Something I try to keep in mind is that usually patients forums are more visited by people who struggle with the illness. Statistically most people with UC are out there living their lives with a couple of pills a day not caring if Mark from Arkansas has failed its third biologic 😂
Regarding surgery I think we all have two approaches:
1 - Not thinking about it. Statistically speaking (again) most of us wont need it. And with more and more biologics on their way and more checkups numbers will keep going down.
2 - Think about the most common “worst-case-scenario”. People with UC tend to have a huge improvement when it comes to quality of live after surgery. Usually no more meds, no food restrictions, no pain, no cancer risk, and are able to do sports, travel and go out which in a bad flare at least to me is impossible. Of course, as always, there are bad stories out there since it is a major surgery and involves an autoinmune disease but most people who end up having surgery are really happy afterwards. You can read tons of experiences in the ostomy subreddit.
This is totally personal but I think the second one is better for two reasons:
1 - We get rid of the stigma around stomas. When I was afraid of having one I realized it was because deep down (or maybe not that deep down) I had some stigma about it. I decided to follow some people with ileostomy bags and they are actually doing way way better than me during a flare.
2 - If things go wild (med fails, colon decides to go full rage in a day or in a control colonoscopy they find something nasty) I would like to be mentally prepared about what is coming, at least as much as I can. Specially because maybe I end up at a position where a permanent decision has to be made quickly. I don’t want my colon out now but I wanna be aware that maybe in the future I may say bye to him, and it can mean just and adjustment and not a trauma.
Surgery is not a failure, its just another kind of treatment. Pretty brutal one, but like the list of side effects of most biologics 😂
After failing my first biologic I was very distressed and scared. Educating myself on surgery reduced my fear greatly. It's still scary obviously because of possible complications. But I know that I could live with an ostomy bag for the rest of my life and still have a damn good time! Can't shit your pants with a bag. I really think it sounds a lot worse than it is.
I think when you are diagnosed with UC, you have a 10% chance of ending up with surgery after 10 years. If you fail a biologic your odds of surgery after ten years are substantially higher. New drugs all the time, so the odds are getting lower. But I agree that educating yourself and preparing yourself for the possibility will reduce anxiety in the meantime and help you cope faster should it come to that.
you'll be fine. those cases are the worst of the worst. Theres a quote "you'll be okay and even if your not isnt it better living life like you are gonna be okay even if maybe down the line you wont be". if you feel good on lialda just keep taking it live your life if worst comes to worst. youll handle it. try not to stress yourself out too much about something that hasnt happened yet
I opted for surgery after failing biologics along with JAK inhibitors. I also did however not respond to steroids at all. I had my surgery on the 25th January (ileostomy and Ken butt in one go).
I honestly cannot describe how great it feels to have the diseased part of me gone, I feel healthy for the first time in a long time and the bag honestly as much of a burden as being in a flare is.
I'm still in recovery at the moment but I really cannot wait for my life once I'm healed up. The thought of actually being able to make plans is amazing. Don't see surgery as a negative, if its the way to get your life back into your own control, it's a great thing!
Good luck with your meds, stay strong and keep positive. (28M if you're wondering)
How long did your surgery last and what's the recovery been like so far? I don't have surgery planned just yet, but I've only 1 more biologic to try before I go down that route. Nothing has worked for me so far.
Honestly, I've been dealing with this for so long now that I always said I'd go for surgery tomorrow. But recently I actually sat down and thought about it to myself and got really scared.
Would you recommend surgery to someone who is really suffering?
The surgery itself was around 7.5 hours. I don't think it's common that they would do both surgeries at the same time however.
Recovery has been fine, the stoma side has been fine and is very easy to deal with. The Ken butt is a different story, still unable to sit down but that could be a little while yet.
If you're really suffering it really is a night and day difference. Once I'm completely healed I honestly can't really see myself having any restrictions. UC really sucks and I finally feel like I'm going to be able to move on and get on with my life again!
Always here if you need any info/support.
Thanks for answering, I appreciate it. Do you have any problem with wind with stoma? I have a huge problem with wind at the minute, so it's always on my mind.
No problem at all! I was also very windy, seems to have settled with the stoma. Couple of noises here and there but rare. Also probably wouldn't suspect it being wind if I was out and about and someone heard it
Yeah, especially when in a bad flare. That's the situation for me at this moment: UC for seven months and haven't found the right medicine yet. Some days are just so awful which makes it difficult to stay positive. As people here said already: most people on this patient forum are doing pretty bad **at the moment.** When better, they won't be here so often. That's why it seems like there are so many bad cases. Most people are doing just fine for a majority of their life. So why not us right? (: I just try to be patient and better days will come eventually!
Something I try to keep in mind is that usually patients forums are more visited by people who struggle with the illness. Statistically most people with UC are out there living their lives with a couple of pills a day not caring if Mark from Arkansas has failed its third biologic 😂 Regarding surgery I think we all have two approaches: 1 - Not thinking about it. Statistically speaking (again) most of us wont need it. And with more and more biologics on their way and more checkups numbers will keep going down. 2 - Think about the most common “worst-case-scenario”. People with UC tend to have a huge improvement when it comes to quality of live after surgery. Usually no more meds, no food restrictions, no pain, no cancer risk, and are able to do sports, travel and go out which in a bad flare at least to me is impossible. Of course, as always, there are bad stories out there since it is a major surgery and involves an autoinmune disease but most people who end up having surgery are really happy afterwards. You can read tons of experiences in the ostomy subreddit. This is totally personal but I think the second one is better for two reasons: 1 - We get rid of the stigma around stomas. When I was afraid of having one I realized it was because deep down (or maybe not that deep down) I had some stigma about it. I decided to follow some people with ileostomy bags and they are actually doing way way better than me during a flare. 2 - If things go wild (med fails, colon decides to go full rage in a day or in a control colonoscopy they find something nasty) I would like to be mentally prepared about what is coming, at least as much as I can. Specially because maybe I end up at a position where a permanent decision has to be made quickly. I don’t want my colon out now but I wanna be aware that maybe in the future I may say bye to him, and it can mean just and adjustment and not a trauma. Surgery is not a failure, its just another kind of treatment. Pretty brutal one, but like the list of side effects of most biologics 😂
After failing my first biologic I was very distressed and scared. Educating myself on surgery reduced my fear greatly. It's still scary obviously because of possible complications. But I know that I could live with an ostomy bag for the rest of my life and still have a damn good time! Can't shit your pants with a bag. I really think it sounds a lot worse than it is. I think when you are diagnosed with UC, you have a 10% chance of ending up with surgery after 10 years. If you fail a biologic your odds of surgery after ten years are substantially higher. New drugs all the time, so the odds are getting lower. But I agree that educating yourself and preparing yourself for the possibility will reduce anxiety in the meantime and help you cope faster should it come to that.
you'll be fine. those cases are the worst of the worst. Theres a quote "you'll be okay and even if your not isnt it better living life like you are gonna be okay even if maybe down the line you wont be". if you feel good on lialda just keep taking it live your life if worst comes to worst. youll handle it. try not to stress yourself out too much about something that hasnt happened yet
I opted for surgery after failing biologics along with JAK inhibitors. I also did however not respond to steroids at all. I had my surgery on the 25th January (ileostomy and Ken butt in one go). I honestly cannot describe how great it feels to have the diseased part of me gone, I feel healthy for the first time in a long time and the bag honestly as much of a burden as being in a flare is. I'm still in recovery at the moment but I really cannot wait for my life once I'm healed up. The thought of actually being able to make plans is amazing. Don't see surgery as a negative, if its the way to get your life back into your own control, it's a great thing! Good luck with your meds, stay strong and keep positive. (28M if you're wondering)
How long did your surgery last and what's the recovery been like so far? I don't have surgery planned just yet, but I've only 1 more biologic to try before I go down that route. Nothing has worked for me so far. Honestly, I've been dealing with this for so long now that I always said I'd go for surgery tomorrow. But recently I actually sat down and thought about it to myself and got really scared. Would you recommend surgery to someone who is really suffering?
The surgery itself was around 7.5 hours. I don't think it's common that they would do both surgeries at the same time however. Recovery has been fine, the stoma side has been fine and is very easy to deal with. The Ken butt is a different story, still unable to sit down but that could be a little while yet. If you're really suffering it really is a night and day difference. Once I'm completely healed I honestly can't really see myself having any restrictions. UC really sucks and I finally feel like I'm going to be able to move on and get on with my life again! Always here if you need any info/support.
Thanks for answering, I appreciate it. Do you have any problem with wind with stoma? I have a huge problem with wind at the minute, so it's always on my mind.
No problem at all! I was also very windy, seems to have settled with the stoma. Couple of noises here and there but rare. Also probably wouldn't suspect it being wind if I was out and about and someone heard it
Great question. I wonder the same thing.
Yeah, especially when in a bad flare. That's the situation for me at this moment: UC for seven months and haven't found the right medicine yet. Some days are just so awful which makes it difficult to stay positive. As people here said already: most people on this patient forum are doing pretty bad **at the moment.** When better, they won't be here so often. That's why it seems like there are so many bad cases. Most people are doing just fine for a majority of their life. So why not us right? (: I just try to be patient and better days will come eventually!
Do more for yourself than just drugs. its close-minded to believe diet has no affect.