This honestly would have made me feel better before going into surgery. I was diagnosed with Crohn's Disease at the age of 5, and I took pills to manage, it worked for about 4 years until I kept having excruciating pain in my lower belly area whenever I ate. It hurt to the point where I'd starve myself just so I wouldn't hurt anymore. Whenever I did eat, I'd cry in pain. (Along with explosive Diareahh, but hey) I don't remember why, but for some reason, we never went into the ER, maybe because the doctors told us to wait until we got an appointment? But we did end up going and they switched me onto Remicade ( I hated it because I have a phobia of needled, which sucks because before I was 5, I ALWAYS sense I was born had these issues and the doctors said "I was too young to have anything wrong with me" But would run blood tests anyways. But I'm getting better with needles) 2 years later, Remicade stopped working, and I felt the same pain as I was when I was 9. So they changed me to another infusion drug ( I forgot the name it was long and complicated) and then again, 1 year later, that drug stopped working. This time they didn't change it but increased the dose. I was taking the dose of an overweight man. That didn't work but they didn't do anything because there was a slim amount of treatments that I could take. They admitted me into the hospital because I was 12 and I weighed 42 lbs. They gave me a G-Tube and tried that, but it didn't gain me many pounds. Then they turned my parents into social services because they didn't want me to have another scoop, because the last one almost tore through my stomach. Then they recommended a colectomy, which at first we didn't want, because any 12 year old wouldn't want surgery. We asked if we could change the drug first, and they agreed. I got my first dose of Stelara, (Which the first dose of Stelara is an infusion, and took me 7 tries to get a needle in.) They finally got the needle in and I had my first dose. It didn't do much. They still suggested the surgery. We finally agreed to it. I was in the recovery room for almost 3 hours because I was in pain. When I woke up the doctors told me that we had the surgery just in time, my colon was so infected. At first, the bag would ALWAYS leak at night, because it was placed right by my side, and I was so skinny that the base would come undone. And John, lovely John was my night nurse who came into my room when my bag would leak at night, unhook me from my several IV cords on both arms/hands. (He got married, yay!). I'm 13 now, no more leaking. I weight 87 lbs, and I'm getting back into dancing! I get my Stalara shot every 4 weeks. Sorry, this is so long, I really just needed to vent.
Great points. I'm only 11 weeks in and it feels like there's no end to recovery in sight. Insights from people like yourself who are many years into living with an ostomy really helps. Thank you.
i am going to have surgery in jan or feb because of cancer. I am having a hard time dealing with what is coming. I wish you a speedy recovery. At 57 Iam probaly going to have a rough time Icant stand being stuck inside I wish you well jeff
@@kubotajordan9502 I hope you don't mind me asking but I wonder how you are now. I have stage 4 cancer requiring a colostomy. I am told quality of the rest of my life will be better.
I'm scared. I am 38 years old, was diagnosed in 1995, and I have the surgery in two weeks. You said after 11 weeks, it seemed like the end of recovery was nowhere near in sight. Your comment was 3 years ago. What is life like now for you? Worse it worth it or not? Everyone's answer will be different. I'm asking because I still have time to say Yay or Nay.
Hi, i em, SHAYAN Khan.. i em, colostomy patient by birth..this time my age is 45+i em educated,self made& some other working person. I em belongs to poor family.. I haved no mony&resorsess to improve myself n, furthor treatment of my case,well job,own house n, wedding.. so I will reqvest you and all please support me.
My partner just had ostomy surgery a week ago, and it really is a brave new world in one way, but it's still the same world in most ways. It's an adjustment, but she no longer worries about timing everything for washroom breaks, or not going places because of fears of incontinence. And no more 'adult diapers'. The world has opened up for her again, with a twist! I think the thought of having a colostomy bag it is much worst than the reality.
Am having a total fear having ostomy.. my doctor told me that if worst comes worst , colostomy is the last option.. but upon hearing ur testimony, you gave me a new ball to hold on.. my condition really restricted me from doing all the things that I want because of pain . But thank u.. Thank u for making myself decision today.. I'll go ahead and talk to my soecialist about my readiness and all to have colostomy.
Laura you are my hero! Kind of funny, not too long after I got my ileostomy I see you on Tosh.0! Your positive outlook and humor helped me greatly! My colitis was so bad I had to have emergency surgery bcuz my colon was literally disintegrating due to the extreme inflammation. My body rejected the Humira and Remicade. Made me way sicker than the colitis did. I feel 1000% better after the surgery. I really live a pretty normal life and no longer have to worry about finding or running to the restroom. It was a lifesaver! Mentally and physically.
Robo Q-Man I had an ileostomy about 7 months ago. Humira made it worse for me, way more bleeding. Remicade didnt work. Entyvio worked till my specialist didnt wanna take my insurance anymore. Got another emergency gastro, or what i thought was one, they told me he was, he was a liver doc. He poked a hole in my intestine through a colonoscopy. Had to have emergency surgery. Doc said they never seen a more disintegrated colon.
One important distinction should be considered when you’re diagnosed with cancer in your bladder. The usual procedure is to remove that and connect the two urinary connectors coming from each kidney to a piece of thin intestine to conform the stoma that will protrude out of your stomach skin to the bottom right side of it. You must insist, being a man, (1) to Do Not remove the full prostate, if it isn’t affected by cancer. (2) reinforce the tommy skin to prevent a hernia appearing some years later. (3) design the stoma in such a way to prevent movement that will cause internal urine leaking onto the skin. Urine is a highly irritant fluid that causes intense skin rash.
I didn't get a choice. I went in the hospital on May 14th, was diagnosed with stage 4 colon cancer, and didn't get home until July 30th. Then I spent a month confined to my bed except to attempt to get to the bathroom before the bag exploded. No one knew what to tell me to keep explosions from happening. I had to reschedule my cancer treatment 3 times due to explosions in the car en route. This meant I couldn't use the car service due to accidents. It was 6 weeks after getting home before I could think about going to church. And I still haven't gone anywhere more than an hour from home. To make it worse, my support group talks about all their traveling, how they are planning their surgery (unlike me!) and they forget they even have an ostomy. When I mentioned that I was planning to have a reversal surgery, people told me I would spend ALL my time in the bathroom. Well, how is that different than my life NOW? I got no choice on anything.
Thank you for sharing, Laura. I'm 2 weeks post op and feel like I woke up in the upside down. Accepting the new, weird reality is hard and your videos help with that:) I was inspired to start my own video journal of this crazy journey.
@@montanamornings8526 what exactly you hate ? Like I’m being in medium pain 24/7 and I have a choice to do urostomy or not to stop this , can u explain what’s biggest downsides of this and would you rather to feel slight pain 24/7 over problems with urostomy ? P.s sorry for my English, I’m not native speaker
@@SlayzChannel I often have leaks with my urostomy. I have to change it out every couple of days. I have had leaks during the night while sleeping. You have a night bag hooked to your bed. I’m not sure how to abpnswer you because I don’t really realize your pain level. Once you go urostomy you can’t go back. There are other options.
I'm sorry you are having to go through this life changing event. You look young and active to where you get to choose your life style instead of the situation choosing your life style for you as previous a comment leads to believe. Keep moving forward to a better life and there won't be a reason for you to look back. God bless.
I’m glad all has worked out well for you and will many others too. 3 and half years later with an ileostomy and a struggle and fight I have to give in to the fact my body has just rejected and doesn’t like it, causing terrible diversion colitis and that’s with an end ileostomy😒. Wish everyone well on their journey xx
thank you for the honesty, had my bag fitted two months ago, so im learning and new to this and your advice is very useful, ill add i cant imagine, playing football (soccer), running or cycling. but you making me think maybe i can/ will do over time so thank you :)
Even though i may not live the lives of people like you & others with this, I would like to say the confidence & encouragement you bring is IMMACULATE! Seeing you speak positivity onto yourself & others is very inspirational. My heart & love goes out to you & others & so much respect🥰 The sky is the limit. Life is too short to stress🥳
I had emergency surgery so they wasn’t any time to really go into it I woke up in intensive care omg with 90 stitches and a bag 2 weeks in hospital it’s been very traumatic for me the operation was so painful with tubes everywhere anyway 2nd day at home and am really sore looking forward to the day I can go out with my husband
@@fisherofmen7197 taking every day slowly am disabled as well so I can’t do a lot of things anyway but thankyou for these channels who talk about colitis they have given me so much info I didn’t know the bag I had my first leak after 8 weeks not nice I was in bed ☹️ xx
Perhaps do the cleaning in the shower then put the appliance on. I would have a ostomy nurse or home health to help until you are comfortable because it should take much less than an hour. You are going to get through this and it will get easier. Many product suppliers have hotlines to call for advice as well!
anyone tried fecal transplant? I'm surprised no one talks about it as it currently seems the best/only treatment that works (even if we don't know what specifically solve it)
While I Appreciate her insights the fact that this is sponsored by a health group makes it suspicious at best propaganda at worst. Just for everybody watching be aware this is sponsored by a health group and I haven't seen one video yet that has talked about any negative effects from surgery that this health group has sponsored
My question is the doctors have told me it Crohn's, lack of care for celiacs, and now one Dr is telling me it cancer. I'm in so much pain all the time. It's the worst pain I've ever had. So to my question. Does this help with these issues? Are you sure I will have better times. I don't expect it to be a cure all but I need to get some sort of relief and better way of life
Also, have they done a colonoscopy and biopsied your colon and intestines to look for Crohn’s disease activity? That test should also be able to test for colon cancer as well.
I always remember some thing wast right just a shame you were so young,Glad you feel better now an getting back into what you love bro;) Steroids for almost my life from i was 23 till 38.
22 years Ive had an ostomy. I wish they would have told me that I would never have love again. I would have chose death from Chrones. 22 years of debt slavery.
You shouldn't have to take medication related to Chrons or colitis. Luckily mine was only in the colon, so when it was removed, the condition was gone. Some people aren't so lucky unfortunately. Recovery was about 2 weeks for the surgical incisions to fully heal. Really the first week was rough. Everything hurts when you move bcuz they have to cut you open to remove your colon. Huge step, but I feel so much better now. 👌🏼
I didn’t even have the choice. I woke up with an ostomy during an emergency abscess surgery. I feel so much better honestly.
This honestly would have made me feel better before going into surgery.
I was diagnosed with Crohn's Disease at the age of 5, and I took pills to manage, it worked for about 4 years until I kept having excruciating pain in my lower belly area whenever I ate. It hurt to the point where I'd starve myself just so I wouldn't hurt anymore. Whenever I did eat, I'd cry in pain. (Along with explosive Diareahh, but hey) I don't remember why, but for some reason, we never went into the ER, maybe because the doctors told us to wait until we got an appointment? But we did end up going and they switched me onto Remicade ( I hated it because I have a phobia of needled, which sucks because before I was 5, I ALWAYS sense I was born had these issues and the doctors said "I was too young to have anything wrong with me" But would run blood tests anyways. But I'm getting better with needles) 2 years later, Remicade stopped working, and I felt the same pain as I was when I was 9. So they changed me to another infusion drug ( I forgot the name it was long and complicated) and then again, 1 year later, that drug stopped working. This time they didn't change it but increased the dose. I was taking the dose of an overweight man. That didn't work but they didn't do anything because there was a slim amount of treatments that I could take. They admitted me into the hospital because I was 12 and I weighed 42 lbs. They gave me a G-Tube and tried that, but it didn't gain me many pounds. Then they turned my parents into social services because they didn't want me to have another scoop, because the last one almost tore through my stomach. Then they recommended a colectomy, which at first we didn't want, because any 12 year old wouldn't want surgery. We asked if we could change the drug first, and they agreed. I got my first dose of Stelara, (Which the first dose of Stelara is an infusion, and took me 7 tries to get a needle in.) They finally got the needle in and I had my first dose. It didn't do much. They still suggested the surgery. We finally agreed to it. I was in the recovery room for almost 3 hours because I was in pain. When I woke up the doctors told me that we had the surgery just in time, my colon was so infected. At first, the bag would ALWAYS leak at night, because it was placed right by my side, and I was so skinny that the base would come undone. And John, lovely John was my night nurse who came into my room when my bag would leak at night, unhook me from my several IV cords on both arms/hands. (He got married, yay!). I'm 13 now, no more leaking. I weight 87 lbs, and I'm getting back into dancing! I get my Stalara shot every 4 weeks.
Sorry, this is so long, I really just needed to vent.
I'm sorry. That must have been horrible for you.
You’re so strong!!❤️ I’m glad you’re doing okay now!
I'm goin through this same situation..pain in belly after eating and diarrhea
Stay strong 💪
I'm happy that you did the right thing right on time...
Great points. I'm only 11 weeks in and it feels like there's no end to recovery in sight. Insights from people like yourself who are many years into living with an ostomy really helps. Thank you.
i am going to have surgery in jan or feb because of cancer. I am having a hard time dealing with what is coming. I wish you a speedy recovery. At 57 Iam probaly going to have a rough time Icant stand being stuck inside I wish you well jeff
how is it now?
@@kubotajordan9502 I hope you don't mind me asking but I wonder how you are now. I have stage 4 cancer requiring a colostomy. I am told quality of the rest of my life will be better.
I hope you’re doing well, I’ve had my ileostomy for over 20 years now.
I'm scared. I am 38 years old, was diagnosed in 1995, and I have the surgery in two weeks. You said after 11 weeks, it seemed like the end of recovery was nowhere near in sight. Your comment was 3 years ago. What is life like now for you? Worse it worth it or not? Everyone's answer will be different. I'm asking because I still have time to say Yay or Nay.
You just made me a brave/braver old man. I'm having my surgery in 3 days.
Wish you a long happy life.
Thank you for the video.
Hi, i em, SHAYAN Khan..
i em,
colostomy patient by birth..this time my age is 45+i em educated,self made& some other working person. I em belongs to poor family.. I haved no mony&resorsess to improve myself n, furthor treatment of my case,well job,own house n, wedding.. so I will reqvest you and all please support me.
How are you right now?
My partner just had ostomy surgery a week ago, and it really is a brave new world in one way, but it's still the same world in most ways. It's an adjustment, but she no longer worries about timing everything for washroom breaks, or not going places because of fears of incontinence. And no more 'adult diapers'. The world has opened up for her again, with a twist! I think the thought of having a colostomy bag it is much worst than the reality.
She will be living all of her life??? And changing the bag is painful??
Am having a total fear having ostomy.. my doctor told me that if worst comes worst , colostomy is the last option.. but upon hearing ur testimony, you gave me a new ball to hold on.. my condition really restricted me from doing all the things that I want because of pain . But thank u.. Thank u for making myself decision today.. I'll go ahead and talk to my soecialist about my readiness and all to have colostomy.
How are you???
Laura you are my hero! Kind of funny, not too long after I got my ileostomy I see you on Tosh.0! Your positive outlook and humor helped me greatly! My colitis was so bad I had to have emergency surgery bcuz my colon was literally disintegrating due to the extreme inflammation. My body rejected the Humira and Remicade. Made me way sicker than the colitis did. I feel 1000% better after the surgery. I really live a pretty normal life and no longer have to worry about finding or running to the restroom. It was a lifesaver! Mentally and physically.
So glad to hear!
Robo Q-Man I had an ileostomy about 7 months ago. Humira made it worse for me, way more bleeding. Remicade didnt work. Entyvio worked till my specialist didnt wanna take my insurance anymore. Got another emergency gastro, or what i thought was one, they told me he was, he was a liver doc. He poked a hole in my intestine through a colonoscopy. Had to have emergency surgery. Doc said they never seen a more disintegrated colon.
Being a patient of colon cancer , i know it makes you feel weak , or disabled but it also opens up life in a new way you never knew or experienced.
I'm very happy for you. I hope you live a long and healthy life.
Beautiful testimony, beautiful mind. God bless you for sharing
One important distinction should be considered when you’re diagnosed with cancer in your bladder. The usual procedure is to remove that and connect the two urinary connectors coming from each kidney to a piece of thin intestine to conform the stoma that will protrude out of your stomach skin to the bottom right side of it. You must insist, being a man, (1) to Do Not remove the full prostate, if it isn’t affected by cancer. (2) reinforce the tommy skin to prevent a hernia appearing some years later. (3) design the stoma in such a way to prevent movement that will cause internal urine leaking onto the skin. Urine is a highly irritant fluid that causes intense skin rash.
Good points, Jorge!
Thank you so much, I was very depressed till I watched this clip.
I didn't get a choice. I went in the hospital on May 14th, was diagnosed with stage 4 colon cancer, and didn't get home until July 30th. Then I spent a month confined to my bed except to attempt to get to the bathroom before the bag exploded. No one knew what to tell me to keep explosions from happening. I had to reschedule my cancer treatment 3 times due to explosions in the car en route. This meant I couldn't use the car service due to accidents. It was 6 weeks after getting home before I could think about going to church. And I still haven't gone anywhere more than an hour from home. To make it worse, my support group talks about all their traveling, how they are planning their surgery (unlike me!) and they forget they even have an ostomy.
When I mentioned that I was planning to have a reversal surgery, people told me I would spend ALL my time in the bathroom. Well, how is that different than my life NOW? I got no choice on anything.
How are you??
Thank you for sharing, Laura. I'm 2 weeks post op and feel like I woke up in the upside down. Accepting the new, weird reality is hard and your videos help with that:) I was inspired to start my own video journal of this crazy journey.
I’ve had my urostomy for 3 years. I still hate everything about it. Everything. It sucks. Sorry
@@montanamornings8526 what exactly you hate ? Like I’m being in medium pain 24/7 and I have a choice to do urostomy or not to stop this , can u explain what’s biggest downsides of this and would you rather to feel slight pain 24/7 over problems with urostomy ?
P.s sorry for my English, I’m not native speaker
@@SlayzChannel I often have leaks with my urostomy. I have to change it out every couple of days. I have had leaks during the night while sleeping. You have a night bag hooked to your bed. I’m not sure how to abpnswer you because I don’t really realize your pain level. Once you go urostomy you can’t go back. There are other options.
Love the positivity!! But it is hard. Swimming is something I learned how to do, after a failure. I get down, but I get back up.
I'm sorry you are having to go through this life changing event. You look young and active to where you get to choose your life style instead of the situation choosing your life style for you as previous a comment leads to believe. Keep moving forward to a better life and there won't be a reason for you to look back. God bless.
Thank you so much for sharing, helped me to know it's ok to be scared and I'm not alone as I head to surgery in a few days. Be well.
how is it going now?
I’m glad all has worked out well for you and will many others too. 3 and half years later with an ileostomy and a struggle and fight I have to give in to the fact my body has just rejected and doesn’t like it, causing terrible diversion colitis and that’s with an end ileostomy😒. Wish everyone well on their journey xx
Sorry to hear your struggles😢
thank you for the honesty, had my bag fitted two months ago, so im learning and new to this and your advice is very useful, ill add i cant imagine, playing football (soccer), running or cycling. but you making me think maybe i can/ will do over time so thank you :)
Even though i may not live the lives of people like you & others with this, I would like to say the confidence & encouragement you bring is IMMACULATE! Seeing you speak positivity onto yourself & others is very inspirational. My heart & love goes out to you & others & so much respect🥰 The sky is the limit. Life is too short to stress🥳
Feel free to go away
I had emergency surgery so they wasn’t any time to really go into it I woke up in intensive care omg with 90 stitches and a bag 2 weeks in hospital it’s been very traumatic for me the operation was so painful with tubes everywhere anyway 2nd day at home and am really sore looking forward to the day I can go out with my husband
How are you doing now?
@@fisherofmen7197 taking every day slowly am disabled as well so I can’t do a lot of things anyway but thankyou for these channels who talk about colitis they have given me so much info I didn’t know the bag I had my first leak after 8 weeks not nice I was in bed ☹️ xx
Nice pix of Vasquez Rocks!
Thanks very much for your you are a very brave girl I pray for you
Beautiful message--Thank you!
You bring light to life🙏
I definitely feel the same way...Had my colon removed last month!
Thank you so much for sharing!!!
Need more about leakage.
I am very agree with you! you are so brave and beautiful ,blessing you.
Thank you very much for your video lot of information I was wondering about god bless you
I wish someone had told me that you don’t get to ‘time’ toilet breaks, bag changes take up 2 hours of my day
Perhaps do the cleaning in the shower then put the appliance on. I would have a ostomy nurse or home health to help until you are comfortable because it should take much less than an hour. You are going to get through this and it will get easier. Many product suppliers have hotlines to call for advice as well!
anyone tried fecal transplant? I'm surprised no one talks about it as it currently seems the best/only treatment that works (even if we don't know what specifically solve it)
While I Appreciate her insights the fact that this is sponsored by a health group makes it suspicious at best propaganda at worst. Just for everybody watching be aware this is sponsored by a health group and I haven't seen one video yet that has talked about any negative effects from surgery that this health group has sponsored
My question is the doctors have told me it Crohn's, lack of care for celiacs, and now one Dr is telling me it cancer. I'm in so much pain all the time. It's the worst pain I've ever had. So to my question. Does this help with these issues? Are you sure I will have better times. I don't expect it to be a cure all but I need to get some sort of relief and better way of life
Also, have they done a colonoscopy and biopsied your colon and intestines to look for Crohn’s disease activity? That test should also be able to test for colon cancer as well.
I always remember some thing wast right just a shame you were so young,Glad you feel better now an getting back into what you love bro;) Steroids for almost my life from i was 23 till 38.
How do you lose weight with a stoma ?
Thank you
Thank you ❤
you are beautiful..thank u for this
Did you film at Vasquez Rocks in CA?
As I read your comment she said they filmed at Vasquez rocks
22 years Ive had an ostomy. I wish they would have told me that I would never have love again. I would have chose death from Chrones. 22 years of debt slavery.
what do you mean??
Do people not date you bcuz you have a ostomy?
Does it pain?? Can't you do everything with that??? How are you!!
STar Trek location is so cool 😎
Long and short, " Sugarbacker procedure " with HIPEC. Just incase someone thought I'm just talking without context 🙂. Survivors rock!!!
How do you hide your bag through clothes pls ?
I feel better and can eat now. But after one year and a half, my bags won’t stick. Comes off at the wrong times
Nice
Can you have surgery to have your ostmy bag removed
🙏🏼🙏🏼🙏🏼
Did you have it reversed ?
Do you Take any medication now??
You shouldn't have to take medication related to Chrons or colitis. Luckily mine was only in the colon, so when it was removed, the condition was gone. Some people aren't so lucky unfortunately. Recovery was about 2 weeks for the surgical incisions to fully heal. Really the first week was rough. Everything hurts when you move bcuz they have to cut you open to remove your colon. Huge step, but I feel so much better now. 👌🏼
👀👀
Great points but why do you have to speak like that. It's so irritating
hi bhai do you also have a ostomy??
I am getting one soon and i am very scared
@@IdkIdk-gw3qobro how are you doing?
@@shashwatgupta1745 hi bro i am doing okay what about you do u also have a ostomy?
Thank you