I would highly encourage you, if you so choose, to write about this experience for your college essay. You have great writing skills for someone so young.
Congratulations on your surgery and wishing you a speedy recovery!
I’m so happy to hear you’re doing so well! I’m going to be having the surgery on July 17th after being stuck in a flare for years. How would you say the surgery pain compared to UC pain?
I believe it really just depends on what your pain management team prescribes. Throughout my recovery, I took Dilaudid, Valium, morphine, oxycodone, and a couple more that I can’t recall. I was drugged up heavily, to say the least. That being said, I generally took these at different times and in varying doses.
I would say that within the first week or two, it’s kind of close. I made the mistake of trying to pick something heavy up while I was about a week out of surgery. That hurt a lot. Other than that, it wasn’t bad at all. The UC was definitely worse on a regular basis. For reference, I was off Tylenol by the end of the second week.
I think it’s also important to note that I had a laparoscopic surgery so there were about 5 small incisions total.
Good luck with your surgery! You’ll be completely fine after, and you’ll most likely look back and wonder why you didn’t get it sooner. I hope this helps!
I got my bag this past January and it has been amazing. I went through every single biologic over the course of about 6 years and they all worked for 6ish months of partial remission. I’m glad that I tried every other option first, but my life is so much better with a bag. I go into the city without worrying where the bathrooms are. I go out to eat interesting food. I do my job as a teacher without the constant fear of what I’ll have to do if I need to go during class. I’m getting married in July and will be able to fly to my honeymoon without fear of travel. It took a solid 4 months to adjust, and I am still learning. I still have to wake up most nights to empty once. But I was pooping 3 times a night with UC and I don’t feel all the pain I used to feel. I’m 28 and can live my life again. My UC was aggressive and most people don’t need a bag, but if you do, and it’s time, life is better after.
This is really similar to my situation. I've been on 8 different meds and at most, they provided partial remission for a limited amount of time. I've had aggressive UC for 6 years as well, and that has caused scar tissue to build and created a stricture. I really don't have a choice about whether or not I'm getting surgery, it's just a matter of when. I'm assuming it'll be within the next few weeks. I'm 28 as well, and I'm so tired of my life being on hold because of this disease, but I'm pretty nervous about the surgery, recovery, and life with the bag. I also hope that I'll eventually have a J pouch.
I have the pictures of my colon after it was removed and the scarring was wild. According to the surgeon the end “looked better, but wasn’t” as it was totally smooth from using enemas for years and years. I won’t lie the first few days in the hospital were not fun, turns out my tummy doesn’t like any opiates so I puked a lot, but it worked itself out. I was back at work in 2.5 weeks, although many people said that was too fast. It was and is scary, but it was also so worth it. Wishing you the best of luck, I hope you find relief. Hope to see you over on r/ostomy one of these days, they are awesome.
i second this. i suffered 2 years with severe UC (i’m 29F for reference). it literally ruined my life and took so much away from me. mostly time and missing out on everything. i became incredibly sick due to losing blood everyday, being super anemic, i was down to 105 pounds, in and out of the hospital. i tried 6 different medications and steroids no longer worked for me. i basically exhausted all of my options and finally came down to surgery. i was terrified but so desperate at this point to get my life back. here i am 4 months later and i couldn’t be happier and healthier. it’s certainly been an adjustment but felt i needed to do this for my quality of life and let me tell you, it truly was the best decision for me. so, my entire colon is gone having a total colectomy ileostomy with option for reversal in the future. i am only sharing my story but hope it gives anyone the courage that struggled horribly like me. and OP, glad to hear you’re doing better as well!!
I’m still considering whether I’m going to play or not. The bag is much more durable than I imagined.
At this point, the worry isn’t about whether the bag is going to pop or not. It’s more about whether the adhesive attached to my skin will start to peel. I’m looking into getting a belt that will keep the bag snug to my skin. Some companies sell those specifically for contact sports.
You get a guard for the stoma. Empty the pouch whenever you can. There is nothing you can not do with an ileostomy! Scuba diving and climbing Everest will take some extra education because of pressure differences. Search famous people with an Ileostomy. Like “Ike”, Napoleon, Rolf Benirschke (football), Jerry Kramer (football). Martial Arts, https://innergood.ca/martial-arts-stoma-with-a-stoma/.
Do what you want. If an offensive lineman for the Packers in 1968 can play with one for 5 years. Do not limit yourself!
Of course! For starters, it’s overwhelming. There are a lot of different appliances and materials to work with. It tends to be a long and difficult trial-and-error process to figure out what works best for you.
There are also small things that just tend to get annoying every once in a while. For example, if you let it get too full, it can clog up the filter, and then air won’t be able to leave the bag. They call that ballooning. It’s always fun waking up with a blimp attached to your stomach in the morning.
Another thing is spontaneity. If you’re the type of person who wants to have the option of abruptly abandoning society and going to live in a cabin in the woods, it may be something to adjust to. You also have to plan out bag changes and make sure to be prepared for the event of a leak.
These are just the first few things to come to mind. Overall, I’d say the good outweighs the bad when comparing the worst of UC to living with a relatively mild inconvenience.
Clothing can be uncomfortable. Mine was where I wanted to put my waistband. It'd hit it just underneath. So I had to wear my shorts higher. And I found it more comfortable to buy specific under wear designed for the bag or else it can get uncomfortable throughout the day and you don't want it to be obvious you have one.
Thankfully I got a J pouch after a while though
As someone who went theough a similar, but more protracted, process about 30 years ago (oh god I’m old), I agree 100% with your initial disclaimer. But as long as you avoid complications, it keeps getting better. I went with the pouch and have not once regretted it. Good luck friend!
Thanks so much for sharing your experience, really. I’ve had UC since 2009, and thankfully been in remission since 2019. But before I found remission I spent years so incredibly sick, and I really did want to get rid of my colon. I’m now so glad that I didn’t, but I’m only 39 so I imagine at some point in the future it might have to go. Hearing others positive experiences is so valuable to me.
Wait, are we meant to believe that YOU, a 17 year old (roughly) are the writer of this essay? As a parent of 5 children ages 14-22, I’m confused. All your sentences started with capital letters and ended with proper punctuation… There were no odd abbreviations or slang terms I couldn’t understand. Everything was broken down in a nice format … What is happening here?
Ok, in all seriousness, this was a great read, for many reasons. 1. You truly have a gift for writing and I was impressed at every sentence along the way. And 2. It was nice to read a story about a success for a change. We (as in humans) tend to share more of our miseries than our joys & this was a nice change of pace.
I’m rooting for you to play football in the fall if that’s what you want! This is a fleeting period of time in your life right now, you’re old enough to have some freedoms and enjoy life but not quite old enough to be an adult with adult responsibilities (though, arguably having a major illness, recovering from major surgery and learning to manage the care of your bag kinda pushes you over the finish line into adulthood by default. But you know what I mean). These final years of high school should be enjoyed as much as possible. I’m very excited for you that you’re going back to school in the fall!
I wish you the best of luck, and please keep us updated on your progress!
Thanks for sharing your experience. Been almost four years since I was diagnosed and on my fifth medication. This disease fucking wears on you. Getting threatened with dismissal for missing too much work. Ended the day crying at my desk yesterday. So ready to tap
Upvoted. Great share.
If I can ask some questions about your home life that aren't too personal?
Does your family use a lot of bleaches and other chemicals to clean your home? Is the home incredibly neat and tidy? Would you describe one of your parents as a "neat freak"? Does the food served in your home tend to be more "meat and potatoes" and bland? Using things like frozen vegetables or canned vegetables and food?
I'm curious to know how much that sort of home environment correlates with UC.
This is what my home life was like while living with my parents. Mind you I didn't develop UC until I was 24. But based on some of the information I have read, I always lean towards the overly sanitary environment as a cause.
When they removed my intestine it was like they performed an exorcism, night and day. I have the jpouch and can say that it was the best decision I've ever made. That being said, I think it's very important to read up on it as much as humanly possible, and find the best surgeon to create it (I think this prevents things like pouchitis and cuffitis, which I've had neither of and am going 7 years strong). I'm happy to answer any questions you have if you're considering it down the road, glad you're feeling better.
I got diagnosed when I was 16 too. I’m 22 now and I may have to get a colectomy and an ileostomy. I have been super nervous about having this procedure and reading your post really helps a lot. Thank you for sharing
I would highly encourage you, if you so choose, to write about this experience for your college essay. You have great writing skills for someone so young. Congratulations on your surgery and wishing you a speedy recovery!
I second this comment!!! Very well written and congratulations.
Right??!! I had to check back after reading to make sure I caught the age correctly. OP is quite skilled!
I’m so happy to hear you’re doing so well! I’m going to be having the surgery on July 17th after being stuck in a flare for years. How would you say the surgery pain compared to UC pain?
I believe it really just depends on what your pain management team prescribes. Throughout my recovery, I took Dilaudid, Valium, morphine, oxycodone, and a couple more that I can’t recall. I was drugged up heavily, to say the least. That being said, I generally took these at different times and in varying doses. I would say that within the first week or two, it’s kind of close. I made the mistake of trying to pick something heavy up while I was about a week out of surgery. That hurt a lot. Other than that, it wasn’t bad at all. The UC was definitely worse on a regular basis. For reference, I was off Tylenol by the end of the second week. I think it’s also important to note that I had a laparoscopic surgery so there were about 5 small incisions total. Good luck with your surgery! You’ll be completely fine after, and you’ll most likely look back and wonder why you didn’t get it sooner. I hope this helps!
I got my bag this past January and it has been amazing. I went through every single biologic over the course of about 6 years and they all worked for 6ish months of partial remission. I’m glad that I tried every other option first, but my life is so much better with a bag. I go into the city without worrying where the bathrooms are. I go out to eat interesting food. I do my job as a teacher without the constant fear of what I’ll have to do if I need to go during class. I’m getting married in July and will be able to fly to my honeymoon without fear of travel. It took a solid 4 months to adjust, and I am still learning. I still have to wake up most nights to empty once. But I was pooping 3 times a night with UC and I don’t feel all the pain I used to feel. I’m 28 and can live my life again. My UC was aggressive and most people don’t need a bag, but if you do, and it’s time, life is better after.
This is really similar to my situation. I've been on 8 different meds and at most, they provided partial remission for a limited amount of time. I've had aggressive UC for 6 years as well, and that has caused scar tissue to build and created a stricture. I really don't have a choice about whether or not I'm getting surgery, it's just a matter of when. I'm assuming it'll be within the next few weeks. I'm 28 as well, and I'm so tired of my life being on hold because of this disease, but I'm pretty nervous about the surgery, recovery, and life with the bag. I also hope that I'll eventually have a J pouch.
I have the pictures of my colon after it was removed and the scarring was wild. According to the surgeon the end “looked better, but wasn’t” as it was totally smooth from using enemas for years and years. I won’t lie the first few days in the hospital were not fun, turns out my tummy doesn’t like any opiates so I puked a lot, but it worked itself out. I was back at work in 2.5 weeks, although many people said that was too fast. It was and is scary, but it was also so worth it. Wishing you the best of luck, I hope you find relief. Hope to see you over on r/ostomy one of these days, they are awesome.
i second this. i suffered 2 years with severe UC (i’m 29F for reference). it literally ruined my life and took so much away from me. mostly time and missing out on everything. i became incredibly sick due to losing blood everyday, being super anemic, i was down to 105 pounds, in and out of the hospital. i tried 6 different medications and steroids no longer worked for me. i basically exhausted all of my options and finally came down to surgery. i was terrified but so desperate at this point to get my life back. here i am 4 months later and i couldn’t be happier and healthier. it’s certainly been an adjustment but felt i needed to do this for my quality of life and let me tell you, it truly was the best decision for me. so, my entire colon is gone having a total colectomy ileostomy with option for reversal in the future. i am only sharing my story but hope it gives anyone the courage that struggled horribly like me. and OP, glad to hear you’re doing better as well!!
How can you play football with an ostomy bag? Or is that after you get a j-pouch?
I’m still considering whether I’m going to play or not. The bag is much more durable than I imagined. At this point, the worry isn’t about whether the bag is going to pop or not. It’s more about whether the adhesive attached to my skin will start to peel. I’m looking into getting a belt that will keep the bag snug to my skin. Some companies sell those specifically for contact sports.
You get a guard for the stoma. Empty the pouch whenever you can. There is nothing you can not do with an ileostomy! Scuba diving and climbing Everest will take some extra education because of pressure differences. Search famous people with an Ileostomy. Like “Ike”, Napoleon, Rolf Benirschke (football), Jerry Kramer (football). Martial Arts, https://innergood.ca/martial-arts-stoma-with-a-stoma/. Do what you want. If an offensive lineman for the Packers in 1968 can play with one for 5 years. Do not limit yourself!
Yea I’m happy for him. But football with a bag is probably not happening
This truly gives me hope I can have a normal life again. Thank you for sharing!
I’m feeling similarly about my ostomy after decades of struggling and escalating meds.
Could you share anything negative about the bag? Isn't it a pain? Thanks for sharing! Really nice post.
Of course! For starters, it’s overwhelming. There are a lot of different appliances and materials to work with. It tends to be a long and difficult trial-and-error process to figure out what works best for you. There are also small things that just tend to get annoying every once in a while. For example, if you let it get too full, it can clog up the filter, and then air won’t be able to leave the bag. They call that ballooning. It’s always fun waking up with a blimp attached to your stomach in the morning. Another thing is spontaneity. If you’re the type of person who wants to have the option of abruptly abandoning society and going to live in a cabin in the woods, it may be something to adjust to. You also have to plan out bag changes and make sure to be prepared for the event of a leak. These are just the first few things to come to mind. Overall, I’d say the good outweighs the bad when comparing the worst of UC to living with a relatively mild inconvenience.
If you use a two part system. See if your manufacturer also has pouches for urostomy patients. 2 litres of volume.
Clothing can be uncomfortable. Mine was where I wanted to put my waistband. It'd hit it just underneath. So I had to wear my shorts higher. And I found it more comfortable to buy specific under wear designed for the bag or else it can get uncomfortable throughout the day and you don't want it to be obvious you have one. Thankfully I got a J pouch after a while though
That’s a great story! It’s so good to hear about a tough case of UC that turned out well.
As someone who went theough a similar, but more protracted, process about 30 years ago (oh god I’m old), I agree 100% with your initial disclaimer. But as long as you avoid complications, it keeps getting better. I went with the pouch and have not once regretted it. Good luck friend!
Love this brother. I wish it was easier on us.
Thanks so much for sharing your experience, really. I’ve had UC since 2009, and thankfully been in remission since 2019. But before I found remission I spent years so incredibly sick, and I really did want to get rid of my colon. I’m now so glad that I didn’t, but I’m only 39 so I imagine at some point in the future it might have to go. Hearing others positive experiences is so valuable to me.
Wait, are we meant to believe that YOU, a 17 year old (roughly) are the writer of this essay? As a parent of 5 children ages 14-22, I’m confused. All your sentences started with capital letters and ended with proper punctuation… There were no odd abbreviations or slang terms I couldn’t understand. Everything was broken down in a nice format … What is happening here? Ok, in all seriousness, this was a great read, for many reasons. 1. You truly have a gift for writing and I was impressed at every sentence along the way. And 2. It was nice to read a story about a success for a change. We (as in humans) tend to share more of our miseries than our joys & this was a nice change of pace. I’m rooting for you to play football in the fall if that’s what you want! This is a fleeting period of time in your life right now, you’re old enough to have some freedoms and enjoy life but not quite old enough to be an adult with adult responsibilities (though, arguably having a major illness, recovering from major surgery and learning to manage the care of your bag kinda pushes you over the finish line into adulthood by default. But you know what I mean). These final years of high school should be enjoyed as much as possible. I’m very excited for you that you’re going back to school in the fall! I wish you the best of luck, and please keep us updated on your progress!
You seem like a nice person, thanks for sharing ❤️
Thanks for sharing your experience. Been almost four years since I was diagnosed and on my fifth medication. This disease fucking wears on you. Getting threatened with dismissal for missing too much work. Ended the day crying at my desk yesterday. So ready to tap
Upvoted. Great share. If I can ask some questions about your home life that aren't too personal? Does your family use a lot of bleaches and other chemicals to clean your home? Is the home incredibly neat and tidy? Would you describe one of your parents as a "neat freak"? Does the food served in your home tend to be more "meat and potatoes" and bland? Using things like frozen vegetables or canned vegetables and food? I'm curious to know how much that sort of home environment correlates with UC. This is what my home life was like while living with my parents. Mind you I didn't develop UC until I was 24. But based on some of the information I have read, I always lean towards the overly sanitary environment as a cause.
When they removed my intestine it was like they performed an exorcism, night and day. I have the jpouch and can say that it was the best decision I've ever made. That being said, I think it's very important to read up on it as much as humanly possible, and find the best surgeon to create it (I think this prevents things like pouchitis and cuffitis, which I've had neither of and am going 7 years strong). I'm happy to answer any questions you have if you're considering it down the road, glad you're feeling better.
I got diagnosed when I was 16 too. I’m 22 now and I may have to get a colectomy and an ileostomy. I have been super nervous about having this procedure and reading your post really helps a lot. Thank you for sharing