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I am a worrier by nature, but recent news reports suggest to me that neither the USA, nor any country, has a strong handle on how to contain or treat this disease. Infections of two nurses in Dallas, Texas have exposed poor or lacking or nonexistent protocols, and also some uncertainty over how this disease is actually spread.

I got to thinking about how it would impact me, and the rest of us J Pouchers. The main concerns is rapid dehydration. From past experience with food poisoning that caused explosive vomiting and diarrhea simultaneously, I learned that I dehydrate at an alarming rate. I think getting a quick IV would be essential in staying strong enough to survive this disease, which has a current 70% mortality rate. Because I live alone and would have to call an ambulance, this is a concern, although I live not far away from a hospital.

IV units are not sold commercially at Walmart's, and they are usually only administered by medical professionals. However, some people who need IVs regularly have an IV port surgically implanted.

Have any of you J Pouchers, especially those who dehydrate rapidly, thought about this issue? Other than getting to an ER as SOON AS POSSIBLE from onset of Ebola-like symptoms, I can't think of a single thing to do to thwart rapid dehydration from these symptoms.

Any of you who are medical professionals like Jan and Rachel have any thoughts? Better to think about this now and be safe rather than sorry, like that poor nurse who flew to Ohio to prep for a wedding and is now in a hospital in Atlanta, fighting for her life (and she is, presumably, a coloned individual).
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Ebola is not transmitted by airborne vectors. It is by close contact with blood and body fluids. It would be much more widespread if it was airborne. There is a thought that the nurses were exposed while donning or removing double gloves, which can be difficult to do without the gloves flipping around.

Having IVs at home would be of little use, unless you would have someone to start a line and administer them. Plus, you'd need other support, such as oxygen. Your best bet is to get to the ER if you exhibit symptoms. You don't have to have ebola to have things go south in a hurry. Lots of viruses can do plenty of damage.

http://www.cdc.gov/vhf/ebola/symptoms/index.html

Jan Smiler
Please.

The Dallas hospital done screwed up. Reports today say they didn't use protective suits when treating the paitent for several days.

Ebola is very difficult to catch; caregivers are vulnerable precisely because to treat the paitent they have to come into contact with blood, vomit & feces.

Stop believing sensationalist "news" stories and actually research how this virus spreads. The spread in Africa is due to poor medical infrastructure, lack of quality medical care leaving people to be treated at home & traditional burial and funeral rites that bring uninfected people into contact with deceased patients who still are able to secrete fluids from their bodies.

If Ebola were to go to pandemic or epidemic status here, your pouch would be the least of your worries because you'd be bleeding from your ears.
As I stated it is not the Pouch itself that is the worry. It is the fact that having the J Pouch makes me, and many of us, very prone to dehydration. In my case, from past experience, the dehydration from the explosive vomiting and diarrhea from food poisoning was rapid, and strength-sapping. One needs strength to combat a life threatening virus. I lost my strength for a week after that episode. I had nothing in the tank.

Also, it is not yet known how these Dallas nurses were expose. This was not poor medical infrastructure. This was two medical workers at a US hospital, both infected, reasons why unknown at this time.
Actually you're wrong.

This was a gross failure on the part of the hospital & its systems & infrastructure. They were ill prepared to receive & treat Ebola patients and have a history of poor labor relations with nursing staff in particular. They didn't follow protocol, plain & simple.

But again, worrying about Ebola in this country is ridiculous at this point unless you work in the medical field or around communities that might be hold people recently traveled from the affected areas of Africa.

The overwrought news coverage is based, at best, on the "If it bleeds, it leads," school of journalism. At worst, it's a cynical ploy to drum up fear in the minds of an under informed citizenry.

http://talkingpointsmemo.com/e...-to-use-hazmat-suits

http://talkingpointsmemo.com/n...itions-in-ebola-case
Yes, it is true that if your are prone to rapid dehydration, you do not want to wait too long for treatment. But, it should not matter if it is ebola or the flu. The main issue about ebola is not how severe it is, but that there is no direct treatment or vaccine yet. It is not just about dehydration. I went into septic shock within 2 days of coming down with viral symptoms. They never identified it, other than to rule out flu. I just had to get support while it ran its course. Fortunately for me, it was not ebola.

Jan Smiler
quote:
They didn't follow protocol, plain & simple.


The nurse's union is saying that for Ebola "there was no protocol, plain and simple." My comment was on the general medical infrastructure in the USA, as your previous comment implied that the spread of Ebola was due to the general poor infrastructure in Africa. But, it may be that neither Africa, the USA or any other area of the world has the correct infrastructure in place for Ebola:

http://us.cnn.com/2014/10/16/w...index.html?hpt=hp_t1
Nobody is prepared for an epidemic or pandemic..even the guys whose job it is...they are doing their best but unfortunately their best is not or ever going to be good enough because human error is, well, human.
I take a very, very overcrowded subway to work everyday (3 actually) and most of us are neck to neck and nose to nose...I see kiddies wiping their noses on rails, sneezing onto other kids or people, sharing saliva unintentionnally etc...And I know that if it ever gets here (and is certainly will!) that we will get hit very hard.
How do you stop someone who is determined to escape an epidemic torn city or town from getting into Europe? (and can you honestly blame them for wanting to escape????) You can't...we have no borders...if they don't want to fly into Paris by plane they can fly into another city and drive here...no border checks...so sooner or later some poor person who is trying to escape the horrors is going to unwittingly contaminate a major European city and spread this epidemic all over the place.
Public transportation, grocery stores (ever see the guy taste and put back fresh produce like grapes?? Kids taking a bite and placing it back in the pile????)
Well all of those spots plus nursery schools, day care and tons of other contact spots are all croc pots for viral transmission...
So, what does a poucher do? Avoid getting contaminated in the first place...Because if you don't no other med, IV or other product will help us...
PS. during the avian flu outbreak we bought some antivirals and prayed for the best. Nothing else to do.
Sharon
Too often jpouchers think they are special and have needs that exceed the needs of a coloned person. We aren't really that unique. Yes, we may dehydrate quicker but we know that and take steps to mitigate those problems. If you can communicate your lack of colon to a health care professional, then they will more closely monitor your fluids whether it be with ebola or the flu.

Sue Big Grin
YOU CAN NOT CONTRACT EBOLA FROM SOMEONE SNEEZING ON YOU.

And, CT, there actually is a protocol, put together by the CDC, and is the one used at Emory to contain the paitent treated there.

Dallas Pres. screwd this up, leaving a symptomatic paitent in a crowded ER, than not providing nursing staff with the appropriate protective gear. I imagine they're going get sued into the Stone Age by someone.

Read about this disease. It is terrible, but it is not all that easy to transmit.
CT, you're an attorney so I assume you're reading comprehension is fine.

From the article you posted:

"Unfortunately, in our initial treatment of Mr. Duncan, despite our best intentions and a highly skilled medical team, we made mistakes," Varga testified to Congress. "We did not correctly diagnose his symptoms as those of Ebola. We are deeply sorry."

And

"Something that we've learned through Doctors Without Borders is how to treat patients, to care for them and isolate them so that they don't infect others. But also to reduce, more or less, mortality," he said. "We need to protect health care workers. We've seen it in the U.S. We've seen it in Europe. But above all, in Africa, where over 200 nurses and doctors and lab workers have died from Ebola. And that can be done by protective care."

Simply, we know how to limit the spread of Ebola. Dallas failed to do it the right way.
Those of us who have spent time in hospitals as both nurses and j-pouch patients know that it is a great system with great problems. Yes, we have the best system, but even it is fraught with problems. And let's face, if the staff can not stay healthy and uninfected, then who will care for those in the general public who may develop this disease? I believe this is why there are such alarms going off. There are big differences in hospitals like Emory and Dallas. Just look at a local small hospital and Cleveland Clinic in regards to the care we get for our pouches.
If anyone is worried about contracting ebola or any disease there are disposable single use medical gloves for sale and face masks at Walgreens and any health supply store. Plus you can also buy your own hazmat suit. I hear there has been a run on them so you might have to back order one. There was TV coverage of some wearing them on airline flights. You may look silly but whatever you need to do to make yourself feel safe I say go for it.
The whole point of this thread is that early, proper treatment and aggressive rehydration may be crucial to surviving Ebola, and an article I was reading this morning corroborates this:

http://us.cnn.com/2014/10/20/h...index.html?hpt=hp_t1

"The most important care of patients with Ebola is to manage their fluids and electrolytes, to make sure that they don't get dehydrated," said Dr. Tom Frieden, director of the Centers for Disease Control and Prevention. "And that requires some meticulous attention to detail and aggressive rehydration in many cases."

This comes from the Director of the CDC, not Bozo The Clown.
It is no harder to hydrate a j-poucher with an IV than a person with a colon, and *everyone* who contracts ebola virus needs IV hydration. In other words, if any of us were to get ebola (the odds of which are vanishingly small), the treatment would be exactly the same as any other patient. Ebola would never be managed with oral rehydration in the United States, and that is the only hydration method where we would need different treatment.
quote:
We are not that special.


We are not special, but we ARE different - we dehydrate faster (at least I do). And the point is the longer we are dehydrated, and the longer it takes to rehydrate, the lower your chances for survival. If I explosively vomit and diarrhea I am going to dehydrate 2X as fast as the coloned person and maybe take longer to rehydrate. As per the CDC the lowering of the rehydration treatment time lapse is what increases chances of survival. This is exactly why the words "aggressive rehydration" were used by Dr. Frieden. I don't think that means IV vs. oral, because when you are explosively vomiting you can't orally rehydrate.
Keeping a plastified card in your wallet stating your medical conditon(s) and needs is always helpful in case of loss of conciousness or the inability to advocate for yourself...medic alert bracelets and necklaces are all good too...and having a partner who knows of your conditon and can explain it is invaluable.
I know that my hubby and best friend have all of the necessary info on me and I carry a data key with my medical file on it too...
You don't need ebola to get dehydrated, a good case of food poisionning or the flu are highly effective too.
For the rest? Prayer is good too.
Sharon
ps...Canada is starting to test a new vaccine on humans...here's hoping for a positive result.
quote:
Keeping a plastified card in your wallet stating your medical conditon(s) and needs is always helpful in case of loss of conciousness or the inability to advocate for yourself.


I am starting to think that this is a really good idea. If I ever had a medical emergency of this type- e.g. losing consciousness due to dehydration - and I was fortunate enough that someone will call an ambulance for me, I would be transported to Yale New Haven Hospital, which is the closest hospital to where I live, like 5 minutes. I am actually a GI patient there - at Yale Digestive Diseases - and one would think that when they look at my driver's license and run my DOB it would pop up on their computer that I am a J Pouch patient. But who knows? It's definitely not something one should make an assumption on.

By the way, as I mentioned earlier, I already had severe food poisoning with my J Pouch once, had explosive vomiting and diarrhea (just like you get with Ebola), had a very rapid and severe dehydration, and that is why I started the thread in the first place. I am not exactly a virgin when it comes to being hospitalized for dehydration and electrolyte imbalance issues.
The point is that you're not going to get freakingEbola.

It is hard to transmit, and unless you're handling the crap, blood or vomit of an already infected paitent, sleeping with someone who has the virus and coming into contact with his or her semen or vaginal secretions, sharing needles with someone with the disease, or ritualy bathing the still oozing corpse of someone who has died from it, you'll be fine.
I think this panic is totally unnecessary. A few contained cases doesn't put to many people in danger. Symptoms are known so all you have to do is be alert. We are no more at risk than a fair share of people. Those with renal problems, diabetics and heart patients just to name a few. I'm sure there are plenty of other medical delimas to consider also. I don't believe we are any more prone to this than anyone else. To meet your concerns if you do start to vomit of have nausea you should seek care.
quote:
To meet your concerns if you do start to vomit of have nausea you should seek care.


What is kind of funny and ironic about this comment, unrelated to Ebola, is that Friday night, during a short weekend trip to Montreal to see the hockey game (vs. Colorado Saturday night), I started to feel nausea and hot flashes and fever after eating steak tartare at the hotel bar. It was pretty intense. I excused myself, went to the men's washroom and dry heaved a few times over the toilet. I then returned to the hotel bar. One of my friends told me to order a ginger ale and not think about the nausea, and to settle down. I only drank ginger ale the rest of the night. Eventually the sensation of nausea and feverishness subsided and passed without any vomiting.

I guess I had trouble digesting the steak tartare, because I was fine the rest of the weekend. It was actually pretty tasty going down, but I don't think I will try it again.
Last edited by CTBarrister
quote:
I had giardia and felt like UC was back in force.


I had camplylobacter and it was really bad. That is why I started this thread. I said earlier in the thread that I had food poisoning and it absolutely kicked my ass in every way.

And guess what preceded me getting UC in the first place back in 1972? Salmonella poisoning. I was in hospitals for months. Like I said I am no stranger to this stuff and it's exactly why I started the thread in the first place. I am also a survivor of mumps, measles, German measles and Chicken pox. This is likely why I got UC in the first place. All of these childhood afflictions screwed up my immune system to the point where it was irretrievably broken. Every GI doctor I have ever had said it is a valid theory. Jan would also know that we were born when there were no vaccinations for any of these things. Polio and smallpox was the only thing they had figured out back then. It's not just about Ebola. It's about all these things that can dehydrate you and kick your ass, and I have had my ass kicked by a few already and survived to tell about them. Also survived UC for 20 years and pouchitis for almost 20 years. My body fights them, and it fights me. And ironically I earn a living fighting for, and with, others.
Last edited by CTBarrister
I don't think my having chicken pox, measles and mumps had anything to do with me getting UC. I had ear infections, tonsillitis was anemic and had pneumonia too. I have countess peers that had all of the childhood illnesses I had too and they didn't get IBD. The illnesses led some children to other health problems and that is why the vaccinations were developed.

There are many here that have had all the vaccinations for these childhood diseases and they still ended up with IBD that required surgeries leading to j-pouches and they have the same issues regarding dehydration that I do.

None of my GI's have ever said that any of my childhood afflictions caused my UC. I don't mean to say that this is not a valid theory for anyone elses UC just that I don't consider it a valid theory for my UC. If it were the cause of UC, I'd expect that there would be a decline in the number of new cases reported as the population grew younger and received vaccinations.
TE, yes, it is correct that most afflictions have nothing to do with future UC diagnoses, but it has been established that gut infections, like C. diff or food poisoning does have an association. Those without the IBD predisposition recover and move on. But if you have IBD genes, these infections can start the autoimmune cascade leading to IBD.

Plus, knowing what I know about myself, I have avoided travel to areas known to have frequent occurrences of traveler's diarrhea (Central and South America). Even with emergency antibiotics, I'm just not willing to risk it (unless I run out of other placesto go). But that is just me and my comfort zone. My hubby is agreeable, since he has UC too. We still go camping, travel across country, Canada, Europe, etc.. I always bring Flagyl with me, just in case. The last thing I want is to wind up in an ER outside the country!
Jan Smiler
Very interesting! So it's not the childhood illnesses as much as c-diff & food poisoning types that are thought to contribute. I know I was on too many antibiotics for too many cases of tonsillitis and ear infections as my doctor didn't believe in the removal of tonsils. I'm pretty sure I didn't have c-diff until I had UC but who knows as I remember being very ill and going from "both ends". Who knows what antibiotics the doctors put me on. One summer I was antibiotics for months while visiting my Grandparents in southern Missouri. They didn't run tests for things like that 50 years ago. There is also no one in my family that has ever had IBD before so I've always thought, and hoped, that my UC's cause was environmental.

So you aren't ruling out Northern Europe Jan Smiler
You brought up agood point I failed to mention; the use, and overuse in particular, of antibiotics. This leads tothe altered gut microbiotica and potential gut infections that are unchecked. Of course, today there is much awareness of this, but not so much a fewdecades ago.

No, I don't cower in my home, afraid to venture out for fear of a gut infection. I travel a lot, even though I am on biologics and need to be mindful.

Jan Smiler

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