I am so proud of you. This needs to be heard and talked about more. And, I literally watched this while eating my lunch. So, if that doesn't scream "IBD girl," then I don't know what does LOL
Oh I love that so much! I do the same thing. Sometimes I bring up my bowel movements during dinner and forget that not everyone is that comfortable hearing about my poop - especially not while eating!
This girl is making it feel "normal" n yes- I'm always talking at weirdest opportunities about bleeding / insertion / pus / my bathroom smelling like death during flares😂🤣
No apologies necessary. Understanding your journey is more than enough reason for me to continue watching, but the information you're sharing is so helpful to so many. Thanks, Alice!
Thank you for this. I'm over here wondering if I'm using this wrong, and it's not like I can just ask someone, ugh. Your confidence and demeanor help me feel a little more at ease and less embarrassed of this.
You're so welcome! Please don't hesitate to reach out if you have any questions. It's all so confusing and the directions included in the boxes are rarely helpful!
This has been so helpful. My whole home goes through either se ere constipation or constant diarrhea. You're adorable how you went about this video. 😂❤
I really appreciate this video. Thank you so much for being brave and vulnerable and willing to share you experience with us. It's extremely helpful and informative as IBD is a part of our family's lives, and helps us know we're not alone in this journey.
I have a complete spinal cord injury and therefore have trouble control my bladder and bowels as well and I would just like to let you know of an enema-like system known as the Peristeen! A lot of people have success using it with incontinence! I am also a very small youtuber, and may I say, you are very professional! You deserve more views and subscribers 😂
Thank you for your kind words, and thank you for the tip! I've never heard of Peristeen but I'll definitely have to look into it. Hope you're feeling better!
When I was given suppositories- I saw your video and squatty potty made it a so good for me. Now have to do mesalazine enema starting today. Hope I am not scared. Thank you so much for your videos its a major moral support.
I’m literally editing a video on enemas right now! I’d recommend doing the mesalamine one right before bed, even while laying in bed if you can manage it. If you can use the bathroom right before, even better. You want the medication to stay in place for as long as possible!
Thank you so much for making this video, I’ve never had to use a treatment until yesterday. You answered a lot of my questions, and made the process easier for me. I hate to ask this 😣😓 but… how far are we supposed to insert the tip of the applicator when applying the medicine? The whole tip?
Hi there! Wow, I am so glad to hear that you found this video helpful! I know how confusing and kind of scary it can be to try these out with no experience, so I really hope this helped comfort you a bit! As far as the applicator is considered, I think generally you should insert it "as far as you can comfortably" do so. So I basically stick the whole tip up in there before releasing the foam. I hope that's helpful! Please feel free to reach out if you ever have any more questions!
You made a darn disease seem like it’s ok to have. I’ve always thought the disease happened to me due to bad luck. I realize why you made this video but it’s comforting to know that someone else knows what I’m going thru. The Proctofoam works well for me but I agree it’s wasteful. Thank you 🙏 for being so sparkly about a bad disease.
Don't get me wrong - this disease really does suck. And I hate it! But I also like to believe that things happen for a reason, so I try my best to be positive and make an awful situation slightly more bearable by making fun of it and educating others. I'm glad you find my experiences comforting - you're not alone!
Watched this the day I started Cortifoam. I'm in my second flare of what we suspect is late-onset UC. You had me worried I wouldn't be successful using this foam; but once you follow the direction to set the cannister on a hard surface (bathroom counter), it easily fills the applicator. That is the trick, don't try to use it hand-held as you do in the video. Shake cannister well, attach applicator tube, pump the cannister's "wings" a couple times, let the foam expand... repeat... repeat... until the applicator is filled and an air bubble pushes a tiny bit of the foam up between the applicator and plunger. Then you're ready to dispense. The medication is working well as of Day 5. You're a great presenter, my very best to you.
Finally got to watch the new video! I loved it so much! I was literally laughing out loud, you made it really fun to watch! It is informative...do make more of these videos Also, you look stunning in that outfit (is it a ball gown?) and your background is very pretty!!
Always love seeing your comments Miss Diya! I'm glad you found it funny and entertaining! And I wish this was a ballgown, sadly just a blouse but hopefully I'll have an excuse to wear a gown again one day soon!
Hello, happy February! For the last product, is it possible that the pulling up of the plunger to the fill line should happen *after* the priming of the tube? Maybe that negative pressure is how the foam is meant to enter the syringe. As you have it in the video, the foam can't enter because there is nowhere for the air inside the syringe to be displaced. As a result, the foam pools around the tip and is wasted. Just a thought! :)
I genuinely think I've tried everything and nothing works! The priming only happens the first time you use it, but regardless it hardly ever works the way it's supposed to. But thank you so much for the tip! I'll give it a try and see if it makes a difference.
IKR! Actually ur an 😇 angel for making me feel I'm not alone. And I love Canasa....Proctofoam was prescribed for thrombose hemmroids. It worked but ur right about waste of foam! And now it cost a lot even w/good insurance! TYTYTY!!!!
@@ChronicallyMusical Well I handled it very good and at the second day I already felt like a pro😎 So your Video definetely helped🤗 Unfortunately my body didnt like the foam...
Thank you for this wonderful video! So much information you are amazing! I was just diagnosed with UC at 23 years old. I've been nervous but I'm trying to learn as I go! Thank you (:
I'm so sorry to hear of your diagnosis, but I'm happy to welcome you into the community with open arms! It's hard to wrap your head around something like this but I'm sending you hugs!
I have proctititis. As you know UC of the rectum. One. Thank you! 2. Which one works best for you? I've never had a bm unintentionally. The protafoam did 0 to help produce a BM. I also have the meslamine suppository. I've never put anything in my bum before and I'm so unsure what to expect regarding effects or if this will cause me to poop in my sleep. Say the meds start working while asleep. Do you get any warning? Do you wake up with a sudden urge to go?
Hi Jeffry! Unfortunately I never noticed much benefit from either steroid rectal foam - it always just came right out of me! But I will say, I never slept through having an accident. The urge to use the bathroom always wakes me up, and I have to run to the toilet. When I'm flaring, it could be getting up 10 times in one night! Sometimes I don't get to the toilet in time, but I've never soiled myself in my sleep. I hope this helps!
@@ChronicallyMusical You're doing a great job! I'm really impressed with how on track this video is. Editing, format, filming, energy- everything is great!!!
Thank you for your kind words (and extra comments!). Always love connecting with other violists and I hope to continue making these kinds of taboo subjects a bit less awkward!
Just been for a colonscopy :(...and been told they might be introducing suppositories to my treatment...so thought id do some research...found your video, very informative and good to hear its the "best" lol
Oh I so wish I could’ve provided a bit more insight into that specific treatment - it’s really the only one I haven’t tried. I hope you’re finding relief with it!
I have been taking mesalamine ( Appriso) in the morning after a recent flex sig I was prescribed a mesalamine suppository at night, I have horrible anxiety and can't use the suppository and I feel the disease getting worse... I have had a colon resection, humira was a failure, I almost died after being in a Chrons MED study ( the manufacturer of humira) I had alot of blood transfusions so now at 53 I recieve the depo shot to stop my period... Just wanted to let you know that I get it.. I have Chron's Dis and Inflammatory Bowel disease... AND ALOT OF OTHER ILLNESSES CAUSED BY COMPROMISED IMMUNE SYSTEM.. THANK YOU FOR KEEPING IT REAL⭐⭐⭐⭐⭐⭐⭐ I am looking for a rectal suppository applicator... Budesonide and Uceris are the same med( steroid) I have taken both in capsule form
Hi thanks for the video. I am having a bad flare up now after 16 long years of remission. Was on Mesacol suppository for a month, but that dint work, ulcers spread above rectum so its 2nd stage now with blood, pus and diarrhea, was given entofoam for 7 days only, no relief yet. In your case are you on life long usage of these? Or do you stop when remission occurs? Please reply
Hi there! I’m so sorry to hear you are struggling and in a flare - I definitely know how you feel! Some of these treatments are maintenance for me and others are not. The steroid foam, for example, is not intended for long term use. I had some reoccurring bleeding last year and the foam really helped get that under control so I could reach remission. The mesalamine suppositories however I use every day and don’t cause my any negative side effects but help keep things calm for now. I hope this helps, hang in there!
The last one you have to turn it down and the shape needle 💉 shold be down after clicking 2wice than take medication from the bottle like when you taking a blood sample same steps you have to do to take the foam. I’m not 100% sure of this step but i think this is how it works mabye
Interesting! Maybe I misread the instructions? Thankfully I don't take this medication anymore so I don't have to deal with how frustrating using it is!
Thank you for your video great job!!! I am taking the suppositories, Wondering if had any issues being regular, I have to use Magnesium Citrate to clear my bowls every 5 or 6 days, not sure what is happening with me? Seeing the doctor soon about this recurring problem, just wanted to know if had this similar problem?
Oh no! That sounds awful! I've only ever used magnesium citrate before a colonoscopy but not on a regular basis. It sounds like you could possibly have an impacted stool or blocked colon perhaps?? I hope you're feeling better since posting this comment!
You are very brave to talk about such embarrassing things. I kind of did not understand why you need an enema for this. Sorry for the lack of knowledge 😐
Thanks for sharing, Mike! Unfortunately there are a lot of people who don't know about ulcerative colitis and the types of medications we have to take, so I'm grateful there are people out there like you who are willing to educate themselves and learn!
Hi Aria, currently I have a Blue Shield Silver 94 plan through Covered California and it has been covering most of my prescriptions and procedures. My premium at the moment is very reasonable.
I was given a prescription for mesalamine enema and I am afraid to take it due to side effects. Have you ever expected side effects. I would of rather of had suppositories.
Hi Jesse! Unfortunately I don't have experience with mesalamine enemas myself, but I take mesalamine orally and use mesalamine suppositories and I have noticed little to no side effects with both of them. I think the benefits of this particular medication greatly outweigh the possible negatives!
You got defective piece the last one u used. I have that n it works well. Here in india it is called entofoam enema. It fills automatically when u pump it. No need to pull it first.
Starting uceris rectal foam tonight I’m very nervous to start it does it hurt when it goes in like the foam? I have moderate to severe inflammation right now what does it feel like
Hi Lucas! My apologies for just gettin back to you. How did it all go? In my experience, the only "pain" I've experienced with these treatments can be when inserting the applicator for the rectal foam. If there is inflammation near your rectum and you are actively bleeding, it can be a bit sore sticking something up there. However, I did not ever experience any pain from the actual foam itself, and once you take the applicator out you shouldn't feel anything!
@@ChronicallyMusical it’s been alright I often have to use the bathroom shortly after I use it because I’m up a lot at night using that bathroom but for me I feel it’s not really working because it’s only in me for like a hour or 2 until I wake up and poop
@@lucasgryzen8973 I definitely understand! Most of the time when I was on any kind of rectal foam during a flare, I immediately pooped it out! Have you tried experimenting with when you use it?? Perhaps you might hold it in a bit better during the day?
Oh gosh unfortunately I haven’t had experience with liquid inserts before. Are these different than Mesalamine suspension enemas? If not, I might be able to connect you with someone who has experience with using those or similar therapies. Please feel free to shoot me a DM on Instagram @alicepingviola!
hI. iAfter Covid I made colitis and procitis and I can't poo, my rectum si so inflamed that I can't poo and it hurts like hell, I sleep with poo in my rectum and it hurts really bad.... I take some laxatives called sena that helps do stool one time in the morning lots of it than I cant do anymore during the day, I am always in pain, doctors can't help me becuase they don't believe is so serious. I have no idea what to do anymore.
Hi Jay! Are you based in the U.S.? If so, have you tried checking out the Crohn's and Colitis Foundation? Depending on where you live, there is likely a chapter based near you, and you can absolutely reach out and inquire about what kind of support groups they have. You can use this link and see if there are any support groups in your area: www.crohnscolitisfoundation.org/find-a-support-group
@@ChronicallyMusical I found out there is one close to me (I live in the south) and I'm honestly petrified to open up to strangers about the struggles of having this disease.
I've been prescribed the foam steroid and I just cannot get the damn medicine to stay in the second it's inside my body says nope and I gotta go the toilet - any tips (sorry tmi)
Not TMI at all! I know exactly what that feels like, the first time I used it it was completely unsuccessful because I couldn’t hold it in. Have you attempted to control things with oral steroids yet? I ended up having to do that and change my entire treatment plan in order to get things under control. The steroid foam has been helping me so much now because my other symptoms like frequency and urgency have gone away thanks to those other medication’s.
Hi Rhiannon, I'm so sorry to hear you're a fellow IBD patient, but I hope you're staying healthy and feeling good! Crohn's is such a nasty disease and I know it can be really exhausting to be sick all the time. Hang in there!
Ok. I came here because there were almost no videos about this. This post was next to useless BTW. All the comments about how the snowflakes relate are beyond pathetic. I hope you hate on me for saying that it makes me happy. For those of you that are just wondering why, if this thing is so unusable, why your doctor prescribed it...I just went in my BR and used some common sense, push down a little on the receiver plunger so there is some light back pressure, the foam comes right out. It's really awkward trying to get that little tube in the right place but I read on my RX sheet you can put it on tissue, I did it the way I'm used to, with my finger. Stuff it AMAZING once it's in place. Something that never came up in this virtue signaling festival of support, it's instant relief! After all, isn't that the point?
