Vedolizumab / Entyvio Infusion Day & Q&A

HEY GUYS!
Okay so this is my most requestion topic when it comes to videos so i thought id do an all in 1 vlog of my infusion to give you more of an insight to what happens and also a Q&A of my most asked questions regardin this treatment.
i really hope that i manage to cover most of your worries and concerns when it comes to it .
however if you have any other questions please dont hesitate to message me .
Thats what im here for :-)

[@mihirikmon703]

Thanks for making this video. I started Entyvio a little over 2 weeks ago. I just finished my second loading dose a couple days ago. I noticed results about a day and half after my first infusion. Now I go to the bathroom once or twice a day and it feels like I'm getting my life back. I was also on prednisone for about 3.5 months prior to my first infusion. I'm quite surprised and I hope this continues for a long long time.

[@ItsaHardCrohnsLife]

Oh wow!!! This is sooo amazing!!, and also that your responding to it so quickly aswell!, couldn't be happier for you!!, onwards and upwards!! 💪💪💜💜

[@sarmishtaburujupalli4153]

Hey, thank you for making videos on this ! Wanted to ask , after second dose being done, is it common to experience constipation ?

[@missfabiable]

Before i started my Entyvio infusion i remember whatching one of your videos that was about the side efects of Entyvio for you (non). I thanked you in that one and i want to thank you once more, since i was really scared and hearing that you felt no side effects really helped! i have no side effects either and since i starded my infusions i felt better and better. Thank you for that video, for this one and for all the tips and shared experiences because it really helps a LOT hearing others experiencies.

[@ItsaHardCrohnsLife]

Oh wow this is so amazing!!!, and makes me so happy to no that I helped you feel lots better about going for it. And even more happy that you are getting better and better. I am sending you a massive hug and long may it continue 😍😍💜 xxxx

[@jeffreypelosi8334]

It's a Hard Crohn's Life: Had my second infusion this morning and all went well. I've been feeling very good recently and hope to start weaning off the Budesonide soon. During today's infusion another patient came in to start his Entyvio. We started talking and he's been on Entyvio for 4 years now and thinks it is wonderful. He says he's suffered no side effects at all. :) I'm hoping you are continuing to do well yourself! Wishing you the best!

[@ItsaHardCrohnsLife]

This is so great, I'm so pleased, long may it continue in to remmision. The idea of it is scary but once you get the hang of it it becomes easier . Xxxx

[@jeffreypelosi8334]

It's a Hard Crohn's Life: Just an update: Had my second 8 week infusion this past Tuesday and I'm doing really well so far on Entyvio. I can't thank you enough for bringing it to my attention!! No side effects, and I'm starting to agree with you that it is indeed a game changer! :) Anyway, I'd like to wish you and yours a Very Happy Holiday Season!

[@ItsaHardCrohnsLife]

Oh Jeffrey this makes me very happy to hear, I'm so pleased, onwards and upwards , . Have an amazing Christmas 🎄 x

[@awfawf4546]

@@ItsaHardCrohnsLife Are you still on Entivyo? My Crohn's is in my small intestine, and I was curious if yours is also located in the TI as I heard it is harder to treat with Entivyo. Thinking of switching to Stelara.

[@jeffreypelosi8334]

Just wanted to say for all of us who suffer with Crohns/Colitus you are providing a wonderful public service by doing these videos! Now that I'm on day 5 of stopping Humira due to panic attacks and anxiety I'm now taking Budesonide in the interim. Thank you again for taking the time to do these videos! I wish you the very best!

[@ItsaHardCrohnsLife]

Ohh thankyou so much for such a lovely message!, that means alot, when I was diagnosed 9 years ago I only had professional help but not from real patients that are actually experiencing this disease, I'm very grateful for your message,were all in this together not alone 💜 x

[@silverphoenix1418]

❤ all your videos and channel and you explain everything so nicely and clearly. I started Adelemumab on 14.03.23 and now taking 40mg (1 syringe -pen) every other week on Thursday. I was trained to self-inject by Sciensus Nurses. Only now, my Crohn's is beginning to feel some benefits. My flare ups are slower and less bleeding .My rheumatoid arthritis hurts less .I am looking forward to my next dose later this morning .Currently waiting for a power cut to end then sleeping .I could listen all day to your talks on IBD. Thank you very much indeed 🙂

[@jeffreypelosi8334]

It's a Hard Crohn's Life: Today was my final load infusion. Now I'll be doing the infusion every 7 weeks from here on out. Looking forward to getting off the steroid I've been taking. Infusion nurse says on average it takes about 3 months for one to see the benefits of Entyvio. Wishing you continued health and the best! Again, thank you for doing these valuable videos for the community!

[@ItsaHardCrohnsLife]

Oh that's amazing, the garden bit is now out of the way and they will only take 1/2 hour now 👌😊, I am really hoping it works for you, all the best 🤞

[@joec2442]

Very helpful as I’m starting next week

[@ItsaHardCrohnsLife]

Oh great, I'm so pleased you found it helpful, good luck for next week, do let me no your progress x

[@stephaniecarrillo2589]

Thank you for this moral support. I am starting on Wednesday December 16. I am nervous but hopeful. Can you tell me how you are doing nowadays?

[@dajiarobinson3652]

Thank you for sharing your experience. I have UC and i start my infusions in a couple days. This has made a huge impact to my feeling going into it. I will update ❤️😊

[@ItsaHardCrohnsLife]

You are so welcome!!! Best of luck xx

[@bauchlefashion5206]

This video is great 👍 and truly answered all the right questions. I have had Crohn’s since I was diagnosed in 2007. I am also currently on steroids and I’m having my third dose soon. I hope after that or at least 5-6 you mentioned previously to me it starts to work. This is unrelated but I love your shirt so much 😊

[@ItsaHardCrohnsLife]

Massive good vibes and best wishes for your next one!!, ahh thankyou its from NewLook 😍 xxx

[@jeffreypelosi8334]

It's a Hard Crohn's Life: Good news! I just found out I've been approved for Entyvio. :) I will be getting the infusions done at my doctor's office to keep things in network.

[@ItsaHardCrohnsLife]

Ohh that's amazing news!!, I really hope it works for you like it has for me. Do let me no x

[@jeffreypelosi8334]

@@ItsaHardCrohnsLife : Thanks, I'll keep you posted.

[@jeffreypelosi8334]

Just set up my first 3 infusion dates. I will start on Sept 11th, Sept 24, and Oct 23rd unless the doctor tells her he doesn't want to wait that long. I asked the nurse about Benadryl and she said she could give it to me but that none of her other Entyvio patients have required it due to the side effects being so minimal. What do you advise since we both had that terrible reaction to Humira?

[@ItsaHardCrohnsLife]

@@jeffreypelosi8334 I definitely would say not to go for benadryl because my view is if your body is rejecting it then you want to no about it, if you no what I mean. Remember this treatment is only gut specific and doesn't work on inflammation around your whole body which is why its unlikely that you will get a reaction. Such good news that you have your dates, do keep me posted on your progress 💜😊

[@jeffreypelosi8334]

@@ItsaHardCrohnsLife Thanks for the advice, it makes perfect sense. :)

[@robb6996]

Thank you for this video. My first infusion is this week

[@wallc777]

Thank you for this!! Im going for my 3rd infusion on the 14th of September and already have drastically improved. I felt it after the 2nd infusion for my moderate Ulcerative colitis

[@Frauleingruen]

Thank you so much for this video. My next one is on monday. Mine needed like 8 infusions to work but now it gets better and better every time (with some flare ups sometimes) and i can hopefully put down my steroids soon. Only thing that bugs me, is that the infusion takes a lot of time for me ( 1h infusion and sometimes 1 h waiting) every 4 weeks and feeling quite sick one day after... and yes i can approve the thing with the hayfever🙈 Love and greetings from Germany my dear🤗☺

[@ItsaHardCrohnsLife]

Hello there, so glad it gets better each time, .I wonder why it takes longer than the usual time? Xx

[@Frauleingruen]

Oh thank you for your comment. I think i've got a quite hard case of ulcerative colitis (explains why i had to test out so many Medicines before). But i'm so happy it gets better and better every time, although i can "feel" when the 4 weeks are over (more blood and pain). But hey i get's better ;) Also it's wonderful to hear that entyvio works so great for you. Thank you so much for your channel and your tips for handling the disease. Food and the psyche have so much impact and your tips are completing my knowledge and also my bodypositivity 🤗✌

[@loubeddoe4086]

Thank you for sharing your experience of vedolizumab infusions... I'm due to have my first one in the next couple of weeks... eek.... I'm like you, a worrier... but this has helped to see how straight forward it looks... I know this video was a while a go.. but I've been told that if I respond OK to the med, I can move on to injections if I want... so, they obviously offer them now... nor sure how I feel about self injecting though...😬 Thanks again for the video and I hope you're still doing ok... 😀

[@ItsaHardCrohnsLife]

Thankyou for your lovely message, you are more than welcome, my nurse said to me that in all the years that she has been doing this infusion she has never had anyone have a reaction to it which it so good to no aswell. I think that if you was to have the injection form eventually they are kind of like a pen which makes it so much easier . I’m toying with the idea of changing to injection form but I’m not so sure as I quite like the chill time child free at my appointments at the moment 😃 haha!!. I hope it all goes well for you! Keep me updated on how it goes , xxx

[@loubeddoe4086]

@@ItsaHardCrohnsLife Thank you for your reply...My nurse did say that the injections aren't always as effective... especially if you're a little over weight... which I am..( months of steroids does that, doesnt it?!) So, will depend on if I lose weight first i think... but just focusing on getting through the first 3 infusions first and go from there.. it must be difficult coping with the illness with a little one... I admire you for that!! I have UC, so slightly different but very debilitating at times as I'm sure you're aware as crohns can be too... 😔 But I'm feeling optimistic about starting vedo... been ill for months now... so, looking forward to hopefully getting myself sorted... thanks again... you take care.. x

[@madalynsoto5134]

So I’ve recently been diagnosed with Crohn’s disease about 4 weeks ago, I had to be in the hospital for two weeks but now I’ve been home for about two weeks and I just really need help with finding out what foods to eat, like snacks especially 😩! Please make a video on what you eat in a day or just snack ideas for people with Crohn’s

[@ItsaHardCrohnsLife]

Hiya! I'm sorry you have been so unwell, I'm glad your back home now , I sure can that will be no problem at all, if you have any questions that any of my other videos do not cover always ask 😘 xx

[@melaniebayer8924]

It absolutely worked wonders for me. After one week I felt a 180 degree turn in my health situation

[@kentcastil4791]

Hi ma'am, thank you for sharing your experience on entyvio.. i'v just finished my 2nd dose of entyvio last 4 days ago and im very hopeful that im going to feel much better soon. For now im on prednisone and hopefuly soon il stop taking it coz it makes me dizzy every morning. I wish and pray that entyvio will be a life changer.🙂

[@flmoseley8141]

Im glad the drug is working for you but thus far ive had a different experience. I had my first infusion just 6 days ago. Everything went perfectly and it took about 30 minutes. Later that night I still was thankful how well it went. Then about 3 am in the morning I began to get a tremendous pressure in my chest and feeling like the blood squeezed right out of my head. Sorta like hitting that thing called poppers or rush that kids do. My eyesight started dimming and i felt like my throat was closing then it backed off but came back at me in waves. I thought I was having a heart attack and dying. I was taken by ambulance to hospital and they concluded it was reaction to entyvio. Since that night it hasnt happen again but ive had intermittent facial and hand tingling ever since. It has not helped my symptoms and today i woke up shivering like a cold was coming on me. I will see my doc this week determining if i should take the second dose. These drugs can be deadly and effect any of us at anytime during course of treatment. The scary part is it can be hours or days till you have a reaction.

[@lola18704]

So sorry this happened

[@lola18704]

How are you doing now?

[@andreafarland9680]

I had my first infusion today feeling weird tonight like flu like symptoms which she warned me about and heart beating fast joints throbbing. I have to quit remicade because I had an allergic reaction to that. today went a little better than that but I guess time will tell that is scary that you had a late night reaction. how is everything going now?

[@flmoseley8141]

@@andreafarland9680 I was put on remicaid and outside of having a recurring cold I felt like it was helping. They took me off it after a colonoscopy cause he said it didnt appear to be helping but it had only been 4 infusions. So they took me off remicaid and put me on humira which made my blood pressure sky rocket. So they put me back on remicaid and I've done the loading doses again. No frequent cold this time and it seems to be working. At least I can eat again.

[@MK-dg4be]

Did the doctor tell you why you had such a reaction?

[@K8james]

Have u thought of live streaming hun,there loads that do it on hear now spreading awareness meet people inn the community with crohns etc , fab vid xx

[@ItsaHardCrohnsLife]

No I I haven't but that's a good idea, I will look in to it for sure ,thankyou 💜💜😘😘

[@jeffreypelosi8334]

It's a Hard Crohn's Life: Just an quick update: This Wednesday morning I'll be getting my first Entyvio infusion at my doctor's office. Here's hoping! :) For the last 6 weeks I've been doing good on Budesonide which always takes about 2 weeks to kick in with me so I've been on it 2 months.Since it is a steroid the doc doesn't want me to use it for more then 3 continuous months. Hope you are well!

[@ItsaHardCrohnsLife]

Aw I hope it all goes well for Wednesday, please let me novhow your first one goes when you are back home and it's all done n dusted xx

[@jeffreypelosi8334]

@@ItsaHardCrohnsLife : New update! This morning's Entyvio infusion went fine! :) My next appointment will be on the 24th of this month. Here's hoping! :)

[@ItsaHardCrohnsLife]

@@jeffreypelosi8334 oh that's great!!, I new you would be fine, you have tackled the hard bit now ,roll on the next one, and keeping fingers crossed it starts to do its job asap for you x

[@jeffreypelosi8334]

@@ItsaHardCrohnsLife Thank you!

[@silverphoenix1418]

Just want to say a big thank you for your videos. I've just passed my Induction of the first three doses on Vedolazimub (hope I spelt it right!). My first was on 21.08.19. Then after two weeks etc...My next is my fourth and after eight weeks. The best news is that I have not had a SINGLE flare-up and off the steroids since around 21.10.19. It's the biggest breakthrough for me and I want to give the credit to you for inspiring me as I believe our stories are literally identical. I also have the same smoothies in the morning and am a vegan. It just turned out that way. I have Alpro milk and vegan cheese spread and of course the quorn products, coupled with chickpeas, red kidney beans. white rice, white bread (all bland foods). Warm water also helps. I was wondering that are sips of warm water better than sips of cold water? I have the cold water with my Mezavant and other medications. Thanks again. :-)

[@ItsaHardCrohnsLife]

Awww I cannot tell you how happy this makes me, It really does feel like you have finally found the one for you also yayyyy!!!. I definitely find warm water helps but as long as it's not ice cold like room temperature I always find is okay. Thankyou so much for your lovely message I'm so pleased that my content has helped you 💜💜. Long may remmision continue 💪💪 xxxxxx

[@nenorra50]

Hi Im forma México I have a question do u use antibiotics previous or durante the treatment ? Thanks for your video,grettings!

[@andreafarland9680]

thanks for the info 🤍i just had my first treatment

[@ItsaHardCrohnsLife]

I hope it works for you like it has for me, I will keep my fingers crossed for you 🤞🏼🤞🏼

[@Suesoulsister]

I have active crhons diseaae and am on my started dose package still go for my 3rd infusion next week ..I am hoping it starts to work after that 3rd infusion.,because im still not getting no relief yet .How many times was it before you started to feel it working? I have had crohns since 2009 and remicade infusion was the best till i became immune to them and many other shots for crhons .I was writing this as watching your video just heard you say after your 5th infusion it started helping .Well im a new sub so i will follow your journey .😚🤗

[@ItsaHardCrohnsLife]

Awww hello thankyou for watching I'm am keeping my fingers and toes crossed it starts kicking in soon, .. do keep me updated on your progress 💜💜

[@Suesoulsister]

@@ItsaHardCrohnsLife thank you 💛

[@DRFOODITALIA]

I don't know why it isn't working for me!

[@nikolaospeterson2495]

Technically from what I have heard this would be within the ade range of 18 to 80. I am just one year shy (17). M paediatric gastroenterologisyt along with my team did capitulate and allow me to try vedolizumab (Entyvio) rather early. Before I was on infliximab (Remicade) and Natalizumab (very shrt for this as Vedo had just cane out. I had thought that it was non=parenteric and oral. But I must say that on other YT vids I have heard other GI specialists state that home injections are currently being tried out, or now (2020) being currently on the market. Qhat my question is that have there been studies to maje this available oraly such as a capsule or tablet? This would make this even easier to administer. Wgat are aour thoughts or jbowledge in regard to this I gave gad CD since I was ten, some 7tears ago. Thanks I am or hopefully past tense gad written this during the SARS CoV 2 pandemic.

[@MsTiggerfeet]

I'm just starting entyvio little nervous but I hope it works.

[@kentcastil4791]

Hi im from philippines.. Does my neuropathy, numbness and tingling sensation in my body will go away when im in remission? I just finished my 2nd infusion few days ago. Im hoping to achieved remission soon.

[@mladena]

Vf