Huge update, Hospital rant and diagnosis.. And question????

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So yesterday was pure hell. My Mom got me to the Er at noon after calling both my GP and GI office and asking what I should do about all the pain that I have been in. I as instructed to go to the ER (YEP another $400 copay that I cannot pay).. The only thing that they did different was give me a liquid contrast CT scan and pain medication that I cannot get anywhere else. (Iv Fentanyl)

More on this at the end...




Rant: warning.... Skip this if you don't want to be as pissed off as my sister was who lives back in Florida She was read to book a flight and come up and scream at people.....


Nine Hours... NINE HOURS!!!!! That is how long I was at the hospital yesterday. Got there before noon and did not leave until after 9pm...... Here is the worst thing.... I never got a room. I got a bed in the hallway....AFTER FOUR HOURS IN THE WAITING ROOM!!!....HELLO!! Severe gut pain on someone with a history of bowel perforation and I have to wait...GET THIS...SEVEN HOURS FOR A CT SCAN.... there were several shift changes while I was there so I had to explain things to several nurses over and over again while in the HALL WAY..

YEA EVEN MY MOM WAS FREAKING PISSED AND SHE IS A SAINT.


All and all it was the same as before, nothing that would keep me in the hospital was found...

*****Diagnosis***

SO right as I was getting pain medication my GI doctor called me. I told her that I was in the ER and then she broke the news to me as to what was found on the Anorectal monometry test. I have bowel dysfunction of both anal sphincter muscles with upper sphincter nerve dysfunction in that it is firing and telling my body that there is something wrong and not allowing things to move the way that they should.

Not the news that I wanted to hear. Doc. realized that I was being giving pain medication and tried her best to get as much information to me as I could understand with all that was going on (I was on a bed in the hallway of a packed ER)

I was cleared to take Tylenol for pain.. and they are trying to figure out what they can get me of the other gut issues (Maybe some muscle relaxers)

Big thing is that this is all just starting and now I have to wait tell they set up biofeedback therapy.


Two things were brought up that I think I understood while the pain medication was kicking in...

One I may need something done to stop the inner sphincter from dysfunctioning and causing me pain. Don't know if I understood the doctor correctly but there are a few options for that...Botox. Or severing the nerves. Big thing is everything that I read today seems to point to that the lower sphincter muscle being where they inject botox and not the upper which would be hard to get to I would think. But I don't know...Again I was on pain medication.

Don't know how I feel about that at all???

Questions I have for the doctor next week are..

What is the next step?

How long am I going to have to wait for appointments?

What is the realiztic outcome of biofeedback for someone with both sphincter muscles having dysfunction???


One for my GP...

Can you have Bladder Dysfunction???

So yea yesterday sucked and It took me some time to be calm enough to post a rant about the hospital... Trust me....After yesterday if there was not a paper trail started I would be going somewhere else.

 

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Wow, sorry to hear all that was going on. It’s kind of crazy if the hospital has open beds and all their staff to make someone wait that long. Sorry that happened. Would hope someone finds a solution that works for you soon.

 

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Geeeezzzzz! In the first place if I were your sister I would have booked that flight and come up to scream at some people. Utterly unbelievable! If I were you I think I would have gone to another medical provider although that inconvenience is the last thing you want! Since you mentioned Botox I think that would be something worth looking at. And soon!
I'm happy to see you outline the next things to ask the doctor just as soon as you can see her. i.e. asking her what the next step will be and how long you're going to need to wait for appointments, etc. Ask point-blank and keep staring at her until she commits to an answer if need be! Don't let her answer the phone or whoever is knocking on the door. You have her attention! And also continue to ask those specific questions about biofeedback. I think I would hammer in on the biofeedback until you get a "yea or nay" answer that is explained satisfactorily.
I know from experience that the pain "down there" is real and is not being made up. Quite a few years ago I had what was diagnosed as pruritis ani. As conditions go it isn't that big a deal but for someone with it, it hurts like all get-out! I thought I had hemorrhoids and the doctor recommended Tucks pads which seemed to take care of the pain. I think I had to use them for a few weeks as I recall. But the way the nerves are set up around the anus makes things extremely sensitive down there and although it may be just a tiny lesion but thanks to its location it hurts like all-fire hell! OK I'll back up a bit from what I said earlier. You do have a paper trail at this place where you are now so it would probably serve you better to just stick with it, at least for now.
I hope you are more comfortable this evening and maybe things will be a bit clearer in the morning.

 

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@ThatFLGuy so sorry that you are having to go through all of this, take care, Phil

 

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I feel for you. I really do. I've been there. One thing to realize for anyone seeking care at the er. And saying this is in no way making light of your situation and pain. Acute and chronic abdominal pain, including bowel dysfunction or other intestinal problems are the number one non life threatening reasons for er visits. And some life threatening reasons. It is also the most difficult to diagnose, especially in the er. A bed in the hallway seems degrading and makes you feel less important. Like the pain you have is not as bad as other's. But believe me when I say that this is not the case or reason. They realize you hurt. But also realize that you likely are not going to crash. And if you do, they can get you help ASAP. They just need to keep rooms open for acute patients, trauma patients and the like. I'm not making any excuses for any behavior that might have been less than professional, I wasnt there. As a former medic, I can tell you what I know. As far as getting more tests done, it is a lot of hoops to jump through. If sucks! But keep jumping. Try to avoid too much self diagnosing but always educate yourself. Doctors know the human body. You know YOUR body. Dont be afraid to tell the doctor he might be wrong, but if you can, be ready to offer a different idea, treatment or test. The doctor cannot memorize everything in his textbook. Sometimes they need help from their patient. Good luck. Keep your spirits up. Dont stress. Stress messes with the bowels. It can even mask real problems and keep the doctor from seeing the symptoms he needs to to get to a real diagnosis. Be calm. Relax. You WILL make it through this. You will.

 

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@Steven1980, A very good explanation here from an "insider." Thank you! That should help all of us see how things operate on the medical side, especially when seeking emergency care. What you said about doctors knowing the human body and you knowing your own body really hits the nail on the head! I also agree that stress messes with the bowels. I know that from personal experience and wish I knew of a way to make that less so.
It makes sense that they need to keep certain rooms open for major trauma, chest pain and anything that requires immediate attention.
And FLGuy, it probably just so happened you picked an unfortunate time to go to the ER. Sometimes they just get slammed as every Tom, Dick, Harry and Harriet chose that particular time to get treatment. I'm sure @Steven1980 will agree but there is just no way to predict when the best time to go to the ER is. It may be "so quiet you can hear a pin drop" quiet one minute and then two minutes later, five ambulances, 10 cars and a helicopter all descend on the E.R. at once.

 

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You’ve been totally screwed over by your current physicians and hospital system. You should have changed months ago when you first realized how little they care about you. Many of us on this forum made that recommendation to you.

There’s no need to stay at a place just because of “the paper trail.” Medical records are digitized and can be transferred between physicians and systems in mere moments. I’ve had to do that several times. I used to work in medical records. It’s no big deal, seriously.

What is a big deal, is how you’re suffering. You’re clearly not going to see any improvement or resolution unless you change doctors and hospitals. Your current providers have proven to you over and over and over and over again that they’re not going to help you. Quit tolerating that kind of treatment. By putting up with their abuse, you’re abusing yourself.

 

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Billi, you are right. Things change in an instant. 5 to 9pm is busy and after midnight when bars start closing and people drive home drunk. Cold winter nights and stormy weather are busy times too. From crashes due to ice or bad driving conditions and homeless people trying to get warm. And unfortunately, people seeking pain meds mostly at night. I think it's best to go in with the mindset that you will be waiting a while and dont make dinner reservations. Lol.

 

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If I have to go to an ER, I plan on it taking 24 hours and that way, I don’t get upset once I get there. Always take a book... though some kinds of pain make it impossible to read, that’s for sure.

 

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Or instead make dinner reservations in the hospital cafeteria! Once again, @Steven1980 you have explained perfectly why ERs get busy at certain times and that someone seeking treatment needs to reconcile themselves to the fact that there may be quite a wait. Having lived up in PA and New England for many years I well know that there are many crashes because of ice, snow and overall driving conditions. And always homeless people want to get warm. And that's in the winter, not the summer, of course! And FLGuy, I read Snow's suggestion up above and I think it may be time to consider going elsewhere. If it were me and I had read that I would definitely begin to think twice about staying with the same outfit. You're just getting the run-around and that's not right! And I know I was one of those who suggested you go to a different provider a couple of months ago. And I'll reiterate that now. Are you near enough to a different hospital system that you can go there? Even better, is there a hospital or a clinic nearby that is NOT part of a big system? That's the trouble these days, it seems all hospitals, no matter how small or big are locked into a larger system that encompasses a whole geographic area and unless you're a large metropolitan area that really leave no choices for us. So please consider changing over. It's obvious you're not getting the type of service you deserve!

 

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Snow, I dunno. Your mind creates images as you read. If reading in extreme pain, it might be fun. Imagine reading a nice and romantic romance novel but your mind pictures everyone in pain. That would be weird. Lol

 

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My biggest problem is that most doctors are all online and share files. So even when you see a new doctor, they like to just follow the previous doctor's advice and treatment and diagnosis. You have to convince them to start over with an open mind.

 

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Wow. They put you through the wringer. That sucks. You are way beyond Urgent Care.
Snow has it right, so does Steven1980, but not all of us can switch physicians and hospitals. A few years back, the state denied some hospital requests for more ER and ICU beds. They need permission to have more. That was before Covid. 6 months after Covid, the bureaucrats will forget what happened. No wonder we have a nurse shortage, too, and it is now worse.
Our ER is usually busy. Not sure how many rooms (8? 12?), but there is often several people waiting in lobby to be brought in. That's during normal times. Time of day counts. Tourist season counts. "Repeat locals" count. "Drunk holidays" (like 4th of July) count. (They may send a "fish hook" to the Urgent Care.) When you "check in", if it seems serious, there is a Triage Nurse right there - to assign a Priority; sometimes they have to "work" the ER. Just walking/being carried into the ER might be close to $1,000, and that's before treatment.
In as much pain as you were/are, you don't get a choice of when.
Does being kept in the hall mean they were overwhelmed? ER nurses hate having to do that.
Our hospital has a medivac helo on a pad, there - the cost of that is around $20,000 for a 45 minute ride to the big city. Not sure about co-pay.
We are not a Covid19 hotspot, although our risk has just been raised to "high". High-denial state with an unbelievable number who won't wear masks. Big grocery stores offer free masks as you enter, but don't enforce it.
Sounds like you are living in a whole different world.
Does all this mean you are now a higher risk with Covid19? If so, take precautions & stay safe.
Fill out a survey and write a letter.
Wish I had a solution, for you and everyone else. At times like these, we see the medical system for what it is - broken. We elected the people in charge...

 

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And you know, @AlasSouth, we have a chance in November to elect different people. So please, whether you're in Alaska or Florida or Pennsylvania or wherever, go out and vote! We've read right here, first hand, prime examples of how messed up our medical system is and let's not blow our chance to speak out at the polls!

 

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Yuppers. Vote for Trump.

 

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Actually, everyone, this is not a political site. Talking politics on this type of site is very risky and I want to keep the healthy dynamic that we enjoy here. There are plenty of political sites out there for those who want to debate politics.
If my message above was construed as being political then I do apologize because that was not my intent. Thank you for understanding.

 

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Yeah, it was a joke, not politics. But it sure stopped the posting. Lol!

 

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@billliveshere I only interpreted your post as being pro-voting, not pro-party. I also strongly urge everyone to vote.

 

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Good, @snow, your interpretation is 1000 percent right on! After giving it some thought I just didn't want to run the risk of upsetting what we have here. It is pro-voting and is not pro-party or pro-anybody. Thank you for also urging everyone to vote.

 

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Snow and billliveshere: I just don't have a solution that will work in our political climate and economy. How do we fix even just our issue - incontinence? I agree we should be avoiding politics, yet what do you suggest can fix things? But I'll try to avoid politics.
My really big hospital is in the process of merging with a strict (and strictly) Catholic system. The hospital claims to be the last big hospital in the entire country to do the massive merger thing, and it is necessary to gain the "scale" to be financially sound and serve a bigger territory that isn't being served sufficiently. They have I don't know how many big clinics scattered around. (No one is re-opening all the rural and small hospitals closed or closing, but never mind). Some of us patients were asked to read the documents and give our evaluation. You all know how verbose I am - so you can just imagine the length of my evaluation of the "Catholic Bishops' Directive". Religion and medicine do not mix well, in both my opinion and experience. There are so many high and moral objectives in that Directive, ones you cheer on - and some serious contradictions, especially for those needing pain control and/or in end-of-life situations. Both of which often involve incontinence.
The mergers and buy-outs have eliminated small hospitals, turned what were hospitals with ERs into "urgent care" only. The mileage (and times) for an acute patient to reach a full-service hospital is bad enough, because of that. Then picture any big city during rush hour!
I'm dead serious - and that is NOT a pun.
Then consider: the shortages of doctors and nurses. Then consider how the medical profession is avoiding certain specialties, like ours - it isn't profitable enough. Even Geriatrics isn't being taught in some Med Schools, any more - it isn't profitable enough. Then consider the long established medical staff at a hospital or giant chain - who are faced with a choice of staying with a new system with values that conflict with their own and who have a different administrative philosophy. Don't forget the cost of the student loans to become a doctor or nurse.
It bodes badly for our issues.
My local small hospital is struggling - and there is something wrong with administration - they can't keep doctors & nurses. The turnover is way too high, and we are a territory with only one doctor in a specialty, often. We did without a cardiologist for many months. Forget neurosurgery. There was only 1 urologist (not popular), for a while. I think it's still only 1.
Non-political suggestions welcome.