I remember when I was first diagnosed at 13 I couldn’t find anyone like you talking to casually about living with IBD or talking about experience with medication. Now at 21 I feel like this is healing my inner child hahaha. It’s so comforting to be able to see you talk about this medications, I’ve been incredibly nervous to use it and now I feel a lot more confident about it
Oh I’m so happy to hear you’re finding my content comforting! You’re definitely not alone, and I promise you’ll get the hang of it. It’s not very fun, but after a few times it’ll become routine and you won’t even need a mirror or special positioning anymore!
I commend you on your honest and open discussion of your illnesses, and I praise you for your music videos. Both subjects interest me, but the music is much more fun.
That was a great video Alice! Entertaining, as well as informative. You have a great sense of humor! Anyway, I have to have another Colonoscopy to check for polyps and cancer. They said with my family history, I was very susceptive to G.I. issues. So they are going to test 😕 Last year you really helped me to not be quite as afraid of it as I had been. I looked at your other channel, and that is awesome that you are a such an accomplished Violinist. A lot of our family went there!
I love your humor because we all need it when you suffer from one or the other or both especially someone like me who has a whole package of auto immune. Ulcerative colitis since I was 13 I’m 62 suffering with it on and off, but went into remission for seven years after years of steroids that’s all we had backed in way before your time. I did my last colonoscopy because I started to feel excruciating pain left sided and also in the small intestines, I couldn’t leave the house it was like déjà vu and bad memories but also a very bad and stressful year but that’s for another page lol. Long short I am living overseas in my doctor here wanted to put me in the hospital to put me on Humira won’t do it hard too many things that I’ve heard so I opted for the foam. I had to convince him not to put me in the hospital and let me just give this a try rectal steroid to help calm down the ulcerations. Watched the videos of how to use it. I’m on my third box which is roughly a month and a half. Haven’t talked to the doctor through the holidays yet but not sure where to go to yet even though it helped immensely in the beginning literally calmed everything down the rectal pain, the diarrhea all of it, and then out of the blue, I’m back running to the bathroom. I love watching, and I haven’t even gone through whatever prior you’ve done, but my sneaky suspicion is that between stress, and then trying to control my A1c with the gastric suicide of injections trulicity. it’s easier I protect my heart bring my A1c down or try to get my intestines to calm down. I’m just wondering if you were any of your followers have used the steroid foam. It says it typically is about a two month therapy 2 mg that comes out in each pump. I only do one a day they’re not cheap. I just don’t know where to go from here. It’s obvious now that I have both Crohn’s and ulcerative.😢 but anything you or anyone can share when you are in a flare that the doctor says is serious and that I could lose my intestines. I know a lot of it is emotional and I share that with everyone here who we’ve all been through some rough patches, 2023 was mine and 20 years before it. My diet I need to tweak. I fell off the bandwagon on it, but on these rectal foams which do you recommend or have used that are ongoing treatments, that can be inserted, directly rather than going through the system? Anything other than types of meds, like Humira, which shut the entire immune system down? Just love you. You’re a sweetie you’re funny and you care….. keep coming!!🎉
Hi Sophia! I’m so sorry to hear you’re struggling. My understanding is that all steroids, orally and rectally, are intended to be temporary treatments. I use the foam as needed if I’m feeling symptoms, but I didn’t find that it worked for me until my colon was more healed. If I used it during a flare, the foam didn’t do anything because I had to use the bathroom all the time so it never stayed in my body. I will say I am on multiple medications now that have saved my life and helped me reach remission. I started with Entyvio infusions which didn’t work but now am on Remicade infusions and I have my life back and am in endoscopic remission! I would strongly consider Humira or any other immunosuppressive therapies your doctor is recommending. Overall I think the pros far outweigh the benefits and whatever side effects you might experience are likely worth it if it means getting healthy and avoiding surgery 🥺 it’s scary but we have to just be brave unfortunately.
Thank you!!! You are such a sweetie. I was in remission for 8 years...never a flare, suddenly it hit with stress and COVID. I was also and am due to high a1c on shots that induced the flair more. I know my Dr. was upset as he wanted more of the treatments you mentioned. But considering that my insurance ( ended up after COVID and this flair getting stuck in Greece where my family is, the insurance that I have in place here will not cover it. I used to use Remicade years back as it was a rectal enema. After thyroid cancer and dealing with that thankfully the other stayed quiet. Those on Humira I know have a difficult time with it. Seeing that the flair calmed down with the foam and additional steroids (I have to be on them since I was diagnosed many years back and those were the only meds that could help. My adrenals are shot so I will always be on a small dose. But I did so well for so long after going to acupuncture and finding healing with the herbs my Dr there gave. My doctor Gastro here in Greece is not happy with me, he prefers I go to the hospital for IV meds. But you are spot on that the foam is more for helping once things calm down. They did, but suddenly after three weeks, I found myself running to the bathroom. But far less than before and no bleeding. It is hard to deal with here in Greece and I am not covered by my medicare US. So I have to deal as best I can with it and try to eat correctly! I will hope for the best! @@ChronicallyMusical
That was helpful. My colon was removed last year and im left with a 40cm rectal stump with UC that has been giving trouble. Doc just prescribed the foam till my next surgery to remove the rectum. I thought i used it wrong but seeing this i see there is a lot of foam that's made to cover the colon as well which would explain why i had a bunch of foam come back out under pressure. So that would be normal for my case.
Yes, sometimes! I have not entered a full blown flare since starting Remicade, but I have had some mild bleeding and increased inflammation here and there, and when that happens I do a short round of foam to get the bleeding under control before having to turn to something like oral steroids. It helps knock it out!
Thanks for your helpful instructional video and your humor with this touchy (lol) subject. I'm glad you reminded me to wash my hands first. I wouldn't want my hands contaminating my booty hole. Maybe we should be washing our hands afterwards instead of before. Lol
I never had pain in my rectum, just lots of bleeding. It didn’t help me when I was flaring but it really helps when I get little bouts of bleeding here and there.
