In which I tell you about the different medications I've taken to try to get my ulcerative colitis under control. Twitter: / joyandjoyness Twitch: / joyandjoyness
Thank you so much for sharing your update on your current treatment for your Ulcerative Colitis. I myself also have UC and I’ve had it for 3 years now. I started with Remicade for the first few months also my Gastroenterologist prescribed Prednisone for me to take for 2 months and then after calming my Colitis my gastroenterologist had me switch to balsalazide It was working great for me for the first 8 months I like it but I had so many side affects with it especially with acne and I also had to take 9 pills a day. So I then asked my Gastroenterologist if I could switch to a different medication so then he prescribed Lialda. And so far it’s been good to me. I don’t have any major side affects I only take 3 pills a day. I’ve been taking Lialda for about 11 months and I’ve been able to stay in remission. I’m glad that the enemas have been working for you. Also, do you eat certain foods that’s help in calming down the flare ups? So far eating a whole food Plant based (almost vegan) diet has help me out a ton.
Hey, happy to hear that You are fine! Could You please write down for me names of those which works for You? I'm from Europe so never heard about PRIZO or the second that I can't understand, so i'll check for replacements in my coutry. TIA
I can't get over how expensive that prescription is! We pay for ours in England but I can't complain! I also took asacol in the early days, been on azathioprine for nearly 7 years now. Over the past few months I've been doing weekly Crohn's related videos - so nice to be able to talk about it openly after so many years! :D
@@joshujere2988 I still got the Symptoms because I stopped the medicine for a while. Now I’m taking the medicine again and currently undergoing treatment. 🙏
Stay away from Hot Sauce (I use Heinz 57 Sauce) Carbonated Drinks, Alcohol and Coffee (I add a lot of milk to coffee) and drink milk often. Lots of salads are good as well.
Hi I'm waiting for my jpouch to be hooked up.I had quick onset colitis.the first surgery was a huge relief,painless and lifesaving,the second surgery was annoying and so is the loop ileo.I find just basic foods like chicken,fish,meat with rice or potato works well.when you have an ileo alot of salads give me the squirts or just come out untouched but I still like onions ,tomatoes and lettuce. Coffee goes straight through and into the bag which is good for clearing out any blockages.and I still can drink lots of beer but I prefer vodka more now. And I drink about 3litres of electrolyte drink a day . The bags can leak if I sweat alot or move around to much and allow it to fill up to much. But I feel and look very healthy and I think it's because my stool goes straight out of me and is not held inside for longhours.
Have you tried checking with your doctor's office if there is cheaper way to get apriso? Sometimes it isn't just an insurance issue but also which pharmacy you order it from. I've seen this happen with a couple of different medications and they were much cheaper at the pharmacy chosen by the doctor's office.
Honestly, it's been so long that I can't remember what I said in the video, but I think this was just my insurance. The insurance I was on wouldn't cover prescriptions until I hit my deductible, so I found out in January that the deductible was $3,000, and until then, I had to pay full price. But I do know what you're talking about. I've had that happen with various insurance companies since. Some insurances I've had will only pay if it's at an approved pharmacy, and others will just charge more. (Ex. my current insurance charges $65/prescription at a Level 2 pharmacy, but only $55/prescription at a Level 1 pharmacy. Honestly, still not great but apparently UC medication is "specialty" or something so I can't just pay $15/prescription like I was lead to believe when I signed up. Gotta love the nuances of American healthcare!)
Thanks for the follow-up. Imuran, Lialda, and mesalamine enemas have been a mainstay for me for about two years now. I did have to go on prednisone once. I just started experimenting with CBD oil. We’ll see how it goes! I also experimented with tumeric suppositories, but that was a neon yellow mess ;)
I sweat thru 3 to 4 pairs of clothes a night without meds for UC proctitis :( I hope Mesa enemas don't make things worse. I'm also noticing hair thinning before meds but then again I'm totally malnourished so what can I expect.
thanks you describe me there 👌 I had same situation. start with Asacol at one point I was paying $945 a month then apriso and I was paying almost $500 now am doctor prescribed me (sulfasalazine) and (mesalamine) enemas is very cheap compared and is working for me I understand not all medications work the same for every one but the treatment is less than $200 a month hope you keep filling better is not easy deal with this disease change my life about 8 years ago
How are you? I saw your other video and then here you look like you have gained weight! You look happier 😀 I wish I could find a solution soon...I don’t have colitis but ibs Cand D food stays long enough but my body doesn’t absorb enough and then I flare...especially if I don’t eat enough fiber...anyways i miss being 112lbs now I’m 94...I hope I can gain and maintain it!! Goal is 105 pounds
I’ve had UC since I was 18, I’ve been Lialda, 4 pills a day since then. I’ve had many ups and down, maybe steroids and when I have found to work for me is Uceris Rectal foam.
My brother has colitis and used to take steroids. I believe the goal is to slowly wean yourself off of them right? They have some pretty bad long term effects. But yes he had the same thing where his window would be open all day as it was snowing and he'd be fine in a t shirt lol. Glad to hear you're doing better tho
I had an Ulcerative colitis at 2014 and I had sever headache and uncontroled diarrhea and after diagnosed I started to take pomegranate , vegetables and fruits and also goat milk with medication , my disease was totally remised at previous year currently I continuing to take vegetables and fruits and goat milk, According to Ayurveda goat milk and pomegranate are very effective for remission of Ulcerative colitis. Even blueberries are also effective for remission .
I’m having this condition for 2 years now it’s awful but i’m taking mesalazine Rectal Foam and it’s working really well with me but as soon as i stoped it the condition is coming back again
Hello, I have uc. This is First flare up for me after remission. Have been on apriso for 6 months. Took prednisone off the bat when diagnosed. Do i need to get back on steroid to control it again??
@@aprilepp74 it's been a while fro this post. I'm currently taking Entivio and Prednisone. In remission. Thank you for your posts. Good luck friend and good health
When medication that once works stops being effective, that's when I's the most discouraged. The steroids I've been taking have been great, but I fear that once I stop taking them and fall back on relying solely on Apriso to keep me in remission, it won't work and I'll have to start all over again. I'm hoping that isn't the case, though, and fingers crossed whatever you find next works better!
Absolutely! What is the name of the steroid? I was just prescribed Canasa after a recent colonoscopy and I have to take it for the first time tonight. I'm definitely nervous about it!
Mam i have same deacese from last 15 days , i have done colonoscopy and found ulcerative colitis, please prescribed some medicine to release from it please mam....i am 24 year old.... And my family very poor and family depends on cultivation
ask you doctor about sulfasalazine is the cheapest one I paying out of my pocket plus sometimes prednisone esteroit is like $50 for both good luck and tried eating food that helps
Ulcerative colitis is a type of inflammatory bowel disease (IBD). It is an immune mediated chronic intestinal condition. UC is a mucosal disease that usually involves the rectum, and extends proximally to involve all or part of the colon. The major symptoms of UC are diarrhea, rectal bleeding, tenasmus, and passage of mucus and crampy abdominal pain
dude, the sweating with the steroids is fucking awful, I don't miss them shits at all. My UC started not responding to them after awhile too and they kept having to increase the dosage which was having all kinds of nasty symptoms. I know everyone is different, but Steroids are terrible for you. Has your Gi Dr. recommended infusions yet? I'm on Remicade. I get an Infusion once every 8 weeks, and it still allows me to travel "almost" full time. I have to drive back home to Florida for infusions every 8 weeks, but I feel like a normal functioning human without having to race to a bathroom constantly and I don't have to remember to take pills with me everywhere, or to take them on time, etc.
those medication prices you pay are complete bullshit. in sweden we have a sort of "roof" on how much total we need to pay for our meds ourself then the state covers the rest . ive had UC since 2016 and i pay around 210 dollars a year in swedish kronor. I hope your economy gets better so you can afford full doses. Love from sweden
Mesalamine almost killed me. It helped with the colitis, but then after a period of time it caused meningitis and sickness like you wouldn't believe. I had no idea it was the culprit, but after a trip to the hospital where they couldn't figure out what the problem was, my GP figured it out.
I was diagnosed in 1985 at age 11, and all the meds are temp fixes, Iong story short, if I could save someone a lifetime of pain, misery and missing out... Check out Dr. Rehnke at Palms of Pasadena Hospital in St. Petersburg Florida (your state). He performs a surgery called a BCIR, had I known about flares leading to becoming toxic and having an option before hand I would've taken it. It's a major step to take to even think about, but ask your gi doc how many people in your condition eventually have to have emergency surgery. Once the colon is gone the disease is gone. You can take control again, different, but at least the ball stays in your court. I have been through what you are going thru, I hope the option is of help to you, bc most gi docs wont tell you there's another option, other than a j-pouch (btw- still leaves a part of your colon which will cause another surgery) or colostomy. I have a life again bc of the BCIR please look into it
Nathan Jones To keep it short here’s like 2% of my story. I was diagnosed in December 2014.. March 2015 colon ruptured. Emergency surgery.. spent my 21, 22, 23 birthdays in the hospital. Mostly because of recurring obstructions cause by a small stoma hole...... so if your dealing with multiple obstructions could be a small stoma..... It’s been a year since my take down. J pouch life. I’m 24 now. And live in south fla. And a cure in my eyes would have been me still having my colon.. Also humira alone almost killed me. Gave me Staff and mersa infections and left scars all over me.. Be safe people! And please don’t believe everything doctors say
Eagle Soaringhigh , im truly sorry for you, I understand. My only intent was to share what worked for me, and wish I had the option earlier. It doesn't hurt to find out all your options, especially being that close to Dr. Rehnke. Im not selling it to you, surgeries are painful crazy things and on so many levels, mental, physical..... You're in my prayers, good luck.
Drs. do not know how to treat UC. They treat the symptoms not the disease. Start with Dr Klein’s self healing UC and Crohns. Do the research. I am healed.
Thanks for all the positivity and making me feel that I can fight this
Glad you are getting better!
god bless you i know meds can be so expensive but your health is more important than money and i wish they had programs for people who need it
Thank you so much for sharing your update on your current treatment for your Ulcerative Colitis. I myself also have UC and I’ve had it for 3 years now. I started with Remicade for the first few months also my Gastroenterologist prescribed Prednisone for me to take for 2 months and then after calming my Colitis my gastroenterologist had me switch to balsalazide It was working great for me for the first 8 months I like it but I had so many side affects with it especially with acne and I also had to take 9 pills a day. So I then asked my Gastroenterologist if I could switch to a different medication so then he prescribed Lialda. And so far it’s been good to me. I don’t have any major side affects I only take 3 pills a day. I’ve been taking Lialda for about 11 months and I’ve been able to stay in remission. I’m glad that the enemas have been working for you. Also, do you eat certain foods that’s help in calming down the flare ups? So far eating a whole food Plant based (almost vegan) diet has help me out a ton.
Please tell me if Gluten free and Lactose free Diet has worked for you? also I recently noticed that Coca Cola worsens it for me
Hey, thanks for this video and opinions on how different drugs affected you. Very helpful.
Hey, happy to hear that You are fine! Could You please write down for me names of those which works for You? I'm from Europe so never heard about PRIZO or the second that I can't understand, so i'll check for replacements in my coutry. TIA
I can't get over how expensive that prescription is! We pay for ours in England but I can't complain! I also took asacol in the early days, been on azathioprine for nearly 7 years now. Over the past few months I've been doing weekly Crohn's related videos - so nice to be able to talk about it openly after so many years! :D
Can you suggest what can i do for stop bleeding
I’m currently diagnose with severe ulcerative colitis please uphold me in your prayer 🙏
Hello. Please I’ll like to hear on how far you’ve been managing it.
@@joshujere2988 I still got the Symptoms because I stopped the medicine for a while. Now I’m taking the medicine again and currently undergoing treatment. 🙏
Stay away from Hot Sauce (I use Heinz 57 Sauce) Carbonated Drinks, Alcohol and Coffee (I add a lot of milk to coffee) and drink milk often.
Lots of salads are good as well.
@@joshujere2988 currently it’s in control now. I have taken Azoran tablets and Infliximab inj. I don’t have any symptoms for the last 1 year.
@@spartacusreviewif i drink milk i get a uc flare immediately
Hi I'm waiting for my jpouch to be hooked up.I had quick onset colitis.the first surgery was a huge relief,painless and lifesaving,the second surgery was annoying and so is the loop ileo.I find just basic foods like chicken,fish,meat with rice or potato works well.when you have an ileo alot of salads give me the squirts or just come out untouched but I still like onions ,tomatoes and lettuce.
Coffee goes straight through and into the bag which is good for clearing out any blockages.and I still can drink lots of beer but I prefer vodka more now.
And I drink about 3litres of electrolyte drink a day .
The bags can leak if I sweat alot or move around to much and allow it to fill up to much.
But I feel and look very healthy and I think it's because my stool goes straight out of me and is not held inside for longhours.
Have you tried checking with your doctor's office if there is cheaper way to get apriso? Sometimes it isn't just an insurance issue but also which pharmacy you order it from. I've seen this happen with a couple of different medications and they were much cheaper at the pharmacy chosen by the doctor's office.
Honestly, it's been so long that I can't remember what I said in the video, but I think this was just my insurance. The insurance I was on wouldn't cover prescriptions until I hit my deductible, so I found out in January that the deductible was $3,000, and until then, I had to pay full price. But I do know what you're talking about. I've had that happen with various insurance companies since. Some insurances I've had will only pay if it's at an approved pharmacy, and others will just charge more. (Ex. my current insurance charges $65/prescription at a Level 2 pharmacy, but only $55/prescription at a Level 1 pharmacy. Honestly, still not great but apparently UC medication is "specialty" or something so I can't just pay $15/prescription like I was lead to believe when I signed up. Gotta love the nuances of American healthcare!)
How long have you been having UC and whats your medication now?
Thanks for the follow-up. Imuran, Lialda, and mesalamine enemas have been a mainstay for me for about two years now. I did have to go on prednisone once. I just started experimenting with CBD oil. We’ll see how it goes! I also experimented with tumeric suppositories, but that was a neon yellow mess ;)
Any update?
I sweat thru 3 to 4 pairs of clothes a night without meds for UC proctitis :( I hope Mesa enemas don't make things worse. I'm also noticing hair thinning before meds but then again I'm totally malnourished so what can I expect.
thanks you describe me there 👌 I had same situation. start with Asacol at one point I was paying $945 a month then apriso and I was paying almost $500 now am doctor prescribed me (sulfasalazine) and (mesalamine) enemas is very cheap compared and is working for me I understand not all medications work the same for every one but the treatment is less than $200 a month hope you keep filling better is not easy deal with this disease change my life about 8 years ago
How are you? I saw your other video and then here you look like you have gained weight! You look happier 😀 I wish I could find a solution soon...I don’t have colitis but ibs Cand D food stays long enough but my body doesn’t absorb enough and then I flare...especially if I don’t eat enough fiber...anyways i miss being 112lbs now I’m 94...I hope I can gain and maintain it!! Goal is 105 pounds
I’ve had UC since I was 18, I’ve been Lialda, 4 pills a day since then. I’ve had many ups and down, maybe steroids and when I have found to work for me is Uceris Rectal foam.
How r u now
What fluid do you use with enimas? I add a few drops of Caster oil.
My brother has colitis and used to take steroids. I believe the goal is to slowly wean yourself off of them right? They have some pretty bad long term effects. But yes he had the same thing where his window would be open all day as it was snowing and he'd be fine in a t shirt lol. Glad to hear you're doing better tho
I had an Ulcerative colitis at 2014 and I had sever headache and uncontroled diarrhea and after diagnosed I started to take pomegranate , vegetables and fruits and also goat milk with medication , my disease was totally remised at previous year currently I continuing to take vegetables and fruits and goat milk, According to Ayurveda goat milk and pomegranate are very effective for remission of Ulcerative colitis. Even blueberries are also effective for remission .
Are you fully cured with this diet ?
لا تأخذ أدوية مع هذا النظام الغذائي؟وشكرا
My wife said she evacuated a dark liquid the next day. Is that normal?
I’m having this condition for 2 years now it’s awful but i’m taking mesalazine Rectal Foam and it’s working really well with me but as soon as i stoped it the condition is coming back again
Foam?
How are you feeling now ?
I want to talk to you about this ulcer coallities.how do i contact you.
Hello, I have uc. This is First flare up for me after remission. Have been on apriso for 6 months. Took prednisone off the bat when diagnosed. Do i need to get back on steroid to control it again??
How do you take the Apriso, mg and times a day?
@@aprilepp74 .375 mg 4 pills daily in the morning
@@aprilepp74 it's been a while fro this post. I'm currently taking Entivio and Prednisone. In remission. Thank you for your posts. Good luck friend and good health
Hey hey 😀
Are you okay ? ( Hope you have a good health )🤩🤩
My brother have Ulcerative Colitis too so i can feel you🥲.
Have a nice days.🤗
I take Apriso too and it worked for me when I first started and now it’s not. It’s so frustrating.
When medication that once works stops being effective, that's when I's the most discouraged. The steroids I've been taking have been great, but I fear that once I stop taking them and fall back on relying solely on Apriso to keep me in remission, it won't work and I'll have to start all over again. I'm hoping that isn't the case, though, and fingers crossed whatever you find next works better!
Absolutely! What is the name of the steroid? I was just prescribed Canasa after a recent colonoscopy and I have to take it for the first time tonight. I'm definitely nervous about it!
Mam i have same deacese from last 15 days , i have done colonoscopy and found ulcerative colitis, please prescribed some medicine to release from it please mam....i am 24 year old.... And my family very poor and family depends on cultivation
ask you doctor about sulfasalazine is the cheapest one I paying out of my pocket plus sometimes prednisone esteroit is like $50 for both good luck and tried eating food that helps
Ulcerative colitis is a type of inflammatory bowel disease (IBD). It is an immune mediated chronic intestinal condition. UC is a mucosal disease that usually involves the rectum, and extends proximally to involve all or part of the colon. The major symptoms of UC are diarrhea, rectal bleeding, tenasmus, and passage of mucus and crampy abdominal pain
why r u defining ? every body knows it here.
dude, the sweating with the steroids is fucking awful, I don't miss them shits at all. My UC started not responding to them after awhile too and they kept having to increase the dosage which was having all kinds of nasty symptoms. I know everyone is different, but Steroids are terrible for you. Has your Gi Dr. recommended infusions yet? I'm on Remicade. I get an Infusion once every 8 weeks, and it still allows me to travel "almost" full time. I have to drive back home to Florida for infusions every 8 weeks, but I feel like a normal functioning human without having to race to a bathroom constantly and I don't have to remember to take pills with me everywhere, or to take them on time, etc.
What a gorgeous woman!
those medication prices you pay are complete bullshit. in sweden we have a sort of "roof" on how much total we need to pay for our meds ourself then the state covers the rest . ive had UC since 2016 and i pay around 210 dollars a year in swedish kronor. I hope your economy gets better so you can afford full doses. Love from sweden
I'm taking Octasa since then my sleep pattern is up the wall
How old were you when your disease presented?
I was 16 when I first experienced signs of my UC, but I didn't get formally diagnosed until I was 17.
@@JoyandJoyness symtomps please
I’ve noticed, that Cortison (Steroid) is the only thing that keeps my UC under control..
Mesalamine almost killed me. It helped with the colitis, but then after a period of time it caused meningitis and sickness like you wouldn't believe. I had no idea it was the culprit, but after a trip to the hospital where they couldn't figure out what the problem was, my GP figured it out.
U r so pretty.....
you from lebanon ? i have also ulcerative colites
I'm from the US, but my grandma is Lebanese.
@@JoyandJoyness i am from lebanon
I was diagnosed in 1985 at age 11, and all the meds are temp fixes, Iong story short, if I could save someone a lifetime of pain, misery and missing out... Check out Dr. Rehnke at Palms of Pasadena Hospital in St. Petersburg Florida (your state). He performs a surgery called a BCIR, had I known about flares leading to becoming toxic and having an option before hand I would've taken it. It's a major step to take to even think about, but ask your gi doc how many people in your condition eventually have to have emergency surgery. Once the colon is gone the disease is gone. You can take control again, different, but at least the ball stays in your court. I have been through what you are going thru, I hope the option is of help to you, bc most gi docs wont tell you there's another option, other than a j-pouch (btw- still leaves a part of your colon which will cause another surgery) or colostomy. I have a life again bc of the BCIR please look into it
Nathan Jones To keep it short here’s like 2% of my story. I was diagnosed in December 2014.. March 2015 colon ruptured. Emergency surgery.. spent my 21, 22, 23 birthdays in the hospital. Mostly because of recurring obstructions cause by a small stoma hole...... so if your dealing with multiple obstructions could be a small stoma..... It’s been a year since my take down. J pouch life. I’m 24 now. And live in south fla. And a cure in my eyes would have been me still having my colon.. Also humira alone almost killed me. Gave me Staff and mersa infections and left scars all over me.. Be safe people! And please don’t believe everything doctors say
Eagle Soaringhigh , im truly sorry for you, I understand. My only intent was to share what worked for me, and wish I had the option earlier. It doesn't hurt to find out all your options, especially being that close to Dr. Rehnke. Im not selling it to you, surgeries are painful crazy things and on so many levels, mental, physical..... You're in my prayers, good luck.
Its damn expensive medicin. Here you pay up tp 250 dollars and rest is free for 12 months.
wow nice cute
I have uc to
But
Oh God you are so cute 😍😍
Drs. do not know how to treat UC. They treat the symptoms not the disease. Start with Dr Klein’s self healing UC and Crohns. Do the research. I am healed.