Видео

As mentioned in my video, these are studies I would be willing to take part in later in life, but as a woman at an age where growing my family is most important for me, I am not willing to sacrifice my priorities in life to submit my body to science when I have been enjoying a great quality of life with a seton placed.

I have not tried that! Will look into it xx

@@CCCC-TV 23 years and you didn't come across wormwood.

@@TreeOfWisdom2 nope! 🤷as a pediatric patient I grew up really only taking guidance from Western medication focused teams. In my adult life, plant medicine and alternative eastern medications are things that I have started to look further into and explore with. My journey is still going! I appreciate the tip :)

Another tip: daily vegetable broth from a slow cooker, bye bye disease. Don:t forget your daily wormwood tea.

Oh and combine as much as you can with cinnamon, cloves and ginger.

That's very interesting, i've never heard of that!! Definitely something i'd be willing to try if it was available to me.

@@CCCC-TV Yes, I think you should look into hyperbaric oxygen treatments. 2 atm of pressure is the same pressure as if you're 33 ft under water. Hemoglobin can only absorb so much oxygen. But under 2atm of pressure, oxygen is forced into your blood plasma. This oxygen travels throughout your body and enhances wound healing. In our case, we have wounded colons. -The next time I see my gastroenterologist, I intend to ask him if there are any clinical trials that use hyperbaric oxygen as part of a maintenance protocol. I would eventually like to wean myself off of inflectra because I'm a little concerned about the long term increase in cancer risks. Hyperbaric oxygen treatments, on the other hand, are very safe. Anyway, good luck! Take care!

Don't be scared!! The actual procedure is a breeze and will be over before you know it and greatly outweigh the risks of not doing one and having to deal with potentially scarier medical issues down the line. I wont lie the prep day is not fun, but again, will be over before you know it :)

Promise you will be fine , the prep is the hardest but the exam is not bad I just had one last month

Thanks for being here, glad you found my video! :) keeping a positive attitude has made all the difference for me!

Don't be nervous!! The prep is the worst part, the actual procedure (from my experience) is a breeze! I hope my video could provide some tips for you :) good luck!!

I get you!! Mine is tomorrow morning and last week I was in tears because I was so scared of the prep! 2 days ago I started drinking LOTS of water (10-12 cups a day) to hydrate my body. This morning I ate a light breakfast of plain toast, one egg, and black coffee with sugar. All days I’ve been drinking water, apple juice, and bone broth. Make sure you have enough unless you can send someone to the store. I also ate gummies (yellow and green) and ginger chews from Trader Joe’s. I mixed my prep with electrolyte water. Nothing flavored in case I didn’t like it. I chase each cold glass of prep with apple juice. I have no cramping at all and I have IBS so I was terrified of that. Tiffany, of the channel Nathan & Tiffany also has a great video called First Colonoscopy!

How did it go for you?! @@SJL07

@@CCCC-TVit went well. No nausea at all. I was hoping for a little more sleep since I started the prep earlier than suggested, but I woke up at 1:00 am with a headache and never fell back asleep so I started my second prep at 3:00 am. I took a short nap in the morning, took a shower, put on a little makeup and headed to the hospital. The procedure itself was so easy. The following day I still had some diarrhea and fatigue from the anesthesia so I just relaxed and did things around the house. You’re a champ, Chanel, for going through it so often! You have a good routine!

Absolutely! That part is actually my favorite if i'm being honest lol! The anesthesiologist will come introduce themselves and speak with you before they take you into the procedure room and give you a run down. Hopefully you'll get someone who is nice and personable. You'll have had an IV placed (thats where the propofol/fentanyl gets pumped into), and once in the room, they'll have you lay on your side. At that point you're basically looking right at the anesthesiologist and their equipment. Every doctor is different therefore my experiences going under have been different. I love when they make it "fun" and have you count down from 10 or see how long you can try to stay awake before you get sleepy. Even if the Dr doesnt vocalize this, I try to make it a game in my head (spoiler alert - you lose every time!) This last time specifically I remarked, "oh I can already feel something happening" as I began to get tingly then I was instantly out. Don't worry about coming out of it or staying awake, that's why the anesthesiologist is there the whole time to monitor you and make sure that you dont wake up. You'll usually either start to feel a cold or tingly sensation coming through the IV, then lights out. I would imagine that the more it scares you, the scarier the experience will be. I've been doing these since I was 7 years old, so I have learned not to fear it and just enjoy the lovely little nap you get out of it and look forward to waking up and eating! Hope this helps! xx

Good luck!! Don't be nervous! The worst part is the prep day, and it will be over very quickly so no use adding any extra stress on yourself if you can help it. The actual procedure is very quick, usually totally painless, and the meal you get to have after is the best. :) I have personally never tried the Ensure Pre Surgery drink but if it is within the rules of what you are able to have on prep day then definitely give it a try! <3

Woohoo Entyvio sisters!! I have also had a great experience on it to manage my UC, however it looks like ill be switching to Remicade soon due to the fistula I developed last year. Hopefully it works just as well! Thanks for your comment and all the great advice, i'm definitely going to keep in mind for the next time I have a colonoscopy!! The bidet made a huge difference with the soreness as well :)

I personally tend to get nauseous when I haven't eaten anything in a while. So that in addition to consuming a large amount of liquid that is bubbling in your stomach and purging you will usually make you quite nauseous!

Unfortunately I am not qualified to answer that question! Each fistula is so different and it completely depends on which muscles the fistula is going through to determine which surgery (if any) would provide the best success rate. I would recommend getting the advice of a colorectal surgeon if at all possible :)

Hi!! Thanks for being here. Was the surgery just to place the seton or did you have something else done as well? Is the pain still increasing daily? I've had some occasional sensitivity to the skin around the seton, but not what I would consider skin induration. I am so sorry you are having to deal with that!!

Thank you for your comment, I'm glad you are here! I have heard that horseshoe fistulas are quite complex and more difficult to repair so I am so sorry you have to deal with that. Have you discussed going on a biologic medication that can help manage fistulas with your doctor? Or considered living with a permanent seton (depending on location of your fistula)? Over even possibly participating in a clinical trial if able? I pray that you find the strength to keep on looking for the best solution that works for your life! This ailment we face is horrible but I hope that you can still find the beauty in life. <3

Thanks for being here, I'm so glad you found my channel! <3 I am so sorry that you are dealing with this though :( Do you have any preexisting IBD? Do you know the name of the surgery they are going to perform? That's what is so terrible about fistulas... I wish there was one foolproof surgical solution to repairing these things, but unfortunately there are so many factors that come in to play. That is why I found so much peace with my decision to just live with the seton permanently for now so I could grow my family and not have to worry about another surgery, see if its a success or failure, etc.

I’ll have to look more into that! I am currently working on growing my family before revisiting other surgical repair options, but would love the idea of visiting India in the future to try a laser repair!!

@@CCCC-TV yes think about laser operation. It has very successful rate. Less pain and heals very quickly like in 1 week. Not only in India but many other countries have laser options. Research on laser treatments.

I am sorry you are also living with a permanent seton. They certainly don't make our lives any easier do they? This is an unglamorous and insidious disease, but my intention through my videos is not only to bring awareness to others, but some hope and encouragement to those of us that are currently in the trenches! Hope you stick around <3

@@CCCC-TV does your fistula occasionally bleed a lot (like a lot) during bowel movements? I recently had a lot of blood pour out of my fistula/seton and it looked like a crime scene. Of course, I got terrified and went to the ER. Doctor said my blood test looked normal and that he wasn’t worried as long as the bleeding is not constant. Do you experience this?

I've had crime scene levels of blood often in my 23 years living with colitis (before being on Entyvio), but since developing the fistula there has only been one time where there was significant blood coming from it. It seemed to be related to stress, as I had experienced a very emotionally distressing day and the day following I was seeing a lot of blood. My disease manifests heavily with stress, so therapy has been very helpful for me! I also tend to see some blood on the gauze after days where I am more physically active than normal. Hopefully you were able to discuss with your CRS or GI regarding the blood. Unfortunately the ER doctors tend to not specialize in IBD so if they see a normal blood test and labs they don't have much more to go off of when there could still be an underlying problem.

@@CCCC-TV thanks for sharing your experience. I saw my surgeon today and he said as long as it’s less than 1 cup of blood, I shouldn’t be worried. He said sometimes the seton can strike a vein which can cause bleeding. I have a trans sphincteric fistula which is inoperable/curable which means my seton is permanent. If you don’t mind sharing what type of fistula do you have?

That's great that you got it checked by your surgeon. That makes sense about the seton striking a vein, but even half a cup of blood would totally freak me out! Do you still experience a lot of drainage from it as well? My fistula is intersphincteric and anterior. At this time there is not a surgery they can do that would make sense for the placement of mine because it would likely lead to incontinence. I chose to live with my seton permanently for now rather than doing the clinical trials so I could continue to grow my family :)

I am doing well! Currently living with a permanent seton and my GI will likely be switching my medication. Will be posting another update video soon :)

Thank you & good luck to you as well! This condition is not easy on us physically or mentally, so I am doing all that I can to remain positive :) Glad you found my channel and hope you find a safe community here.

Prayers and positivity to you in case you are going through the same thing! <3

Thank you so much! Happy New Year to you as well :)