J Pouch Surgery-2 years out!-Diet & Supplements
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- เผยแพร่เมื่อ 19 ก.ย. 2024
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Hey guys! Sorry it’s been so long since I’ve Done a video!
I’m officially 2 years and 1 month out from Surgery! So I’ve Done a video for ya’ll regarding diet and supplements and what has worked for me!
Feel free to comment or email anytime!
Here are the products I've mentioned:
Collagen Hydrolysate:
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Liquid Vitamin (Women):
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Daily Vitamin (Men)
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Liquid Iron Supplement:
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JarroSil for Joints:
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Olive Leaf Extract:
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At Home Bidet:
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Travel Bidet:
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** I am not a doctor and the statements in this video are of opinion only
Thank you for opening up about your story. I've had my j pouch since 2002 and I still struggle with a lot of anxiety and symptom management. Your videos are inspiring; I live in a rural area with little support, and I love your leadership!
congerzak1 you’re so very welcome!!!! 💗💗💗
KuyyQ
I’m closing in on 35 years as one of the first recipients of the J Pouch operation, been a hard ride !
WoW. My Dad was considered in the statistics. 6 generations back has been hit with Gardner's Syndrome. I'm 29 yrs and still wake up to a mess ☺️
Yes girl!! Everyone who isn’t a cow is lactose intolerant. So nice to see that some people recognize that this contributes to IBS/crohns/colitis
I am totally in agreement on keeping a food journal to find foods and liquids that exacerbate your output. However, I would like to recommend going one more step and write down, not only what you eat, but how it was prepared. Preparation can be as big of a problem as the food itself. For instance I can eat french fries that are baked in the oven but not deep fried.
Thanks alot Rosie for clarifying dietary options/"No No's" . I've been a J-poucher since 2011 I still find it hard to filter out what has caused a high frequency day when you are eating multiple things during the day. I love almonds periodically & almond milk with cereal but now realize that may have been the culprit on my bad days. Thanks for all of your great work, sharing & positivity !
CT B you’re welcome! I’m so glad to help!!
@@rosierosehealth3138 It's interesting when going on jpouch.org too there's sometimes somethings people can to prevent the problems with butt burn, maybe not within the first year as some do find that the body will adjust to it, but then others don't (not sure myself why it doesnt sort itself out) there's a few things people can take to help prevent especially if its particularly bad without even needing any cream barriers as such.
There's a great one I've found from that forum of people with an Ileo Pouch is really a great resource, also then the things like fibre suppliments (soluble though as its that which helps bulk things up as such) and big time don't always listen to a doctors is a big thing I've found myself all around really :)
For helping stopping the actually alkali based stools as such which is what it quite essentially is, there's things like pepto bismol I think its called sometimes works for some, its to prevent it from yeah eroding skin tissue when it comes out of the anus quite essentially again, like if there's some tears inside the anus (which can cause fissures) that becomes hugely painful, it's like using salt on an open wound its just hugely painful and respect anyone that has problems with that, I have myself but as I am in the adjustment phase still holding back from doing much about it other than really using an upturned shower head after I go to the toilet and then using something like usually an emollient cream as it'll probably dry out which will make it crack and it'll then cause stinging.
A typical in the US I think fibre suppliment of course being Metamucil does have a generic name begins with a P but Metamucil itself is hugely expensive over here in the UK, so using a generic form is a heck of a lot cheaper like our own individual brands, it's quite essentially or they are branded seperately as such, doesn't always work but think there's about three different forms that other ones may work for some people. Do find this whole thing really interesting (alaki is probably a better term for that ph scale, you want to be trying to either get the body to adjust itself to as neutral as possible when it comes out, thats what the large bowel would have done, but since you don't have that thats where the problem comes from).
This may explain it better than what I am doing here lol jpouch.org home > Forums > J-Pouch Forums > General Discussion > Butt Burn it has this post here:
"I was told that butt burn is due to excessive alkalinity in the stool after removal of the colon. The body either adjusts well or not over time. To treat the problem you must identify the problem. I don’t think it’s diet. It’s likely excessive alkalinity in the stool. Have a pH test done on the stool. Then you will have your answer and can treat accordingly. You gotta remove guessing and speculation from the equation, which is what I am hearing here. Let science tell you what’s going on. " Shame I can't directly link it to be fair but its exactly what a user on there said (is essentially almost what I said myself but then they went into more of how the body adjust to it sometimes with some over time, like I am leaving it as such the way it is with me since adjusting it by using a medication might hinder my body from adjusting so it'd prolong the time it'd ake to naturally adjust as such).
Also there's this huge myth going around well with most of us I'd have thought (I knew this when reading the prescription label on the product itself) when my skins particularly bad I never use ordinary like shower gels or anything of that sort I use what I have been prescribed with which is called Cetraben (there's others of the same kind like a common one being called Oilatum but that tends to be quite expensive if bought privately here they're called really as a replacement for showergels and soaps called Soap Substitutes but it rarely happens now anyway.
Try adding to your food journal how the food was prepared. I can eat french fries that have been baked in the oven but not deep fried. Sometimes preparation is the key not just the food.
Alcohol can make you runny as well. Having had a j pouch for 20 years I can recommend using a Wellspect healthcare Ileostomy catheter. Certainly helps with the butt burn.
lol I chuckled when you said "FAP" the way you did. I'm glad that you're still doing well. I've had my j pouch since November 2017. And I've had pouchitis ever since. I'm on a daily dose of antibiotics which makes my life livable. I was going 30 times a day before. (Pure misery) It feels like Im back to my UC days minus the blood 😞. Hopefully I can get off the antibiotics and finally be "normal". Anyways, I hope you continue to get better and stronger. Happy 2 year pouchiversary!!! 😉😃😘
Gutsy Talk I just have my j pouch 2 months ago and my body still hasn’t adapted to the j pouch im still having stomach cramps and still have a lot of pain where my stoma was how long did it take you to adapt to your pouch
Yacir Torres after my j pouch surgery I had to be hospitalized twice because of severe pouchitis. Eventually my surgeon diagnosed me with chronic pouchitis and I now take flagyl antibiotic everyday since February. As far as adapting and stoma pain, it took me about 3 months to fully adapt to the pouch. And the pain and scar where the stoma was can take a long time to heal. It's been 7 months for me and it's just starting to fully heal. Just remember as time goes on you will get more better and normal. I'd say give it at least a year to fully heal, but you should fully adapt after a few months. Let me know if you have anymore questions. Take care friend 😃
Gutsy Talk thanks I really needed to talk to someone about it I’m having a hard time recovering.
Yacir Torres no problem man. I'm happy to help and answer any questions you may have. I was also scared and confused after my surgery.
Gutsy Talk Hi Gutsy sorry to bother you again but I’m having a hard time recovering from my last surgery it’s been 4 months already.im having some issues. I’m having butt burn so badly and the part where my stoma was still in pain. Did you had the same issues after last surgery and if you did after how long did they went away
Why on earth does the US still live in the Dark Ages? Here in Italy we've had bidets since Roman times - let's be honest, especially us ladies need one on a daily basis... and what happens during "that time of the month"?! Horrendous!
💯 💯
I've had pouchitis ever since I had the takedown. I go 6-8 times on a good day. I'm on a life long dose of antibiotics and it's annoying. I've also been diagnosed with PSC a liver disease and I've heard a lot of j pouchers get it.
I’m curious to know what you regularly eat and what you never eat (and drink as well).
❤️
Ppp9
Can't believe your doctor told you to eat nuts. There is a list of foods j pouchers in the uk are told to avoid and nuts are right at the top.
How many times you go to the loo. I was told it is 10 to 15 times in 24 hours. Is this compatible with normal life
Great 👍
Hi Rosie, how did you find out about the olive leaves extract working to minimize the risks of getting pouchitis?
Yacir Torres hi!
I used to take it when I had Ulcerative Colitis. I read a lot on it and found from other people that it helps to minimize my bleeding. But I also discovered that it’s a natural antibiotic. I was sooo terrified before my surgery..that if I get I get a jpouch that I would possibly suffer with pouchitis. I read so many horror stories about pouchitis and how people would have to be on antibiotics permanently. I didn’t want that. So, since I already had olive leaf extract at home..I decided to take it everyday just in case. I have not had pouchitis yet. Hopefully won’t.
Rosie Rose thanks I will try it I had my pouch 3 months ago and my body is having a hard time adapting to my j pouch im having stomach cramp and the part where my stoma was still in pain. But what it bother me the most is the sensation of going to the bathroom i don’t kwow if you experienced those issues how long did take you to adapt to your pouch
What's your opinion on Vegan diet? My kids have been for a year and I'm eating with them more.
I think or more kind of relatively adamant almost (it can vary though I'll hazard guess) that pouchitis commonly (especially if its early on and when treated it goes away and eventually or immediately it never comes back, is primarily due to the immune system being rather confused, suddenly you've got this organ thats being used in a way thats not meant to be like that (thus or hence the other problems its like retraining your bowel effectively kind of which can take a rather long time to finish sometimes it may never completely finish it depends. It's really inflammation of the lining of the pouch is what pouchitis really is.
What is back wash
I got my J pouch 15 months ago and still have bad days. I don't eat breakfast or lunch so that way I won't use bathroom that much during work. It's been tough
Jerry Rice . Hi Jerry, I’ve had a j pouch for 32 years.. Had the colectomy at age 26 and j pouch couple of years later. Now been without a colon longer than with one. I had problems with fistula for a while but past that now pretty much. Keeping the anastomoses open is the secret so that you can empty the pouch easily and completely before work. I have a tapered plastic instrument that I insert every couple of weeks to stretch the anastomoses. I eat my evening meal at least 12 hours before I rise in the morning, paralyse my bowels with Imodium after I empty my pouch in the morning, and eat sparingly during the day.
@@mitseraffej5812 What’s the plastic tapered instrument you use for keeping the anastomoses open?
@@mrtinku-labradorbeaglemix5223 Not sure what it is called, a surgeon gave it to me. It’s about 4 inches long and maybe 3/4 inch diameter at widest point. I think it is purpose designed for this so I guess a colorectal surgeon could get you one.
Bui
Hi✋✋✋✋✋✋✋✋✋✋✋✋✋✋
That amount of talking felt a
Bit intense