Nycomomohead wrote:My wife and I have decided on to go with the original surgeon after meeting with UPenn and MSK. MSK is extremely well run, but ultimately, all landed on the same treatment path. MSK did differ in offering robotic LAR, while the others would do non robotic LAR.
The original surgeon and team have been very responsive and timely and aligned with the 2nd opinions. Reference followups with doctors have all shown the surgeon to be skilled and caring.
My wife surgery is about 1 week out. MSK said a temp ilestomy will be required. Our surgeon said it will be a surgery decision.
My wife is holding up well, but certain days are better than others. Stress and having the appetite to maintain her weight, lack of sleep are being experienced. Hot flashes from probable menopause also have me sleep and fatigue challenging.
Any tips for me to help my wife for what is ahead is always appreciated.
My thoughts are with all affected.
Nycomomohead wrote:... Any tips for me to help my wife for what is ahead is always appreciated...
Rock_Robster wrote:I had a robotic ULAR with temporary ileostomy, reversed 6 months later.
As far as surgeries go it isn’t too bad, particularly if they do it minimally-invasively. But the adjustment for her system (both after surgery and after reversal) is substantial, and unfortunately you’re going through that at the same time as learning the skill set of managing an ostomy.
The goal is to get in and out of hospital as quickly as possible with the fewest complications. When she can leave hospital will be largely determined by: (1) pain can be managed with oral meds, (2) normal bowel movement has restarted, (3) any drains have slowed sufficiently or stopped, and (4) she can manage the ileostomy without nursing support.
(1) is usually not too bad for this type of surgery; thankfully. For (2) & (3) frequent, gentle walking is by far the best solution. Ask the hospital if they have an Enhanced Recovery After Surgery (ERAS) program, and if so follow it to the letter. If not, I can provide a link to a generic GI ERAS program and she can get onto it. The main thing is to resume very light walking and plain solid foods as quickly as possibly after surgery (ie within 24 hours), and then scale up to some pretty serious activity levels by discharge.
On (4), stoma care nurses are directly descended from one of the layers of heavenly choir angels, so make sure you meet with yours *before* the surgery (which will also involve marking a location for the stoma - she should wear her favourite jeans or whatever to this meeting so they can avoid the wasteband. For many folk, a higher stoma is easier than lower, as it can sit above the pants waistline). She should start doing her own bag changes etc. as soon as she is physically able, with nursing supervision. It will all be done on autopilot after about 3 weeks, but you’ve gotta get the muscle memory up. Matching the right stoma apparatuses to the person is also key; the stoma nurse can help a lot with this, but it’s not a bad idea to get in touch with the major providers too (Coloplast, Hollister, Convatec) and ask for some samples of their most popular products for new ileostomies. I was a big fan of the Coloplast Sensura Mio one-piece drainable bags, with the Coloplast Brava strips.
Breathing exercises are also important after surgery to avoid lung issues, I can post some tips on this if helpful (or you can Google these).
If she doesn’t have an ostomy, then recovering something close to normal bowel function is going to take some time. But perhaps we cross that bridge if we come to it, given a temporary ileostomy sounds more likely at this stage.
This is all about recovering quickly and getting home. There is another dimension to this which is that this is also *cancer* surgery, so maximising her oncological outcome and minimising recurrence risk is also crucial. Although she thankfully has a low-risk case, there are still measures that can taken that are also just good sense anyway. However there is a lot for you to take in here already, so if this is of interest let me know and I’ll post some more thoughts.
Good luck,
Rob
Nycomomohead wrote:... Any tips for me to help my wife for what is ahead is always appreciated...
Nycomomohead wrote:My wife and I have decided on to go with the original surgeon after meeting with UPenn and MSK. MSK is extremely well run, but ultimately, all landed on the same treatment path. MSK did differ in offering robotic LAR, while the others would do non robotic LAR.
The original surgeon and team have been very responsive and timely and aligned with the 2nd opinions. Reference followups with doctors have all shown the surgeon to be skilled and caring.
My wife surgery is about 1 week out. MSK said a temp ilestomy will be required. Our surgeon said it will be a surgery decision.
My wife is holding up well, but certain days are better than others. Stress and having the appetite to maintain her weight, lack of sleep are being experienced. Hot flashes from probable menopause also have me sleep and fatigue challenging.
Any tips for me to help my wife for what is ahead is always appreciated.
My thoughts are with all affected.
Nycomomohead wrote:... This has also given me a wakeup call on my health, and I have scheduled a Urologist appointment to check my prostate...
O Stoma Mia wrote:... Male patients above a certain age should be sure to have a Prostate Specific Antigen (PSA) prostate test annually to check on two things: (1) if the PSA value has gone out of normal range, and (2) if the value has more than doubled in the previous year. If so, then it is time to schedule an appointment with a urologist to see if the current elevation is something to worry about.
According to current literature, the best non-invasive test for checking on prostate cancer is a specialized multi-parameter MRI scan called mpMRI. This kind of scan is designed to look specifically for abnormal blood flow in the prostate, which would be indicative of an emergent cancer. If it is caught early enough, then this would be before the cancer has had a chance to metastasize to the bones. In prostate cancer, metastasis to the bones is generally the first, and primary metastasis site. Other metastases come later.
You can read about it in this primer:
A PROSTATE CANCER PRIMER
https://prostatecancer2020vision.org/wp-content/uploads/2020/12/ProstatePrimer_V3.pdf
Website: https://prostatecancer2020vision.org
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