You just summed up my whole life after a TOTAL COLECTOMY. I WONDERed if people think I'm crazy when I tell them my story, but I fell so much better. This was absolutely helpful!
Just had a total colectomy with IRA two weeks ago. No complications but I did have to have open surgery. In the healing process now. Thank you for sharing 💗
Hello. I came across your videos from Facebook on Tosh.0 page. I too have ulcerative colitis. Luckily for me, I have the most manageable, if you want to call it "manageable", form of ulcerative colitis. I usually have some of the same symptoms when I have flare-ups. I get tired and feel weak, but not super weak. (Thank God, because I need my workouts! lol) All I want to do is sleep. I feel best when I sleep. Just wanted to say what you are doing is awesome. I respect what you are doing and I hope you will continue the good work. Keep up the great job and stay healthy! Good luck with school and your new apartment. :)
Everyone.... We all have to remember everything happens for a reason even if it seems like the worst possible thing that could happen at the moment. It took me a long time to grasp that idea and move forward but it helps (: even though I have more bad than good days, I know God gave me my disease for a reason and I trust it will be okay! (Hope not have offended anyone by being a little religious there!)
What made you want to keep part of your rectum? I had a full proctocolectomy with a permanent Ileostomy. I didn't want to put my body through the extra stress of another surgery and time off of work. Thanks for all the great videos! You've been a HUGE help.
Don't listen to the haters Laura. If they don't like what you have to say they can turn off. You're always helpful and bubbly so just keep being you. xx~C~xx
I'm glad to see you been going strong through it all. I was diagnosed 2 years ago. Had allergic reactions to most of the meds and predisone wasn't too helpful. I did however learn about scd diet which has helped alot. I have found that spinach and sunflower seeds can help but instead I take vitamins which include extra vitamin d3 and magnesium. I take a herb called boswellia which helps and nicotine also helps. I don't recommend nicotine especially through cigarettes. The biggest help though is scd diet. Stay strong and keep smiling that's what my moto is through this!
O.k. so some clarification on a few things.While yes you can't CURE autoimmune disease since it manifests it's self in many areas. You KINDA are cured of UC. HOWEVER a couple of things. the stump they leave is still infected with UC now called cuffitis. Some surgeons preform a mucosamy (or scraping) to remove any remaining UC. The mucus discharge is normal part of the entire digestive tract to help move along waste. If the cuff isn't scraped (due to limits see part 2 below to finish)
PLEASE NOTE: I simplified many things here due to the limited characters allowed and is not meant as a tell all. Example I mentioned UC hits 2 main areas HOWEVER for those in the know that may call me out UC CAN and does infect the entire colon known as Pancolitis but again the most COMMON affects are in the areas I mentioned. I developed Pancolitis which is what lead to having my colon removed as it's harder to control then those other 2 areas seeing they are smaller affected. Far enough?
I had a Jpouch done but my stump was not scraped so I still had UC. The flaring was so bad due to many factors I won't go into here or I'll have a million posts myself. Since Canasa is basically Asacol in a suppository it wouldn't work( the main reason I had the colon removed in the 1st place) I've returned to a stoma BUT still have my Pouch and like you still have mucus and the cuff does act up but since no real pressure or waste is in there it's manageable. Hard to cover all in here.
Wow..I have FAP which is similar to your problem (had a total colectomy as well)..and what is weird is I have the exact same symptoms...does you body also make strange alien like sounds with the stomach acids(mucus) develops? Because my seems to be worse with the build up...p.s. I love watching your videos, though I know a lot about it I still like hearing other people and there stories...stay strong.
But the scraping doesn't always work that's why most don't do it they play the odds. Meaning UC manifests itself in one of 2 places. the Anus (or now called cuff) OR up by the ileum. If most of your flares were in the ileum area your odds of cuffitis are small and most likely your Jpouch should be fine. IF you have it in your cuff area the odds are pretty great you'll continue to have flares which are MUCH worse then normal UC flares for many reasons I won't go into here.
Pt2 cont. Scraped you still have UC of the rectal stump. You CAN be free of UC (but as you said not autoimmune disease) If you have the stump removed and the anus sewn shut. The main reason for a stump in from the creation of a Jpouch. If you have a perm stoma you possibly do not have the rectal stump or open Anus area. Cuffitis is UC and as you said some people (with Jpouches mainly) are on Canasa (Melamalimine suppositories) to control flaring. (sigh see part 3 sorry so long) :P
I gather from your comments in the video that you did not have a J-Pouch constructed, so you decided to keep your stoma (keep Trixy). Since you kept part of your rectum, are planning a J-Pouch in the future? I had the chance to get reconnected, but I picked to remove all of the rectum and to have the anus closed. The thought of having bowels telling me to go to the bathroom again scared me too much. However, sometime I question my decision. I'll have a bag for the rest of my life!
You just summed up my whole life after a TOTAL COLECTOMY. I WONDERed if people think I'm crazy when I tell them my story, but I fell so much better. This was absolutely helpful!
She is well worth listening to. God Bless her positive attitude, well done.
Just had a total colectomy with IRA two weeks ago. No complications but I did have to have open surgery. In the healing process now. Thank you for sharing 💗
Hello.
I came across your videos from Facebook on Tosh.0 page. I too have ulcerative colitis. Luckily for me, I have the most manageable, if you want to call it "manageable", form of ulcerative colitis. I usually have some of the same symptoms when I have flare-ups. I get tired and feel weak, but not super weak. (Thank God, because I need my workouts! lol) All I want to do is sleep. I feel best when I sleep.
Just wanted to say what you are doing is awesome. I respect what you are doing and I hope you will continue the good work. Keep up the great job and stay healthy! Good luck with school and your new apartment. :)
Laura! You are always helpful! I don't even
Everyone.... We all have to remember everything happens for a reason even if it seems like the worst possible thing that could happen at the moment. It took me a long time to grasp that idea and move forward but it helps (: even though I have more bad than good days, I know God gave me my disease for a reason and I trust it will be okay! (Hope not have offended anyone by being a little religious there!)
What made you want to keep part of your rectum? I had a full proctocolectomy with a permanent Ileostomy. I didn't want to put my body through the extra stress of another surgery and time off of work. Thanks for all the great videos! You've been a HUGE help.
Don't listen to the haters Laura. If they don't like what you have to say they can turn off. You're always helpful and bubbly so just keep being you. xx~C~xx
I'm glad to see you been going strong through it all. I was diagnosed 2 years ago. Had allergic reactions to most of the meds and predisone wasn't too helpful. I did however learn about scd diet which has helped alot. I have found that spinach and sunflower seeds can help but instead I take vitamins which include extra vitamin d3 and magnesium. I take a herb called boswellia which helps and nicotine also helps. I don't recommend nicotine especially through cigarettes. The biggest help though is scd diet. Stay strong and keep smiling that's what my moto is through this!
I thought I was crazy thinking my joint pain was due to colitis. That arthritis feeling in my knees and wrists are the absolute worst !
O.k. so some clarification on a few things.While yes you can't CURE autoimmune disease since it manifests it's self in many areas. You KINDA are cured of UC. HOWEVER a couple of things. the stump they leave is still infected with UC now called cuffitis. Some surgeons preform a mucosamy (or scraping) to remove any remaining UC. The mucus discharge is normal part of the entire digestive tract to help move along waste. If the cuff isn't scraped (due to limits see part 2 below to finish)
Hi Laura!
I had mentioned you in my story i finally wrote....after 8 years.
That is so wonderfully sweet! I'm so honored. How long is the story? Is it anywhere I can find it?
PLEASE NOTE: I simplified many things here due to the limited characters allowed and is not meant as a tell all. Example I mentioned UC hits 2 main areas HOWEVER for those in the know that may call me out UC CAN and does infect the entire colon known as Pancolitis but again the most COMMON affects are in the areas I mentioned. I developed Pancolitis which is what lead to having my colon removed as it's harder to control then those other 2 areas seeing they are smaller affected. Far enough?
Have uc and you help me! I have a different colon disease and all of your videos I've seen have helped one way or another (:
Your beautiful 😊💚💚
I had a Jpouch done but my stump was not scraped so I still had UC. The flaring was so bad due to many factors I won't go into here or I'll have a million posts myself. Since Canasa is basically Asacol in a suppository it wouldn't work( the main reason I had the colon removed in the 1st place) I've returned to a stoma BUT still have my Pouch and like you still have mucus and the cuff does act up but since no real pressure or waste is in there it's manageable. Hard to cover all in here.
Wow..I have FAP which is similar to your problem (had a total colectomy as well)..and what is weird is I have the exact same symptoms...does you body also make strange alien like sounds with the stomach acids(mucus) develops? Because my seems to be worse with the build up...p.s. I love watching your videos, though I know a lot about it I still like hearing other people and there stories...stay strong.
Did you decide against the J-pouch?
Love ya stay safe 💚💚💚💚💚
generally I try to once a week!
thanks so much
Yep I am just trying to get through this.. Ugh
But the scraping doesn't always work that's why most don't do it they play the odds. Meaning UC manifests itself in one of 2 places. the Anus (or now called cuff) OR up by the ileum. If most of your flares were in the ileum area your odds of cuffitis are small and most likely your Jpouch should be fine. IF you have it in your cuff area the odds are pretty great you'll continue to have flares which are MUCH worse then normal UC flares for many reasons I won't go into here.
Just curious, did you get the colostomy bag removed?
Did you get a j pouch?
Do you respond to messages?
The person I was referring to told me I should leave out my personal life because I'm boring. It wasn't you!
Pt2 cont. Scraped you still have UC of the rectal stump. You CAN be free of UC (but as you said not autoimmune disease) If you have the stump removed and the anus sewn shut. The main reason for a stump in from the creation of a Jpouch. If you have a perm stoma you possibly do not have the rectal stump or open Anus area. Cuffitis is UC and as you said some people (with Jpouches mainly) are on Canasa (Melamalimine suppositories) to control flaring. (sigh see part 3 sorry so long) :P
I 💚 u 😊😍💚
Pretty sure the reference to haters is related to comments on the last video...not to any of your posts.Relax
I gather from your comments in the video that you did not have a J-Pouch constructed, so you decided to keep your stoma (keep Trixy). Since you kept part of your rectum, are planning a J-Pouch in the future? I had the chance to get reconnected, but I picked to remove all of the rectum and to have the anus closed. The thought of having bowels telling me to go to the bathroom again scared me too much. However, sometime I question my decision. I'll have a bag for the rest of my life!
dont feel bad there is nothing wrong with having a stoma!