OK, so, getting to the end of our rope, perspective needed.

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GOOD!!!!
Tell me did you leave the GI shaken in his boots????:voodoo:

Were you authoritative and demanded what you wanted?:voodoo::voodoo:
 
As logical, calm, and organized as I could manage. Dr. B generally lets me get about 4 syllables out before he starts filibustering again. ;) I think he's trying to keep me from rambling but the result is that I don't feel quite like he's listening to what I have to say. Still, though, he did address all my questions even if he made me feel like I was on a timer to get them out.

He's going to talk to a dietician and figure out what formula is best for Sarah (he kept stressing that you can't just go and start EN in a day, you have to plan it all out and get insurance approval and get a homecare company and etc etc.) In the meantime, I guess we're not treating her flare (for a week?) even though initially it seemed she'd be on vancomycin in the interim. That seems to have been dropped.

He was the one to bring up fecal transplant as a (low probability of helping) option. He said he'd do it by scope but wouldn't combine it with a diagnostic scope since he wants to take lots of biopsies.

He said Tacro is more risky than prednisone in terms of side effects, but I stressed how steroid dependent Sarah always ends up and he said one nice thing about Tacro is that you can just stop it cold. So, it seems Tacro will be an option for us to try, at least to reduce flares (not as a maintenance drug.)

He thinks Humira is a logical next thing to try even though it's only recently approved for UC in adults, and according to Dr. B it barely squeaked by because the findings were terrible.

He said he's spoken to the woman who headed "the" LDN study (not sure if there's only one major study, or...?) and he was unimpressed with her results. He says he and his colleagues have tried it and their results have been poor.

We didn't discuss methotrexate at all.

I'm wondering if I should be trying the Vancomycin (he wanted to pair it with a clean out) since he seemed to favor that option over EN, to the point that I'm really doubting my decision now. :-/
 
Sleep on it and call back tomorrow and tell the nurse you want a change if you are more comfortable with the Vancomycin. You G.I. seems very reasonable and logical.

If a drug works well for UC will it also work well for crohn's colitis? Is it more about the type of disease or the location?

It is hard to go through all the work of EN if the G.I. isn't completely on board. Has Sarah changed her mind about it at all? My son gets so upset if I even mention it. I am not sure how far I would push him on it.

I am sure you will get a clearer idea of things after the scope and MRE.
 
I think ideally we'd start EN before the scope or imaging, just because it will likely take a while to get the scopes lined up. The logistics of having this stuff done in Boston complicates things, and Dr. B said we may admit Sarah to the hospital for clean out due her ITP (though we haven't done that in the past).

He's fully willing to do EN properly and with all earnest, is the impression I got. He just doesn't think it's likely to work.

Evidently UC and CD differ in what's efficacious, like Humira works for CD but for UC, not so much.

I'm curious to see what EN will do for her EIMs like her total body joint pains and poor complexion. I know she doesn't eat particularly well except for at dinner time when I get to supervise exactly what and how much goes in her mouth, but if Vancomycin is likely to work well for her, and Dr. B is endorsing it fairly highly and with a lot of confidence, maybe I'm being a jerk if I delay that.
 
Muppet - fwiw our gi also talked with the head study doc of LDN - he agreed to let us try it but wasn't sure if would be enough in DS case.

Before the stoning crew comes out. :ack:
We chose not to go that route given the info the Gi told us and our sons history .
 
I agree with you MLP. I would have to have no proven options left before I tried LDN. I think it shows a lot of promise but I haven't seen enough evidence to forgo something like Remicade in it's stead.:shifty-t:
 
Sarah was adamant that she wants the tube rather than having to drink 8 shakes a day. I'm surprised, but Dr. B isn't. He says that's common. I wonder whether Sarah might not like the idea of having a visual indicator of her UC/CD to go with the illness she's been trying to explain to her friends for years, but I tend to overanalyze stuff like this. She's already been making jokes to her friends via text/facebook about her new "piercing".

Dr. B says he may have Sarah admitted for a night to place the tube and observe her with it for some feeds. I have no idea if that's typical or not, seems overly zealous. Maybe we can get the tube and the scopes all done at a go this way..?
 
muppet said:
. Dr. B generally lets me get about 4 syllables out before he starts filibustering again. ;) I think he's trying to keep me from rambling but the result is that I don't feel quite like he's listening to what I have to say. Still, though, he did address all my questions even if he made me feel like I was on a timer to get them out.. :-/
Click to expand...

Well now you should be used to this;)

Sounds like it was a VERY productive appointment...scopes and a few different options.

On EN in general mind you not specific to UC...while it has great success at achieving remission it isn't that great at maintaining unless of course there is another maintenance med involved so I am assuming she will continue her current meds. But the real reason I started this was to tell you I have recently seen two studies (and forgive me but I don't have them at my finger tips like some people we know<() ) that say once EEN is completed that a maintenance dose of EN will extend the period of remission. So if you do this don't be a dork like me and let your daughter drop it cold turkey...keep a shake or two going in daily.
 
Before the stoning crew comes out. :ack: .[/QUOTE said:
This is your day. No stoning allowed...but can't protect you tomorrow!

I am also a member of the watching LDN and very interested but not ready to pull the IV line yet!
Click to expand...
 
Ugh. While he might not be interested in hearing me finish my paragraph, he's definitely no Jeff Hyams, and THANK GOD. :p
 
NG tube? Ours was done in office, and we were sent on our way, but our experience wasn't the best (we were the first voluntary ng for en). I think with some teaching it could easily be done outpatient but understand why he may want to observe. You have to start the feedings super slow or they will vomit.
 
If your daughter has any trepidation of being seen with her feeding tube, I've seen several youtube videos of pre-teens and teens inserting their own feeding tubes and they give really good advice also. She may be able to relate to them and make her feel more confident inserting and removing her own tube. I was really impressed with this one:

[youtube]YJIFOCbPTjo[/youtube]
 
Muppet,
We recently started EEN with our 3 yr old son Clark. We went to the hospital to have the tube inserted and and have him monitored for a few hours. We learned alot but when we got sent home we were told to do a normal feeding that night. It must have been too fast and the formula although at room temperature was too cold. He kept saying how cold it felt. He ended up throwing everything including the tube up around 2am. I had to take the tube out and we put it back in the next day with the help of a home health nurse. It was pretty traumatic for him and my husband who was crying as much as he was. So go very slow and build up to the max dose over a few days. He is however doing great now. More energy and much happier. He did have a hard few days without food but has now gotten used to it. I would suggest going to the hospital if you have the option so it is done correctly and you can ask all the questions there on the spot and get answers. Good Luck :)
 
CHB Radiology called and left a message today wanting to schedule Sarah's MRI but I haven't returned it yet. If Dr. B is going to want her inpatient to do the NG tube, and inpatient to do her scope cleanout, it seems like we could kill 3 or 4 birds with one drive to Boston, here.
 
Wow! Muppet I totally missed your post about Sarah wanting the ng tube. How awesome that she came around like that. I remember when you posted she was pissed at your for suggesting it. I really really hope it makes a difference for her.

I like your point about killing a few birds with one stone.
 
It may indeed wear off , but right now I think her attitude about it is awesome :) -such a rough age anyhow without these things :hug:
 
^^^^Ditto! She surely is a champion!

The consult sounds like it was productive. :)

Any chance of getting urgent scopes and MRE done?
My concern is...if there is even the slightest chance that Sarah may have Crohn's having the testing done after the commencement of EEN may well wipe out your evidence.

Dusty. xxx
 
I'm not sure how the timing will go down right now. I understand the concern, but at the same time, Sarah's blood clotting disorder dictates that treatment not be delayed by much.
 
Ugh! I hate that place between the devil and deep blue sea. :(

In my thoughts muppet. :heart:

Dusty. xxx
 
Well it sounds like you're finally getting somewhere, if not quite where you wanted :thumleft:. Hope it goes ok with the NG tube, don't blame her for not wanting to drink the stuff - I tried Andrew's once - yuck!
When Andrew had his tube put in, they admitted him overnight and they had to sign off in a booklet that they had taught me everything and that they had watched me give him a couple feeds. It wasn't nice for a couple days but after that we both got used to it.
 
One of Dr. B's nurses called back (it seems like every nurse we deal with is named "Lori", LOL) and said they want to get Sarah in next Tuesday for an in-service on the tube at which time hopefully the insurance stuff will be figured out. They want us to have a DME company and maybe a visiting nurse lined up (which I think is overkill on the nurse thing, but whatever.)

I told her Tuesdays are out all month because of my wife's schedule so she'll try to make it another day. I told her that Dr. B had originally talked about doing this inpatient but she felt it wasn't necessary. Then I told her that if Sarah is going to be admitted for scopes then maybe we could do scopes, tube, and MRI in the same admission and she said she'd work on that and get back to me.

They're not letting any grass grow under their feet, that's for sure.
 
Well,

We tried picking up some prescriptions at CVS this morning and our FSA card was declined for the second time this year. The first time I figured it was the usual lag in getting the card activated with our new FSA balance, but now I know it's broken.

Apparently, when I enrolled for my employer sponsored benefits this year, I chose to put funds both into my usual FSA plan, and then, because the cap on FSA accounts is lower than ever before this year (thanks, ACA?), I also put funds into an HSA account to make up the difference.

Apparently, though, if you have both an HSA and FSA, federal law limits the use of your FSA account to eligible vision and dental care and NO medical or pharmacy coverage as we have always used it for.

I'm SO glad our benefits in this country are so simple and easy to access!!

So now I've got $2500 that I can't use to pick up my family's medication at the pharmacy. I have to somehow spend that entire total on dental and vision care (as if!!) or else I'll lose it all at the end of the year.

THEN, I've got an HSA account with $1000 in it, and a weekly deduction to eventually deposit another $1000 over the course of the year that I have no idea how to access or use and even if I did, it's not enough to cover our high medical deductible, let alone our annual prescriptions.

I fired off an email to our benefits manager, but I have no idea what, if anything, can be done. I enrolled online without fully understanding the restrictions (and the online system never popped up a warning about combining FSA with HSA, which would have been great...)
 
:ymad::ymad::ymad::ymad::ymad::ymad::ymad::ymad:

IT'S ALWAYS SOME DAMN THING. THERE'S ALWAYS SOMETHING.
 
It doesn't help that I was also confused by the options last year and made what I thought was a bad choice. I contacted the benefits folks about this same time last year asking if I could shift anything and in the end decided I was OK and there was no need to change anything.

BUT

now that I've actually GOT a need to potentially alter my elections (if that's even possible) they will no doubt remember that I'm the schmuck who screwed up his own benefit elections LAST year, too, which won't help.
 
Sorry, muppet. Like these kiddos healthcare doesn't include important enough decisions without worrying about whether or not our insurance will help us pay for them. :(

I'd send you a hug but that pic of the mask is haunting me. I'm scared.:shifty-t:

:panda-wave-t:maybe a waving panda will make my reply feel warm and fuzzy. :)
 
I remember that pic Angie. He was working in what looked like an attic waring a yellow jacket like my little boy has.:smile:

But I thought he was trying his best to impersonate Princess Leia!:rof:
 
muppet said:
Well,


Apparently, though, if you have both an HSA and FSA, federal law limits the use of your FSA account to eligible vision and dental care and NO medical or pharmacy coverage as we have always used it for.

I'm SO glad our benefits in this country are so simple and easy to access!!

So now I've got $2500 that I can't use to pick up my family's medication at the pharmacy. I have to somehow spend that entire total on dental and vision care (as if!!) or else I'll lose it all at the end of the year.

THEN, I've got an HSA account with $1000 in it, and a weekly deduction to eventually deposit another $1000 over the course of the year that I have no idea how to access or use and even if I did, it's not enough to cover our high medical deductible, let alone our annual prescriptions.
Click to expand...

I know what an HSA is, but what's an FSA? Is it supplemental to your employee health insurance?

The devil's always in the details!! Hope you get it sorted soon!
 
FSA is supplemental to insurance and we use it to cover our high deductible plan.

Of course, coverage is getting worse and worse for higher and higher premiums because the ACA was gutted because Obama is a poser and Congressional Dems are all spineless... but that would be politicizing, right?

With a public option, we'd not be in this mess, but we must protect corporate profits at all costs in the US, to a comical degree. They don't even hide it any more, because half the country believes it's actually in their best interest to govern this way.

The upshot here is that we have a $3000 liability and we're $2500 in the hole so there will be a $5500 gap in our budget this year that I'm not sure I can cover, unless I can talk the benefits people into making 11th hour changes for us.
 
muppet said:
Of course, coverage is getting worse and worse for higher and higher premiums because the ACA was gutted because Obama is a poser and Congressional Dems are all spineless... but that would be politicizing, right?
QUOTE]



:thumright::rosette2::thumleft:
Click to expand...
 
To be fair, Republicans are a lost cause and so even implying their blame in all of this mess is taken as read. :p
 
muppet said:
With a public option, we'd not be in this mess,.
Click to expand...

I don't know about that. Our friends here with public insurance seem to have a tough time getting appointments, tests, approval for treatments, few docs available etc. Many have to buy supplemental private insurance to cover everything.

Seems all the systems are flawed in some way. Just sucks that some one can't figure this stuff out!
 
The public option in the US wouldn't have abolished private insurance, it would have competed with it on price. Given the efficiency of Medicare (whatever you've heard, Medicare and Medicaid are incredibly cost efficient and hospitals throughout the US rely on Medicare and Medicaid patient loads to stay solvent, it's an incredibly successful program), that would only be a good thing for the country.

Instead we get rising premiums and corporate protectionist bullcrap just like always.

I've been working in insurance and healthcare for 14 years. Go ahead, debate me. ;)
 
What I do know is that our friends here with public insurance don't have kids in their country who post on reddit and other social media platforms asking peers how to fix their own fractured fingers, deep lacerations, Crohn's symptoms, etc, at home using popsicle sticks, duct tape, and Pepto Bismol. You should cruise reddit some time and do some searches on "can't afford a doctor" and similar phrases if you really want to be scared out of your wits by what kids only a little older than yours and mine are going through in this country right now with no insurance.
 
Oh that option..O.K. see your point there.

Oh and I am not debating. The system is flawed! Hell add to the list of flawed systems the educational system too! And a bunch of others but I don't want to get too depressing.

That makes me so sad about that reddit stuff. WTH? Do their parents not have them on some state plan?
 
There are huge holes in who can be covered by those plans. People think there's a program for everyone and the ER takes up all the slack but its not true.
 
I just emailed Dr. B a few minutes ago explaining that I'd heard from radiology but not scheduled anything yet in case he still was considering admitting Sarah for the scopes or tube placement. I got a somewhat terse response saying that it's very difficult to admit a patient for scopes or for "elective" feeding tube, as those are outpatient procedures.

The only reason I was talking about inpatient is that he broached it last week, now his response has me feeling like a loony parent. :(

I replied back that I'm certainly not eager to admit Sarah to the hospital frivolously or unnecessarily and if he strongly feels EN is a poorly justified option for her then I'm certainly willing to try the vancomycin and clean out we discussed.

I'm just not sure why he seems annoyed at my mention of an inpatient stay when he brought it up last week. It never would have occurred to me otherwise. I thought it was overkill.
 
Now I'm gonna sit and fume about this until I talk to him tomorrow morning. The admission for the scopes and possibly the tube was his idea. In the case of the scopes he's worried about her blood platelets due to ITP, and in the case of the tube he wanted her to potentially be observed overnight with it. But now he copies his staff on a response that seems to be lecturing me on the inadvisability of admitting her for these procedures..?

Maybe he's just really busy and I'm reading in a tone that's not there, but it sure seems like a terse and lecturing reply over something that HE forwarded in the first place.
 
Tell him off. It will make you feel better :D

Okay so you probably can't do that, but hopefully your response was enough to make your point.

You were very clear when you mentioned it in your post after your discussion with the Dr. that you were a bit puzzled why he wanted her admitted. So that was definitely not your imagination. Sometimes the best Dr.'s can be a bit of an ass sometimes.
 
How frustrating!! Make sure when you speak to him tomorrow that you remind him it was his idea (whether you go ahead with it or not). Maybe he was just having a bad day. Hope things get sorted soon.
 
Paged Dr. B this morning and he called back within a few minutes.

He launched into a spiel right away about how difficult it is to set up EN and how it's not going to work for an acute episode, so I don't know if he was just reinforcing things, or didn't read my email reply last night in which I agreed with all of that.

I think he's a very knowledgeable and usually affable doctor, but he's straining my patience a little this week. I'm not sure if he's different, or I am. I get the impression that my litany of questions and my interest in trying potentially sub-optimal (for UC) treatments may have irked him a bit.

ANYWAY, we're going to do... ((((DRUM ROLL)))) another freaking prednisone course. He says we'll try a high dose, short duration course (I've heard this song before) and maybe this time we'll introduce the Vancomycin midway and try to speed the taper with it.

I'm OK with this because Sarah has gotten worse (more bowel movements more frequently with more bleeding) in the last couple of days and I know that steroids are what she needs at this point anyway, based on her history. Hopefully she'll even respond to them.

Feeling a little defeated, condescended, and stressed out here. :(
 
He also said that scopes and MRI aren't pre-requisites to treatment, and we should hold off.

I agree that I don't want her to get worse, but I hate to think that we're going to quiet everything down before doing a test that will no doubt then show that everything is quiet.
 
Sometimes I wonder if they forget entire conversations they have had with us...UGH! Good luck with Pred...hoping it works quickly and she is able to taper. We did our MRE when she WAS symptomatic....I'd rather know how the disease is at it worst, although I like to know how things are looking inside when symptoms are quiet as well.
 
The fun continues. Here's my last email to Dr. B:

Hi Dr. B,

I'm sorry for so many emails.

The pharmacy called us a short while ago and told us that they can order the vancomycin, which they do not keep in stock, but that the out-of-pocket cost to us would be over $3,000. Unless this is some sort of typo in their system, this will obviously be prohibitive for us and I don't think we can pursue it, especially if it does not contribute to meeting our deductible, as prescription copays normally do not.

So, as of now it looks like I won't be filling the vanco. Just letting you know.
Click to expand...
 
Found out today that the med will have a $30 copay once we reach our deductible, which we would do in a single day if we picked up this med. That's freaking CRAZY, but that's healthcare in the US I suppose. Wooo.

I was looking at my claim history and of three prescriptions I've picked up so far this year, the copays of two of them have applied to my personal and family deductibles as well as my annual coinsurance (out of pocket) limit. The third copay applied only to the out of pocket limit, but not the deductibles.

YOU figure out this health plan, I f****ing give up.
 
We may live half a world away and speak the same language but for what you have written it may as well be Martian! :yfaint:
 
Honestly, for all of these complications (never before did HMO/PPO plans combine coinsurance, deductibles, and copays into a single plan), the ratio of what you pay to what you get in terms of benefits has remained fairly static over the years (not counting premium hikes) That is to say, reconfiguring benefits to have ever more variables involved doesn't seem to be motivated by a desire for the insurance company to pay out less to an insured, at least not a heavy user of insurance like me. It honestly seems motivated by a desire to make the benefits as inaccessible and confusing to use as possible and scare away the casual users of insurance.

Now, I can't prove that's what they're doing, but seriously, I used to work in insurance for years, and now I'm in healthcare, and the way they're structuring plans now, at least at my employer (through a major US carrier) is frigging insane.

The 3 main mechanisms in insurance of sharing the "pain" with the insured and making him make smart choices about his utilization are copay, coinsurance, and deductible.

A copay is generally a fixed fee that the insured pays for any particular service. There's a copay for doctor visits, one for prescriptions (in the last 10 years, this has become a tiered fee depending on the cost of the drug), one for hospitalizations, etc.

Coinsurance means that you pay some percentage of each service. Traditionally, coinsurance is used for "out of network" coverage with doctors or facilities not contracted with your particular insurer and traditionally the split is 80%/20% so that the insured feels the burden of the expense and doesn't over-utilize non-contracted doctors.

Deductible means that you have some flat amount, sometimes very large, that you have to pay yourself before the insurance will pay anything. In the past, this has meant 100% coverage after deductible for contracted (in-network) providers.

What we have now, from Aetna, combines all three in one plan. We have a $3000 family deductible to meet before we receive any benefits, except for certain medications, which still have a copay, which evidently does not contribute to meeting our deductible when we pay it. We have a 10% coinsurance even on IN-NETWORK, CONTRACTED providers after meeting our deductible (this is capped at $5000, but still), and a 40% coinsurance on uncontracted doctors (double what it would have been in the 1990s, in other words). AND we have copays for all of our prescriptions that vary between $15 and $45 depending on how costly a drug is, and even then I've found there are some exceptions where the copay can go higher (and I have no idea how to explain that.)

For the average person trying to use their benefits, they just have to take the insurer's word that the plan is being administered properly. It's utterly ludicrous to combine all 3 cost control mechanisms into a single plan, doesn't actually save the insurance company much (if any) money, but probably looks good on some actuarial table somewhere and gives a couple of insurance executives an erection to think that they're using all possible methods to keep people from receiving "excessive" benefits.

It's complete insanity.
 
I think they purposely make it complicated so you will give up. Especially if you are very ill, who has time to make sure everything is being paid correctly!?!
 
kimmidwife -

"Obamacare", also known as the affordable care act, mandates that insurers have to use 85 cents out of every premium dollar for payments to medical providers. That means only 15% of your premium can go to salaries, bonuses, operating expenses, etc. That's a GOOD thing.

It has also helped people like us with pre-existing conditions, who can't be turned down for insurance because we are already sick, as many of us have been in the past.

It has also given insurance "back" to millions of college aged kids who can now stay on their parents' medical plans until age 26. Many private plans already allowed this for students, but now even working youths or those without such generous plans are covered when they weren't before. This includes many Crohnies who post on reddit and had to go for years without coverage and got very sick, who are now seeing doctors thanks to this legislation.

There's a lot of misinformation out there about Obamacare, which is a shame because it stirs up opposition which allows the Republican party and their lobbyists to sabotage it as much as possible. Romney even vowed not to enforce its provisions, which would have been DISASTROUS for many people, including many on this forum.

I can't wait to see the effect of the state exchanges when they finally open next year, if the GOP doesn't manage to poison them with malicious legislation or dirty procedural tricks beforehand, or the Dems don't bow to lobbyist pressure and insert more corporate-friendly bills into the pipeline that will sideline the whole reform effort. Obama has certainly been little help, the way he seems to negotiate with an absent second party on his own programs.

If only the private option hadn't been cut out (because Obama is a big fat Right of Center poser and Congressional Dems are spineless and bought), we'd be in for some seriously overdue and sorely needed reform. As it is without the public option, we're settling for half measures and a lot of people will suffer for it, but it's VASTLY better than the situation prior to the ACA being passed.

What exactly is your objection to the ACA?
 
Not to mention that it's objective fact, easily provable with statistics, that the US pays several times more annually for several times LESS EFFECTIVE healthcare, overall, than other countries that have universal healthcare as a human right.

While it's true that the wealthy or well insured in this country can receive care superior to care in many of those countries, what good is that when it's only available to a single digit percentage of the population?
 
Sorry things are so crazy muppet. I can totally sympathize with you about the terse Dr. Last year when Ryan was flaring, the more questions I asked and suggestions I made, the ruder and angrier the GI got. The day we went to admit Ryan, he was yelling and turning blood red. It was all "my" fault that things weren't under control and he wanted to do this and that but I said no. Funny how they forget! I finally concluded that it was a matter of "semantics". The way I saw it was "I am going to ask a ton of questions and I expect direct responses from you, the expert, about the best action to take". He saw my questions as resistance to his plan and backed off treatment when I what I wanted him to do was answer my questions clearly and move forward if it was the best way to go. Apparently, there are lots of parents out there that don't ask questions and they get used to that. Then they don't know how to handle inquisitive parents that do research.

My son is on methotrexate. I don't know if that works for UC, but you don't have to worry about compliance because it's a shot that you give 1/week. I would want scopes for sure. I am sure you know the risk of removing colon if it is crohn's. I'd want to be sure there's no inflammation in the small intestine. And Ryan's GI always wants to see a scope when there's a flare. You'd think your Dr would want to see how bad it is when it's bad. What's the point in seeing a clear gut?

I hope you get some answers soon!
 
I'm just catching up with this thread and have a couple of comments/?s.

Izzi's mom wrote "Sometimes I wonder if they forget entire conversations they have had with us" Yes they do forget! Sometimes doctors forget their prior recommendations or entire conversations or part or all of a patient's history etc. They are busy and sometimes sleep deprived and often multitasking. Knowing this, it is good to start the conversation with a brief review "In the office, you mentioned .... because of ....... now.....".

Muppet: You are right- it is difficult to judge tone in email. I would use email only for conveying information and try not to assume anything about tone or feelings.

In Sarah's case, could the doctor have momentarily forgotten her ITP, when he seemed surprised about the inpatient scopes?

This all sounds really frustrating. I understand you're wanting to have scopes that show something. Did you communicate this to the doctor? In any case, why would the MRE would need to be delayed?

I hope everything will be sorted out and Sarah will be feeling better soon.
 
We'll probably have at least the MRE this month. I need to call today and schedule with the GI nurse and the nutritionist about potential EN in the future. When we go in for that, I'll try to get the MRE on the same day.

I understand the docs being overworked and underslept, but that's something they ought to address, no?

I do try to prompt him usually but this was like, 2 days after our appointment and I guess I assumed he'd have a little more memory of Sarah if only because she's a tough case. I'm sure he has a few dozen tough cases, but c'mon.
 
Wow, just trying to get caught up on all... Muppet, so sorry you've had so many (BIG) bumps in the road lately! :ymad:

The insurance sounds like a nightmare!! I haven't had to deal much with the insurance - our insurance said no to the EN but then the hospital arranged for a regional agency to cover the cost. But, am dreading what is to come with remicade?!?!? It always seems to be complicated! Good luck!

And sympathize with you re the conversations with the GI. I'm so envious of those who have an open, easy relationship with the GIs. I have that with my own GP and it makes such a huge difference when you feel comfortable questioning and voicing your opinions and worries. As we've only met with Stephen's new GI twice, I guess time will tell... :)

I hope you can arrange for the scopes SOON and commence treatment soon as well!!! :ghug:
 
I really wasn't trying to make excuses for my former colleagues. I just wanted others to know that it is common for doctors to forget some patient history or prior conversations some times most often during phone calls or emails but also at appointments. It can certainly be disconcerting when this happens.
 
Oh I'm not that upset about him forgetting details, although it does irk that it was so shortly after the discussion. I do think that some doctors have unrealistic case loads and I don't think it's always unavoidable, either.
 
I'm SO sorry muppet you have to deal with all this.:stinks:

After I took Grace for a consult to have a brace made, the secretary stated your plan renewed and you have to meet the deductible.:voodoo: Then she whispers a ball park (possible, could go higher:blush:) figure for the brace. Lets just say there was 3 zeros behind the number!:ywow:
I came home and thought:shifty: all he's going to do is make a glorified air-cast brace. For crying out loud I can do that too.:voodoo::voodoo:
 
See, when medical staff and providers have to apologize for costs and whisper estimates, the system is frigging broken. Nobody's health, nobody's bodily integrity, should depend on how much currency they have in their bank account. Society is broken when that's the case. Plain and simple. Society exists to facilitate cooperation, not as a competition. If it were the latter, why not just live like animals and drop the pretense?
 
Muppett,
I don't want to bring up politics on the forum and I do agree with some,of the things the ACA has done. What I don't like is how it is raiding the Medicare coffers. That it is forcing a lot of doctors to see so many patients in order to stay open that they don't want to stay open and plan to close. That it has forced employers to close or pay a huge fine. I don't like the idea of rationed health care where when our child needs an MRE they might have to wait a year to get one, and other things that I don't want to get into. enough said I am dropping this subject as I said I love this forum and don't want to discuss politics on it.
 
I can sympathize with wanting to avoid political discussions. However, I think the ACA is an unavoidable topic on boards like this one, because it is LITERALLY a life and death issue for many members of this community. I don't think it's reasonable or acceptable at this point for anyone who suffers or whose loved ones suffer from a chronic illness to be against universal healthcare at this point. Health and well being is a human right. Universal healthcare is a proven program and a solved problem in every first world country except the US. Somehow, doctors have not gone broke. Small business continues to flourish. Retirees are not dying for lack of care, either. All of your arguments, nothing personal, are motivated by either firsthand or secondhand conservative propaganda with little or no data to back it up. In fact, every one of your arguments can be easily defeated with counterexamples in other countries that are already doing this. I'm not pointing fingers. There's so much malicious propaganda out there because of corporate and other wealthy interests, including on the "news", that we're all soaking in it on a daily basis. It's hard to know what's true unless you're extremely motivated.

While we in the US sit and have this debate that has already been resolved in every first world country but ours, people suffer unbearable pain and die because they must rely on their employers to decide their fate, if they can even find an employer with 8% (and that's the heavily massaged figure) unemployment. That's crap. I'm beyond being polite about this particular issue.

http://www.reuters.com/article/2012/06/20/us-usa-healthcare-deaths-idUSBRE85J15720120620

But, I will stress, it's nothing personal. There is an awful lot of bullcrap out there about ACA and about "socialist" healthcare in general that needs to just go away. It's time.
 
Last edited:
As to whether the ACA raids Medicare, it does not:

http://www.nashuatelegraph.com/news...itifact-is-obama-really-raiding-medicare.html

What it does is make certain payments to hospitals contingent upon performance. If a hospital is negligent and discharges a patient too early; If a patient suffers from a hospital borne infection, etc, it impacts the hospital's reimbursement. This is an incentive to take better care of vulnerable patients, not a "raid."
 
Blech...I hate politcal debate. I don't know about all the rhetoric on either side but I do have experience with state sponsored/gov't sponsored healthcare and my biggest hope is that C can get through HS, college and into a job that provides private insurance.
 
As a long beneficiary of private insurance, who has seen his benefits shrink and premiums rise year after year; who has had to scramble to provide not only for his own care, but his tiny daughter's, after one or another layoff and subsequent loss of coverage (due to not being able to afford literally THOUSANDS in COBRA premiums immediately after losing his job); who has had to shuffle doctors with whom he or his daughter has had a great rapport and wonderful success due to network changes from changing jobs... I have to say that I can't WAIT for the day that we all have government sponsored healthcare, that is as successful and efficient as Medicare and Medicaid have already been proven to be for decades, so that my employer no longer determines my benefits or my doctors. I can't wait for the day that I no longer have to worry about changing or losing jobs because my daughter's life LITERALLY depends upon the insurance my employer deigns to allow me to have.

In my opinion, our system is feudal and immoral. I will not cry to see it go.

Ask people in the Netherlands if they'd rather switch the US system.

The annual per capita cost of healthcare in the US is more than $8,300. In Canada, France, and the UK, it's half that. And, overall, their outcomes are better than outcomes in the US. There's no sane argument against single payer healthcare any longer. The insurance companies and associated industries are making BILLIONS off of human suffering in the US and many of those billions are funneled into buying the news so that you'll continue to believe we're not being taken advantage of.
 
There is no doubt pros and cons for both systems and the fear we have for each others is born out of the unknown. To compare the hospital system in the US to that of other first world countries is comparing apples to oranges simply because the system outside the US revolves around the public system and the private system is there for those that wish to take that option up. The big money medicine, with very few exceptions, is the domain of the public hospitals simply because it isn't financially viable outside of that realm without crippling costs to either the consumer, the health fund or both. Of course if it falls to the health fund then it invariably falls to the consumer by the way of increased premiums.

Nothing is for free so it is paid for through our taxes. It is embedded in our psyche that to present to a public hospital, which as i said is the essentially the system here, as a public patient and there is no cost to you from the time you enter until the time you leave.

The levy we pay also covers the subsidised pharmaceutical scheme and subsidises doctors services outside of the hospital system.

My concern with the system as it exists in the US is the apparent drive up of costs. Have you all found that?
Just from some of the conversations I have read on this forum the basic cost of services is significantly inflated. I was shocked at some of the mark ups. I guess re reading your last post muppet that observation is supported that by the per capita cost you have stated.

I have enough worry, fear and anxiety in my life, I couldn't imagine what it must be like to have a shadow forever hanging over your head that at some point there is the potential for treatment to become unaffordable. :(

Dusty. xxx
 
The only way that familiarity with the American healthcare system reduces fear is through habituation, not understanding. I've been immersed in it professionally for over a decade and it terrifies me to the point of insomnia.
 
muppet said:
See, when medical staff and providers have to apologize for costs and whisper estimates, the system is frigging broken. Nobody's health, nobody's bodily integrity, should depend on how much currency they have in their bank account. Society is broken when that's the case. Plain and simple. Society exists to facilitate cooperation, not as a competition. If it were the latter, why not just live like animals and drop the pretense?
Click to expand...

izzis doc is afraid he s hoping to lose a couple of great nurses because they feel the . majority of their day it's spent battling insurance companies instead of providing nursing care.
it s a sad state of affairs for sure.
and while I am not sure Obama's plan is . perfect...it's a start. we need as change and we have to start somewhere.
 
I'm in the ER. I got norovirus from Izzy and its tearing me up. Passing pure bile for hours which is burning my gut. Bleeding. Diaphoretia. Pretty intense gastritis.
 
Every single person who has seen me so far has focused on the flu symptoms while I stress that I'm here for fear of crohns complication. I know the flu is moot.
 
Muppet that pain and nausea is the worst. I am so sorry you are going through that. I hope they get you hydrated and comfortable and it is nothing more than a stomach bug.
Hang in there.
(((((Hugs))))))
 
I'm home. They gave me two bags of saline and offered a third but I wanted to get home to my girls. They gave me solumedrol which made the gastritis better but has worn off. Solumedrol usually kicks me into steroid dependency but we'll see.

They sent me Hoke with pred and zofran. Feeling better but still pretty awful. They triaged me as a flu case clogging up their ER and when I refused morphine I got knowing looks.

Sigh.
 
No, it doesn't, but she routinely forgets, so I have no idea where she's even at.

To be fair, I routinely forget, too. Almost once a week.
 
MLP - You would not believe the methods we have tried already. We're both chronically absent minded.

Angie - addicts frequently turn down narcs to stay sober/clean so I think there's an assumption that if you're OK dealing with pain rather than side effects, it's a good chance that's why.
 
we don't see many recovering addicts here...just seekers. I certainly wouldn't judge someone refusing, unless they were refusing all aspects of treatment/testing, in which case I would wonder why they presented to the er in the first place.
 
Ugh! I am so sorry to hear of what you have been and are going through muppet. :(

I hope you are able to get on top quickly and without too many consequences. :hug: Good luck!

I also hope that Sarah is feeling better, bless her. :heart:

Dosettes (pill boxes) here too! They are a godsend!

Dusty. xxx
 
On February 23, 2012 the WHO recommended that the Northern Hemisphere's 2012-2013 seasonal influenza vaccine be made from the following three vaccine viruses:
an A/California/7/2009 (H1N1)pdm09-like virus;
an A/Victoria/361/2011 (H3N2)-like virus;
a B/Wisconsin/1/2010-like virus (from the B/Yamagata lineage of viruses).
Click to expand...

From:
http://www.cdc.gov/flu/about/season/vaccine-selection.htm

So it covers strain b
 

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