My Crohn’s Disease Diagnosis | Story Time


Hey, it’s Marvolo, and welcome back to my
channel. Last month marked my two year anniversary of being diagnosed with Crohn’s Disease, or
as I like to think of it, my Crohnsiversary. So to celebrate my Crohnsiversary, I wanted
to make a video and tell you my diagnosis story. Ever since high school, I’ve had intestinal
and stomach issues. The majority of my mom’s side of the family has IBS and Acid Reflux,
so I sort of always assumed that was what I had. These could have been early signs pointing
towards Crohn’s disease though. As I went into college, issues with vomiting started
to get worse. In the fall of 2013 I started getting sick. It had been coming on slowly
for probably about a year. Back in high school and in college, I weighed 115 pounds. By fall
of 2013, my weight was fluctuating between 101 and 103 pounds, so by that time I had
lost 10-15 pounds almost. During the beginnings of fall, I had some medical issues that were
not at all related to my diagnosis with Crohn’s Disease, but they required me to take several
rounds of antibiotics. In total, I did 4 rounds of antibiotics, and I believe each round lasted
two weeks. I was attending college at the time, and it’s really hard to stay in college
and have health issues, but I was barely managing to get by. But after round 3 of antibiotics,
I found it more difficult to keep attending my classes. I had started having abdominal
pain and diarrhea on a daily basis, and it was getting hard to deal with. I was going
to the bathroom at least 6 times a day, and it just started becoming more and more frequent
as time went on. I’d previously had a prescription for hydrocodone that I hadn’t finished off,
and because one of the side effects of hydrocodone is constipation, I thought I could use that
to stop the diarrhea, and it also helped with the abdominal pains for a while. But pretty
quickly, I ran out. Over the course of the month of November, my condition escalated
quickly. By Thanksgiving, I was having about 16 bowel movements a day, all diarrhea, and
I was vomiting on a regular basis as well, and my weight had dropped down to 97 pounds.
I could tell I was no longer absorbing nutrients from my food at all. I was scared because
I didn’t know what was happening to my body. I didn’t know how to tell when things were
bad enough to see a doctor, or to go to the ER. I had no idea when you needed to say “I’m
sick enough that I need to go to the hospital, or I need to call a doctor.” I had no idea
what to do. I was hoping that I could just wait it out. A lot of this time has been completely
blocked out of my memory, because I just spent days upon days, weeks without leaving the
house. I would just stay in bed, or be in the bathroom all day, trying to sleep, trying
not to be in pain. I would smoke to help alleviate the pain, I got a Volcano, which is a type
of vaporizer, and that helped, but it didn’t fix the problem. I was miserable. I was now
going to the bathroom more than 20 times a day, and vomiting several times a day as well.
I would keep track of how many times I’d used the bathroom during a day. I have a jar of
about 300 bobby pins in my bathroom, and I have a little dish that I would sit next to
it. So every time I went to the bathroom, I would drop a bobby pin from my bobby pin
container into this little dish, and at the end of the day, I would count all the bobby
pins, and that way I would know how many bowel movements I had per day, so I could keep a
log. I wasn’t sharing information with a doctor, I don’t know why I was keeping track of this
with no one to forward the information on to, but whatever, it was probably smart of
me to do that regardless. I remember several nights sitting in the bathroom with my head
between my knees, too exhausted to keep it up, and just not having the energy to even
cry. Just being miserable, and not wanting to exist anymore. I’m not a religious person,
but there were times when I broke down and I prayed. I would have sold my soul to just
about anyone just to make the pain go away. This pain was the worst pain I have ever experienced
in my life, and it felt like there was something inside of me, trying to eat it’s way out.
Or like I was being disemboweled from the inside out. My health continued to decline,
and by the time Christmas came, I was looking like death. I weighed 95 pounds by that point,
and I hardly had the energy or the strength to sit up for long periods of time. Every
time I fell asleep, I expected not to wake up. I felt like death was coming any day,
I mean I’ve never felt this terrible in my entire life. Well… I’ve felt this bad since
then, but up until that point in my life, that was the worst I had ever felt. I had
started losing blood in my bowel movements, which was another terrifying thing. And despite
all of that, I still hadn’t been to a doctor yet. Tasks as easy as folding laundry felt
like running a marathon. It would leave me out of breath for a few minutes, and I’d have
to sit down, steady myself, and focus, because I would be getting dizzy. Finally, my family
and friends were so concerned that I decided to go in to urgent care to be seen by a doctor. When I was there, they just wanted a stool
sample, which they tested for Clostridium Disi..Di.. Clostridium Difficile, which is
a bacterial infection that causes those symptoms. They told me if it came back negative, they
would refer me to a Gastroenterologist. After seeing a doctor at urgent care, I finally
got in touch with my primary care doctor, who I hadn’t yet met. When I went to see my
primary care doctor, a nurse checked my blood pressure, and it was somewhere around 73/38.
Maybe something lower than that, I don’t know. And the nurse, it was so low that the nurse
rechecked it with the child’s blood pressure cuff, and then got another nurse to come in
and check it, and then they checked it again with…I don’t know. They checked it several
times and it came back pretty much the same every single time, which they didn’t think
was possible and they just looked confused instead of being concerned about it. They
didn’t say anything, they just looked really confused. I later googled what that low of
a blood pressure meant, and what Yahoo answers told me was that it meant I was going to be
meeting Jesus soon. So I felt like every day, my blood pressure, my body, was getting closer
and closer to that of a corpse. My doctor finally came in and asked what had been going
on, and I told him that I had lost about 20 pounds from having diarrhea, and he said “Oh,
I wanna get me some of that diarrhea and lose 20 pounds.” Excuse me? How unprofessional
can you be? I can’t believe he said that. I still can’t believe he said that. I also
told him that I had really irritating hemorrhoids, and he said “I don’t want to hear about your
hemorrhoids.” And then he dismissed the subject. Uhmmm…what? You’re my doctor.. Who the fuck
else am I supposed to talk to about my hemorrhoids, if not my doctor? Anyways, he also ordered
a stool sample, which I thought was stupid, because someone else was checking it, and
he wanted to check for the same thing, C. Diff. After the appointment, I left, and I
decided that I immediately wanted to get a new primary care doctor, because he was a
complete fucking asshole, who says that kind of thing? Especially a doctor. It took less than a week for the results to
come back, and I didn’t have C. diff. I was then referred to a Gastroenterologist, but
I wouldn’t be able to see them until late January. So for another month, I suffered.
I had bowel movements more than 20 times a day, I was having blood in my stool, I would
be vomiting while I was already on the toilet, so I had to have a vomit bucket with me in
the bathroom at all times. Which made it really hard to go out in public. I stopped caring
about my life, whether I lived or died. Just as long as the pain went away. I didn’t care
about existing anymore. I just wanted it to stop. When I finally went to the Gastroenterologist,
they decided to schedule me for a colonoscopy. I had to wait another month, until the end
of February for the colonoscopy. Another month of the same symptoms. Another month of waiting,
with no treatment, and my body deteriorating before my eyes. During this time, my mom referred
me to a medical hotline where I could talk to nurses and doctors live, and they seemed
much more concerned than the doctors I had met face to face. I highly suggest those sorts
of hotlines if you feel like you need to talk to someone. They were really surprised by
how little care was being put into my situation. Finally I got to the night before my colonoscopy,
which is when you have to fast and do colon prep. I did my colon prep, or at least I did
my best to do it. Colon prep always makes me vomit every single time, and it’s hard
to get down even half of it, but still I was having waterfalls out my ass all night just
like you do with colon prep. It’s literally just like water out the butt. Gross, I know,
but it’s essential. I’m already malnourished, I’m already underweight,
I’m already having too many bowel movements, and then the next morning they call me and
cancel, telling me they want to reschedule the colonoscopy. After?! They did this after
I had already done the prep! Are you fucking kidding me? If you’re going to cancel, at
least do it before I drink all this damn bowel prep. I was furious. My family was furious,
and we all decided that I needed a new doctor, because that was unacceptable. With the help of the doctors on the hotline
I previously mentioned, I was able to get in to see another Gastroenterologist. They
ordered a blood test just to make sure I didn’t have Celiac’s, because that could have explained
things, and then also scheduled a colonoscopy. But that wouldn’t happen until March. So I had to wait 5 months total just to have
a colonoscopy. Five months of terrible illness, and I had no idea why. When the time for my colonoscopy finally came,
I was down to 90 pounds. I looked skeletal, and I had a hard time breathing when I was
just walking around. I had a really hard time waking up after the colonoscopy. I was already
exhausted to begin with. I hadn’t been able to get a good night’s sleep in months because
I’d been up using the bathroom, and the night before, I’d had to do the colon prep, so I
definitely hadn’t got any sleep. The nurses insisted that I wake up though, and try to
pee. But when they tried to force me to get up, I just started vomiting. They decided
to let me sleep, and they started giving me fluids in the IV. I don’t know what all was
given to me, but I do know that my face swoll up really big, and I was only able to see
out of one eye for a couple of days. So after doing an upper endoscopy and colonoscopy,
they were able to tell me that I had severe Crohn’s Disease. But it turns out the inflammation
was so severe that my doctor was not able to do very much of the colonoscopy at all,
for risk of perforating my intestines. He later showed me some images of the parts of
my large intestine he was able to get through, and they were covered in ulcers. When you
get a colonoscopy, they will use air to inflate your large intestine so that they can get
the scope in there better and see everything. But when my doctor blew air into my large
intestine, with all of the ulcers in there, it just started bleeding and bleeding. There
was a lot of blood. Honestly the pictures were kind of cool to look at. It was cool
to get a glimpse inside of myself at a part of me I never have seen before. But it was
like a horror scene was going on in my intestines. After seeing the results from my blood tests
and seeing how anemic and malnourished I was, and after getting the biopsies and viewing
the parts of my colon that he could, my doctor decided the best course of action would be
to put me on an antibiotic, on steroids, and a few other prescriptions specific to Crohn’s
or autoimmune diseases in general. My health has been a roller coaster ever since,
but this was just the story of my diagnosis. Knowing that I have an incurable disease doesn’t
feel good, but it does feel good to be able to have a name for it. And to know what’s
going on in my body. Also knowing there was a treatment in place, and that things could
get better, gave me a bit of hope. I was dumb, and I didn’t see a doctor when I should have,
so don’t wait that long. If you’re worried about something, ask a friend or a family
member if it sounds normal, and if not, call your primary care doctor, or go in to urgent
care, because…because if I had caught this earlier on, I probably wouldn’t have the health
complications that I do now. It just helps to know what’s going on inside your body,
and having a diagnosis helps you to get a doctor, seek treatment, and to ultimately
have a better quality of life. Regardless of that, it is an ongoing battle for me. I will be making more chronic illness related
videos in the future, so let me know down in the comments what you’d like to hear about,
or if you have any questions that I could answer for you. If you like this video, please
give it a thumbs up, and don’t forget to subscribe if you’re not already, so you can stay updated
for the next time I make a video. Thank you so much for watching, and for all of your
support. Whether you’re just viewing my channel for the first time, or you’ve been around
for a while, I love and appreciate you, and I’ll see you next time.

100 thoughts on “My Crohn’s Disease Diagnosis | Story Time

  • I'm so sorry you have this. I know exactly what u went three my son has been three the exact same thing. He was hospitalized last year and was diagnosed with chorns .Even to the point of incompetent doctors.He is now 16 and one year with this illness . I'm so sorry 4 what you went threw. I'm scared 4 my son and don't what to do for him. I hope you could call me and talk to me a little more. I know it's not right but I'm desperate and getting no good answer a. If you don't I understand. I wish you well and the best health for ur future. God bless .Thank you. 646 750 3209 .Betty .

  • The time you had to wait for clinical appointments and the whole general lack of urgency surprises me. I'm kind of making a huge assumption here but I assume you live in America/Canada and have to pay directly for medical treatment via an insurance policy. I thought the benefit of that kind of system was that you get to see a doctor pretty quickly and pick your own appointment time etc. I have Crohn's and was diagnosed 20 years ago when i was 9, although I had suffered a long diagnosis like you (so was probably suffering with it for a year prior to diagnosis) it is more common with our health service for that to occur. Here in the UK we have a completely different system of healthcare known as the National Heath System (NHS) that is free at the point of contact and is paid for through tax deductions rather than being given a bill. The downfall with the NHS is sometimes long waiting lists, you can't pick your appointment times, but rather receive an appointment through the post (sometimes months away) based on the urgency, but even then it is not uncommon for urgent surgery to be postponed. So I am surprised that within a private healthcare system you still have to suffer long waiting times for appointments or tests etc.

  • did you have bloating and gas in your stomach every time you ate something like as if you were several months pregnant/

  • thank you so much for telling your crohn's diesease story, it was inspiring and im glad your doing better today. About a year ago i was diagnosed with crohn's disease and it sucked it took them 2 years, 4 medicines, and 3 tests to diagnose me. I was diagnosed when i was 12. tomorrow i am turning 14 tomorrrow. if you want the full story contact me on instagram @_ryugaa .

  • I have a friend that claims he cured his Crohn's by using Oregano oil. Unfortuntately I've had 2 surgeries so it's too late for me to try that but might be worth looking into. Crohn's sucks.. have had it since 1995 🙁

  • I was diagnosed in 2001, the first 3 years were bad, medicine seemed to get straightened out where it was under control, it seems to be in remission now, have colonoscopy today, have some issues that have resurfaced, good luck young lady, I hope it gets better, God bless

  • i found opiates made it worse for the most part. i spent 2 years on 30mg oxycodone which blocked me up and helped the pain but it caused alot of strain and bleeding. i have found that thc(marijuana) helps me get the job done i smoke goto the bathroom and feel like i empty myself completely. then i smoke and that left over feeling of not being done even though you are done, goes away. also now that i was stuck on opiates for 2 years now im stuck on suboxone which is worse to get off. be careful with the opiates they feel like they help but the long term damage to the walling of your intestine is alot worse. (also as alot of you know oily food and spicy food, although delicious, is the worst for us)
    your story sounds like what ive gone thru
    stay strong girl!

  • I was diagnosed with Crohn's 2 days ago. I've never felt so weak and tired before, especially after that prep.

  • Just went for a colonoscopy today and they said it was all fine and got to have a MRI for the small intestine. They are running out of options now its getting me kind of worried that im going to have to live with this pain

  • I have had chrons since I was 21 and it sucks what makes it worse is I have what they call structuring chrons which means I can easily develop blockages I have had one surgery the sad thing is I was dealing with this for almost a year before I went to the doctor I went from weighing 290 pound down to 175 in 8 months so I know everything you guys go threw also I had cdiff while in a chrons flair and that was like hell on Earth but know im in remicade it helps but im not in complete remisin anyway im glad your better stay strong

  • Just want to add here that anyone suggesting ways to "get rid of" or "cure" this disease will have their comments deleted. So don't bother wasting your time.

  • Isaiah 33:24 :"An no resident will say I am sick ". This is a bible promise that will take place when gods kingdom starts ruling the earth. For more information go to JW.org

  • I've had Crohn's since I was 15. I'm now 33. I've been so miserable and tired all the time. no one understands the pain, fatigue, unrelenting visits to the bathroom, embarrassment. luckily I didn't have to wait for a diagnosis because I had a fissure in my rectum (which still hasn't healed) then a few months later I got a fissure and abscess and nearly died from sepsis.

  • I have chrons, I was diagnosed at the age of 6, and have never had a really bad severe state. I didnt know I was this lucky until watching your video… I feel sorry for you ;( (I'm 13 now)

  • Hello.

    I suffered from crohns aswell.
    I know how it feels thus i feel with you!

    Get those metal things away from your lips.
    It will make you ten times more beautiful than you are with them.

    For that you score a minus 10 on beauty and a deeply related conscern for your crohns because it's shit!

  • I've had it for 8 years and this really is a cruel disease, even when my crohns is in remission I still experience severe muscle pain and also have extreme fatigue, I've been able to work part time over rhe last year but its such a struggle.

  • Plz guys eat mangosteen fruit it's great for corn disease I will not say stop your medication but it's fruit it will help you

  • Thank you for sharing your story, as I have been having the same issues. I just gave blood and stool samples for evaluation 🙁

  • It's terrible i was always getting put down as a bad case of reflex until the test showed I had Crohn's disease

  • I've been diagnosed with crohn's for a little over a year, it's shitty! And antibiotics still mess with my system.

  • Thank you, for your video it was extremely insightful. I am going to forward it to my daughter who experienced a similar situation having blood in her poop for months.

  • Hi: I was curious about the medical hotline your mother referred you to. Was it an online or phone service of some kind? If so, would you mind listing or recommending the hotline? Wishing you a long remission.

  • I have major stomach issues, and was diagnosed with Abdominal migraine syndrome and cyclic vomiting syndrome when I was like 8, But my symptoms have gotten much worse and my GI doctor and I have gone over a lot of diagnoses. and I think that I'm definitely gonna ask her about Crohn's disease.

  • Your college experience sounds a lot like mine! So horrible. I'm glad that you finally got some help. I'd be curious about a few things …I found that I had to deal with a lot of anger regarding my Crohn's experience/diagnisos/ulcers etc- DId you? And wondered if your doctor told you anything about the foods that could be better or worse? Thanks!

  • Hi Marvolo: This may sound like an odd question, so bear with me: have you noticed any change in your health with tattoos vs. before you had tattoos? The reason I ask is because there have been a number of studies suggesting that tattoos boost your immune system. Wacky, eh?

  • You poor thing!!! What useless doctor's!!!! I would have FLIPPED. The beginning sounded like me though, inherited IBS and acid reflux from my mom's side… Your description of the pain and the vomiting on the toilet scene sounded so familiar. Luckily I don't feel like that all the time just when I have an IBS attack. I actually refused to do a colonoscopy because of the fear of the prep so I would KILL if they cancelled on me! I have had 3 endoscopies to remove a polyp but I'm just really really not comfortable with the whole colonoscopy thing.

  • Wow I'm sorry to hear that you had to go through this for so long before you got some actual help. I was wondering if the painkillers (hydrocodone) helped you. I've been having similar symptoms and I can't find anything to help. I had my gallbladder removed in dec of 2013 and ever since then I've never been the same with my stomach

  • I have severe Crohn's disease and Peri-Anal disease. It is so bad and I need help. I am probably going to get a colostomy bag which I know will help, but it feels like it will be so long from now. Every time I poop I am screaming in pain to the point where I pass out from pain on the toilet. Once I poop I am in pain all day after that. I have tried every cream in the book, every diet, baths etc. all I want to do is to be able to go to school and not be worried abt pooping, and I want to be able to go out with my friends and not have to go home early bc I need to poop and I can't poop in public bc of the pain. I am waiting to get the colostomy bag bc at this point I think it is my only chance of not being in excruciating pain everyday. But if anyone has any ideas of something that can help me until then that I have not tried plz let me know bc I really don't know what to do anymore. I am only 14

  • i've lost about 15ish pounds from constant diarrhea and lack of appetite in the past 2-3 months. even when i tell people how i lost so much weight, they either assume i'm lying (and accuse me of using laxatives), or they say "i wish i could lose weight like that!" .. like, what?

  • Thanks for your story… Keep up the fight!! Unfortunately, doctors have no idea what to do with Crohn's patients…Antibiotics,steroids, and immune suppressing drugs… I have never gotten into remission using any doctors medicine or treatment…..

  • Quick question
    While you were waiting for the colonoscopy did they at least do an x-ray or a Ct scan to look inside of you ?

  • My biggest struggle with crohns disease is watching the weight come back. Before I really got sick, I weight about 140 and when I was finally diagnosed I was at 75 pounds. Now that I go to the hospital and get remacade (the medicine I take it goes in through iv) I go every 5 weeks and I get so much anxiety about being weighed for the meds. Now I'm at 158. Still technically a healthy weight for my health but almost over weight. I literally can not stay a healthy weight now. I don't know if it's from my medicine or what but I need help! If any one has advice for a 14 year old girl please help.

  • I'm really glad you posted this – I'm going through some of the same things and being tested for Chrons and other autoimmune diseases because I've already been diagnosed with a few of them, and I'm working full time just trying to manage the pain and keep going so I can pay the bills. I'm in my early 30s and I've been having bad health problems since the end of college and all through grad school. Right now my body is super swollen on the entire right side. I've had the SAME experience with so many doctors! Most of them are rude egotistical narcissists that just want to blow you off so they don't have to do any work. At least that's my experience after probably hundreds of appointments over the last 2.5 years. I've been around and around the appointment cycle too. I finally found a good doctor a few weeks ago, but I still have to wait for a million tests to come back before they'll treat anything. I can't remember the last time I got decent sleep. Take care and thanks for open enough to put this out there for other people.

  • Oh yeah. Our diagnosis stories are VERY similar.. which I don't find much when hearing other people's health history. This month will be 9 years since diagnosed but but symptoms were a couple years before that.

  • I know this is a really old video; but have you ever tried Remicade? I was diagnosed at 14, and i've been in remission for right around 6. I'm 21 now. I really have to give all the credit to Remicade, I tried a ridiculous cocktail of corticosteroids, antibiotics, etc. before it and they either did nothing or made things worse.

  • just had my first colonoscopy today and did the prep yesterday and i can't imagine doing all that for nothing. that prep tastes so freaking bad and i would've been seriously pissed off if they had canceled on me the next day. you're a very strong girl and i'm praying for you💕

  • I am going to get a colonoscopy soon and have had stomach issues my whole life and think I either have Crohns or Ulcerative Colitis. I take imodium all day right now because if I don't, I end up with severe diarrhea. At this point I'm just tired and want to know what's wrong with me.

  • I love your story! ! Same Dr experience, 4 Dr's did not believe me !! No ads holes I'm lying and I want to have diarrhea 14 to 30 times a day !! Then when I told him certain foods bother me they said I was completely out of my mind it took a couple years to finally get someone to believe me and find the right doctor .

  • +Marvolo I've had Crohn's since I was 12 and when you said you had trouble knowing when to go to the hospital or to call a doctor, it struck a chord with me. I've been the worst for suffering in silence. Now that I'm older, I'm a bit more careful of 'masking' the pain with painkillers, and I use my weight and pain levels as a barometer for when I need to go in for a scope or checkup. If I drop ten pounds too fast, or the pain becomes unbearable without pain meds (or if there's blood or vomiting) – I go in. Realistically, we need to go in for regular checkups and let the professionals monitor the disease with scopes and blood tests, so I'm more careful now. I also find CBD is helping with the pain better than opiates did, because no constipation, and it seems to work better long-term. (P.S. Also good on you for finding a new doctor!)

  • i do not have Chrones but my girlfriend may. she has random pains,fevers, bowl movements , so how would we go to get checked? no local dr has mentioned chrones or offered a test. yet she had this for years, and I want to help her now . to get answers. she also has the weight loss as well

  • i do not have Chrones but my girlfriend may. she has random pains,fevers, bowl movements , so how would we go to get checked? no local dr has mentioned chrones or offered a test. yet she had this for years, and I want to help her now . to get answers. she also has the weight loss as well

  • I am so sorry!
    My mother has Crohn's disease since like 25 years… she even had me while having Crohn's!
    She my super hero. What helps her is not eating a lot of raw veggies and fruit cause it's hard on her stomach… but I guess everybody is different.
    Stay strong! I wish you the best in the world!

  • You sound just like me………. Or vise versa. Holy fuck. I've been to doctors, had a endoscopy. I'm losing weight. I can't eat or sleep.. work is miserable for me. My whole body aches. I never sleep at night because I wake up from sweat and abdominal pain.. remaining on the toilet for a hour or so and just stay awake.. nothing is helping me …

  • Just a life hack for you crohners: use a spot of body lotion (NOT body wash)on your toilet paper.Three or four passes should do it. Body lotion greatly improves the surfactant ability of the tp,and acts like a magnet for fecal residue. Good luck.

  • I didn’t have such a bad doctor. In fact I had a temporary Gastroenterologist until a intern was shadowing when he came to see me and that intern later became my doctor and I love her so much. I was diagnosed at the age of 11 and was only in 5th grade. I can relate to a lot here especially because of how young I was.

  • Man im in your exact same position. I have a gi appt tomorrow and i feel like im dying. Im still losing weight i lost 22lbs in 2 weeks the diarrhea is nonstop. The agony it brings is TERRIBLE

  • Thank you for sharing your story. I'm glad that you are surviving it and got a diagnosis. I was misdiagnosed for 5 months before getting an emergency colon resection. One gastro doctor even told me that there was nothing wrong with me and that it was all in my head. I almost gave up too.

  • Thanks for sharing your story. Are you feeling better today? The Dr. was an ass.
    Praying all is well with you now. It's amazing you made it through. Inspiring

  • I’ve been recently diagnosed. This is exactly what I’m going through. It’s horrible. The constant pain, fatigue and diarrhoea is horrible. God forgive me but sometimes I think having bowel cancer would be preferable – at least that way they would either cure it or it would kill me.

  • God I'm so glad that you are alive. That sounds really difficult. I've been having some gastro issues myself and after doing a dna test that helps me narrow down if I have any genes that could be related to health conditions I figured I should educate myself on Chron's just in case this is what's going on, so I can have better understanding of the processes involved in testing and diagnosis and so on. Thank you for being so vulnerable about this stuff on the internet. It's also really reassuring to have others affirm that being in school with health issues is really difficult. (I dropped out of university for PTSD and some other mental stuff, and I am working at reassuring myself about it as I go through different treatments and get farther away from the shittier headspaces I used to be in 24/7. I couldn't have survived and kept in school then so it's good I left.) Thank you for the sense of community you give and all that you are.

  • Patient should not wait so much time to be diagnosed. Even in Kazakhstan where I live diagnostic colonoscopy makes much quickly

  • Wow, I am glad to know you are still alive. It amazes me how similar our stories are, especially with the losing weight so badly (I lost 50 pounds in 3 months at the end of 2016 & almost died) that it almost caused death, and how so many other people here have so many similar issues. Thank you for being another person out there NOT afraid to talk about this. So many people just don't understand and they say not to talk about it because it's too personal of a topic. Bologna! My full story is here: https://www.gofundme.com/crohnsbattle-amanda

  • Am I the only one with Crohns who feels best while eating high fibre foods? I always notice when i eat low residue food I always feel sick. I just want to know if I'm the only one.

  • Marvolo, you are brave and strong and am sorry you are going through so much.
    My son of 24 has Crohn's disease and he is getting his treatment.
    I am at my wits end not knowing what to do? As parents, we suppose to be able to protect our children😭😭😭😭.

    I have forwarded this video to him, I wish you all the best and lots of love, kiddo tc and keep sharing. 🌹🌹🌹🌹🌹🌹

  • Hey nice video.

    I just had a biopsy through the GI to the stomach and had D2. They are currently testing for ceoliac disease. All the pains have increased, loss of weight sometimes the loss of appetite is visible in some occasions and I have over 10 bowel movement. They said it was just IBS, but now I am wondering if it is crohns!?

    I had laxatives the quickest relief ones but that did work but did not seem I flushed out as I still have pains in the bowels and not sure what I need to do now. At the moment waiting for the results are damaging, but hey …can you or anyone shine a light with this!?

    I am on buscopan, memberevine and paracetomol at the moment.

  • Thanks for sharing your story hope your feeling better. Were you having any hair loss or excessive sweating symptoms?

  • I usually fast periods of discomfort, now I am doing a one to two meal plan. Aloe vera helps and I am doing colloidal silver.

  • I have Crohn's disease and I have felt pain everyday for the past 2 years and I been threw 3 medicins I have constant bowl movements and I can't even make it threw school anymore I honestly don't own what to do😟I fell your pain girly all we can do is be strong and hope for a cure💪😁

  • Hi I have been diagnosed 10 year's ago I deal with the symptoms the best way I can. I'm really emphatic toward people who are young with the Disease

  • I have Celiac disease, before I was diagnosed with that my doctors initially thought I had Crohn's disease, since the symptoms I had were similar to that of Crohn's. Instead of Crohn's I was diagnosed with Celiac disease. Your symptoms were by far worse than mine, and I thought my symptoms were horrific.

  • Thanks for shareing the video this me i been in pain cant eat ,scared to eat while driving far or out of town the pain sucks

  • I was diagnosed last year when I was 12😞i lost litterly 30 pounds in a single summer that's when they got suspicious and they did a colonoscopy came back positive started getting me medicine I got another colonoscopy a couple months later to see how it was doing I was getting worse and now I'm here they finally have me at a good state and I hope I live a full life

  • My cousin has crohns and shared this video. So I’m researching it so I can understand what she’s going through. I’m so sorry you’re going through this omg the health system is fucked up.

  • Dear Marvolo, I know you might not see my comment, because this site is a few years old, but I just have to say that I have been following your differant channels, and after reading this one, I have to tell you that I always could tell that you are a very intelligent girl, and now I know why. Yes, go back and get your degree in biochemistry, you can do it. You are so well-spoken you have a natural use of the English language that is very interesting. You could write a book about your experiences. And you can be a wonderful compassionate doctor, or biochemist and figure out this problem for yourself and for the world. Thank you for being vulnerable and sharing, I think God that you didn't die, and I pray for your healing and feeling better with a life with no pain. God bless you young lady for trying to help others while you're helping yourself, such compassion❤

  • I have had crohns since 2010 and have had 14 operations now.
    3 in which were the removal of my decending colon, a built in new bowel, and then the re connection of it all.
    Now I am just dealing with fistula tract absiis and seton insertion over and over again

  • Thank you for this story. I’m trying to see if I have it or not and you’re the only person I could find with a diagnosis story. My brother has it and he had to have his intestines removed but he refuses to talk about his experience

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