What is Ulcerative Colitis? | My experience
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- เผยแพร่เมื่อ 2 มิ.ย. 2024
- Hey everyone!
I’m here to share what I have learned about this chronic disease. Hopefully it can help you not feel so alone :)
Feel free to like and subscribe! - แนวปฏิบัติและการใช้ชีวิต
Oh my goodness! I'm so glad I found you! You certainly have a lot of insight. I'm 23 and was recently diagnosed with proctitis last fall after a colonoscopy. Since then they've tried the steroids, enemas, suppositories all the fun stuff but my symptoms have not subsided. I'm getting a sigmoidoscopy this week to see if the inflammation has spread and if it's possibly chron's disease. I'm so glad I have your videos to watch and you are such a ray of sunshine! What a great attitude to choose positive. Really inspiring and thanks for the tips:)
Oh my goodness You are simply amazing and why you don't have more followers I don't understand because your content is off the chart amazing thank you from an old woman who has had an ostomy for 14 years and I'm still learning
I just sent this to a TikTok friend in Texas and oh my God she's going to thank me you explain things much better than many doctors do.
Thanks for sharing this! I'm 28 and I had diarrhea for 4-5 years almost daily. Since there is no blood, my doctor insists that I have irritable bowel movement and don't need a colonoscopy. But recently my symptom got worsened with cramps and more than five toilet trips everyday, so I'm doing a colonoscopy tmr. I'm about to drink my big jar of goods in 15min (I've already started to have diarrhea before I drink that thing lol) and I'm panicking rn... Hopefully my procedure can go well🙏🙏🙏 May god bless us all.
Thanks for sharing your experience! 🙏🙏
You are such a precious humble soul. Thank you for your openness in sharing all this information with us. Your attitude is so refreshing and helpful. God Bless you!
This is the sweetest comment!! Thank you for your support and kind words!
Thank you for posting this helpful video
You are simply amazing I don't know where you're from but I live in Canada and I am going to call The ostomy helpline here and tell them about your content because I am learning so much and I am an old woman with an ostomy for 14 years
I'm pretty much in the exact same place. I've had it for about five years now. I've tried pretty much all the choices with no effect other than the steroids that I could only take a very limited amount of and it's been getting far worse as of lately, I've been told if there's not an increase in my health I'll most likely develop colon cancer in give or take 6 years. I'm trying to get through college but it's hard when my stomach is always killing me and I'm always needing to run to the restroom. It hits me the hardest when I'm stressed it seems and so the stress of college doesn't help. Lately there's been a number of days where I would wake up, go to the bathroom, lose a ton of blood doing so, and them head back to bed to pass out again, only to repeat several more times. We've recently moved to talking about trying the surgery and I'm hyped. It does seem to work for a lot.
I haven't felt completely normal since the middle of high school, as it started with me around sophomore year. It made highschool a living hell and ironically the COVID pandemic allowing me to do schooling online helped massively. I've had to turn down so many opportunities because I just didn't feel I could leave my house for extended periods, cause of fear of not being able to find and reach the restroom combined with an absolute hatred of public bathrooms. As well over time the amount of foods that I can eat without causing me to feel like my guts are rotting from the inside out has decreased to very few things, many of which are very bland. And water is about all I can drink anymore without it affecting me, and even that can cause trouble as drinking water too fast can cause gas build up and often gas pains on top of everything else is the worst. So many times I've been invited to dinner with friends or family that I just have to turn down. It's caused me to grow a bit distant from some of my friends and it doesn't help that bathroom talk can be awkward with a lot of people. Hearing that the surgery has a high chance of returning my life to normal is like a dream. I've been thinking about how much I'll be able to do, no longer being held back. If all goes well a whole massive part of my life will be able to return to me. I honestly don't know the words to describe the joy that even just the thought of it gives me.
100%!! I feel like I could have written this! My guts felt rotten just like you described. Any updates ?? Is surgery planned? Before my surgery, I did the same as you and researched what life is like. Surgery, healing, and then learning to have an ostomy bag is it’s own new experience, but it gave me such hope to see what life could be like without worrying about if a bathroom would be close enough!
@@kaylaglumac3895 I ended up having to temporarily withdraw from college till next summer because I was struggling to juggle the two and am temporarily back on and currently being pretty much entirely held together by Prednisone, but I've got my surgery set for next month so I'm hyped. Big changes are coming in my life and I'm excited and hopeful to see how it goes and to be able to get back out there
@@michaelt4007 Good luck with your surgery!! I hope you have a quick recovery! Relief is on the way!!
Hello, I had a couple questions (Male, 16)
I was wondering how dangerous Humira and Remicade are really. My colitis isn’t bad at all and I'm in remission for long periods of time, but my doctor wants me to go on Humira. Can I ever come off of it or will I have to use it for the rest of my life? I feel fine most of the year but my doctor says I could get cancer because of "polyps" so I should go on humira
I'm so torn. I've had weird bowl issues for a while (getting on my second year) , but never diarrhea. Just lots of soft stools, and smelly farts, and poo urgency in the morning, even though thats subsided a bit. Only tend to go about once or twice a day now, where as it was 3 a day.
However, I'm still really paranoid, and want to get myself checked out as my symptoms are changing. I'm feeling more light headed, ectopic heart beats, Brief flashes of Nausea (more like a motion sickness nausea, which to be fair could be down to my eye site as thats gotten a bit worse lately) . But I'm 44, never ever been to hospital, have this phobia of pipes and tubes being shoved in places. But its been a terrible few months. Since Christmas, Lost my best friend on christmas day to cancer, lost a family pet the week after. Two months ago my otherhalf was made redundant, and now her dad is about to pass away as well, and my job is now on the line. I don't think we can take much more bad news, so I'm really stuck .
A lot of this could be down to anxiety .
Oh my gosh! I’m sorry, I’m just seeing this now! That’s a lot to be going through!! Stress definitely plays a huge part in my digestive system personally so it could be the case for you as well! Either way, it may be nice to have a solid answer from a doctor! It’s hard to know what’s going on inside without a look at it!
Kayla...what about your wedding? That was two years ago now and could have caused this flare up. The stress of planning and getting everything in order and the whole thing could have caused the major stress but because you were constantly, and very well could be subconsciously, thinking it over thinking or stressing about the wedding...what if that longevity caused the flare and because you were focused on the wedding, your body couldn’t recoup?
That's definitely something I considered! I had also started a new job a couple months before the wedding and parts of the job have been basically a constant stressor ever since. I actually think that has more to do with it! I think the reason I feel the wedding wasn't as stressful is because our wedding coordinator took care of a ton of the details, so I didn't have a ton to worry about! Who knows though. A long term stress like that can really wreck havoc for a chronic illness!
I'm on Prednisone all the time how did surgery go for you or did you have the surgery every dude how you feel about it now
I clicked on your channel though a post on facebook and found this. I find different medical conditions interesting, have you ever seen any videos by Hannah Whitton? She has this also and posts many videos on the subject.
April Harwig yes!! I love watching Hannah’s videos! She has made it super easy for me to come to terms with having a stoma (which will be in 3 weeks for me)!
@@kaylaglumac3895 good luck with the procedure, I subscribed so I will watch for any updates you post.
April Harwig thank you! I will definitely be posting more videos!
I have left sided colitis and I’ve been on on Remicade and Entyvio. Now my doctor wants to put me on Hyrimoz which is a generic version of Humira. I’ve been on presnidone for a year and a half now and I know my body has become dependent on it, every time I try to come off of it I flare up. Presnidone has caused me to put on a lot of weight.
I’m really not ready to do surgery that is my last option. I’ve only had it for 2 1/2 years but can never stay in remission for long. I really hope this Hyrimoz works.
Also you’re right it can make you feel lonely but there is an IBD health line app for people with Chrons and Colitis which has helped me a lot.
Thinking of you!! I hope the Hyrimoz works for you!! I'm sorry to hear that your body has become dependent on prednisone as well. It's such a frustrating thing to go through. You are doing the right thing by researching your options. I know how scary surgery can be. It took me awhile and a lot of TH-cam video watching to finally accept it and I actually feel healthy now for the first time ever! When do you get to start Hyrimoz?
Kayla Glumac Thanks..I should be starting Hyrimoz in a few weeks.
How are you now
Hi
@@plaskitkenya8071 Hi, Hyrimoz didn’t work for me so now I’m on my 4th biologic which I started a few months ago.. still on prednisone as well.
❤
Kayla… do u have to be on any medication after your surgery… if yes.. why?..
Hey Suhel! Yes! I do have to do a mesalamine suppository a few times a week. When I had my surgery, they left part of my rectum in place in case I decided to do the J Pouch surgery down the road, so I still have some ulcerative colitis in that rectal stump that flares now and then. The suppository really helps to calm it down so it doesn't bleed anymore!
@@kaylaglumac3895 .. I would just say You are a awesome human being.. thanks for your reply.. May god fulfill your desires in this world and hereafter..🙏🏼
I have stomach issues, not Colitis, and am embarrassed when I have to poop in public bathrooms, is this something you experienced and if so how do you handle it?
Mike Smith oh definitely!! I actually had a super embarrassing bathroom trip, actually several in an hour where I had to keep going back to the same bathroom when I was at a doctor appointment last week. I just tell myself “everyone poops and I will never see the other people again!” Also, when I hear that someone else is sitting silently for a long time in another stall, I try to be super fast in there so they can feel more comfortable and people usually do the same for me ha. Otherwise my best advice is to try to find a single stall bathroom!!
I have a high colon cancer rate on both sides of my family I got to go in April 8th and have my large intestine removed I know cancer is different than colitis is there any tips you can give me
How did I miss your comment? shoot! Sorry about that. How did your surgery go? Smart to go in for prevention with such a high colon cancer rate on both sides of your family.
@@kaylaglumac3895 I was in a lot of pain for a couple of weeks after my surgery
@@kaylaglumac3895 but other than that it went pretty good no complications
would you take poo trasplant or tablet form its 90% prove to work .
I remember before surgery, my manager brought an article to me about that! I believe at the time it was something new in Europe, but I don’t remember if it was being done in the US at the time of my surgery! I think that would have been amazing to try and see if it worked!!