Posts by Elizabeth Patel74

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.

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.

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.

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.

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.

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.

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.

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. 🙂

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.

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.

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.

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.

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.