Tag Archives: surgery

Life after reversal surgery

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Fortunately, things have been much easier with my reversal surgery than my prior surgery, back in January. With my reversal, I was discharged from the hospital two days after the surgery took place. I’m back at work, as of yesterday. My energy levels are good; there were just a few days of fatigue. And my pain at the surgical site has improved; I was able to manage it with just Tylenol after I was discharged, and I haven’t had any Tylenol since yesterday morning.

An hour or so before the reversal surgery took place, back on Apr 18, a resident physician (who worked with my surgeon on the procedure), spoke with me briefly about what to expect with the surgery. “Did you give it a name?” she asked. After a few moments of confusion, I realized she was talking about my stoma. I told her no, I never named it (although I did observe this to be a thing that other folks do, noted in the ostomy subreddit and other places). She seemed to be ready to comfort me with any grief I had about the loss of the stoma through reversal surgery. Nope … I felt no sadness about the end of that phase. Yes, it was a pretty enlightening experience, having the ileostomy, but I am certainly ok to move on.

On the morning of my discharge from the hospital, that same resident came by and helped change my dressing over the wound site. The wound was “packed” (gauze was coiled inside the hole in my stomach) and I watched with somewhat horrified fascination as she pulled out that blood-soaked gauze, and applied new dressing. I’ve been doing this same routine on my own, every day since, along with a thorough cleaning of the area via a shower. The hole is already closing up — pretty fascinating to track its progress every day. When I first got out of the hospital, it looked like this surreal second belly button — not too far away from my actual belly button — and a bit wider. Just to clarify, this hole did not go all the way into my innards; the resident explained that it stopped at the layer of my abdominal fascia.

Other than those daily cleanings and dressing changes, the main challenge post-reversal has really been adjusting to having a functioning colon again — with a rectum that is now considerably smaller. I have read several stories of folks dealing with LARS after their reversal and I was prepared for something similar, myself. But things seem to be largely ok with me in the bathroom area, after an initial period of constipation (which I was able to address via Miralax). Bowel movements are certainly more frequent, with associated urgency, but I’m already seeing improvement with this as well, day after day.

I continue to derive tons of helpful information from the Colontown family of online forums; yes they have one specifically dedicated to all things reversal (“Reversal Roundabout.”) From there, I learned that a first order of business for many folks after their reversal is to restore their gut’s bacteria through probiotics. The challenge is that with a reversal surgery –as with the LAR surgery before it — you get stuck on a restrictive low-fiber diet, which excludes most of the effective dietary sources of probiotics. So what a lot of folks do, I learned, is drink kombucha, at least up until their dietary guidelines loosen up again. I had never actually tried kombucha before, but decided to give it a shot, starting around a week ago, and I quickly realized I love it! Tasty and refreshing!

A week from now, I have CT scans at Fred Hutch; assuming all is clear from those, I’ll finally be able to start saying I’m NED. Of course, you never know what the scans may reveal. I’ve been tracking a variety of stories in Colontown, and of course not everything is positive. Someone with a Stage 3 diagnosis who started chemo on the exact same day I did, last year, just got news that her cancer is metastasizing and she’s now stage 4. I’ve also read recent posts of stage 4 patients passing away. These are notably poignant when it’s the patient themselves sharing the news of their upcoming demise. That said, I do not have “scanxiety;” instead I’m aware of the spectrum of possibilities that may come out of any CT scan, and will take things one step at a time.

A more positive take

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I met with the surgeon (and team) this past Monday. The day started off bright and early with a sigmoidoscopy, and I feel like that gave a more positive perspective on what chemo + radiation has accomplished inside my body. I should start by saying that being wide awake for a sigmoidoscopy is …. an unsettling experience (just google it). But after the camera went in, I was surprised to see … no tumor. Way, way different from how it looked in the past sigmoidoscopy, back in May (before I started treatment). That initial procedure described “a fungating and polypoid partially obstructing mass.” By contrast, in this week’s sigmoidoscopy, that scary-looking mass was gone, replaced by white scar tissue. This was honestly encouraging for me. I get that there is still some tumor remaining (embedded in the layers of tissue that surround the rectum), hence the “moderate response” terminology in the recent MRI summary. Next month’s surgery will take care of that. It was just encouraging to see that visual contrast in the sigmoidoscopy results.

All in all, very positive meeting that day with the surgeon and the nurses who work with him. The nurses provided me with a binder of information (like a 100 pages) on preparing for the surgery, and life after surgery, etc. A week before the surgery, they advised me to start adding Immunonutrition shakes to my daily diet. My dairy allergy doesn’t allow me to take the Ensure Surgery product they recommended, but they’ve worked with me to determine how to get what I need via alternate means: additional protein, fish oil supplements, arginine powder. Just ordered the arginine powder on amazon, it’s apparently a product favored by body-builder types. This photo was in the amazon listing for the arginine powder I ordered, so I fully expect it to make my arms look like this:

The next nurse I met with is an ostomy nurse; a very helpful and informative session about preparing for life with a temporary ileostomy. This surprised me: she had me lift up my shirt, she pulled out a marker and made a couple marks on my belly where they’ll do the ostomy incision. She put stickers over those — the plan is to keep those marks on me until 1/3 — kind of strange. And she gave me an Ostomy Home Skills Set© (yes, it has the copyright symbol) — which includes another marker that I can use to re-do the marks on my belly.

The surgery itself will have me in the hospital 3-5 days. Jan 2 (the day before the surgery) will basically be the same process as prep for a colonoscopy, along with a few other minor elements. I’ll be taking the entire month of January off (FMLA + short-term disability) to allow sufficient time for recovery. I’ve been in the process of sharing this information at work.

For now, I’m continuing to enjoy the month of December — post-chemo, pre-surgery — a nice respite.

moderate response

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Got my results back from last week’s MRI and CT scan. Although I have not yet discussed with the care team (that happens next week), it’s clear that surgery is a go. The MRI results describe my treatment response (this includes all the radiation and chemo I’ve gone through, for six months) as “partial” and the overall tumor regression is categorized as “moderate” (TRG 3 — see categories below):

Clearly surgery is needed to take care of the rest. So I’ve been looking into how much time off from work this will entail. Based on what I’m seeing in the Colontown forum, looks like I’ll need 4 weeks off after the Jan 3 LAR surgery — and then another 4 weeks off after the reversal surgery (which I believe will happen in the April timeframe). What needs to be reversed, you ask? It’s the ostomy: technically, the ileostomy which will be created in the Jan 3 surgery.

I’m actually currently at a work “off-site” summit meeting in North Carolina — and feeling good, by the way — the timing for this was perfect (post-chemo, pre-surgery). Got a chance to meet my new boss (he’s based in India) and reconnect with many colleagues. I’ve started to spread the word with these folks about the upcoming surgery. It’s really weird having cancer and knowing when/how to bring this up at work. I shared the info back in early May, with a small group, and strongly encouraged my colleagues to share the news on my behalf (I don’t really enjoy telling people directly). While many at these summit meetings knew about my situation, many also did not, and it’s been a little odd to explain the whole thing — although everyone is very supportive. I have received many big hugs.

Next week, I meet with the surgeon on Monday, and then do a scan review discussion with my oncologist on Thursday. While fortunately the CT scan indicates no metastasis has occurred, it does say there is “mild coronary artery calcification” — Google indicates this can indicate a risk of heart disease, so that’s concerning. I’ll ask about that next week (assuming that I’ll be directed to follow up with my primary care physician?)