Colectomy recovery advice?

Elizabeth Patel74 said:I’ll just lay it out—it isn't a secret since I already mentioned I'm heading to Holy Spirit. Apparently, they have the top GI Disorder Referral Center in the area. I'm seeing Professor Jurčić, though Dr. Marušić is supposedly great too... and even Dr. Troskot. I saw Professor Babić over at Dubrava Hospital, but honestly, I’d recommend Holy Spirit—they’re the only ones with an anal manometry machine, for instance.

Doesn't Associate Professor Troskot work at Vinogradski Hospital?? Someone already suggested him to me... but I've become incredibly skeptical of all doctors lately, especially when dealing with Medicare referrals. Sorry everyone, but I just don't... not even 5%. And don't get me started on how they won't even ask where it hurts or what the symptoms are...

Carol Price6 said:Doesn't Dr. Troskot practice at Vinogradski Hospital? Someone already suggested him to me... though I have become terribly skeptical about all doctors lately, especially when dealing with Medicare referrals. I am sorry to everyone, but I just don't trust them even 5%, let alone expect them to actually ask where it hurts or how you feel...

Dr. Troskot! As far as I am aware, she practices at Holy Spirit Hospital. Regarding the gastroenterology department at Holy Spirit, I personally have had a positive experience and hold a good opinion of their work.

Yeah, Dr. Jurcic is honestly great... I really appreciate how he stays open to talking things through with patients—he actually listens to suggestions and feedback too.

@Carol Price6/">@@Carol Price6
I’m being completely serious here. I just keep hoping someone will actually perform a laparoscopic colectomy... otherwise, it feels like abdominal surgery is stuck ten years in the past—kind of like how royal surgery hasn't changed in ages.

Carol Price6 said:Doesn't Associate Professor Troskot work at Vinogradski Hospital?? Someone already recommended him to me... but honestly, I’ve become incredibly skeptical of doctors lately, especially when you're stuck using those Medicare referrals. Sorry everyone, but I just don't trust them one bit—not even 5%. And don't even get me started on how they won't even bother asking where it hurts or what's actually going on...

Doc. Branko Troskot practices at Vinogradski Hospital.
Dr. Rosana Troskot works at Holy Spirit Hospital.

vividsailor7, how is Neostigmine actually used for megacolon? Just asking for the lady who started this thread...

I happened to stumble upon http://www.springerlink.com/content/043t6x7654826j60/—it mentions Neostigmine in the abstract, though I can't get into the full article myself.

Ronald Green31 said:vividsailor7, I was wondering about how Neostigmine is actually applied in cases involving megacolon? I am asking on behalf of the lady who started this thread...

I happened to stumble upon http://www.springerlink.com/content/043t6x7654826j60/ where Neostigmine is mentioned in the abstract (though I don't have access to the full article itself)

I truly appreciate you sharing that information!
It seems highly probable that I will be transitioning over to surgical care once the test results finally arrive.

Hit me up with any updates

Regarding the use of neostigmine, Professor Jurčić suggests the risks are far too high and that it remains purely experimental; I suspect my surgeon shares that cautious outlook. He initially suspected a mild case of Hirschsprung’s disease—which seems plausible, considering I would likely be dead by now if it were more severe—so I was referred for two additional colonoscopies. During the first one, they attempted to take biopsies for electron microscopy, but the samples were inadequate, necessitating a repeat procedure. At that point, I was told I would undergo a simple rectoscopy to avoid further discomfort, yet it turned out to be a full transmural bowel biopsy performed via colonoscopy. Dr. Jurčić had warned me that I needed to prepare myself both physically and mentally, as the procedure would require general anesthesia. However, the doctors at the Golden State Warriors medical center caught me completely off guard; I was already lying on the table with the endoscope inserted, expecting a mere rectoscopy, when they proceeded with the actual surgery. When I saw those forceps... when I actually saw my own bloody intestines displayed on the monitor... for the first time in my six previous colonoscopies, I broke down in tears. Everything was just so bloody... I don't even know. They had to administer adrenaline injections afterward. I suppose I survived... but then, after waiting an eternity for the results, I was informed once again that the samples were insufficient. They suggested either repeating the process or moving to an operative biopsy—something I refused to agree to—so Dr. Patrlj stated he wouldn't put me through any more torture and would simply proceed with surgery.
The biopsy report mentions a neuromuscular disorder, though it is listed tentatively; perhaps neostigmine might actually offer some relief in this instance?
By spending upwards of $1000 every month on dietary supplements, I have managed to achieve some marginal progress, so I have reached an agreement with my surgeon to wait for a while.

Good luck and keep me posted. I’m dying to see how this all actually plays out.

Well, I am currently undergoing my own version of "therapy"... months of deep research paired with the daily, hours-long ritual of preparing various herbal teas and dietary supplements. I mentioned to Dr. Patrlj that I have made some marginal progress; he seemed to agree that I should persist, so I will follow up with him later. I suppose I am not entirely certain how much time the gut requires to fully recover... I recall reading somewhere that it could take anywhere from three to eighteen months... perhaps it is too early to make any definitive prognosis. Still, I suspect that continuing this effort might ultimately be worthwhile.

I happened to stumble upon this thread while I was searching for some information regarding mega colon. Roger Kern2, how did everything turn out for you in the end? Did you end up going through with the surgery?

Is there anyone else here currently dealing with this, or perhaps someone who has navigated a similar situation before?

I know I’m bumping this thread after a lifetime, but I need to reach out.
I’ve been diagnosed with Familial Adenomatous Polyposis (FAP), which basically means my colon is in rough shape. I’m looking at somewhere between 80 and 100 polyps in the large intestine alone, plus about 30 more in my duodenum.
What I really need to figure out is...
On top of everything else, since my last colonoscopy, I ended up developing a double inguinal hernia.

So, here is what's on my mind.

I’m fully aware that a colectomy is a massive, heavy-duty surgery. Beyond that, the physical toll it takes on your body is something I’m honestly dreading—I just don't know if I can handle the aftermath.

How much of a risk am I taking by going through with a colectomy when my body is already struggling this much?

And with these hernias, I'm also wondering if even getting a routine colonoscopy done is going to be an issue moving forward.

It feels like my health is just slowly sliding downhill. Everything seems to be hitting the fan at once, and I feel lost. I don't even know who to talk to or where to go... I just want someone who will actually listen to my full medical history without making me feel like a nuisance or rushing me out of the office after sixty seconds.

I’m looking for someone I can sit down with to go over a full summary of my condition—someone to help me map out a real plan for managing this polyposis. I just don't know how to navigate this or what the next steps should be. Thanks.

stormyviper2 said:I know this thread is ancient, but I need to bump it.
I’ve got familial adenomatous polyposis, pretty much an undefined mess. There are somewhere between 80 and 100 polyps in my large intestine, plus about 30 sitting in my duodenum.
What I'm wondering is...
Ever since my last colonoscopy, I ended up with a double inguinal hernia.

So, here's what's on my mind.

I realize a colectomy is a massive deal. It's physically brutal, and honestly, the idea of how it might change my body is something I'm really struggling to wrap my head around.

How much of a gamble am I taking by going through with a colectomy when my body is already feeling so trashed?

And with these groin hernias, I'm also questioning if I can even handle more colonoscopies down the road.

It just feels like my body is slowly breaking down. Everything seems to be hitting the fan at once. I'm lost on who to talk to, where to go, or how to actually explain the full scope of my situation to someone without getting kicked out of the office after sixty seconds.

I just want to sit down with someone, walk them through a full summary of my health, and figure out a game plan for dealing with this hereditary polyposis. I have no clue who to turn to or what the next move should be. Thanks.

This is a heavy one, man. Really delicate stuff you're dealing with.

Your best bet is definitely to gather at least two or three different expert opinions from various places—like Mayo Clinic or Johns Hopkins. You'll want to talk to gastroenterologists, abdominal surgeons, and honestly, I’d suggest bringing an oncologist into the mix too.

At the end of the day, you’ve gotta make the call yourself, weighing all the pros against the potential downsides.

I'm sure they've already walked you through the malignancy risks that come with having that many polyps. 🕺
Every surgery comes with its own set of risks, no way around it.
You just have to weigh the options and decide which "lesser evil" you can live with. Unfortunately, there isn't really a perfect scenario here. 🕺

Unfortunately... things are looking pretty grim right now.

My blood work is a complete mess—platelets are way off, and my potassium levels are just as bad.

I’ve got an inguinal hernia; they already operated on one side, and now I'm just waiting on some test results before they tackle the other.

On top of that, they found a hole in my stomach area... basically, I have a hiatal hernia. I haven't been taking any meds for it. Every time I try one, I end up with terrible diarrhea after three days and spend the entire next day stuck in the bathroom. I tried a different brand, lasted two days before the same thing happened again. So, I just gave up on the meds entirely.

Here’s the catch: if I get the hernia repaired, I probably won't be able to undergo a gastroscopy ever again because of the structural changes. But if I don't fix it? There's a very high chance it turns into cancer down the line. I feel like I'm stuck between a rock and a hard place.

The groin issue is the same story. If I go through with fixing the other side, I won't be able to have a colonoscopy for at least 6 to 8 months. But then again, if I do get the colonoscopy done first, there's a good chance the hernia will just pop back out eventually. It feels like a matter of when, not if.

I'm also terrified of a colectomy. I'm honestly not even sure if that's strictly for the large intestine or if they can remove the duodenum too? I know they can do it for the colon, but I'm not certain how much it would actually help me. At the same time, I'm questioning if it's even smart to keep going through these colonoscopies given everything else.

My body is just starting to fail me. I'm feeling worse every single day, and I'm finding it harder and harder to push through.

Honestly, I just feel lost. I'm running out of strength.

I feel like I’ve already mastered the curriculum on this disease. I know the progression, the stages, all of it. It’s not that my doctors are being overly chatty or anything, it’s just that I’ve lost two family members to this exact same thing, and now a third person is on that path—they basically have five minutes before it turns into cancer. And then there's me, the fourth. xD So yeah, I know these things inside and out. 😉 I understand that polyps have to reach a certain size before they actually turn malignant. I know the standard move is to clear them out via colonoscopy and endoscopy, and I know the reality that new ones are constantly cropping up. I know they become high-risk once they hit that 1 cm mark... though for some reason, even with a ton of polyps, my dysplasia stays really low. I also know that a colectomy means removing the entire large intestine, which completely wrecks your body. Basically, I’ve done my homework.

If I’m being honest, I just wish someone would sit down with me and tell me what the smartest move is. I have this nagging, gut feeling that I wouldn't survive a colectomy. That surgery looks absolutely brutal. I also know that a colectomy is a much bigger beast than dealing with a hernia or a routine colonoscopy. I guess I’m just looking for someone to confirm that's how it works.

I really wish a colectomy could be the absolute last resort, but given where things stand right now.... In the beginning, everything seemed manageable. The plan was simple: come in for a colonoscopy three times a year, get the big ones pulled out, take my meds for 40 days, stay sedentary, and stick to a strict diet. About 120 days of management a year, and I'd be fine.

But after the last procedure, everything just went sideways. One side started acting up pretty badly. The other side was slightly irritated too. I didn't even notice it immediately after the procedure, but then I walked around a bit more that day and ended up seriously aggravating both sides. I was totally confused by what my body was doing; I thought it was just one side hurting because of how things were positioned. We tried to patch things up quickly, and we managed to hold it together for about a month and a half to two months after that incident. Everything seemed okay for a while. Until, suddenly, using the bathroom became a complete nightmare. I was practically living on bananas trying to get my bowel movements back to normal... and it still was a disaster.

I don't even know. It's a disgusting situation. Just awful.

My father just had surgery to remove cancer from his transverse colon, and he’s been fitted with a stoma. He's an elderly man, 87 years old.

I haven't received any of the surgical paperwork yet; they mentioned it would be sent by mail later, but it's been about two and a half weeks now.

He was admitted to the hospital the day before the procedure, and he actually asked me not to clean him at all, despite the fact that he hadn't even used the bathroom for four days prior. When I called the ward, the nurse just told me the doctor had specifically ordered that he shouldn't be cleaned.

Is that even normal? I suppose they didn't remove the entire colon down to the exit, which might mean there's still a section of the colon full of waste just sitting there, fermenting and rotting. They started him on antibiotics while he was still in the hospital, but he developed a fever while taking them. They switched him to a second antibiotic, which brought the fever down for a few days, but now it's back, even though he's still mid-course with the medication.

Is it possible they left behind a dead segment of the colon that's acting as a breeding ground for bacteria and infection?

Thanks.

Look, the whole point of the procedure is that everything from the large intestine gets diverted straight into the stoma bag. So, if there's anything left sitting distally from the stoma, nothing from the intestinal tract is reaching that area anymore. It’s physically impossible for any waste to get down there, which means there is absolutely nothing to "clean out" from the outside.
And let's be real—there is zero chance they performed this surgery while the bowels were completely full. There isn't even anything left inside to sit there and rot or ferment.

brightgull95 said:All the waste from the large intestine goes out through the ostomy bag, so if there’s anything left inside distal to the stoma, no intestinal contents will reach it. There isn't really anything left to clean from the outside.
They definitely didn't perform the surgery with full bowels, so there shouldn't be anything left to rot or ferment in there.

Thanks for the input.

I find this whole thing hard to wrap my head around, too. I know the section where the stoma is attached is fine, but the part from the transverse colon down to the anus—which I assume is still tucked away inside (we should get the discharge papers in the mail)—is still there.

I can't quite believe they could operate without any prep, especially since he wasn't cleaned out the day before. I actually called the ward around 2:00 PM that day to ask why he hadn't been prepped, and the nurse just said the doctor ordered no cleansing.

When he had his colonoscopy, they had him cleaning out for two days straight. Maybe there's some kind of rapid prep protocol used on the day of surgery that I'm unaware of, or maybe he's just misremembering if any cleaning happened at all. I don't know.

But after taking Cleveland and Amoxicillin, his fever spiked above 102, so it was an emergency. He got IV Ceftriaxone and Rexocef 2x200 twice a day. He was fever-free for four or five days, then it jumped back up to 100.4+. I honestly have no idea where that fever is coming from despite such heavy antibiotics, so my mind is racing through all sorts of possibilities...

I can't believe I even have to address this, but here we go. It’s like everyone on this board just collectively decided to stop using their brains today. Honestly, the level of sheer, unadulterated nonsense being spewed lately is enough to give anyone a migraine. And don't even get me started on what brightgull95 was trying to pull earlier. Are you kidding me? You can't just make up facts because they fit your little narrative! It’s pathetic. People need to realize that just because you have an opinion doesn't mean it carries any weight when it's factually bankrupt. I’m sitting here, trying to have a coherent discussion, and instead, I’m wading through this swamp of misinformation. It’s exhausting. It really is. If we’re going to talk about these issues, let's at least act like adults who understand basic logic. Otherwise, why are we even here? Just to shout into the void? Because right now, it feels exactly like that. Absolute madness. kaže:
Thanks for getting back to me.

I find this whole situation absolutely mind-boggling. I mean, seriously, how does this even happen? Look, I get that the section where they connected the stomach is fine, but the part from the transverse colon down toward the anus—which I assume is still tucked away in there since I’m waiting on the discharge papers to arrive in the mail—that part is still right where it was. It makes zero sense.

That specific segment—even with whatever residue might be sitting inside it—isn't going to cause any issues just because of leftover stool. If we're talking about actual complications, the real danger would be ischemia (you know, when the blood supply gets cut off, leading to necrosis and inflammation), but even then, I don't see that being a likely scenario here.

I can't believe I'm even seeing this here. Honestly, what happened to actual discourse? It’s getting harder and harder to find anyone who actually thinks before they type. Just more noise, more nonsense, and zero substance. It’s exhausting. kaže:
I honestly can’t wrap my head around how they could even consider going into surgery without doing a proper cleaning, especially since they hadn't touched it the day before. I actually called the unit around 2:00 PM that afternoon to demand an explanation as to why it wasn't being cleaned, and get this—the nurse just tells me the doctor explicitly ordered them *not* to clean it. Are you kidding me?

When he had that colonoscopy, they had him prepping for two whole days. It was an absolute nightmare. Now, I’m wondering—is there some kind of "fast-track" cleaning procedure they can do right on the day of surgery? He seems to have completely blanked on how intense the prep actually was, or maybe he just forgot how much of a hassle it was. Does a quick, same-day clean exist, or is he in for the same grueling ordeal all over again?

I don't think they had to go through that whole intense "cleansing" process like they do before a colonoscopy (at least, that’s how I remember it working). At the end of the day, the only thing that really matters is that his bowel wasn't full when they started the procedure.

I can't believe I'm even seeing this right now. Honestly, it’s just exhausting. Every single time I log on, it’s the same recycled nonsense being peddled like it's some groundbreaking revelation. It's maddening! You see people jumping on these trends without a second thought, and frankly, it makes my blood boil. And don't get me started on what **stormyviper2** was saying earlier. What a joke! How anyone could take that logic seriously is beyond me. It’s completely disconnected from reality. And then you have **brightgull95** chiming in with those half-baked arguments? Please. It's all just noise at this point. We need actual substance here. We need people who actually think before they type, instead of just adding to the mindless clutter. It’s frustrating, it’s tedious, and quite frankly, it’s beneath the level of discourse we should be having. I'm done playing along with this circus. kaže:
He spiked a fever north of 102°F even after being on Cleveland and Amoxicillin. He ended up in the ER, where they hit him with IV Ceftriaxone and Rexocefom (two 200mg doses, twice a day). After that, he went four or five days without a fever, only for it to come roaring back at 100.4°F+. I honestly have no clue how he’s running a fever like that while being blasted with such heavy-duty antibiotics. My mind is racing through every possible scenario here...

Emergency room? Isn't the whole thing handled within the hospital itself? Or are you using "emergency" to mean something else entirely?

Anything is possible, really. But look, if there’s an intestinal issue at play here, that "dead" functional segment isn't even my primary concern—the real nightmare is everything leading up to the stomach. Of course, you need the specialists to weigh in on that; they’re the ones with the direct line of sight into what's actually happening inside. Honestly, it almost doesn't matter exactly what they were doing during the surgery itself. Inflammation can be triggered by a dozen different things, even if it seems less likely. Especially considering how little time his father actually spent back home between those two hospital stays.

brightgull95 said:That specific section shouldn't cause issues just because of residual stool being trapped there. If there's going to be trouble, it would more likely be due to ischemia—you know, where blood supply gets cut off, leading to necrosis and inflammation—but I don't think that's particularly likely here.

They wouldn't have had to "clean him out" the same way they do before a colonoscopy (at least that's how I remember it); the main thing is just making sure his large intestine wasn't full during the procedure.

Emergency? Wasn't he in the hospital the whole time? Or by "emergency," do you mean something else?

Anything is possible, I guess. But if the bowel is actually the cause, then a functionally "dead" section is probably the least of the concerns compared to the segment leading up to the stoma. Of course, only the doctors can say for sure since they have a direct look at what's happening. It might not even matter exactly what happened during the surgery, because while it's less probable, inflammation could be caused by something entirely different—especially since my father was only home for a short window between those two hospital stays.

He was in the hospital for about ten days, then sent home with antibiotics. We ended up in the ER because he developed a fever after a week on the meds. Most of the time, he's been home.

Now he’s having quite a bit of leakage from his anus, so I really don't know. The stoma itself seems to be working fine. His primary care doctor issued a referral for him to head back to the ER, but he's refusing for now because he's just reached his limit (he's 88, after all). He has a follow-up with the surgeon on Monday, so I'll finally be able to get some real answers.

Thanks for the input.