Colonoscopy fiasco and terrified now, ADVICE?

Posted by user_ch783e933 @user_ch783e933, Aug 19, 2023

Had large precancerous (benign) polyp 2012 (first colonoscopy, lots of symptoms for years, who knew?) Followup (same doctor) 2014. Advised to wait five years after that.

Next gastroenterologist (first one moved to CA) was some sort of jack the ripper murderer. Why, you might ask? He found a tubularvillous 2cm polyp and DIDN'T TELL ME ABOUT IT because (in his notes, which I read when I sent for the records for the new gastroenterologist) because he found my colonoscopy "very difficult". He actually told my former PCP (I fired her too) that I should have a cologuard test next time instead of a colonoscopy!!

So I was terrified by this new doctor and I don't respond well to fear and terror. It makes me ANGRY. He scared the heck out of me "You should have had followup in three years, it's almost four now". Scheduled for 9/14.

Problem: YOU CANNOT TALK TO ANYONE IN THIS OFFICE, EVER. The machine takes messages. They never call you back. I called for an appt. on this past Wednesday and today is Saturday, no call back. He joined a practice that I don't like, I never liked, and don't want to go there. He might be good (referred by a retired doctor I know) but he's in a TERRIBLE practice.

I got hemorrhoids about 6 weeks ago, first ones ever and I'm old. Now I'm terrified of the prep. Because of those stupid things, I lost five pounds in six weeks: change of diet trying to avoid any sort of straining during BM. So this prep is going to set me back and give me another six weeks of hell with these hemorrhoids and I can't afford to lose any more weight, I'm only 115 pounds.

I'm thinking of just letting it go. I'm so traumatized already, I have so much grief from losing my daughter in 2011, I have an anxiety issue now because of her death, I just don't know what to do. I don't want to hear horror stories OK? I looked for another Dr. and across the river in the hospital that does all my imaging (mammo, etc.) there's a gastro Dr. whose office is actually in the hospital if something goes wrong. I have no idea who he is, haven't called the office yet. I haven't found one single doctor I can trust upstate NY here and I'm living here 20 years now.

What % of tubularvillous adenoma come back? What % of those turn to cancer? How long does it take one of those to turn to cancer? Could one have developed to 2cm in only five years or did the gastro Dr. from 2014 miss it? WHAT SHOULD I DO I have no one to talk to.

Interested in more discussions like this? Go to the Digestive Health Support Group.

So sorry to read what you have been going through and although spouse has had polyps removed and anal cancer treated a few years ago, he did not have to go through the emotional trauma you are experiencing - on top of your pain and suffering... I agree it is so important to trust our doctors and others in medical field... just to say I hope you get some comments on here that might give you some support/advice ... or tell you a good place to get help.... the emotional side of illness and the way we are treated - all on top of coping with illness - is a lot to cope with.... best wishes, J.

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I've had luck eating raisin bran most mornings and using Miralax as needed.
You might get your current Gastro doctor to call in a prescription strength ointment and anal suppositories for hemorrhoids.
Then check into finding another Gastro doctor connected to hospital. You must do the prep to the "T" in order to have a successful colonoscopy procedure.

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I'm sorry for your loss and all you've been through. For what it's worth, the unfortunate events of your past won't go away unless you can find a way to let them go, and you will.

As for moving forward, start by finding a good PCP, ideally at a well known medical facility where you live. The PCP can then refer you to specialists.

All the best to you.

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@heyjoe415

I'm sorry for your loss and all you've been through. For what it's worth, the unfortunate events of your past won't go away unless you can find a way to let them go, and you will.

As for moving forward, start by finding a good PCP, ideally at a well known medical facility where you live. The PCP can then refer you to specialists.

All the best to you.

Jump to this post

Seriously? I very much doubt losing my 23 year old daughter in a shockingly tragic way is something I can "let go".

Moving forward? PCP? I've been through four since my trusted PCP retired in 2015. I'm on number five now. It's the medical practice that ran the Covid response in my county and it's so overcrowded with patients that they brought my former PCP's partner out of retirement. He's up the mountain, literally, and there only two days a week (part time). I'm not happy but I can't switch to the main office because they're overloaded with patients. This is the best I can do around here. The teaching hospital an hour away? had that internist for about a year as a PCP, then I found out she didn't know who she was talking to when I called her because of a problem I was having, she thought I was someone who worked at the hospital. Really great health care, huh?

I don't need referral from a PCP. My insurance allows me to go to any doctor I choose.

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@jackielb

I've had luck eating raisin bran most mornings and using Miralax as needed.
You might get your current Gastro doctor to call in a prescription strength ointment and anal suppositories for hemorrhoids.
Then check into finding another Gastro doctor connected to hospital. You must do the prep to the "T" in order to have a successful colonoscopy procedure.

Jump to this post

My "current Gastro doctor" is incommunicado, unavailable for comment, impossible to talk to, can't even make an appointment: his staff STINKS, beyond stinks, and they're not "his staff" since he's in a practice with a GI doctor who's been around for 30 years. I called to make an appt. last Wednesday, of course you can't speak to an actual person, only machines, so I left a message. Not a particularly friendly one. And not one call back, I said I needed an appt., not one call back at all Thursday or Friday. Imagine if something goes wrong during that procedure? No one answers your call.

As for ointment etc., PCP prescribed it. I'm afraid of the prep and what it will do to those things, never had them before. It took weeks for them to clear up and I lost five pounds in the process. I can't eat bran: fructan. I'm working on using miralax to keep the bowels flowing freely, haven't figured out how best to use it without causing too much BM.

I found another GI doctor associated with the hospital where I get all my imaging done but I haven't met him, haven't even called his office. Because his office is IN the hospital, this is better should something go wrong. Also, this is a huge corporate practice that spent literally millions rebuilding this hospital so there's always someone to talk to and always someone on call.

Let me point out here: the GI "doctor" who did my third colonoscopy in 2019 might have killed me, he still could have killed me. He deliberately kept information from me regarding the nature of the polyps he removed: one was tubulovillous, the other was sessile, both are known to be precancerous. There was no dysplasia but tubulovillous COME BACK 60% of the time and THAT one was in the same location as the first one removed in 2012. He NEVER TOLD ME ANYTHING ABOUT THIS. When I got his notes, I saw he had a difficult time with my colonoscopy, my colon is "corrugated" according to him. Odd that the doctor before him, who did TWO colonoscopies for me, never complained about that. THEN he told my then PCP (another lousy doctor) that instead of colonoscopy I should have Cologuard tests: well known for positive false results AND won't remove a dangerous polyp, will it. THE MAN IS A MURDERER.

So trusting another GI doctor is going to be next to impossible.

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I had SEVERE constipation last week. I really and truly thought I was going to die as I already had a burst bowel once with colostomy, resect and giant hernia and I HATE my local hospital! I decided to buy these little Fleet enemas with glycerin in them. They're called suppositories. It's totally liquid maybe about a tablespoon or less. I have very slow metabolism. Inserted it at 3 pm. Got up from the bed and it poured out and I was like "oh well". Went about my day. Couldn't eat dinner and was nauseous (not a good sign)Woke up at 3:30 am and was able to go for the first time normally in a long time! Took my body 12 hrs to metabolize the suppository 🙁😳 Also woke at 5:30-6 am to completely empty out. Omg. I felt normal again.
I don't know what it is with doctors these days. It's like since Covid came all the doctors left and it's just newbies with no experience or bad doctors.
If it's any consolation, my leukemia doctor never calls me back nor answers portal messages. It wasn't until I started writing in the portal about how I was('nt) being treated or responded to that I started getting any responses 😡😡. It's a 13 hr round trip into NYC to see him (by bus) for a blood test and him telling me everything is great. This time I told him to send the labs and I'd have them done out here and we can have a virtual - and that's what we're doing! I'm in plenty of leukemia groups and I've never heard of someone being treated like this.
I'm sorry you're having such terrible gastric issues. Since my burst bowel in 2015, when surgeon also took my sigmoid colon(!), I have a great fear of anything concerning my lower abdomen and bowels. I think this last episode was the most frightening. My husband said he had read up on what was happening to me and was going to take me to the hospital!! Glad that little tiny liquid glycerin suppository worked!!
Good luck to you. Keep searching until you find the doctor you are comfortable with. You've been treated very badly in the past and deserve better. ❤️❤️

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@user_ch783e933

My "current Gastro doctor" is incommunicado, unavailable for comment, impossible to talk to, can't even make an appointment: his staff STINKS, beyond stinks, and they're not "his staff" since he's in a practice with a GI doctor who's been around for 30 years. I called to make an appt. last Wednesday, of course you can't speak to an actual person, only machines, so I left a message. Not a particularly friendly one. And not one call back, I said I needed an appt., not one call back at all Thursday or Friday. Imagine if something goes wrong during that procedure? No one answers your call.

As for ointment etc., PCP prescribed it. I'm afraid of the prep and what it will do to those things, never had them before. It took weeks for them to clear up and I lost five pounds in the process. I can't eat bran: fructan. I'm working on using miralax to keep the bowels flowing freely, haven't figured out how best to use it without causing too much BM.

I found another GI doctor associated with the hospital where I get all my imaging done but I haven't met him, haven't even called his office. Because his office is IN the hospital, this is better should something go wrong. Also, this is a huge corporate practice that spent literally millions rebuilding this hospital so there's always someone to talk to and always someone on call.

Let me point out here: the GI "doctor" who did my third colonoscopy in 2019 might have killed me, he still could have killed me. He deliberately kept information from me regarding the nature of the polyps he removed: one was tubulovillous, the other was sessile, both are known to be precancerous. There was no dysplasia but tubulovillous COME BACK 60% of the time and THAT one was in the same location as the first one removed in 2012. He NEVER TOLD ME ANYTHING ABOUT THIS. When I got his notes, I saw he had a difficult time with my colonoscopy, my colon is "corrugated" according to him. Odd that the doctor before him, who did TWO colonoscopies for me, never complained about that. THEN he told my then PCP (another lousy doctor) that instead of colonoscopy I should have Cologuard tests: well known for positive false results AND won't remove a dangerous polyp, will it. THE MAN IS A MURDERER.

So trusting another GI doctor is going to be next to impossible.

Jump to this post

I have colonic inertia, as well as a tortuous/redundant colon. Colonoscopy preps have always been a nightmare and have never been “complete” enough for them to do a thorough exam, despite following instructions precisely,
I had to do a prep recently for a different procedure and it worked amazingly well. I could not believe that I was totally clear in a matter of hours with little discomfort. I also have hemorrhoids.
The week before, I added a 1/2 capful of Miralax to my am coffee. I also began gradually cutting back on high-residue foods the closer I got to the day. Two days before, I went on an all clear diet, nothing but jello and clear liquids. Once I started having loose stools, for me, even before I started prep, I used Desitin, and reapplied as often as needed. And soft tissue or wipes. If you can’t flush wipes, toss in garbage. And blot, never wipe. All this will help your bottom and make prep so much easier. At least it did for me. Of course, run this by your dr. Mine told me it’s like a “pre-prep” to get things moving so the actual prep has a better chance of working and is not so traumatic. Best of luck! I’ve also had some horrible, unfeeling drs, so I can totally sympathize. Always wonder why people like that choose health care as a profession if they so dislike dealing with sick people? And it’s not just drs.

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@sallyw133

I have colonic inertia, as well as a tortuous/redundant colon. Colonoscopy preps have always been a nightmare and have never been “complete” enough for them to do a thorough exam, despite following instructions precisely,
I had to do a prep recently for a different procedure and it worked amazingly well. I could not believe that I was totally clear in a matter of hours with little discomfort. I also have hemorrhoids.
The week before, I added a 1/2 capful of Miralax to my am coffee. I also began gradually cutting back on high-residue foods the closer I got to the day. Two days before, I went on an all clear diet, nothing but jello and clear liquids. Once I started having loose stools, for me, even before I started prep, I used Desitin, and reapplied as often as needed. And soft tissue or wipes. If you can’t flush wipes, toss in garbage. And blot, never wipe. All this will help your bottom and make prep so much easier. At least it did for me. Of course, run this by your dr. Mine told me it’s like a “pre-prep” to get things moving so the actual prep has a better chance of working and is not so traumatic. Best of luck! I’ve also had some horrible, unfeeling drs, so I can totally sympathize. Always wonder why people like that choose health care as a profession if they so dislike dealing with sick people? And it’s not just drs.

Jump to this post

TY! I couldn't use miralax everyday like that, I'd have nonstop diarrhea, but I certainly can use it every other or every third day for a week and yes I will eat low residue, I did that last time. They gave me a plenvu prep, I'm not happy about that, I prefer to use the miralax I'm used to that one, did it three time sprior. The hems are really worrying me though, especially one of them which is a little irritated just from normal BMs lately because there has been so MUCH of it. I actually got the office to respond to me, I have a video appt with the Dr. Sept. 5. I need a better explanation of what is going on and to talk about the hems as well as change the prep to miralax. I just wish I didn't have to go through that and the former gastro Dr. is now about to receive a State licensing bureau complaint from me for not telling me the truth about the colonoscopy results in 2019!!!!!! If I had known then, I would have had this followup two years ago and not be in this position now. I'm so tired of doctors scaring us, I'm just so tired of it.

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