Jelena- that midline incision you received is something I didn’t have to deal with - thankfully. My surgeon used a Divinci robot to perform my LAR which didn’t require a large midline incision. I had many adhesions which he had to cut through in order to remove the pieces of the colon and rectum. He told me that many surgeons would have given up the laparoscopic approach and performed a midline incision. I’m thankful he persevered and I avoided that big incision. Though he did have to put in a 4 inch incision to provide a means to remove the tumor which was 9 inches long.
Jelena my surgery was successful all clean margins, Chemo and Radiation worked very well he removed part of the colon that disease started in and 4 lympnodes. Me and Bella my ostamy bag lol are having a time, trying several bags, sad part getting second home nurse, really sad that some nurses are not that experienced with illestomy bag. Thanks your videos helped 💙 Eight weeks hopefully reversal surgery will keep you posted.
That’s great news the surgeon got clean margins 🎉👏🏼 And you’re right about the home health nurses…a lot of them don’t have much (or any) experience with ostomies which makes it really hard to get help. I hope you and Bella can find a rhythm and get along soon.
I didn't have this kind of surgery but I had like 30 staples for my knee surgery and I agree having staples is miserable. I had to sleep on my back for months because I couldn't bend my knee.
Dear Jelena, so proud of you. Thank you for sharing your journey in so much detail. It is really helping the survivors and their caretakers a lot. Can you please tell how many lymph nodes showed cancer out of 17 in your case?
@@SurvivorJelena thanks for letting me know. My father has been recently diagnosed with colon cancer and 10 out of 15 lymph nodes showed the infection. :( His surgery is done. He is on stoma bag for now. Has been advised 12 rounds of folfox chemo for over 6 months. We're all really worried.
Jelena - you had a different treatment sequence than I did. I had a stage 3C rectal/sigmoid colon tumor which might explain the difference. My treatment sequence was: 8 cycles of FOLFOX two weeks apart, 28 daily radiation treatments with Xeloda chemo pills and then surgery with an ileostomy. My surgery lasted 8 hours which was 2 hours more than expected.
@@merchseller good news is I’m cancer free. The down side is I struggle daily with bowel movements. Urgency, frequency and diarrhea are the main problems. The surgery I had was called a Low Anterior Resection. There is something called LAR syndrome which approximately 60% of patients suffer from. It’s a result of the surgery and the radiation. If you are having LAR surgery, I would suggest you have a good long talk with your surgeon to review the procedure and the possible side effects. Also I have permanent neuropathy in my feet and fingers from the FOLFOX chemo. I was scheduled for 12 cycles but stopped after 8, due to low platelet counts and neuropathy. I’ve recently read that some oncologists are recommending only 6 cycles of FOLFOX, so you should check that as well. Hope your treatments go well with good outcomes.
Yes, it’s intimidating going in for such a big surgery when you have never had anything so major done before. The first few days are tough, but once you get through that you’ll feel like you can handle anything.
You’re welcome! If you have a family member that’s comfortable with helping with bag changes and you’re comfortable with their help, maybe. If the home health nurse you’re assigned has never worked with ostomies before, you can probably do just as well on your own watching some videos on here on how to care for it and do bag changes.
Thanks for sharing your story... Just had LAR colon surgery myself in August 2020 to remove 7 inches of colon with a 1.5 inches pre cancer tumor on it. I was discharged from hospital 2 days after the surgery and did not have to wear a stool collection bag then return later for reversal surgery as you did .. What was your surgeon’s justification for making you suffer twice ???
Part of my rectum was removed too. When you sew the colon and rectum together there’s a 25% chance of having a leak while it heals, which is a pretty decent chance of having poop leaking into your abdomen. That’s why most people that have rectal cancer end up with an ostomy, either temporary or permanent.
How long did you wait before trying to sleep on your side again (after LAR surgery). I am worried it may cause leakage in my ostomy bag. I really can’t sleep on my back and it’s starting to affect me :(
Max Martian I think I only waited about a week. I’m a side sleeper so it was hard for me to try to sleep on my back too. As soon as it wasn’t painful to roll onto my side I slept that way. If you can adjust the direction you bag is, you can turn it so there is more room for the waste as gravity pulls it down while you sleep. I’m pretty sure I only woke up twice to a catastrophic blowout, but I don’t know if side-sleeping has anything to do with it. Try it once it isn’t painful.
Survivor Jelena wow thanks! I think tonight I am going to give it a try. I literally have been going insane at night. I am at almost 2 weeks since surgery. Had 10 days in the hospital (ileus).
Sorry I didn’t reply sooner Zee! He didn’t get a permanent ostomy, right? Within 3-4 weeks after surgery the discomfort was gone for me. Have you guys called his surgeon to see if they can check to see what may be causing the prolonged pain?
Survivor Jelena no worries hun. He is getting better thank god . No he doesn’t have the permanent stoma . How was the reversing the stoma for you? Can you please make a video bout that . Thanks 🙏
zee k I’m so glad to hear he’s doing better! A video on the reversal surgery is on my list, but it probably won’t be filmed until the end of the summer.
It took me 12 weeks for the pain to subside when I sat down. I was having a bit of inflammation that took extra time to subside. This also delayed when my ileostomy reversal would be performed. But then Covid wound up delaying that procedure. Ultimately I had my ostomy for 9 months before reversal.
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Jelena- that midline incision you received is something I didn’t have to deal with - thankfully. My surgeon used a Divinci robot to perform my LAR which didn’t require a large midline incision. I had many adhesions which he had to cut through in order to remove the pieces of the colon and rectum. He told me that many surgeons would have given up the laparoscopic approach and performed a midline incision. I’m thankful he persevered and I avoided that big incision. Though he did have to put in a 4 inch incision to provide a means to remove the tumor which was 9 inches long.
Jelena my surgery was successful all clean margins, Chemo and Radiation worked very well he removed part of the colon that disease started in and 4 lympnodes. Me and Bella my ostamy bag lol are having a time, trying several bags, sad part getting second home nurse, really sad that some nurses are not that experienced with illestomy bag. Thanks your videos helped 💙 Eight weeks hopefully reversal surgery will keep you posted.
That’s great news the surgeon got clean margins 🎉👏🏼 And you’re right about the home health nurses…a lot of them don’t have much (or any) experience with ostomies which makes it really hard to get help. I hope you and Bella can find a rhythm and get along soon.
So happy for you. Wishing you a 100% recovery. A real-life heroine.
Aw, thank you 💙
I didn't have this kind of surgery but I had like 30 staples for my knee surgery and I agree having staples is miserable. I had to sleep on my back for months because I couldn't bend my knee.
Dear Jelena, so proud of you. Thank you for sharing your journey in so much detail. It is really helping the survivors and their caretakers a lot. Can you please tell how many lymph nodes showed cancer out of 17 in your case?
Thank you 💙 I believe it was 5 of the lymph nodes still had cancer in them.
@@SurvivorJelena thanks for letting me know. My father has been recently diagnosed with colon cancer and 10 out of 15 lymph nodes showed the infection. :(
His surgery is done. He is on stoma bag for now. Has been advised 12 rounds of folfox chemo for over 6 months. We're all really worried.
Jelena - you had a different treatment sequence than I did. I had a stage 3C rectal/sigmoid colon tumor which might explain the difference. My treatment sequence was: 8 cycles of FOLFOX two weeks apart, 28 daily radiation treatments with Xeloda chemo pills and then surgery with an ileostomy. My surgery lasted 8 hours which was 2 hours more than expected.
Wow, 7 hours! If you watch my Stage 3 interview with Cormeshia she did the same order of treatment that you did.
How are doing today? I have the same stage and the same treatment plan.
@@merchseller good news is I’m cancer free. The down side is I struggle daily with bowel movements. Urgency, frequency and diarrhea are the main problems. The surgery I had was called a Low Anterior Resection. There is something called LAR syndrome which approximately 60% of patients suffer from. It’s a result of the surgery and the radiation. If you are having LAR surgery, I would suggest you have a good long talk with your surgeon to review the procedure and the possible side effects. Also I have permanent neuropathy in my feet and fingers from the FOLFOX chemo. I was scheduled for 12 cycles but stopped after 8, due to low platelet counts and neuropathy. I’ve recently read that some oncologists are recommending only 6 cycles of FOLFOX, so you should check that as well. Hope your treatments go well with good outcomes.
Thanks for sharing I have to do the same thing never had major surgery kind of nervious
Yes, it’s intimidating going in for such a big surgery when you have never had anything so major done before. The first few days are tough, but once you get through that you’ll feel like you can handle anything.
Thank you for the video! Do you think you could have managed your recovery without home assistance?
You’re welcome! If you have a family member that’s comfortable with helping with bag changes and you’re comfortable with their help, maybe. If the home health nurse you’re assigned has never worked with ostomies before, you can probably do just as well on your own watching some videos on here on how to care for it and do bag changes.
@@SurvivorJelena Thank you!
Is the first week torture. I feel like I can’t sit down
Did you get a permanent ostomy? Laying down is definitely the most comfortable, until you have to get up 😬
Thanks for sharing your story... Just had LAR colon surgery myself in August 2020 to remove 7 inches of colon with a 1.5 inches pre cancer tumor on it. I was discharged from hospital 2 days after the surgery and did not have to wear a stool collection bag then return later for reversal surgery as you did .. What was your surgeon’s justification for making you suffer twice ???
Part of my rectum was removed too. When you sew the colon and rectum together there’s a 25% chance of having a leak while it heals, which is a pretty decent chance of having poop leaking into your abdomen. That’s why most people that have rectal cancer end up with an ostomy, either temporary or permanent.
How long did you wait before trying to sleep on your side again (after LAR surgery). I am worried it may cause leakage in my ostomy bag. I really can’t sleep on my back and it’s starting to affect me :(
Max Martian I think I only waited about a week. I’m a side sleeper so it was hard for me to try to sleep on my back too. As soon as it wasn’t painful to roll onto my side I slept that way. If you can adjust the direction you bag is, you can turn it so there is more room for the waste as gravity pulls it down while you sleep. I’m pretty sure I only woke up twice to a catastrophic blowout, but I don’t know if side-sleeping has anything to do with it. Try it once it isn’t painful.
Survivor Jelena wow thanks! I think tonight I am going to give it a try. I literally have been going insane at night. I am at almost 2 weeks since surgery. Had 10 days in the hospital (ileus).
It can’t hurt to give it a try (if it physically doesn’t hurt 😀). I hope you get some good sleep tonight!
How long did you have the pain when you would sit? My brother is still uncomfortable after eight weeks
Sorry I didn’t reply sooner Zee! He didn’t get a permanent ostomy, right? Within 3-4 weeks after surgery the discomfort was gone for me. Have you guys called his surgeon to see if they can check to see what may be causing the prolonged pain?
Survivor Jelena no worries hun. He is getting better thank god . No he doesn’t have the permanent stoma . How was the reversing the stoma for you? Can you please make a video bout that . Thanks 🙏
zee k I’m so glad to hear he’s doing better! A video on the reversal surgery is on my list, but it probably won’t be filmed until the end of the summer.
It took me 12 weeks for the pain to subside when I sat down. I was having a bit of inflammation that took extra time to subside. This also delayed when my ileostomy reversal would be performed. But then Covid wound up delaying that procedure. Ultimately I had my ostomy for 9 months before reversal.