The Colon Club

rtcasper wrote:Hi everyone. Had my surgery last Tuesday, Sept. 25. It was supposed to be about 4 hrs, ended up going 7. Surgeon said he didn't like the blood flow he was getting from my colon, so he took off a bit more to do it right. Ended up removing approximately 16 inches including most of rectum. I was released to home on Friday, so just recovering. Getting used to the bag, loop ileostomy, trying to get a little thickening going on, but it's pretty darn amazing how little pain I've experienced from any of this so far, mostly back and butt from laying around. I make sure to get up and walk around, get the blood flowing. Awaiting pathology results to find out staging and next course of action,and will update then. Overall, mentally, feel pretty good, glad it's "out" of me, understand still have a long road ahead, but also aware it could be much worse.

Much love and prayers to all! !

Sounds like things went quite well. Next thing is adjusting to the bag and experimenting with products if there are any issues.

Received call from Dr. Kalady. Official pathological staging of T1N0M0. He will take this to the board, discuss with my oncologist and we'll come together for a plan for follow up. Any thoughts on what u guys might consider going forward?

rtcasper wrote:Received call from Dr. Kalady. Official pathological staging of T1N0M0. He will take this to the board, discuss with my oncologist and we'll come together for a plan for follow up. Any thoughts on what u guys might consider going forward?

I don't have any experience with neo-adjuvant chemo/radiation or with pathology reports based on previously treated tumors. (My chemo/radiation was post-surgery, and my pathology report was based on a raw, un-treated resected tumor). There is a big difference in how the two kinds of pathology reports are to be interpreted.

For your upcoming meeting(s) with your surgeon/oncologist, I would suggest that you get a printed copy of the full pathology report and go through it in advance with a fine-tooth comb, making sure that you understand all of the technical terms that are used. This report is one of the key input items for your staging and initial treatment planning

Here are some suggestions:

• Terminology - You should learn the syntax for pathology reporting when specimens have had prior treatment before surgical resection. There is a prefix "y" which is for indicating that the specimen has already had chemo or radiation treatment. The prefix "p"" is for indicating that this is a pathology assessment (as opposed to a clinical assessment).
  
  Your pathology result should be designated as ypT1N0M0 (pathologic partial response, pPR ).
  
  If you had had a complete pathologic response, then your result would have been designated ypT0N0M0 (pathologic complete response, pCR)
  
  Before surgery, you had an MRI clinical staging of cT2N1M0/cT3N1M0, or the equivalent of Stage IIIa. Clinical staging assessments are done mainly by imaging tests of one kind or another: CT scan / MRI scan / ultrasound.
  
  In summary, your short course neoadjuvant chemo/radiation resulted in a down-staging of your cancer from cT2N1M0/cT3N1M0 to ypT1N0M0.
  .
• G049 Dataset for histopathological reporting of colorectal cancer - Royal College of Pathologists
  https://www.rcpath.org/resourceLibrary/g049-dataset-for-histopathological-reporting-of-colorectal-cancer.html
  
  This is a 62 page document. If you have time, it would be good if you could skim over the whole document to familiarize yourself with the terminology and the structure of pathology reporting for colorectal cancer specimens. If you don't have time, then focus on the sections below which are the ones most relevant to your case. Appendices C and F are definitely relevant. Appendices E and H are relevant if they were able to do MSI testing on the residual tumor tissue.
  
  
  pp. 27-28 - Chapter 9 - Pathological staging
  p. 48 - Appendix C - Reporting proforma for colorectal carcinoma resection specimens
  p. 50 - Appendix E - Reporting proforma for further investigations for colorectal carcinoma (MSI: Microsatellite Instability testing)
  pp. 51–55 - Appendix F- Reporting proforma for colorectal carcinoma resection specimens in list format
  pp. 59-60 - Appendix H - Reporting proforma for further investigations for colorectal carcinoma in list format (MSI: Microsatellite Instability testing)
• You can familiarize yourself with this general area by reading a few articles on the pathology reporting of neo-adjuvant-treated tumors, for example:
  https://www.nature.com/articles/srep34923

Questions:
- Did they do any scans after your short-course chemo/radiation and before your surgery?
- Are they going to test your CEA after surgery and before you start adjuvant therapy (very important to do this, for baseline purposes).

I had about the same stage of rectal cancer as you. I had a ULAR with temp loop ileo and just had a reversal 9 days ago. I have no rectum left at all at all. It's actually going better than I thought it would. I didn't have any chemo after and I'm so glad. Out of the 18 nodes they pulled, they were all negative. Hoping for the best for you!

Hi guys, just an update. A little over 3 weeks out from surgery, went back to work earlier in the week. I work moat of the day til I'm tired, then head home. The bag is getting easier to deal with, I won't go so far as to say I hardly notice it, but it's bearable. Had a bad day about a week ago after most of visiting family had headed home, I live far from most of my immediate family, just really sad about everything, the first day I was really by myself since surgery. But it passed pretty quickly. I've really noticed the rectal fulness/pressure over the last week as well. Likely just the healing process going on down there, after exploring some links in here, it's pretty normal from what I can tell. I'll meet with my onc next week, so I update then. My best to you all!

Jedi mom, I hope your reversal is still going well. I tried to pm you to ask some questions, but it won't go through? If you're able, pm me and let me know how things are going. Best of luck.

rtcasper wrote:Hi guys, just an update. A little over 3 weeks out from surgery, went back to work earlier in the week. I work moat of the day til I'm tired, then head home. The bag is getting easier to deal with, I won't go so far as to say I hardly notice it, but it's bearable. Had a bad day about a week ago after most of visiting family had headed home, I live far from most of my immediate family, just really sad about everything, the first day I was really by myself since surgery. But it passed pretty quickly. I've really noticed the rectal fulness/pressure over the last week as well. Likely just the healing process going on down there, after exploring some links in here, it's pretty normal from what I can tell. I'll meet with my onc next week, so I update then. My best to you all!

Jedi mom, I hope your reversal is still going well. I tried to pm you to ask some questions, but it won't go through? If you're able, pm me and let me know how things are going. Best of luck.

Things generally get better with the bag with time. It sounds like you haven't had an leaks or other accidents and that's a good thing so early in.

I recommend building an emergency kit if you haven't already done so. I got some samples from Coloplast and they provided a nice little bag for putting emergency supplies. I use it now for supplies after the ileostomy reversal.

Hi Mike,
Yeah, luckily, no accidents. I did build a little kit for traveling, work, etc. Just in case. I've been sleeping in my recliner since I got back home from surgery, it keeps me ever so slightly upright and I can't really roll from side to side. It's been great, tho my wife likely wouldn't agree, lol. Although she does have the bed all to herself now......

Ditto what Mike said. I got a sample kit from Hollister, Coloplast and Conatec. I put one in each of our cars, the other in my desk. I loved sleeping in bed but can understand the easy in/out of a recliner. Things get better

OK, my update. Had my reversal surgery last Tuesday, the 8th? I think it was. One night in the hospital and sent home on Wednesday. I experienced some loose stool,clustering at about 2 am,was up and walking around immediately, so they felt comfortable sending me home. It's been a tough go this first week. The former stoma hole in my belly has been very painful, but I only used a couple of oxy over the week. Swapping between ibuprofen and Tylenol. Days, from waking until bedtime has been a battle of holding back the urge to poop,sitting on the toilet, and just letting things run through. I could sit there for 10 mins,think everything is done, go to my recliner and bam, the urge hits again. But got pretty sore, but the calmoseptine and aquaphore helped.

Side note-I've slept comfortably all night every night, no need to get up, no urge to go, it waits until I'm up and about.

Today, Monday, 6 days removed was a stepping stone I could tell. The general stiffness in my belly is gone, my frequency through the day was much less today, and I haven't had nearly as many of those urges to go. My poop formation is still mostly of the milk dud variety, not nearly as much liquid and still very dark green. I assume this is still from my colon not doing it's due diligence. I needed a day like this to keep my sanity. I've not used any meds or supplements to try and control anything yet, I'm letting it try and sort itself out, but I'll eat some oatmeal, peanut butter or a banana to try and keep things on the slow side. Also, I feel like I could eat whatever o want. I'm keeping it fairly soft, but overall I can't complain with the way things are going, these few days removed.

Awesome news. I put my surgery off until April. I am self employed and couldn't afford to miss so much work, school ends in May so I can call in last month. Just didn't want to risk it midyear.
You give me hope!!!
Susan

Hi folks. Just checking in. Turns out I had a bad case of Cdiff after my reversal. Fought with it for 2 months, then finally had a FMT, fecal matter transplant. That was.....fun, to say the least, lol. Anyway, that was back in May and things have gotten better and better ever since. My weight is back to near pre diagnosis and I feel pretty great. Stools are pretty normal, tho I might go 3-4 times a day. Had my one year scan last month and everything is clear.

For all of you out there in the middle of this, there is a light at the end of the tunnel!

rtcasper wrote:OK, my update. Had my reversal surgery last Tuesday, the 8th? I think it was. One night in the hospital and sent home on Wednesday. I experienced some loose stool,clustering at about 2 am,was up and walking around immediately, so they felt comfortable sending me home. It's been a tough go this first week. The former stoma hole in my belly has been very painful, but I only used a couple of oxy over the week. Swapping between ibuprofen and Tylenol. Days, from waking until bedtime has been a battle of holding back the urge to poop,sitting on the toilet, and just letting things run through. I could sit there for 10 mins,think everything is done, go to my recliner and bam, the urge hits again. But got pretty sore, but the calmoseptine and aquaphore helped.

Side note-I've slept comfortably all night every night, no need to get up, no urge to go, it waits until I'm up and about.

Today, Monday, 6 days removed was a stepping stone I could tell. The general stiffness in my belly is gone, my frequency through the day was much less today, and I haven't had nearly as many of those urges to go. My poop formation is still mostly of the milk dud variety, not nearly as much liquid and still very dark green. I assume this is still from my colon not doing it's due diligence. I needed a day like this to keep my sanity. I've not used any meds or supplements to try and control anything yet, I'm letting it try and sort itself out, but I'll eat some oatmeal, peanut butter or a banana to try and keep things on the slow side. Also, I feel like I could eat whatever o want. I'm keeping it fairly soft, but overall I can't complain with the way things are going, these few days removed.

It sounds like you're doing great.

Ooops. I was responding to a very old post.

Hey everyone! It's been a minute since ive been on here. Just popping in to say ive cleared 2 years, still NED. My surgeon, Dr. Matthew Kalady is leaving Cleveland clinic and going to OSU to become head of Colo- rectal surgery there, so I'm going to follow. Hope everyone is well and still going strong, and if you're new to this, it is simply something that you deal with, do your best, keep your head up.