause permanent damage. Incorrect!!! While in the hospital for sepsis, they took me completely off steroids. In that time period, my elbow became permanently damaged. My 6yr old granddaughter calls it my Barbie arm, because it resembles the doll with a permanently bent arm. The hospital rheumatologist kept insisting that I did Not have arthritis, and I've paid the price for her ignorance. My rheumatologist put me back on Prednisone. Btw, the sepsis was caused by staph aureus infection beginning in the intestines. That caused permanent spinal nerve damage, and required 4 mths in the hospital. I've had a multitude of symptoms for most of my life. EDIT: I just reached the part where you talk about being septic, too.
Hi can you please do a video on health insurance I am moving to states from UK and have an ileostomy from eds and loads of other comorbidites really stressing about getting my supplies we will have insurance through husband's work but have no idea how it all works or how much it all will be 😢
I have several autoimmune illnesses but not like...your illnesses. 😁 Anyways. We have such a similar way of doing things and how we feel, what we can do etc. So its definitely true. We are so alike even if we are not the same to a T.
Thank you for the information. Just to let you know, I am doing a little better at the moment; which is to say I am not emptying my bowels and causing excruciating pain. I will go to the hospital for that. I want my home to be a place where I want to live.
can completely relate
I was told that once you have one autoimmune disease you have them all😵💫. The various names depend on what’s being attacked. I started off with total unexplained hair loss. I have very little hair now. Next was endometriosis, fibroids, and adhesions. After my total hysterectomy at age 29 and the surgical menopause that followed, I was dxd with lupus, a year later MS, Psoriasis, mild Vitiligo in just one area of skin, and then came the biggie UC/Crohn’s. I’ve been in remission since my ileostomy 2 years ago. (Knock on wood). I’m hoping that I can stay calm because stress is my number one culprit of illness.
I did the EXACT same thing. I went septic for mistaking kidney stones as GI symptoms. I honestly couldn’t tell the difference until I had a temperature of 44 C & delusional. Had to have two major surgeries in two weeks & almost died. So paranoid now. 🫣Xx
Hello Maggie. I have had Crohn's Disease for a while but I was just diagnosed 5 years ago. You mentioned that Crohn's disease can effect your bladder. How does that happen and what can be done to fix it. The symptoms that I have are peeing myself often, a very sharp pain that feels like my bladder it checking. Often I have to put pressure on my tummy to urinate, It is not a comfort issue to have and I cannot gets doctors to listen.
Girl that chrons arthritis hits TOTALLY DIFFERENT...and I was anemic way before this chrons stuff. Along with a genetic defect called alpha thalassemia...normal H&H should be at least 12.... a good level for me is 9... and the only way to treat it is with either iron infusions or blood transfusions if it's at 7. My lowest was 5.1...scary stuff. The last blood transfusion I received, the donor blood was infected. So....yeah....that was dope. LORD HELP US....
I have bad enemia thats how they caught my crohns i delt with stomach pain for 6 years and thought it was normal for everyone. But what got me to hospital was pailnes, chest pain, particularly left side shortness of breath, cold in a winter coat in midle of summer and vison changes eye sight coulor loss. Ended up needing countless iron insfusions and 2 blood transfusions in the first month of discovering it
I have Crohn’s disease ! I have RA now . I also do self injections for severe osteoporosis. Well now my CT is showing Fatty Metaplasia in my Colon ! I have a nurse that comes to my home to give me my treatments. Have you heard much about Fatty Metaplasia ? I know it’s got to be watched because it can grow into cancer .
My daughter was diagnosed with crohns recently, it was discovered during her hospitalization due to bone issue in her foot. She is starting remicade on friday, hoping to help with bone inflammation if it is caused by her crohns. Her crohns is very mild, but extra intestinal manifistations are ruining her life, she cannot walk, on a wheel chair. always healthy since birth and this came out of nowhere. She doesn't have any vitamin Deficiencies, only anemia.
I would guess skincare would be really important since dehydration and lower nutrient absorption could be a contributing factor in the health of your skin and hair
Type 1 diabetes! I have lived with it for many years now. Although I am seemingly healthy in the grand scheme of things, other potential complications keep me on my toes. I have heard of many things, and I'm hoping that I am not one to experience it, but I'll find out one day I guess.
Maggie how often do you get flair UPS from your Chromes condition Maggie?
I get u! I'm on Prednisone and it seems like I'm stuck with it. I get off and symptoms come back and get on and they go Away
What is crones disease and how do you manage pain after you get a IBD flair up Maggie?
My grandfather and great aunt both had ulcerative colitis. It’s hard to see people struggling with chronic disease.
very interesting lecture from 2012... on rumble
the expl0ding aut0immune epidemic
by dr tent
RA here... All the above... Lol.. eyes, liver,bowel hair loss and joy! Joints... Oh well... It helps to hear I'm not alone. ❤
Wait....I signed up for this!?! Damn it, I knew I shouldn't sign my name on that person's clipboard! Do you have any white out?
I have crohns and major arthritis! My pain management doctor told me that I’m 35 with a 80+ year olds bones 😢
I’ve had Crohn’s disease for a number of years now and it has been a struggle. None of the drugs have done much, but they keep ignoring me and giving me steroids. Infliximab worked for a few years but now immune to it. I also ended up with psoriasis when on it which I has never had previously. I now have PMP cancer which I am not sure is due to the biologic. They tried other ones but none have worked. Now begging for ostomy surgery, hopefully I will get it, have resisted it previously. Also have anaemia as Crohn’s is so bad.
Spina Bifida...The disability I was born with is a collection of a crap ton of other conditions that can all happen separate from it so having any one of them doesn't reflect actually having it if that makes sense!
Have you tried a keto or carnivore diet to see if it could improve your symptoms?
My eyes are not good i was diagnosed with intercrainial hypertension needed a surgery to place a shunt placed but before the shunt they tried to operate on my eye to drain excess fluid. Because i had crohns they did not want to shunt me but did in the end as i was almost blind within weeks of being diagnosed it progressed quickly. Im now on rememicade now to control my cronhs and its the best medicine i have ever had!!! I still get sick but not nealy as offten as i used to it really is a life saver.
Mine is an obvious one, glaucoma leads to cavities. The glaucoma drops decrease eye pressure by either increasing the ability of fluid to drain, or decreasing the amount of fluid. The problem is that they don't just decrease eye fluid, they decrease ALL fluid, meaning dry mouth (eyes and nose etc.), and after 29 years (being treated for about 15 of them) I ended up with my first cavity. Both that and my SSRI had dry mouth as a side effect, and combined it was too much for my teeth. Luckily, it comes in a weaker concentration that still works without making me uncomfortable.
I have worse hair loss from stress and mental health issues and it’s never bothered me bad enough to want to do something about it because I never liked how thick my hair was, it’s naturally thick curly wavy wirey and frizzy so to not have to deal with as much of that as possible I’ll take some thinning
IBS i have it and it has disrupted my life for 24 years now I feel weak, shortness of breath a lot stomach pains and nausea I try to stay positive about it but some days are very difficult
iritis , arthritis, APS (not usually associated w/ Crohn's) - no ostomy