Thanks for the upload, & sharing your journey. It’s very helpful to me, I’m waiting to have a permanent ileostomy, no J-pouch for me or any other options. What I would like to point out is how healthy you’re looking in this video, it’s certainly made all the difference. For me I’m having to spend 24 hours a day in bed with immense fatigue and pain, I can’t wait to get my life back. You have given me hope & faith and eased any worries I have, so thank you 🙏 ❤ and congrats for getting where you are, it’s not easygoing that I can see 😅🎉
Hey Alison! Thank you for the kind words about the videos! :) I really do enjoy hearing back from people who are benefiting from them! As I said in the video, I don't regret ANYTHING about my decision...there is no pain, no bleeding, no cramping, and NO urgency! I have "gently" started back on salads/greens very recently w/ no issues! I'll send you some positive energy to help you with your decision...whatever it happens to be....:)! Please keep me posted! :)
This has been incredibly help (and hope)ful. I am making the decision in the next few weeks on if I am going to have the surgery. I just want my life back and to be able to eat normal food. I assume the pain of your new movements is non existent or less then before the surgery? and you ate something green! Congrats - I havent in 3 years and I just want a bloody salad. Your videos have helped me get through some worrying times recently... thank you
I really appreciate the candor! I had this surgery about 8 weeks ago, so the information is highly appreciated. My experience so far is pretty similar to yours. If I don't eat after 5pm or so, take a couple of imodiums, and set an alarm for 1:45am so I can get up once in the middle of the night, I've eliminated most of my middle-of-the-night accidents, but it'll be awhile before I have the confidence to not wear a pull-up. A little bit humiliating, but still probably much better than having the ileostomy.
Hey John! Emptying the Jpouch is just like going to the bathroom the "regular" way. Initially, when I was taking a lot of Immodium, it was making the stool more formed/firmer so I would say I felt like I had to "wiggle" my butt around on the seat a little to make sure I felt like I had emptied completely. Being 3 months out and NOT taking Immodium, I never feel like I haven't emptied completely.
Your video is so instructive and explained so nice . Enjoyed it .. thanks so much I’m seeing this video as I’ll be to the process soon and I have heard horror stories but I don’t want permanent bag right now ., want to try my options so thank you
Hey XAtina1999! Congratulations for making it through to the other side! It's nice to be done with the hospitals/surgeries, eh? So glad that you're doing "very well"...that's saying A LOT for 1 week out! :)
I don't take psyllium at all. I'm going about 7-8x/day, sometimes formed pieces, sometimes like "saw dust" depending on what I eat. I'm still getting gas a lot, which I can't pass "alone" so I'm afraid the psyllium will make me more gassy but I might experiement with it down the road. I stopped the Immodium as I was feeling like I was having to strain to completely empty my Jpouch.
So just spent six days in hospital. Enlarged liver, low iron, inflammation markers out the roof etc so it has made my decision for me.. I'm going for the surgery. Talking with the dr to organize final details on tues.. So will probably have lots of questions on wed.!
The other technique is when staples are used. According to my surgeon, when the staple technique is used, there is still a little bit of rectal tissue left that can develop colon cancer. Since I also have the liver dx of PSC, my incidence of colon cancer is even higher than just having the UC so I opted to have him remove ALL of the rectal tissue.
I have to get mine in reversed due to wgt. loss and pouchitis---I am 64 and it worked well for most of the time, for the past 4 months it has not worked well
Hey, in a few weeks I should be on the transplant list for my psd and I've also had an ostomy for a year. The original plan for me was to have a jpouch but the PSC flared up so it was a no go. I was just wondering if you had any input on getting a pouch after a transplant? Thanks
Ollie Avis Hey Ollie! Sorry so long to get back to you...:(. I don't remember anything specific enough to repeat about getting a Jpouch AFTER a liver transplant or if it's even an option. Guess it's a good question for your Hep or GI?
Do you take psyllium husk at all? I've been taking it since week two. It helps thicken my output a lot. There are times when my output is completely liquid, too, but it's usually due to stress. I've also been taking lomotil since I've been in the hospital. I'm not really sure if it's benefiting me at this point, so I think I'll have to experiment not taking it.
In addition of course to all of the medical issues and feeling like crap, I think one of the hardest parts of all of this IS the decision! Coming to terms with the fact that you need to have part of your body removed, knowing that there are risks, and knowing that your life will be changed PERMANENTLY isn't easy but once you KNOW that is the route you're going, it sort of lets your mind "relax" into to it a little...at least did for me! Feel free to use my email...ucandpsc@gmail.com.
What did you use for a skin irritation and itch I was diagnosed with UC a year ago had a colectomy to ostomy bags and the reversal in December still going over 15 times a day taking a modem and Lomotilany recommendations
Ryan, at roughly the 7:20 mark he mentions having great success using Calmoseptine, which is a general purpose ointment that is available everywhere. $7 for a 4oz tube on Amazon.
Hey Ryan! Sorry so long to respond ( I feel like I say that a LOT on here...LOL!) But the comment below is correct...CALMOSEPTINE worked WONDERS for me with skin healing and to calm the itch!!
Hey AMBER!!! :) VERY good to hear from you! I AM doing well...hence the reason for no new video...LOL! I keep telling myself AND others that I NEED to make AT LEAST 1 more updated video to sort of have an official "sign-off" but you can see that hasn't worked out yet...LOL! How are YOU doing?? Jay :)
Glad to hear!!! I am well. Tried doing Whole30 recently which was difficult with an ostomy, but I'm taking some supplements that help with digestion and it's all evening out. Would love to see a final vid with updates! ;) Take care!
Elda B Hey Elda! I HAD an external ostomy bag for 7 months but then I had an INTERNAL pouch created out of my small intestine (J-pouch) so I no longer have an external bag. I go to the bathroom "normally" on the toilet albeit more frequently.
Omg I hope you are doing better! I have serious colon problems , 3 surgeries and other procedures, and I'm trying to save my colon in a natural way, I will start with a very strong probiotics way to do it because taking 3 capsules a day of colon health is helping a lot, so Vsl#3 I heard is very good , my order is arriving tomorrow, I am hopeful is hoin to work, crossing my fingers ( and eating healthy!) I feel very proud of you and I pray for you to have a long and happy life after all this what happened to you! Thank you for answering!
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Thanks for the upload, & sharing your journey. It’s very helpful to me, I’m waiting to have a permanent ileostomy, no J-pouch for me or any other options. What I would like to point out is how healthy you’re looking in this video, it’s certainly made all the difference. For me I’m having to spend 24 hours a day in bed with immense fatigue and pain, I can’t wait to get my life back. You have given me hope & faith and eased any worries I have, so thank you 🙏 ❤ and congrats for getting where you are, it’s not easygoing that I can see 😅🎉
Thank you for sharing and being so open and informative. I'm considering this procedure if my current biological treatments do not work.
Hey Alison! Thank you for the kind words about the videos! :) I really do enjoy hearing back from people who are benefiting from them! As I said in the video, I don't regret ANYTHING about my decision...there is no pain, no bleeding, no cramping, and NO urgency! I have "gently" started back on salads/greens very recently w/ no issues! I'll send you some positive energy to help you with your decision...whatever it happens to be....:)! Please keep me posted! :)
I have a j pouch and I'm in pain all the time stupidest thing I ever did
This has been incredibly help (and hope)ful. I am making the decision in the next few weeks on if I am going to have the surgery. I just want my life back and to be able to eat normal food. I assume the pain of your new movements is non existent or less then before the surgery? and you ate something green! Congrats - I havent in 3 years and I just want a bloody salad. Your videos have helped me get through some worrying times recently... thank you
I really appreciate the candor! I had this surgery about 8 weeks ago, so the information is highly appreciated. My experience so far is pretty similar to yours. If I don't eat after 5pm or so, take a couple of imodiums, and set an alarm for 1:45am so I can get up once in the middle of the night, I've eliminated most of my middle-of-the-night accidents, but it'll be awhile before I have the confidence to not wear a pull-up. A little bit humiliating, but still probably much better than having the ileostomy.
Hey John! Emptying the Jpouch is just like going to the bathroom the "regular" way. Initially, when I was taking a lot of Immodium, it was making the stool more formed/firmer so I would say I felt like I had to "wiggle" my butt around on the seat a little to make sure I felt like I had emptied completely. Being 3 months out and NOT taking Immodium, I never feel like I haven't emptied completely.
Your video is so instructive and explained so nice . Enjoyed it .. thanks so much I’m seeing this video as I’ll be to the process soon and I have heard horror stories but I don’t want permanent bag right now ., want to try my options so thank you
Thanks for sharing man, much appreciated.
And now after 7 years?? Thank you for doing this!
Hey XAtina1999! Congratulations for making it through to the other side! It's nice to be done with the hospitals/surgeries, eh? So glad that you're doing "very well"...that's saying A LOT for 1 week out! :)
I don't take psyllium at all. I'm going about 7-8x/day, sometimes formed pieces, sometimes like "saw dust" depending on what I eat. I'm still getting gas a lot, which I can't pass "alone" so I'm afraid the psyllium will make me more gassy but I might experiement with it down the road. I stopped the Immodium as I was feeling like I was having to strain to completely empty my Jpouch.
So just spent six days in hospital. Enlarged liver, low iron, inflammation markers out the roof etc so it has made my decision for me.. I'm going for the surgery. Talking with the dr to organize final details on tues.. So will probably have lots of questions on wed.!
The other technique is when staples are used. According to my surgeon, when the staple technique is used, there is still a little bit of rectal tissue left that can develop colon cancer. Since I also have the liver dx of PSC, my incidence of colon cancer is even higher than just having the UC so I opted to have him remove ALL of the rectal tissue.
I have to get mine in reversed due to wgt. loss and pouchitis---I am 64 and it worked well for most of the time, for the past 4 months it has not worked well
Hey, in a few weeks I should be on the transplant list for my psd and I've also had an ostomy for a year. The original plan for me was to have a jpouch but the PSC flared up so it was a no go. I was just wondering if you had any input on getting a pouch after a transplant? Thanks
Ollie Avis Hey Ollie! Sorry so long to get back to you...:(. I don't remember anything specific enough to repeat about getting a Jpouch AFTER a liver transplant or if it's even an option. Guess it's a good question for your Hep or GI?
I heard almonds are bad but rice milk might be ok.
Do you take psyllium husk at all? I've been taking it since week two. It helps thicken my output a lot. There are times when my output is completely liquid, too, but it's usually due to stress. I've also been taking lomotil since I've been in the hospital. I'm not really sure if it's benefiting me at this point, so I think I'll have to experiment not taking it.
In addition of course to all of the medical issues and feeling like crap, I think one of the hardest parts of all of this IS the decision! Coming to terms with the fact that you need to have part of your body removed, knowing that there are risks, and knowing that your life will be changed PERMANENTLY isn't easy but once you KNOW that is the route you're going, it sort of lets your mind "relax" into to it a little...at least did for me! Feel free to use my email...ucandpsc@gmail.com.
What did you use for a skin irritation and itch I was diagnosed with UC a year ago had a colectomy to ostomy bags and the reversal in December still going over 15 times a day taking a modem and Lomotilany recommendations
Ryan, at roughly the 7:20 mark he mentions having great success using Calmoseptine, which is a general purpose ointment that is available everywhere.
$7 for a 4oz tube on Amazon.
Hey Ryan! Sorry so long to respond ( I feel like I say that a LOT on here...LOL!)
But the comment below is correct...CALMOSEPTINE worked WONDERS for me with skin healing and to calm the itch!!
How’s life now?
Hey!! Just wondered how you were doing?!? Been a while since any videos.
Hey AMBER!!! :)
VERY good to hear from you! I AM doing well...hence the reason for no new video...LOL! I keep telling myself AND others that I NEED to make AT LEAST 1 more updated video to sort of have an official "sign-off" but you can see that hasn't worked out yet...LOL!
How are YOU doing??
Jay :)
Glad to hear!!! I am well. Tried doing Whole30 recently which was difficult with an ostomy, but I'm taking some supplements that help with digestion and it's all evening out. Would love to see a final vid with updates! ;) Take care!
Is it easy to empty the pouch or do u sometimes get the feeling its not emptied right.
I’m 55, am I too old for this procedure? 20 yrs w U C
If you have the bag why you stain your underwear, I miss something and I don't understand
Elda B Hey Elda! I HAD an external ostomy bag for 7 months but then I had an INTERNAL pouch created out of my small intestine (J-pouch) so I no longer have an external bag. I go to the bathroom "normally" on the toilet albeit more frequently.
Omg I hope you are doing better! I have serious colon problems , 3 surgeries and other procedures, and I'm trying to save my colon in a natural way, I will start with a very strong probiotics way to do it because taking 3 capsules a day of colon health is helping a lot, so Vsl#3 I heard is very good , my order is arriving tomorrow, I am hopeful is hoin to work, crossing my fingers ( and eating healthy!)
I feel very proud of you and I pray for you to have a long and happy life after all this what happened to you! Thank you for answering!
Elda B did it work ?