GETTING DIAGNOSED WITH ULCERATIVE COLITIS | MY UC journey
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- Опубліковано 21 сер 2024
- When I was in the process of getting diagnosed with ulcerative colitis, I felt all alone and like nobody could sympathize with what I was going through. My hope is that by making this video I can spread some awareness and provide support anyone going through something similar.
I have UC and was also told (without any physical examination) that the blood was hemaroids. I was also told that my diahorhea was "normal bowel variation". Even told to see a psychiatrist because my symptoms were "psychosomatic". The only reason I got diagnosed was because I have an auto-immune liver disease (PSC) and they did a routine colonoscopy because UC and PSC are often comorbid.
I was also unnecessarily tested for pregnancy every single time I went to the hospital, even AFTER I had a hysterectomy.
Thank you for sharing this very personal video. Your story has so much in common with mine. The "Oh, it's probably just hemorrhoids." I had to show a doctor pictures of my bowel movements to be taken seriously. It's not normal to pass blood and clots and bile every 20 min (on a good day) and be bent over in pain. Hemorrhoids don't be that way...
Thank you for sharing your story. I just found out I have UC. The first doctor I went to prescribed me merilax and sent me on my way. After sharing had blood and mucus leaking out. I was flabbergasted! I immediately made an appt with a different doctor and luckily he took it so serious! He ran my blood right there for anemia and scheduled me a CT and colonoscopy. I’m sorry it took you a longer time to find someone to take you serious. I feel like as women we are always written off
Oh my god, I can not believe it took you that long to get a diagnosis. I just got diagnosed with UC, so here I am looking on youtube to see what other people have dealt with & how their managing, so thank you for sharing your story. I say i can't believe it, but i also had alot of GP's dismiss my symptons too, even my current specialist.
So right about getting more advice and not been flopped off with a stomach bug and pushing for the colonoscopy the whole video makes sense hope you changed your doctor
I was diverted for a long time until i was hospitalized and they gave me a colonoscopy to let me know i had UC.
Its been a long journey, as with everyone with the predisposition of IBD.
I find its about your strategy, and what youre tolerant of, while also benefiting the micro biome with specific foods/drinks.
Finding your intolerances, avoiding them, and being as clean an eater as you can be.
Wish i had all the answers. 14 years from diagnosis, and still learning, and adapting.
I have UC myself, and it frustrates me to see how many of us with IBD’s have had our symptoms dismissed so much by healthcare professionals. This is exactly why we need so much more awareness- when I first went to the doctors they just told me I had low iron and gave me iron meds and they thought that would stop the symptoms, I felt so defeated because it took so long to get people to listen to me especially because I was only 13 when I started having symptoms. Thankyou so much for speaking up!!
Thank you for doing this video and sharing your journey😊 I got diagnosed with ulcerative colitis on Friday but I'm still very much in the dark about the disease apart from what I've read up about! I'm currently waiting on my doctor to contact me to tell me where I go from here and what to do next! I've got so many questions but know one to answer them at the moment! Videos like yours are so helpful and make me feel like I'm not alone!
Your story is so helpful! Thank you for sharing this.
Thank you for posting this 3 years ago. I’m waiting on appt after many years of symptoms. This was helpful
Diagnosed last year with left sided ulcerative colitis. I hope everyone is well.
Ugh this video made me tear up girl!! It reminds me so much of my whole journey to get diagnosed. Thanks for sharing, and I hope you’re doing well!
I’m glad you liked it! And I’m so sorry you had to go through something similar, I wouldn’t wish that upon anyone.
@@sarah_louise_coleis there anything you take that helps out I don't have blood that I know of but get really bad pain on right side and cramps puke and poop green probiotics seem to help but when it flares up it's bad I have graves disease too so I have 2 auto immune disease so any help would be great
Lady, you are an inspiration, bless you!
Wow, I am a retired RN, I've had problems for 10 years at least, I also have other auto immune diseases. I live in Spokane and I too have trouble getting my Doc to listen to me. I have had diarrhea for a month now and passing bloody mucous for 2 weeks, horrible cramps and awful smelly flatulence. I've seen two docs now, one at Holy Family and my GP. There is also a family history of colin CA in my family. Your story sound just like what I am going through. My clothes are baggy and eating is losing it's appeal, I have to force myself to drink water even. I've gotten the whole old people always worry about their poops to it is a virus and it will pass. Thank you for your encouraging words of wisdom, this week I think I will camp out at my docs office till I get what I want. Do you still live in Spokane ? Who was your doctor and do you recommend him/her ?
20 year old male. Just been diagnosed this morning. Can't sleep and I'm worried so I searched for this video
How are you now
My son was diagnosed 2 years ago at age 14. We have been seeing gastro for meds, but currently going through testing with a Functional Medicine doctor. So far, he has SIBO, Candida overgrowth, and is deficient in all B vitamins and most amino acids. He also has an MTHFR homozygous mutation. I’m hoping some of this leads to a root cause and possible cure or at least long term remission without drugs. I really believe it was all set into motion by frequent antibiotic use throughout his childhood.
Still astounds me how long it took for someone to listen to you :( You are so strong and beautiful! Love you so much
Thanks lady, I love you too!!!
Thank you for sharing your story.
That's awful, 7 years of dealing with that is awful, glad you got your Answers, and god bless for being able to reach out to others.
Thank you so much! I'm so happy I was able to get answers as well, I know some people never do.
i just subscribed and i would love to hear more about this and maybe some foods that you enjoy or make. i am very new to this and so nervous.. i hope you are well.
Hi Tanya! I would love to put a video together about my diet changes, it can be really daunting to figure out what to eat when you have digestive issues. I’ll work on putting a new video together soon!
My husband got diagnosed with UC 5 months after taking some heavy anti-biotics to treat amoeba. I really believe IBD can be triggered when your gut microbiome is messed up.
I 100% agree with you- our microbiome has such an effect on every other body system. I've been working with my nurse practitioner to get my gut microbiome back into better shape!
i had been to the doctor and er multiple times over the years for flares and they would tell me i was just anxious. a doctor even tried to give me anti psychotics for stomach problems. im having many of the issues you described. im 20 and im still having all these problems intermittently. it’s causing me to miss a lot of work. and i feel like people don’t understand. i got a primary doctor and she gave me some medicine - dicyclomine - it kinda helps but not 100%. i have my first appointment with the gastroenterologist tomorrow and im scared but hopefully i will get some answers.
Im struggling to get my son a diagnosis, hes 5 amd I'm from the UK.
Hes had Diarrhoea for nearly 5 months now, not bloody but mucusy. His feacal sample showed significant inflammation of his bowels and his bloods have come back that hes anemic.
What i wanted to know is how long did it take for your GI symptoms to start showing up blood? Thats the only thing that hes missing symptom wise.
I bled badly, got told it was Haemorrhoids, had a Haemorrhoidectomy and it's not as bad as it was, but STILL I have bleeding and it's dark
😮 Did you get a diagnosis? Hope you're doing better😢
I from UK I've got uc I traced my foods back 20 years I found my food problem it was veg fats such as rapeseed (canola) palm oil most of all veg oils I went back to animal fats butter lard beef dripping and Im getting back to normal now all Modern foods has veg fats that cause inflammation of the bowel and colon
I have blood sometimes even when taking mesalamine. When I eat only rice with butter for few days - no blood and feel much better
I mean I have heard your story before, but every time I hear it I am SO MAD that people didn’t listen to you or take you seriously.
Also, I didn’t know that you collected your own samples 😂😂.
😂😂😂 I was too horrified to let anyone see it lol Alex was helper and I put it in two bags and told him he wasn’t allowed to look at it when he walked it down to lab
Thank you for sharing your journey, I know it's not easy. Every sentence of my story would be too embarrassing for UA-cam, I have a channel, 0 uploads & could never find the courage. Can I ask you if you'd believe a UC diagnosis confirmed by 2 colonoscopy's so far if you never had any pain or cramping? I have experienced everything else you've discussed without ER visits.
I have UC for about 10 month and don't have pain. Only a little bit discomfort in the bottom of my belly during flare ups.
@@SuperMrAndersenwow same how are you now?
@@savage9670
I've been on Lialda all the time and it helped me the first day I took it, diarrhea went away.
But now I have little pain on the left side near belly button. And still no diarrhea. Dr says it's neurological pain, also he didn't check anything. I think pain is from UC. If you Google it - pain should be where I have it.
@@savage9670
Strange, I've written two messages for you now and they don't appear here 🤷
@@savage9670
Hi. Few month ago I've got little pain on the left side near belly button. Dr said it's neurological but he didn't check anything so I'm not sure. Also I don't have diarrhea since I started taking Lialda - literally the next day diarrhea went away.
I think this pain appeared after I began to eat a lot of fresh fruits and vegetables. Now I'm again on very strict diet and I think that helps.
I’m having the same problem I had my gallbladder removed two years ago I really don’t know if that have something to do with the problem I been having I just can’t stop going to the restroom after I eat and I only see blood sometimes but my right side of my stomach and back hurts 🤦🏾♀️
I got colitis after they took my gallbladder out it's over a year almost had to die of sepsis for them to find it I haven't seen any blood but puke and poop green try probiotics it's kinda helping me I've got graves diszise too
I'm so sorry were you embarrassed to have to poop in public places or at the parties you mentioned. I am so sorry about having a flare around your coworkers, I would have died of embarrassment to have to poop around them
I’m not a person who gets embarrassed easily so I always kind of just laughed it off. My friends were always pretty supportive and just laughed about it too, and luckily my coworkers are all nurses so they’re pretty desensitized to all that kind of stuff. I mostly was just embarrassed to have to be taken care of, I’ve always valued my independence and I don’t like having to rely on other people
@@sarah_louise_cole I envy that, I have stomach issues, and have always been embarrassed to poop anywhere but home, I hold it in public, at my girlfriend's house, anywhere where people know that's what I'm doing, do you have any advice?
Honestly I feel like it’s just one of those things that’s a mental barrier you have to get over in your own way. For me personally with UC there wasn’t ever an option of holding it, but I have always found that if I’m just honest with people and tell them about my digestive issues they’re never as judgemental as I think they’re going to be. It’s one of those things where nobody is ever paying as much attention as you think they are, most likely nobody is even noticing if you’re spending a long time in the bathroom even if you think it’s obvious!
What biologic are you on?
Hey I am super embarrassed about having to poop in public or at someone's house, I know I shouldn't care but I sadly do do you have any advice or anything that might have helped you? I was recently diagnosed with IBS which I know is not the same but any advice would be appreicated
Ibs is lot more different then iBD....i mentain a remission for nearly 2 years without medication in IBD...in my experience ibs is completly cured if you chnge your life style
Any surgeries??