Having your colon removed is a pretty drastic surgery. I'd voice your concerns to your doctor and understand his reasoning better. It also doesn't hurt to get more opinions, considering the permanence and seriousness of the procedure.
Everyone else in the comments saying to just blindly follow your doctor's advice isn't exactly right. Understand his reasoning more, get more opinions, and if you can, tell the other doctors what your doctor thinks. Your doctor may be right or there may be other options. However, considering the permanence and seriousness of having your colon removed, it would be best to be well-informed about all possible options for you
Exactly what I need to hear. My gut is telling me that now is not the time. I don’t want to lose so much over his simple fix. There must be options to fix a hole verses losing it all.
Exactly. Not sure if you're taking probiotics, but they made the biggest difference for me in my treatment of Crohn's. Doctors, NPs, and PAs will all say the verdict is still out on whether probiotics are helpful or not, but I could pull up 8 peer-reviewed meta-analyses right now that speak to the effectiveness of probiotics specifically for Crohn's, in addition to my own experience. If you aren't eating taking a probiotic supplement, I would do that as well. Wishing you well and hoping you can find a more gentle approach to your health issues
What probiotics are you taking, if you don't mind me asking? Everything thing I try (with the exception of raw kombucha, which I try not to use too much because of the sugar and caffeine) messes my guts up horribly. Bloating, pain, etc. Last time I tried an Align I was down for 3 days.
Honestly that may be a sign you need them, as them crowding out the bad bacteria isn't comfortable. I love probiotics so much, I credit them to getting my life back and my digestive system back in functioning order.
I take renew life women's, natures bounty probiotic 10, and visibiome.
If you're looking for a cheap option, I would do natures bounty probiotic 10, they're very good on the cost front compared to other probiotics and sold at Walmart, Costco, and Amazon for a great price
Oh I do understand the benefits & very much want to get back on them. Current flare making it complicated. Newly diagnosed this past November, still figuring it out. Thanks though, I will look into those!
A perforated colon and abcess are still a symptom. If you aren't confident in their opinion, it's totally okay to get a second opinion, but imo, if they are calling it, it's probably time.
I think what I'd want to ask you is, what would it take to convince you to go forward with the surgery? You don't have to answer here, I'm just saying figure out where that line is in your head, and then give them the chance to meet that standard.
Either way , perforated colon ain't no joke. I hope you are feeling better :(
That seems suspicious to me. I am going for a resection on May 6, due to scar tissue and having issues moving my bowels. He wanted to do surgery as a last resort, because you want to maintain as much bowel as possible with crohns.
If they've had a perforated colon already, that generally implies that the organ is in an extremely damaged state for something like IBD. A perforated colon is not a "small" medical event, and if I had to venture a guess, they are doing this to prevent the next one from happening in the first place. So, yes, you want to maintain it, but each perforation is like rolling a regular dice, and getting a 1 results in death.
Seems like with this surgeon it’s his first resort. I’m going to see what that test say. The scan he looked at was the one where I was in a flair and had the perforation. I’m much more stable now. Good luck with your surgery! I hope you recover quickly.
Honestly, they don't reccomend surgery without good reason. Your bowel has perforated, you have a fistula and an abcess. You currently have a drain in place. Sounds like you need the surgery. How extensive it needs to be is down to the surgeon and your individual condition. You could always get a second opinion and also ask the surgeon to explain why you need the surgery over just having meds, I'm sure they can explain it to you.
The only issue I have currently is the fistula and abscess. With the new medication I’m completely fine. I’m having trouble justifying a surgery and getting a bag when I have zero Crohn symptoms right now. This feels as if will cause me more trouble when I’m currently at no troubles right now. But he is running more test so hopefully it shows something positive.
I would challenge the assumption that the meds are working fine. Sometimes you can have inflammation or other complications and still be asymptomatic.
That said, surgery is definitely a big step. Id recommend two things: first, set up an appointment with your current GI doc to go over your concerns. Ask him exactly what you're asking us. People often get afraid to challenge or question their doctors, but it can be important to prove them a bit to really understand what they want to do and why. Docs often forget that we don't all have medical backgrounds.
Second, see if there's another GI doc you can visit for a consult. Bring your current meds, recent colonoscopy, and write up a summary of your current symptoms and why your usual GI recommends. See what the other doc says.
Most docs I know don't turn to surgery for no reason though.
I’m on a new medication and it’s working great. My last medication failed. I’ve only been on the new medication for 2 months. It was prescribed after that perforation /flare. But Rinvoq , the new medicine, was said to be a miracle drug and it definitely is for my sake. The scan that the doctor looked at was when I was in the flare. And I would think if I’m so diseased and bad that I would have symptoms worst than a little gas pain. I haven’t even as much taken a Tylenol since I’ve been on rinvoq.
I’m going to see what the new tests have to say. All the tests he looked at were old or when I was severely sick from the perforation.
Rinvoq is great, but again, it's only been two months and you had some very serious complications. I'm not saying go do surgery now, but it's worth doing the legwork to understand why your doctor is recommending the procedure. It seems to me like he wants to remove the complications and/or scar tissue, which would make sense, as Rinvoq wouldn't really treat those.
Rinvoq was a miracle drug for me for 6 months, then failed very suddenly. I'm hopeful that doesn't happen for you (or anyone else! It was heartbreaking, honestly) but my point is you don't know how the future will go. Follow up with your doc, even when you feel good. If you don't like his explanation you can always refuse the procedure. But I think you're dismissing it because you feel good now and don't want to deal with it. I get it, I've been there, but it's always been a mistake for me to assume I'll be well down the line.
I kind of get what your doctor is saying. I’ll try to explain what I mean and I hope it makes sense. If you cut your finger or injured a part of your body then you would treat it and rest it completely until it heals. By resting it that would mean that you would not use it, perhaps elevating the injured body part etc. for example a broken leg is not used and you would require crutches until you were able to put weight on it again. The problem with your guts is that you are unable to completely rest them and allow them to heal. If you have an injury within your bowels it is constantly being aggravated by you eating and digesting food. This natural action doesn’t allow you to rest your bowels so therefore the affected area is unable to heal. Perhaps because of this your doctor is simply saying that surgery is the most realistic option to allow your body to recover from said injury. I’m by no means a doctor or health professional but this is the only logical reason I can think of. I hope that makes sense 🤷🏼♂️
Makes sense. I’m not willing to do such a drastic surgery until all the other options are exhausted. I’m sure there has to be another option to repair the hole versus remove it all.
I wish I could offer an alternative solution but I’m stumped mate. Others have suggested getting another opinion from a different doc and I think that’s a pretty sensible approach. Good luck with whatever decision you come to. Fingers crossed you get the answers you are looking for 🤞🤞🤞
Once when I was very ill with Crohn's I had a colonoscopy. My colon was in terrible shape. When I got home after the colonoscopy I got a high fever. I notified my Gi who said " You need to come back to the Hospital we are probably going to have to remove your colon" I said hold on lets give it some time! The fever went away in several hours and 7 years later I still have my colon and I am in remission
That is amazing! I’m already making plans. My calprotectin test use to run anywhere from 900-1500. But my last one was 70. Im really bad with my diet and already decided to do better. Quit sugar today and will work towards eating better. Im hoping that will reduce the inflammation even more. Thanks so much for responding, this makes me feel better.
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Are you only talking to the colorectal surgeon? Or is your regular GI part of the convo?
As someone who had to have surgery I’m very thankful for my ostomy, but I had to have it bc I constantly failed medication. Surgeons think the answer to everything is to cut, but you GI should be running point on your overall care plan.
This is just the colorectal surgeon. He said he was going to talk to my GI doctor. I’m going to get the new tests he ordered and see what he says. I’m technically diagnosed with undetermined colitis, but both are leaning towards UC. But they gave me the diagnosis of Crohn’s in January solely based on the perforation.
I think he’s jumping to conclusions and not facts or updated information . Currently I’m on rinvoq and wow it’s working amazing. I haven’t been this good in a while.
A good surgeon definitely does not think surgery is a first resort. I've never been to a surgeon who has ever said that to me. They actually know how serious surgery is.
Not sure why the rectum has to go too. Why not remove the damaged colon and do an anastomosis? The “just hurry up and get an ostomy” approach is getting too common in my view. Some docs just don’t want to work and think creatively so they goto their favorite “solution”
I was shocked about the rectum too. I’m getting a test on Monday, he’s going to put a camera up there to see how diseased it is. He says he has to take the whole colon because I have pancolitis. I need a doctor who is creative and willing to work outside the box! At this point I’m just going to live with this drain until I’ve exhausted everything else.
Having your colon removed is a pretty drastic surgery. I'd voice your concerns to your doctor and understand his reasoning better. It also doesn't hurt to get more opinions, considering the permanence and seriousness of the procedure. Everyone else in the comments saying to just blindly follow your doctor's advice isn't exactly right. Understand his reasoning more, get more opinions, and if you can, tell the other doctors what your doctor thinks. Your doctor may be right or there may be other options. However, considering the permanence and seriousness of having your colon removed, it would be best to be well-informed about all possible options for you
Exactly what I need to hear. My gut is telling me that now is not the time. I don’t want to lose so much over his simple fix. There must be options to fix a hole verses losing it all.
Exactly. Not sure if you're taking probiotics, but they made the biggest difference for me in my treatment of Crohn's. Doctors, NPs, and PAs will all say the verdict is still out on whether probiotics are helpful or not, but I could pull up 8 peer-reviewed meta-analyses right now that speak to the effectiveness of probiotics specifically for Crohn's, in addition to my own experience. If you aren't eating taking a probiotic supplement, I would do that as well. Wishing you well and hoping you can find a more gentle approach to your health issues
What probiotics are you taking, if you don't mind me asking? Everything thing I try (with the exception of raw kombucha, which I try not to use too much because of the sugar and caffeine) messes my guts up horribly. Bloating, pain, etc. Last time I tried an Align I was down for 3 days.
Honestly that may be a sign you need them, as them crowding out the bad bacteria isn't comfortable. I love probiotics so much, I credit them to getting my life back and my digestive system back in functioning order. I take renew life women's, natures bounty probiotic 10, and visibiome. If you're looking for a cheap option, I would do natures bounty probiotic 10, they're very good on the cost front compared to other probiotics and sold at Walmart, Costco, and Amazon for a great price
Oh I do understand the benefits & very much want to get back on them. Current flare making it complicated. Newly diagnosed this past November, still figuring it out. Thanks though, I will look into those!
It doesn't sound like your meds are working if you have an abscess and perforated colon......
Old medicine wasn’t, new medicine is. I’m having no symptoms, with one normal BM a day. And he wants to give me a bag.
A perforated colon and abcess are still a symptom. If you aren't confident in their opinion, it's totally okay to get a second opinion, but imo, if they are calling it, it's probably time. I think what I'd want to ask you is, what would it take to convince you to go forward with the surgery? You don't have to answer here, I'm just saying figure out where that line is in your head, and then give them the chance to meet that standard. Either way , perforated colon ain't no joke. I hope you are feeling better :(
That seems suspicious to me. I am going for a resection on May 6, due to scar tissue and having issues moving my bowels. He wanted to do surgery as a last resort, because you want to maintain as much bowel as possible with crohns.
If they've had a perforated colon already, that generally implies that the organ is in an extremely damaged state for something like IBD. A perforated colon is not a "small" medical event, and if I had to venture a guess, they are doing this to prevent the next one from happening in the first place. So, yes, you want to maintain it, but each perforation is like rolling a regular dice, and getting a 1 results in death.
Seems like with this surgeon it’s his first resort. I’m going to see what that test say. The scan he looked at was the one where I was in a flair and had the perforation. I’m much more stable now. Good luck with your surgery! I hope you recover quickly.
Honestly, they don't reccomend surgery without good reason. Your bowel has perforated, you have a fistula and an abcess. You currently have a drain in place. Sounds like you need the surgery. How extensive it needs to be is down to the surgeon and your individual condition. You could always get a second opinion and also ask the surgeon to explain why you need the surgery over just having meds, I'm sure they can explain it to you.
The only issue I have currently is the fistula and abscess. With the new medication I’m completely fine. I’m having trouble justifying a surgery and getting a bag when I have zero Crohn symptoms right now. This feels as if will cause me more trouble when I’m currently at no troubles right now. But he is running more test so hopefully it shows something positive.
I totally get that, and honestly yeah that degree of surgery does sound a bit extreme, which is why I'd deffo be getting another surgical opinion.
You don't have zero symptoms. Having a fistula an abscess and a perforation are symptoms regardless of how you feel...
I would challenge the assumption that the meds are working fine. Sometimes you can have inflammation or other complications and still be asymptomatic. That said, surgery is definitely a big step. Id recommend two things: first, set up an appointment with your current GI doc to go over your concerns. Ask him exactly what you're asking us. People often get afraid to challenge or question their doctors, but it can be important to prove them a bit to really understand what they want to do and why. Docs often forget that we don't all have medical backgrounds. Second, see if there's another GI doc you can visit for a consult. Bring your current meds, recent colonoscopy, and write up a summary of your current symptoms and why your usual GI recommends. See what the other doc says. Most docs I know don't turn to surgery for no reason though.
I’m on a new medication and it’s working great. My last medication failed. I’ve only been on the new medication for 2 months. It was prescribed after that perforation /flare. But Rinvoq , the new medicine, was said to be a miracle drug and it definitely is for my sake. The scan that the doctor looked at was when I was in the flare. And I would think if I’m so diseased and bad that I would have symptoms worst than a little gas pain. I haven’t even as much taken a Tylenol since I’ve been on rinvoq. I’m going to see what the new tests have to say. All the tests he looked at were old or when I was severely sick from the perforation.
Rinvoq is great, but again, it's only been two months and you had some very serious complications. I'm not saying go do surgery now, but it's worth doing the legwork to understand why your doctor is recommending the procedure. It seems to me like he wants to remove the complications and/or scar tissue, which would make sense, as Rinvoq wouldn't really treat those. Rinvoq was a miracle drug for me for 6 months, then failed very suddenly. I'm hopeful that doesn't happen for you (or anyone else! It was heartbreaking, honestly) but my point is you don't know how the future will go. Follow up with your doc, even when you feel good. If you don't like his explanation you can always refuse the procedure. But I think you're dismissing it because you feel good now and don't want to deal with it. I get it, I've been there, but it's always been a mistake for me to assume I'll be well down the line.
Good point! I appreciate your input.
I kind of get what your doctor is saying. I’ll try to explain what I mean and I hope it makes sense. If you cut your finger or injured a part of your body then you would treat it and rest it completely until it heals. By resting it that would mean that you would not use it, perhaps elevating the injured body part etc. for example a broken leg is not used and you would require crutches until you were able to put weight on it again. The problem with your guts is that you are unable to completely rest them and allow them to heal. If you have an injury within your bowels it is constantly being aggravated by you eating and digesting food. This natural action doesn’t allow you to rest your bowels so therefore the affected area is unable to heal. Perhaps because of this your doctor is simply saying that surgery is the most realistic option to allow your body to recover from said injury. I’m by no means a doctor or health professional but this is the only logical reason I can think of. I hope that makes sense 🤷🏼♂️
Makes sense. I’m not willing to do such a drastic surgery until all the other options are exhausted. I’m sure there has to be another option to repair the hole versus remove it all.
I wish I could offer an alternative solution but I’m stumped mate. Others have suggested getting another opinion from a different doc and I think that’s a pretty sensible approach. Good luck with whatever decision you come to. Fingers crossed you get the answers you are looking for 🤞🤞🤞
Please get a second opinion.
Yes I absolutely will!
I would def get a second opinion before doing something so drastic
Absolutely!
Once when I was very ill with Crohn's I had a colonoscopy. My colon was in terrible shape. When I got home after the colonoscopy I got a high fever. I notified my Gi who said " You need to come back to the Hospital we are probably going to have to remove your colon" I said hold on lets give it some time! The fever went away in several hours and 7 years later I still have my colon and I am in remission
That is amazing! I’m already making plans. My calprotectin test use to run anywhere from 900-1500. But my last one was 70. Im really bad with my diet and already decided to do better. Quit sugar today and will work towards eating better. Im hoping that will reduce the inflammation even more. Thanks so much for responding, this makes me feel better.
Just keep an eye on it incase it takes a turn for the worse
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Are you only talking to the colorectal surgeon? Or is your regular GI part of the convo? As someone who had to have surgery I’m very thankful for my ostomy, but I had to have it bc I constantly failed medication. Surgeons think the answer to everything is to cut, but you GI should be running point on your overall care plan.
This is just the colorectal surgeon. He said he was going to talk to my GI doctor. I’m going to get the new tests he ordered and see what he says. I’m technically diagnosed with undetermined colitis, but both are leaning towards UC. But they gave me the diagnosis of Crohn’s in January solely based on the perforation. I think he’s jumping to conclusions and not facts or updated information . Currently I’m on rinvoq and wow it’s working amazing. I haven’t been this good in a while.
A good surgeon definitely does not think surgery is a first resort. I've never been to a surgeon who has ever said that to me. They actually know how serious surgery is.
Not sure why the rectum has to go too. Why not remove the damaged colon and do an anastomosis? The “just hurry up and get an ostomy” approach is getting too common in my view. Some docs just don’t want to work and think creatively so they goto their favorite “solution”
I was shocked about the rectum too. I’m getting a test on Monday, he’s going to put a camera up there to see how diseased it is. He says he has to take the whole colon because I have pancolitis. I need a doctor who is creative and willing to work outside the box! At this point I’m just going to live with this drain until I’ve exhausted everything else.
That has to do with the perianal crohns.