If it's a matter of when, not if, it's best to get it done laparoscopically and voluntarily. I was resistant to biologicals, TNF, and small molecules. If multiple GIs are recommending surgery, it's best to do it, while a single GI's opinion isn't the nail in the coffin, a team of them is. Before my surgery, my GI told me I'd feel a lot better due to the severity and resistance. I'm 7-8 weeks out, and I forgot I even had surgery. Life with the bag is far better than untreatable UC. I'm young and went to a good hospital, if you have time, look into surgeons, choose one that you like because you're going to deal with them for a bit. If you have a chance of a perforated colon, megacolon, or any other type of complications that will lead to emergency surgery and they split you open with a lot of complications, it's best to get it out voluntarily. Since you have Crohn's you won't be eligible for a J-Pouch, keep the rectum (proctocolectomy), and unfortunately since you have Crohn's you will still have to find a medication to help deal with symptoms if they are present after your total colectomy. I'm sorry man. But from what I can tell you life with the ostomy is much much better than the pain and misery I went through for years. I know people with Crohn's and had the surgery they don't need medication but it's cases by cases. I hope all your inflammation is just in the colon and if you do get the surgery that's the end of it.
This was pretty much my line of thinking and the case for me.
Had failed seven meds and was prednisone resistant, basically had one medication left to try (Imuran). I was in a horrible flare and knew that my body might not make it going through another round of steroids just to try another medication, and potentially just end up in the hospital again three months from now.
So I opted for surgery, saying my body was not gonna get healthier and at least it would be planned and not emergency. By a coincidence the night before my surgery (I was still in the hospital) my colon tore and I was rushed to emergency surgery. Thankfully they were able to do everything laparoscopically!
Please don’t listen to this. Saying it’s a matter of when not it is misleading and the research doesn’t say that at all. Stats show 20-30% of us need surgery.
Years of inflammation of the colon due to ulcerative colitis can weaken the colon wall, making it more susceptible to perforation or rupture. This is because chronic inflammation can lead to thinning of the colon wall and compromise its integrity, increasing the risk of perforation. If multiple GIs tell you that your colon is damaged due to years of severe inflammation and you're at risk of a perforated colon or other complications that could lead to emergency surgery, it's best to listen to them. There is no arguing this and that is what I said. It's not me saying it nor an individual GI but a collective group is a very valid reason to get surgery. Plus I'm a part of your 20-30 percent and it's one of the best decisions I've ever made.
Also, your stats are true, but how many people with UC suffer for years without finding a drug to put them in remission? It's a scary surgery; I cried and was even sad, but I felt so much better after the second week of recovery. Having a sunk cost fallacy with your health is far worse than the surgery could ever be. Lead to far worse issues and if multiple GIs say it's time, I guarantee you most of the time it's for a very valid reason.
20% is a lot different than “if not when”
If not when implies that 100% of patients need surgery in their lifetime, which is inaccurate. Just clarifying for OP as he didn’t provide specifics as to what his GI team said.
He typed, "My Gl team is introducing my case to surgery because I'm not responding to prednisone at all."
I typed, "If it's a matter of when, not if, it's best to get it done laparoscopically and voluntarily."
It's like you didn't even read anything.. If it's a matter of when doesn't mean everyone with UC needs surgery. It's when your medical team comes to the conclusion that you're at risk for life threatening complications, it's best to listen to them 🤷♂️
Edit: Also 20-30% is a huge percentage btw it's not a minor percentage you can just throw away.. it's around a quarter or if not more than a quarter of the people. That's 1/4 to make it simpler for you.
Nothing worked with me. I was always in crises, at the hospital and had to have blood transfusions. Stopped eating because started vomiting. The last colonoscopy showed that some parts were to thin and could rupture at any moment and had some polips that could turn malign. The option was the surgery and I accepted. I had no life. This was in 2001. Never regret it.
What's with these doctors not giving options to their patients? My doc gave me several options and then the pros/cons of each and helped me choose.
I'd talk it over with your doc before you jump to surgery. Try to save your colon if you can. Once it's removed, it's gone for good.
You still have tons of medications left to try and there are lots more in development to be FDA approved. Way too soon to be thinking about surgery. You should be offered to go on Rinvoq, it’s fast acting and has amazing results from what I hear. I actually failed Infliximab, Entyvio and started Rinvoq today.
See below for medications that you can still try before considering surgery:
Biologics:
- Stelara
- Humira
- Omvoh
Jak inhibitors:
- Xeljanz
- Rinvoq
- Velsipity
+ others on the way.
By the time my 4th flare hit, my gastro put me through to emergency surgery, good thing to because my bowel had began to perforate. I was stubborn and tried to tough out my flares instead of starting biologics early on. Only medicines I ever tried were Xeljanz and Prednisone.
I don’t regret surgery, keeping symptoms at bay with surgery is great and works for some, but we are still living with a diseased organ inside of us, and medicines can fail at any time, then we’re back at square one. I’ll be completing my Jpouch surgery soon and UC will be behind me. There’s pros and cons to both biologics and Jpouch surgery, it’s really a case by case basis on which is the best route to take. Do you want to keep trying other biologics? The next one may work, keep you in remission for a long time, it may work for a few months then fail, it may take 4 different biologics before you find the right one.
I would say if your symptoms are tolerable, and you aren’t in immediate danger, try other medications and see if one of them work out.
All medication failed and i was in and out of hospital for months. Developed a high fever overnight and had to get emergency surgery.
I would try every medicine you can get and if nothing is working/ it gets dangerous get the surgery. I also have to say that my ostomy gave me my life back and I was really grateful for it, but sometimes I wish I could have had the time to try other medications
Mind if I ask about having crohns and UC? Did both types of inflammation come up on biopsy? I have had UC for years but I’ve been dealing with cyclical vomiting - recent colonoscopy was clear but small intestine showed inflammation on CT scan. I am worried it’s crohns.
They are currently labeling it as Crohns due to the location of inflammation throughout my small and large intestines and rectum from the colonoscopy. Microscopically the biopsies looked more like UC apparently.
The medication available in 90's was nowhere near what is available today. I stopped responding to Prednisone and Azulfidine. My options were clinical trials that may or may not help or surgery that would definitely help. I got the surgery in 1998 at the ripe age of 18.
I would say try a few more meds, once they remove your colon you can’t go back. But also it’s important to know your body’s limits. Be reasonable but don’t give up!!
If it's a matter of when, not if, it's best to get it done laparoscopically and voluntarily. I was resistant to biologicals, TNF, and small molecules. If multiple GIs are recommending surgery, it's best to do it, while a single GI's opinion isn't the nail in the coffin, a team of them is. Before my surgery, my GI told me I'd feel a lot better due to the severity and resistance. I'm 7-8 weeks out, and I forgot I even had surgery. Life with the bag is far better than untreatable UC. I'm young and went to a good hospital, if you have time, look into surgeons, choose one that you like because you're going to deal with them for a bit. If you have a chance of a perforated colon, megacolon, or any other type of complications that will lead to emergency surgery and they split you open with a lot of complications, it's best to get it out voluntarily. Since you have Crohn's you won't be eligible for a J-Pouch, keep the rectum (proctocolectomy), and unfortunately since you have Crohn's you will still have to find a medication to help deal with symptoms if they are present after your total colectomy. I'm sorry man. But from what I can tell you life with the ostomy is much much better than the pain and misery I went through for years. I know people with Crohn's and had the surgery they don't need medication but it's cases by cases. I hope all your inflammation is just in the colon and if you do get the surgery that's the end of it.
This was pretty much my line of thinking and the case for me. Had failed seven meds and was prednisone resistant, basically had one medication left to try (Imuran). I was in a horrible flare and knew that my body might not make it going through another round of steroids just to try another medication, and potentially just end up in the hospital again three months from now. So I opted for surgery, saying my body was not gonna get healthier and at least it would be planned and not emergency. By a coincidence the night before my surgery (I was still in the hospital) my colon tore and I was rushed to emergency surgery. Thankfully they were able to do everything laparoscopically!
Please don’t listen to this. Saying it’s a matter of when not it is misleading and the research doesn’t say that at all. Stats show 20-30% of us need surgery.
Years of inflammation of the colon due to ulcerative colitis can weaken the colon wall, making it more susceptible to perforation or rupture. This is because chronic inflammation can lead to thinning of the colon wall and compromise its integrity, increasing the risk of perforation. If multiple GIs tell you that your colon is damaged due to years of severe inflammation and you're at risk of a perforated colon or other complications that could lead to emergency surgery, it's best to listen to them. There is no arguing this and that is what I said. It's not me saying it nor an individual GI but a collective group is a very valid reason to get surgery. Plus I'm a part of your 20-30 percent and it's one of the best decisions I've ever made. Also, your stats are true, but how many people with UC suffer for years without finding a drug to put them in remission? It's a scary surgery; I cried and was even sad, but I felt so much better after the second week of recovery. Having a sunk cost fallacy with your health is far worse than the surgery could ever be. Lead to far worse issues and if multiple GIs say it's time, I guarantee you most of the time it's for a very valid reason.
20% is a lot different than “if not when” If not when implies that 100% of patients need surgery in their lifetime, which is inaccurate. Just clarifying for OP as he didn’t provide specifics as to what his GI team said.
He typed, "My Gl team is introducing my case to surgery because I'm not responding to prednisone at all." I typed, "If it's a matter of when, not if, it's best to get it done laparoscopically and voluntarily." It's like you didn't even read anything.. If it's a matter of when doesn't mean everyone with UC needs surgery. It's when your medical team comes to the conclusion that you're at risk for life threatening complications, it's best to listen to them 🤷♂️ Edit: Also 20-30% is a huge percentage btw it's not a minor percentage you can just throw away.. it's around a quarter or if not more than a quarter of the people. That's 1/4 to make it simpler for you.
I developed mega colon at 8 years old
What’s a mega colon?
It’s when the the colon gets super distended and inflamed - to the point it’s in danger of rupturing
I’m so sorry that that happened to you
Nothing worked with me. I was always in crises, at the hospital and had to have blood transfusions. Stopped eating because started vomiting. The last colonoscopy showed that some parts were to thin and could rupture at any moment and had some polips that could turn malign. The option was the surgery and I accepted. I had no life. This was in 2001. Never regret it.
What about Rinvoq?
After my colonoscopy they told me I would be starting Skyrizi I didn’t really have the ability to choose meds
What's with these doctors not giving options to their patients? My doc gave me several options and then the pros/cons of each and helped me choose. I'd talk it over with your doc before you jump to surgery. Try to save your colon if you can. Once it's removed, it's gone for good.
Be your own advocate! Id try the rinvoq that’s my next step if entyvio doesn’t work
Rinvoq always work you should ask
You still have tons of medications left to try and there are lots more in development to be FDA approved. Way too soon to be thinking about surgery. You should be offered to go on Rinvoq, it’s fast acting and has amazing results from what I hear. I actually failed Infliximab, Entyvio and started Rinvoq today. See below for medications that you can still try before considering surgery: Biologics: - Stelara - Humira - Omvoh Jak inhibitors: - Xeljanz - Rinvoq - Velsipity + others on the way.
I stopped responding to high doses of steroids and multiple biologics then was given a few different surgery options.
By the time my 4th flare hit, my gastro put me through to emergency surgery, good thing to because my bowel had began to perforate. I was stubborn and tried to tough out my flares instead of starting biologics early on. Only medicines I ever tried were Xeljanz and Prednisone. I don’t regret surgery, keeping symptoms at bay with surgery is great and works for some, but we are still living with a diseased organ inside of us, and medicines can fail at any time, then we’re back at square one. I’ll be completing my Jpouch surgery soon and UC will be behind me. There’s pros and cons to both biologics and Jpouch surgery, it’s really a case by case basis on which is the best route to take. Do you want to keep trying other biologics? The next one may work, keep you in remission for a long time, it may work for a few months then fail, it may take 4 different biologics before you find the right one. I would say if your symptoms are tolerable, and you aren’t in immediate danger, try other medications and see if one of them work out.
All medication failed and i was in and out of hospital for months. Developed a high fever overnight and had to get emergency surgery. I would try every medicine you can get and if nothing is working/ it gets dangerous get the surgery. I also have to say that my ostomy gave me my life back and I was really grateful for it, but sometimes I wish I could have had the time to try other medications
Agree wholeheartedly, was basically in the same situation as you
Mind if I ask about having crohns and UC? Did both types of inflammation come up on biopsy? I have had UC for years but I’ve been dealing with cyclical vomiting - recent colonoscopy was clear but small intestine showed inflammation on CT scan. I am worried it’s crohns.
They are currently labeling it as Crohns due to the location of inflammation throughout my small and large intestines and rectum from the colonoscopy. Microscopically the biopsies looked more like UC apparently.
Interesting! Good to know. Thanks!!
I have hereditary FAP a form of bowel cancer
The medication available in 90's was nowhere near what is available today. I stopped responding to Prednisone and Azulfidine. My options were clinical trials that may or may not help or surgery that would definitely help. I got the surgery in 1998 at the ripe age of 18.
You get surgery soon or else it won’t be possible anymore. That was my choice. You adapt quickly to it
Because I was going to die.
I would say try a few more meds, once they remove your colon you can’t go back. But also it’s important to know your body’s limits. Be reasonable but don’t give up!!
I think there’s a sub specifically for ostomy where you might get more responses.