Colectomy recovery advice?

I don't have ulcerative colitis, Crohn's disease, or colon cancer (thank God).
However, I suffer from colonic inertia and megacolon; based on what has been explained to me, my large intestine acts like a "bag." I have been struggling with digestive issues for about eight years now; previously, I could manage with laxatives, but lately, I have become resistant to them. I spent seven weeks under the care of gastroenterology, where my initial X-ray indicated the development of an ileus. Since there was no bowel movement, they had to extract intestinal contents via endoscopy. Every single time I ate, I experienced intense abdominal pressure and pain because I simply couldn't pass anything. They recommended some medication from Germany, specific fibers, supplements, syrups, and plenty of water, then sent me home to observe my condition; if things don't improve, a colectomy is being suggested. After a brief period, my condition improved slightly, but now it has taken a turn for the worse again. Once more, there are no bowel movements, just severe abdominal pain... and I am seriously considering surgery because the struggle is becoming unbearable. From what I understand, I wouldn't need an ostomy bag; instead, they would perform an internal procedure (an ileorectal anastomosis, perhaps?). Given that I don't have UC or Crohn's, I assume they might leave the rectum intact (apparently involving the removal of about 80% of the colon) and connect the small intestine to it. In the beginning, while at the hospital, I was suffering so much that I would have agreed to anything... if I ate, I couldn't pass it, the pain was excruciating, and I faced the risk of an ileus... so I fasted for a while and practically collapsed. Now that I am back home, my gastroenterologist has told me to fast again for a bit (which is extremely difficult to manage at home without an IV, not to mention how impossible it was to get any work done). Currently, I am unemployed, having been unable to work long periods due to this illness, though I am very hopeful about finding employment soon. I am curious about what life is like after a colectomy. I've heard I might have up to 20 bowel movements a day initially, though it is supposed to normalize. Personally, I could manage a job if it just meant frequent bathroom breaks, but I certainly cannot work if I am forced to fast. The idea of an ostomy and bags terrifies me... a permanent ostomy carries an 80% disability rating, and if I understand correctly, that stays on your official employment record. This leads me to wonder about my job prospects, given that I am only 26. Even if I don't end up with a permanent ostomy, if an employer requires an X-ray during a medical exam, the absence of a large intestine would be visible. Furthermore, if I find a job and then decide on surgery—or if my condition worsens—there is a possibility that after six months of medical leave, I would be placed on disability, which would be a total financial catastrophe. Right now, I am spending about $533 per month just on medications and supplements that MIGHT induce a bowel movement.
I am wondering if anyone here has had similar experiences, even those who have undergone surgery for UC or Crohn's. I would have already had the operation if my gastroenterologist had managed to convince a surgeon (there is a specific surgeon at the major metropolitan hospital who refuses to perform it), and I wouldn't even have time to contemplate this. I intend to visit a local hospital or perhaps a major university medical center (if you have any recommendations for a surgeon, please let me know). What do you think—is it possible to do this without a permanent ostomy (perhaps only temporary)? How does occupational medicine view a colectomy? And how does a colectomy affect future pregnancy?
Thank you all for any response you can provide; whether it be experience, advice, or a recommendation.

@ Roger Kern2: If I were in your shoes, I’d seriously think twice about going through with that procedure! You're looking at losing 80% of your bowel, and with a 26g measurement, you'll end up needing a stoma and carrying a bag around everywhere. Is that really what you want?
Have you looked into hydrocolon therapy or colon cleansing? What about alternative medicine? A radical surgery like this isn't necessary for someone with a 26g reading! Honestly, I can see why that doctor refused to operate on you.
If you're looking for a second opinion, I'd suggest seeing Dr. Patrlj, an abdominal surgeon over at the local basketball club's medical center.

lonefalcon41 said:@ Tena: If I were in your shoes, I would think very long and hard about that procedure! You'll end up losing 80% of your bowel, and with a 26g diameter, you’ll be stuck wearing a stoma bag everywhere. Is that really what you want?
Have you perhaps considered hydrocolon therapy—bowel irrigation? Have you explored alternative medicine? A radical surgery like this with a 26g measurement doesn't seem necessary for you! I suppose I can understand why that doctor was hesitant to operate.
If you are looking for a second opinion, I might suggest Dr. Patrlj, an abdominal surgeon at the local basketball club's hospital.

In my case, I cannot even pass water; first, they attempted a six-liter enema, and once they realized even that wouldn't work, they had to extract it via endoscope due to the immense pressure. Therefore, hydrocolon therapy—which involves pushing roughly 120 liters of water into the bowel—is simply out of the question. I have also sought out specialized alternative treatments where practitioners eventually told me they no longer wished to accept my money because there was zero progress. I have already reached out to Dr. Patrlj, and he has called me in for a consultation, so thank you for the recommendation.
The reality of the situation is that it was explained to me that I won't need an external stoma—meaning no bags—which seems logical to me provided the rectum remains healthy.
I am thinking quite deeply about it and researching everything... though the whole process is utterly exhausting. I have been told quite bluntly that if I develop an ileus, which seemed to be developing initially, they will have to make a midline incision from the esophagus down to the genitals, and even then, only if I arrive in time. Otherwise, it is fatal. Given all of this, I feel as though I can do nothing but fast and waste away.

Elizabeth Patel74 said:I don't have ulcerative colitis, Crohn's disease, or colon cancer—thank God.
I have colonic inertia—megacolon. As it was explained to me, the large intestine is essentially a "bag." I’ve been dealing with digestive issues for eight years now; previously, I could manage with laxatives, but now I’ve become resistant to them. I spent seven weeks in the gastroenterology ward—my first X-ray showed signs of developing an ileus. Since there were no bowel movements, they had to extract intestinal contents via endoscope. Every single thing I ate caused intense abdominal pressure and pain because I simply couldn't pass it... They recommended some medication from Germany—specialized fibers, tetra packs, syrups, water—then sent me home to observe. If things don't improve, a colectomy is the recommendation. For a while, my condition improved slightly, but now it’s bad again. No movements, just severe abdominal pain... and I am considering surgery because the struggle is becoming unbearable. From what I understand, I wouldn't need a stoma; instead, they would perform an internal procedure—an ileorectal anastomosis? Since I don't have UC or Crohn's, I believe they could leave the rectum intact (supposedly removing about 80% of the colon) and reconnect the small intestine to it. Initially, at the hospital, I was suffering so much that I would have agreed to anything... if I eat, I can't pass it, the pain is excruciating, and I risk an ileus... so I fasted for a period, but I was practically collapsing... Now I’m back home and my gastroenterologist told me to fast again for a while—which is extremely difficult to do at home without IV fluids, not to mention how impossible it was to get any work done during my stay. Currently, I am unemployed—I haven't been able to work long-term due to this illness—but I am hoping for employment soon. I want to know what life is like after a colectomy. Apparently, you might have up to 20 bowel movements a day at first, though it supposedly normalizes. I can work if I just need frequent bathroom breaks, but I cannot work if I am forced to fast. I am terrified of a stoma and the bags... a permanent stoma carries an 80% disability rating, and if I understand correctly, that goes on your permanent record. What are my chances of finding a job at 26 if that happens? Even if it isn't a permanent stoma, if an employer requests an X-ray during a medical exam, they will see that my large intestine is gone. If I get a job and then decide to have the surgery, or if my condition worsens, there is a possibility that after six months of medical leave, I would be pushed into disability retirement—which would be a financial catastrophe. Right now, I am spending a fortune just on medications and supplements that MIGHT produce a movement... $533 Monthly.
I’m looking for anyone with similar experiences—even those who had surgery for UC or Crohn's. I would have already gone under the knife if my gastroenterologist could just convince a surgeon to do it—there's a specific surgeon at the local hospital who refuses to operate on this... so I haven't even reached the point of overthinking it. My plan is to head to a local basketball club clinic or eventually a major teaching hospital like Mayo Clinic (if anyone has surgeon recommendations, please let me know). What are your thoughts—is it possible to do this without a permanent ostomy? Maybe just a temporary one? Also, how does occupational medicine view a colectomy? And finally, how does a colectomy impact future pregnancy?
Thanks to everyone for any kind of response—whether it was sharing experience, giving advice, or making a recommendation...

Hi. I don't share your specific issues—but regardless, I have to undergo an intestinal resection. After a lot of wandering around, I finally stuck with my doctor at Mayo Clinic. I’ve been admitted to the surgical ward there several times... and I can say with absolute confidence that I would trust them with my life. If you want the specifics or a recommendation for the physician managing my care—someone I trust completely—we can take this to PM.

p.s. It was honestly tough reading about what you're going through—I’m currently navigating my own rough patch, preparing for a resection, and eventually facing a total colectomy... I can't say for certain what lies ahead, but I know this path is grueling and painful. People dealing with this really need their support systems behind them.

Hang in there 😉—stay strong 🙂

Thanks, Roger Kern2, for the support. Honestly, my time in the gastroenterology department was pure hell... within a single month, I must have undergone at least 40 different X-ray procedures. It went from basic abdominal X-rays—because things were changing so rapidly that they could see severe bloating, air-fluid levels, and intestinal loops spaced out by 5 cm—to CT scans, color transit time tests, and small bowel transit studies (which usually take about two hours for most people, yet took me a staggering 36 hours!). On top of all that, I had three colonoscopies, a gastroscopy, and two anal manometry sessions. Throughout this whole ordeal, I was mostly fasting and could barely manage to walk ten feet at a time. At one point, the pain was so intense I actually blacked out and didn't wake up for a day and a half. I found myself praying to God to just let it end... and now, the symptoms have come back.

Elizabeth Patel74 said:Thanks for the support, honey. Honestly, my time in the GI department was pure hell... In just one month, I must have been in for X-rays at least 40 times. Everything was constantly shifting—one minute it was extreme bloating, the next they were seeing air-fluid levels and intestinal loops spread out by 5 cm on the scans. Then came the CT scans, color transit studies, small bowel transit tests (which usually take about 2 hours for a healthy person, but for me? A staggering 36 hours!), three colonoscopies, a gastroscopy, and two rounds of anal manometry. On top of all that medical torture, I was mostly fasting and could barely walk ten feet without needing to stop. At one point, the pain was so blinding I actually blacked out; I woke up a day and a half later. I was literally praying to God to just let me die... and now, the symptoms are back.

If I were in your shoes, I’d be hunting down a second opinion immediately. But honestly? It looks like surgery is going to be unavoidable.

I have officially been diagnosed with colonic inertia and chronic constipation. During my colonoscopy, the gastroenterologist actually pointed out how dilated my large intestine appeared, noting that it looked almost like a sac. It really did seem massive. Another physician mentioned that this condition is known as megacolon. I asked my mother about my digestive health during childhood, and she claims everything was perfectly normal back then. Is it actually possible for Hirschsprung disease or this type of megacolon to manifest during adulthood? I suppose I am wondering if the colon can expand later in life, or if I was perhaps born this way and the symptoms simply didn't surface until much later.

Elizabeth Patel74 said:I’ve officially been diagnosed with colonic inertia and chronic constipation. During my colonoscopy, the gastroenterologist actually pointed out how wide my large intestine looks—he said it looks like a giant sac. And honestly, it looked massive. Another doctor told me the term for this is megacolon. I asked my mom about my digestion when I was a kid, and she said everything seemed totally normal back then. Is it even possible for Hirschsprung disease or this kind of megacolon to show up in adulthood? Can an intestine actually expand later in life, or was I just born this way and the symptoms finally decided to hit me now?

Well, Hirschsprung is essentially the same thing as congenital megacolon. Personally, I highly doubt that's what you're dealing with, because if it were, you would have seen much more severe symptoms or other congenital issues by now.
In your case, it's most likely acquired megacolon.
The cause could be anything unknown, or it might be linked to diabetes, scleroderma, or endocrine issues—think things like porphyria or hypoparathyroidism.
It could also be intestinal pseudo-obstruction and so on.
Treatment usually requires surgery.

vividsailor7 said:>>Mb. Hirschsprung is essentially the same thing as congenital megacolon. I somewhat doubt that is what we are dealing with here, as one would expect other symptoms or perhaps additional congenital issues to have surfaced by now.
It is much more probable that you are looking at an acquired megacolon.
The underlying cause might be unknown, or it could potentially be linked to diabetes, scleroderma, or certain endocrine disorders—for instance, porphyria or hypoparathyroidism.
One might also consider intestinal pseudo-obstruction and similar conditions.
Treatment usually involves surgery.

I am aware that Hirschsprung disease is synonymous with congenital megacolon, but I suppose I wasn't aware that megacolon could actually develop later in life. I appreciate the insight.

Elizabeth Patel74 said:I realize Hirschsprung disease is basically the same thing as congenital megacolon, but I had no idea you could actually develop megacolon later in life. Thanks for clearing that up.

Don't mention it.

Look, I'm dealing with a similar situation regarding someone close to me—chronic constipation—and I'm doing everything in my power to avoid a colectomy.

I've actually come close to finding a fix two or three times already, but nothing has stuck—we've looked at nicotine, acupuncture, the mesenteric artery, even nerve innervation around the L1-L2 disc...

I'm not backing down until I pinpoint the actual cause and start treating it properly. Even Dr. Velnic—a coloproctologist I’d highly recommend because he’s incredibly kind, skilled, and actually takes the time to talk—mentioned that a colectomy doesn't address the root cause (at least not for this specific condition).

What would be helpful for me, you, and anyone else following this thread is:

1. Which doctors in the US have the most experience performing colectomies?
2. What criteria should be used to decide between a partial or a total colectomy?
3. Who performs minimally invasive colectomies?

Ronald Green31 said:Listen, I am dealing with a very similar situation involving someone close to me (it involves chronic constipation), and I am fighting tooth and nail to avoid a colectomy.

So far, I have come close to finding a solution perhaps two or three times, but nothing seems to last—whether it was nicotine, acupuncture, issues with the mesenteric artery, or nerve innervation around the L1-L2 disc area...

I don't intend to give up until I identify the actual root cause and address it directly. Even the colorectal surgeon you mentioned, who I would also recommend as being exceptionally kind, highly skilled, and willing to actually talk, Dr. Velnic, stated that a colectomy doesn't actually tackle the underlying cause (at least in this specific case).

What would be genuinely helpful for me, for you, and for anyone else reading this is:

1. Which doctors in the US have the most extensive experience performing colectomies?
2. What criteria are used to decide between a partial or a total colectomy?
3. Who performs minimally invasive colectomies?

I appreciate the information, but the issue is that this man simply stated he didn't want to operate, and that was the end of it—no explanation whatsoever. It would have meant so much to get some kind of reasoning; I pleaded with him for advice, asking him as a medical professional how to resolve this if he wasn't willing to operate. He either said he didn't know or suggested I work it out with my gastroenterologist—I can't recall exactly—but I was left feeling incredibly sad and disappointed. Whenever a gastroenterologist and I bring up surgery, the burden falls on the surgeon, and theoretically, there should be communication between them to coordinate care. Clearly, I shouldn't even ask this surgeon anything anymore. Today, through my gastroenterologist—who is truly doing everything possible to help—I finally got an answer regarding what that chief surgeon meant when he claimed a colectomy wouldn't be a good solution. Apparently, the situation would just reverse, leaving me with something like 20 bowel movements a day (I was expecting something even more horrific, as I had assumed frequent stools would just be a temporary side effect of the surgery). My gastroenterologist mentioned they had about six or seven similar cases at Mount Sinai Hospital that turned out successfully, where things eventually stabilized. Honestly, I don't understand why I am being left to suffer like this when I am certainly not the first or the last person to face this... and at a place like Mayo Clinic, where I saw a different gastroenterologist who noted clear indications for surgery, they performed about six (if not more) such procedures. I just wish I were treated like a human being who is suffering, someone whose basic bodily functions aren't working, rather than just a patient who deserves at least some reasoned explanation if surgery isn't an option. Instead, it feels like the gastroenterologist is left to "figure it out alone," constantly performing endoscopies and struggling through this with me. It almost feels as though certain people are just trying to avoid taking responsibility... it seems the abdominal surgery department at Mount Sinai has failed here...
It is a shame that Chuck has retired; he was the type of doctor who would fix everything, both the right and the wrong ways. 🙂

I’ve actually been hearing some wonderful things about Dr. Kovacevic over at Mount Sinai Hospital, who started performing colectomies about three or four years ago. He’s already successfully operated on about five children who required significant portions of their large intestines to be removed. The head of the gastrointestinal department has gone out of her way to tell everyone that he is truly the top specialist in the country when it comes to this specific procedure. Personally, I feel like getting a second opinion is always a smart move before jumping into a major surgery like this.
Best wishes and I hope everything goes smoothly for you!

Nicole Campbell90 said:I have heard about Professor Kovacevic over at Mount Sinai Hospital, who apparently began performing colectomies about three or four years ago. I believe there were roughly five children operated on during that time who required the removal of a significant portion of the colon. The head of the gastrointestinal department actually recommended him to everyone, suggesting he is the premier specialist in the US for this specific procedure. In my view, obtaining an additional expert opinion before proceeding with such a surgery might be a prudent course of action.
Best regards and I wish you all the best

Thank you very much; any bit of information is certainly helpful. If children were indeed undergoing these operations, then it is highly probable that they were being treated for congenital megacolon.

Nicole Campbell90 said:I heard about Professor Kovacevic over at Mount Sinai Hospital. He actually started performing colectomies about 3 or 4 years ago, and I think he's done it for maybe five kids where they had to remove a large section of the colon. Apparently, the head of gastro recommended him to everyone as the top guy in the US for this specific procedure. I guess getting a second opinion isn't a bad idea before diving into surgery.
Best wishes and hope everything goes well

I’ve also heard that Professor Kovacevic is pretty much the gold standard, so I’d definitely suggest going to him for a "second opinion." Though, honestly, you might not have a ton of options since this situation sounds pretty brutal—if your colon is stretched out like that and won't empty, you're in a tough spot. That surgery would probably be a total game-changer for your quality of life. The main thing is to see if they can just remove the dilated part and then reconnect everything back to the rectum, so you don't end up needing a colostomy bag. If they can pull that off, you could basically live a totally normal life because the root cause would be gone. And let's be real, the colon doesn't do much heavy lifting anyway; most digestion happens in the small intestine, while the large one just acts like a "storage tank" for waste. If that tank isn't working, it might actually be a lesser evil to just get rid of it than to keep suffering like this...
Anyway, I'm crossing my fingers for you! I really hope you find the best surgeon possible and finally get this issue sorted out for good! 👍

rapidheron2 said:I suppose I have heard that Professor Kovacevic is quite excellent, so perhaps it might be wise to seek out a "second opinion" from him. However, I suspect your options may be somewhat limited, given that this situation appears truly dire if your colon is stretched to that extent and cannot be emptied. It seems almost certain that such an operation would significantly IMPROVE your quality of life. The primary objective, I imagine, should be to negotiate a procedure where they remove the dilated portion of the large intestine and then reconnect everything to the rectum, specifically to avoid having to get a colostomy. If they can manage to perform it that way, you would likely lead a completely normal life, since the root cause of your distress would be gone. I mean, the large intestine doesn't serve a massive function anyway; most digestion happens in the small intestine, while the large one mostly acts as a "storage tank" for waste. If that part isn't working properly, it might actually be the lesser of two evils to just have it removed rather than continuing to suffer like this...
Well, I am keeping my fingers crossed for you, and I sincerely hope you find the best possible surgeon so you can finally resolve this issue once and for all! 👍

If it meant avoiding a colostomy, things would be much simpler... I will certainly pursue a second, third, or even fourth opinion if necessary... it is just incredibly difficult to commit to surgery, not only because of the loss of an organ, but also because of the reality that I could face another thrombosis.
Thank you very much for your response.

Elizabeth Patel74 said:Thanks for the heads-up, but honestly, this doctor just told me he doesn't want to perform the surgery and left it at that—no explanation whatsoever. I really could have used some guidance; I asked him for his medical opinion on how to handle the issue if surgery isn't an option, but he either said he didn't know or told me to just sort it out with my own gastroenterologist—I can't quite recall which,

Unfortunately, that’s just how it goes with a lot of doctors. I’ve got plenty of experience in the field and know people across almost every area of healthcare—these kinds of responses usually happen when a doctor hits a wall and simply doesn't know what to do with a patient.

Does Dr. Kovacevic perform colectomies? Is it laparoscopic or open surgery?

GSM Are you actually serious about asking about laparoscopic colectomy? If anyone in the US is performing that... I’m signing up immediately. I know they handle laparoscopic sigmoid colon resections over at Mayo Clinic—plus a few other minor procedures via laparoscopy. If anyone has more intel on that, please drop it here. I’ll switch hospitals and doctors in a heartbeat; I want someone operating with 21st-century methods...

Tena85, could you shoot me a DM with a solid recommendation for a gastroenterologist? I've been bouncing around far too much already—half of them barely understand how the gut works, and the rest don't seem to care at all. The one specialist I actually thought I could rely on completely bailed on me right after my last flare-up and hospital stay...

I will state it plainly here, as I have already mentioned my intention to visit Holy Spirit Hospital. It is widely understood that they house the premier GI Disorder Referral Center in the country. I am planning to see Professor Jurčić, though I suppose Dr. Marušić is also quite highly regarded, as is Dr. Troskot, if the rumors hold true. I previously consulted with Professor Babić at the Dubrava Basketball Club clinic, but I would suggest prioritizing Holy Spirit; they, for one, seem to be the only ones equipped with an anal manometry device.