How I Got Diagnosed - Inflammatory Bowel Disease | Let's Talk IBD

[@cindys2995]

You truly are a COMFORT to those who are facing this journey. Thanks for sharing your life with total strangers, lol.

[@OzarkSoaper]

Just diagnosed with crohns in august. I am 65 and was ill for months and no one helped me until I ended up in the ICU with sepsis and a ruptured colon. I have a colostomy and that is a learning curve, however my identical twin sister was diagnosed at 20 with Crohn's and had an abdominal perineal surgery with total rectum removal. She has an ileostomy and with her knowledge and encouragement I have adjusted . It is know walk in the park as you have said and adjustments must be made but you can live a good life . Thank you for your videos they have been in a strange way a comfort to me.

[@lceec7012]

Hope and pray you adjust quickly. Feel better soon.

[@cyndimontanaro2902]

Thanks for this Maggie. As a wife of a Crohn's patient who has had a permanent ostomy since 1999 and has great quality of life, and also of two young adults now with Crohn's, these are good times to be diagnosed. There are so many better treatments now. I was terrified (like your dad) when my son was diagnosed because of all he had been through, but he has done so well on biologics! So it's more likely than not that, especially if caught early, today's newly diagnosed will have an easier road than you and my husband.

[@helengarrett6378]

An ostomy isn't in everyone's future but it CAN be a blessing. My mom had terrible chrones. She wasn't diagnosed until her late 50s but she had symptoms in her 20s because she had them when she and my father were dating and there were many times she had to be where there was a bathroom. When I was a child, a teen and even older Mom was always going to her doctor or to urgent care because of intractible diarrhea and pain. Finally, she was referred to the head of the G.I. service in the HMO she belonged to. She had Chrones everywhere and it had never been treated. She had put up with misery for decades and decades. After her diagnosis they treated her with oral steroids. She hated the weight gain and moon face. But that HMO didn't deal with her horror of public embarrassment and with her fear of a stoma or any of the emotional rejection of the other treatments including surgery. They just told her her choices and she rejected all of them. Her subsequent death from her rejection of the steroids and any other treatment was slow and bloody and painful and exacerbated by diabetes. If you are diagnosed with IBD my wish for you is to treat the emotional component right along with the strictures, the bloody diarrhea, the pain, the vomiting and all the other possible symptoms. With that emotional help acceptance of a stoma and good care, very many if not most people can go right on along with their everyday life and the stoma can be a relief not an embarassing burden.

[@michiganmom857]

*Crohn’s

[@helengarrett6378]

@@michiganmom857 Sorry for misspelling. Was it more important than the whole comment? I probably will misspell it again as I'm 82 and my memory isn't what it was. I probably will make lots of typos too. But thanks fir the correction.

[@tygerlillee]

​@@helengarrett6378 boggles my mind that all she saw in your touching, informative and helpful post was a misspelled word.

[@cyndimontanaro2902]

I totally second what you said, Helen. This was my husband's experience. Life without a colon is SO MUCH BETTER and the ostomy has never given him much trouble.

[@jacquelenbialozynski6671]

😮

[@marciadichiara5688]

As I’ve told you my sister didn’t get diagnosed till she was in 40s. She had it 24 years and took her life. So sad. She didn’t have great medical care in Colorado but some of it was from ignoring her disease. Thrilled you are doing better and have the attitude of helping yourself despite not always wanting to have surgeries

[@denisesilva3674]

Thank you for saying that everyone has different symptoms and outcomes. I was diagnosed.27 years ago and have had 5 resections and now I’m looking at having ostomy surgery soon. Some days are tougher than others but it’s important to keep a positive outlook. Thanks again for posting your story.

[@Gladioli10]

I was diagnosed with celiac disease at the age of 13, I'm now 24. I'm so glad I was diagnosed as a kid, I think it made me a very resilient person.

[@mariebarnes416]

I felt so sad hearing what you had to go through and at such a young age. You’re an inspiration to others.

[@NorseButterfly]

I've been living with GI symptoms since birth. My mom desperately tried to get dr's to listen to her, but 52 years ago, she was labeled as an "over-anxious mother". I was in my late 40's when I finally got a Dr to listen. He said that I have colitis, partial gastroparesis, and a "j" shaped stomach. But he refused to treat any of these things. My newest GI, I've only seen once. She prescribed a few meds that I can't take due to other conditions and meds, and has treated me for SIBO. The most painful symptom I have is severe abdominal pain and rectal pain. Those make me feel like I'm going to pass out. The most embarrassing symptoms are loss of bowel control and rectal leakage. I hate having to fight so hard to be taken seriously. BTW, I live in Texas, the worst state to receive medical care.

[@cindys2995]

I hope you find relief! Thanks for sharing your story.

[@brenday3889]

I understand the frustration! I finally went to doctors in the UT Southwestern Medical System in Dallas- I got answers and treatment finally.

[@broncotia3125]

I'm so sorry u have been struggling so long. It can be very difficult to get Dr's to hear u and take u seriously. I wish u relief and help 🙏🏼❤

[@kandacepatterson7965]

Agree..Texas sucks. I hae had severe constipation my whole life. I have had rectal surgery and even that doc didnt treat me. I just live on miralax and stool softeners.its painful.

[@jeanetteh.9240]

Try going back to your last GI doctor and explaining that you can't take the meds she prescribed, and does she have any other ideas? The fact that she prescribed more than one medication for you tells me that she wants to help.

[@jeanwhite2705]

I am a senior lady(70) who has dealt with symptoms of IBD, colitis, and now diverticulitis attacks,trying to manage and control symptoms and stay as healthy as I can. I want to thank you Maggie for your forth right manner in dealing with your health challenges, the good, the bad and the ugly(pain and other issues). I lived in shame and fear for so much of my life and my kids lives. I missed so many important moments in their lives because I was in a bathroom or being at home near a bathroom cause that was life for me. I have been using an energy treatment protocol for about 15 + years now that allowed me to gain so much more control of my symptoms, that for the most part I have better control over my GI tract. Life for me has become so much better at this point. Diverticulitis hasn’t invaded too many times yet so I just keep doing my best. Just, Thank you again, for being the face of hope for so many people. I may have tried harder to get more help in my younger years if I’d known there was help available. It seemed so hopeless and embarrassing and got me nowhere with the medical system so I just stayed close to bathrooms, carried underwear and spare clothes everywhere I went and didn’t eat if I had to go for groceries or to kids concerts or games, things like that. Just spread the knowledge. The road may be difficult but there’s a better future even if it means going thru h~ll to get there.

[@lisamurray7168]

Thank you Maggie for sharing this information! Our son was diagnosed with Crohn’s in 2020 at age 15. It was a relief to know there was an actual cause for his symptoms, and we’ve received excellent care. He’s on infliximab (remicade) and azathioprine, though getting his weight up is a challenge. Hearing your story makes me feel like we’re not alone in navigating our way forward. Bless you and your family, and may you continue your brave fight with your lovely sunny smile. We like to see it☺️

[@sunny_dhende6289]

Wow, Maggie, you were so brave to be so young and go through such a tramatic experience and to come out of it with such grace n poise! I admire your strength and resilience, you have shown us that whatever we have to face, we will be okay, and life does go on! I was diagnosed this this year with Crohn's disease celiac disease and ulcerative colitis (although my symptoms have been there for at least 5 years since my stage 4 ovarian cancer. I also have a hiatal hernia that will be corrected when they take out my now stage 4 colon cancer. Your videos have been so informative and reassuring that I think now I'll be able to handle "my lil stanka baggie" lol. I've seen about 6 of your videos n have loads more to watch! Thank you too you, Zac n your fur babies for making really really quality material cuz it's raw, real and refreshing! Best wishes to you on your journey called life. I'm keeping you n your sweet family in my prayers🙏🦋✨️

[@troutnbassinkayakfishin]

I feel bad for children who get Crohn's disease. My earliest symptoms hit at age 25. It was a long series of bloody stools. It was painful. The doctor at the time could not come up with a diagnosis. Years later, I was diagnosed with IBS. Spent 6 years with that bad diagnosis. Treatment did nothing for me. I had 6 ER visits in 6 months, but nothing was changed. At that time, my G.I. did a colonoscopy. No diagnosis. I later got the records of this scope and learned that he was unable to enter the ileum. He did not bother to tell us that at the time. If I had known, I would have pursued finding out about what was blocking the scope. In 2010, I had another ER visit on Father's Day. Severe abdominal pain due to a major blockage. The ER doctor performed a CT and blood tests. He became the first to tell me about Crohn's Disease. He referred me to a new G.I.. A friend at work is married to the hospital's head ER nurse. She also referred me to the same G.I.. He diagnosed my Crohn's. He got me into surgery a few months later. 3.5 ft of small Bowel and .5 feet of colon were removed. That was the best thing I could have done.

[@jerometsowinghuen]

Thank you for sharing your illness, Miss Maggie. You are confident to open up how you got it and solutions to cure yourself.

[@ibdandme]

Hi Maggie, thank you for this video. For me to it took years to be diagnosed, and yes everyday I have to make that choice to ve happy and accepting who I am. I am grateful for the ileostomy, as I gor a 2nd change and another chance to live, so I am trying my hardest to always be grateful and take everything that happens in a stride. Some days are more difficult than others, but just to be free from stomach pain, that is such a huge bonus, for I have been struggling with that my entire life. Once again thank you. Have a blessed day 🌼 🌼 🌼 🌼

[@ChaiLatte13]

My nephew had the severe constipation and vomiting too. Once his blood work showed he had anemia, the doctors were on it right away. Sent him to children's hospital and he was diagnosed within a few days. My nephew had digestive issues even as a baby, blood in his stool etc so I truly believe he was born with Crohns.

[@just_a_platypus]

I've had severe Crohn's symptoms since i was a baby, but wasnt diagnosed until i was around ten because i had ✨shitty doctors✨ who told me to suck it up and deal with the pain, when i was a _child_. I have an extremely high pain tolerance, so if i was at the doctor's for pain, then i was in the most pain possible. I had extreme nausea, bloating, constipation, stomach cramps, etc. for my entire childhood. I missed so much school, and i had such bad cramps at around age 6 i was practically screaming in pain.Thank GOD i finally found amazing doctors just before covid hit, and they are genuinly the best. Im on the right medicine, and am in the best place i have ever been with my crohns. My symptons are lightyears better, almost completely gone, around 5 years after being diagnosed.

[@sierralapierre9717]

As someone with IBS ( only diagnosis so far) which I know is no where as severe as other GI issues I can’t even imagine how scary that must have been at such a young age!! The pain of GI issues is no joke!

[@ProfessorMichaelT]

I don't know how I ended up on this video, but I wanted to tell you that you are a really neat person. Anyone that has you as a friend is obviously blessed. Be well.

[@susanschellenberg6980]

Thank you for this marvelous video! I know that the video will help many of us who have GI issues. You really are a blessing to all of us ❤

[@melissa-Ann]

💙Thank you Maggie💙amazing video and you hit on some really key points in your video💙a lot people get misdiagnosed so many times ranging from eating disorders, using drugs, seeking attention, gastritis, stomach flu, to food poisoning and that's only naming a few. It's frustrating. So frustrating. What I want to say is that if you feel something isn't "right" OR you're still feeling crappy, listen to your intuition (gut feeling - sorry for the pun) and be your own best advocate to get a doctor to listen.

[@modella01]

I started having symptoms when I was around 20. Took me 3 years to finally get a diagnosis. Thank God for Remicade. Saved my life and has totally changed my life back to some sense of normalcy. The future is nerve-wracking still, fear of the unknown.. But so far, I still have things under control and am managing quite well thankfully. So nice watching your videos Maggie and having someone to relate to with the Crohn’s that is around the same age as me! 🙂

[@joancamp3645]

You are great at explaining your disease. Thank you

[@majorwhite51]

God love and keep you safe, little one ❤

[@MonikaWashington-y1i]

Hi Maggie Thank you for sharing your story, Stay blessed!

[@shelbyroselaganelli]

I've had GI symptoms since birth. I was a colic baby and my mom is convinced it was because of terrible gas pains. I was super constipated as a child. I went a week without a bowl movement and ended up going for ultra sounds and got suppositories regularly. In my teen years, I would get absolutely debilitating gas pains. I felt like I was being stabbed. Into my 20's I finally got diagnosed with IBS and was told to go on a low-fodmap diet. I've also dealt with ridiculous bloating my entire life. After a meal my stomach looks like i'm 6 months pregnant. I'm 31 and still dealing with constipation, infrequent bowl movements, bloating, gas pains... it's the never ending story.

[@amandaz5789]

I used to have panic attacks when I saw all that blood in my stool. Eventually I went to the bathroom in the dark bc I couldn’t handle it anymore. I got better eventually but it’s definitely scary as a kid.

[@lenablanc7162]

I don't have a "real" diagnosis. But I have GI problems every day. I'm constantly bloated and not just a little, it's really bad and painful and looks like I'm pregnant. Most of the time I'm nauseas and have painful cramps. Just now after my last bite of dinner the stabbing began and I'm currently sitting here with a heating pad on my stomach to ease it a bit. Sometimes all that helps is to roll into a ball and hope and wait till it passes eventually. Whenever I talk to my doctors they just say "oh it's probably irritable bowel syndrom and I just have to deal with it"...and that's that. But I think it's not normal to constantly be in pain. Thank you for educating us ❤

[@frerejacques4391]

I'm so sorry you are struggling. Constant pain is exhausting and debilitating, and I am so sad to hear that you've been dismissed. If it is IBS, your doctors are wrong to say you "just have to deal with it". Many people with IBS find relief through the FODMAP elimination diet or other means, it can definitely be treated :) I hope you are able to find answers and treatment soon

[@lenablanc7162]

@@frerejacques4391 thank you, that's very kind of you. I appreciate it.

[@brenday3889]

I suggest you go to doctors within a teaching hospital like UT Southwestern in Dallas or Mayo Clinic. In my digestive issues experience, this type of setting has doctors on the cutting edge for treatment.

[@jeanetteh.9240]

Sometimes, it can help if you tell your doctor what you would like to be tested for, or what diagnostic procedure you are hoping for. If your thoughts are dismissed, move on until you find a doctor who doesn't have major ego problems. Another thing that always helped me (no IBD, but other auto-immune diseases) was to say, "I'm not able to work." Somehow, that would get their attention.

[@bunnylacy2097]

Ask for a referral to a GI doctor. Say sure maybe it’s IBS but I want a specialist to find out for sure. I want to know for sure that there’s no options to help me because there might be. And if I might be able to get relief then I need to try. Even if it is IBS the GI doctor (a good one) will give you some options to help. You don’t have to just suffer.

[@KnappKnits]

Your positive outlook on life is inspirational. I wish you happiness for the future. Love and blessings to you and your lovely husband, from here in England.

[@theresahernandez2350]

You are such a strong woman with everything you have gone thru and still live so positively may God bless you and your husband he shows he is a great husband

[@lisachatham8690]

All my life I have had one issue or another with my GI tract. About 6 years ago I had a 3rd colonoscopy and was told I have diverticulosis. I still go back and forth with constipation and diarrhea. Still get the excruciating abdominal pain and awful intestinal spasms. Trouble gaining weight has never been an issue but losing weight is.

[@karenshepler7128]

Hello ,and thank you for sharing this story with us as you are right it's different from everyone. And we all have to learn how to handle it in our own way. Thanks for sharing 👍

[@1ninjamom359]

It took 7 years of being very sick before an emergency surgery, due to severe disease and abscesses, that I was finally diagnosed. After surgery I didn’t really have any maintenance care. Needless to say I had to have another bowel resection years later and was sick all of that time. Thankfully I am now under a GI specialist’s care. I’ve had Crohn’s for 27 yrs.

[@Fadingroses19]

Thank you for such an informative video on chrones. You truly are a beacon of hope. How are you doing today?

[@hannahk1306]

4 years actually sounds quite quick! My brother first had symptoms as a toddler, but wasn't diagnosed until he was an adult! The doctors just said he had food intolerances and put him on a special diet, etc. It wasn't until he had a bad flare up as an adult and was hospitalised that he actually got the crohn's diagnosis and proper treatment for it. Luckily, he's not needed any surgeries and has actually been able to reintroduce foods to his diet since starting proper treatment that he hasn't had since he was a young child.

[@StephanieVillalobos-ir1go]

I have ulcerative colitis. Was diagnosed at 14 and I'm 35. I've been in remission for years...however take medication daily for it to be in remission. My heart goes out to you!!

[@juliaburkley8042]

Thank you for sharing!! Your videos were so helpful for me throughout my whole Crohn’s diagnosis and I so appreciate the community surrounding this!

[@Branda7712]

My older son was 9 when he was diagnosed with Crohn’s, he’s 20 now and doing well. My younger son was 13 when he was diagnosed, he’s 17 now and not doing as well as his brother. It runs in our family, my niece has it too, diagnosed at 19, she’s 23 now and looking at surgical possibilities because no medications seem to work.

[@tinagribble4749]

I was in my 40s before I was diagnosed after years of sickness and constipation my only 2 symptoms. I went for an endoscopy and the camera I swallowed got stuck in a narrow stricture in my bowel and I was sent for a bowel resection and the camera removing. They diagnosed me as having Crohn’s Disease and during the resection they removed a lot of bowel because they said I had 6 narrow strictures that there was no chance the camera would pass through me. I now suffer with bouts of severe constipation and very watery stools, bleeding etc alternating daily. I ‘m now on Biologics weekly injections to help ease symptoms and I’ve now got problems with strictures again but I’ve refused another operation and I’m trying to manage my symptoms with medications.

[@Maalin.]

I went 7-8 years with GI issues but no one knew all tests and samples came back pretty normal until a year ago out of the blue I put everything together and realized it was my medication.. been off it since may and minimal symptoms but could be from not being used to some foods etc or this medication ruined my GI system and it will definitely take a long time to get through the food related trauma...

[@helenhucker346]

Thank you so much for this video Maggie. It is infuriating that your diagnosis took so long, what were these doctors thinking? I also had GI issues for years which began after taking anti biotics at age fifteen. I was always told my problems were IBS but I also had some acute episodes of gastroenteritis. Despite all this my general health was good and it was not until my mid fifties that I became ill and was diagnosed with Ulcerative Colitis. I then had a two month course of steroids and apart from a minor blip a few years later I have been completely well for the last ten years. Although I have a UC diagnosis I consider myself cured. Wishing you well and sending hugs from the UK.

[@Kay-freak]

I've overcomed too. All the g.i.t symptoms I had Inflammatory complications. Vomiting 🤮 scenes Severe abdomen pains Fistula bypasses IvS Pills 💊 X-rays Bynama scan CT scan Mri scan C-scope Oops I so hated getting in those procedures. Oh well I take pride of myself in what I've went through 😊😊

[@am1475gr8]

Great job you made this video. may Allah keep you under his special shade of blessings always Ameen sum Ameen.

[@HannahSausageBurrito2010]

I had crohns symptoms starting when i was 8 too!

[@ashleygrojean1162]

I have UC, ulcerative colitis my daughter has every symptom/ indication of Crohn’s. She has so so much blood in her stool, and is chronically iron deficient anemic. We’ve been through the ringer of tests, Colonoscopy, Endoscopy, pill cam test, special MRI’s, loads of bloodwork. They cannot find the source or cause of her bleeds. She has lost significant weight, is pale, stunted growth (14) smallest freshman I’ve seen, inflammatory markers in blood work are super elevated, juvenile arthritis in her major joints. Yet, without an actual tissue sample they cannot diagnose and start treatment. Interesting you said your main Crohn’s symptom was extreme constipation. That is also my presentation unless I’m in a flare and then I might alternate. At the time of my diagnosis my main symptoms were constipation and severe joint pain. It’s been a rough 2 years advocating for my daughter trying to get a diagnosis. They have not really taken her symptoms seriously, yet she continues to be anemic and lose blood.

[@jhors7777]

Thanks for posting this helpful video!

[@ashleycarroll5337]

i always had several gi stuff finally got diagnosed with celiac took years. but feeling better mostly still have some gi problems.

[@melissakoon2097]

It took until I was 29 to be diagnosed with CVID ITS AN IMMUNE disorder I can get sick easy by being around someone even if they didn't know they was sick so thankful I finally got to go to the university hospital they figured it out right away after I got sent to the right Dr.

[@gemcwright]

Love this video. Thanks for your giving heart!

[@jameskisor392]

Was diagnosed having Crohn's Disease at 40 years old. Later in life, than average. Started getting cramps, loose stools and weight loss.

[@Dexy83]

I started having increased IBD type symptoms over the last year. I have had labs that hasn't shown much other than some vitamin deficiencies. I'm having an colonscopy/endoscopy next week. Is it odd that I've been praying they find something? 🤮💩😭

[@beebopadoo]

omg the little Maggie pictures!!

[@lazydave9761]

Immediately recognizable, you've barely aged! I honestly don't know how I came across your channel, but I'm glad I did, when I did, because it's always been a joy to watch your stuff. Stay happy and healthy, pretty lady!

[@karendavidson6272]

OMG sooooo cute you were as a little girl 💕

[@eleanorlyons9709]

Back when I had a ostomy there was no one I knew but it was in the 70's and 80's 😄

[@stacyvakassian2334]

Thank you.

[@candacelaws2554]

Thanks for sharing your information.

[@oliviawhiteside5464]

I wish that you were living in the Pittsburgh PA area

[@oliviawhiteside5464]

Dr Wendy Craig is the best GI doctor in the Pittsburgh area

[@natashabugeragibson5862]

Any idea on how to keep flair ups of IBS chrons on the low side and keep there nausea on the the low side

[@wandaray773]

You are an angel

[@jacquelenbialozynski6671]

Symptoms please.

[@wishIKnewHowToLove]

u r so wise~

[@lilbatz]

When I worked in the hospital in the 1990s, pediatric Crohns was almost considered a psychiatric disease with emphasis on screwed up parents causing all the kids issues. Brutal. We've come a long way.

[@stuff1784]

How interesting that you had a red tinge to your hair when you were young

[@ke11yke11z]

I have a hiatal hernia. GERD up the whazooo Bruxism up the whazooo my poor molars 😭😭😭😭 Hydrochloric acid in your mouth IS THE WORST. Anxiety mind body connection is real

[@vikinghorsechick]

I remember that moon face too well

[@JudyGyles]

IBD runs in most of my family

[@PrinzessinMurx]

Thank you for your great videos. I did not know what a Stoma oder IBD is. PS: You could be Emma Stones Twin

[@patrickchambers5999]

If you are cold, you need to get yourself some pretty sweatshirts to wear or wear some of your merch. Being so small compared to Zac, does there have been times when you were taken as his grown-up daughter? (My late wife was just under 5' because of genetic problems while her mom was 5'9" and I'm 6'2". The best mistake occurred when the three of us went out to eat. The hostess seated us with two adult menus and a child's menu as my wife went to the bathroom. The waitress asked if we wanted to wait until the little girl came back. She did and as the waitress saw her she quickly exchanged the child's menu for a third adult one. You see my wife had double D's (certainly not a child).

[@bereal6590]

You never forget your first colonoscopy! 😣. Enemas never worked on me! Superhuman retention capacity lol. Take care Maggie ✌

[@chronically_bqueenb]

You know you should left your robe on if you’re cold because who cares what people think

[@Stopthisrightnow560]

Every month when I menstruate, I'll have dumb cycles of constipation and diarrhea all in the space of two weeks. The bloating I get makes me look pregnant. I'll vomit every morning I wake up for a week straight and spend the rest of the day nauseous. If I had that all the time I'd probably want to neck myself.

[@jeanetteh.9240]

I hope you have seen a gynecologist about your symptoms.

[@HannahSausageBurrito2010]

i was 8 and was 51 pounds

[@malinnesse3876]

🌼

[@rosiegonzalez340]

🥰😊✌️

[@ke11yke11z]

Exact opposite prob as you

[@Dubinski2382]

Sounds like you were probably allergic to milk or some other food and you were completely misdiagnosed.

[@LetsTalkIBD]

Nope, it's definitely Crohn's

[@Dubinski2382]

@@LetsTalkIBD Sorry not meaning to attack your story -- which is incredibly brave and inspiring and you are an amazing communicator. Rather I was questioning how you were cared for. Couldn't excessive exposure to an allergen (like dairy) give rise to the autoimmune malfunction that is Crohn's? I'm always suspicious these days when experts blame genetics or bad luck for problems when there is something we could change in our diets or medical treatment for the types of symptoms you experienced when others have going forward thst could maybe prevent such problems from becoming Crohn's. I feel there must be something that causes Crohn's...even if it's something that occurs very early in life that you couldn't control (but maybe parents or doctors could).