Can someone explain Leaky Gut? The Fisher Price version that is.

[Stone]

I had my gallbladder out on Sept 8th, went home on the 9th although I had been having considerably more pain than people usually have along with a low grade fever since the surgery. Was recovering at home okay but on the 12th I spiked a very high fever out of nowhere. Went to ER by ambulance. They ran some tests and an abdominal CT, including blood cultures, and they got my fever down below 100 and sent me home.

Then, hours later, the doctor from the hospital called me back; told me to return to hospital because blood cultures were positive for gram negative bacteria. These bacteria are usually found in the digestive tract and somehow I've gotten "blood poisoning" because they're in my system somehow. It's most likely the surgery but that's not for certain, although my incisions are all angry red and surrounded by peculiar red rash of tiny red blisters. Could be a reaction to the glue, too. It's all a mess. At the moment, I'm in the hospital and I have to remain here on strong IV antibiotics another "couple of days". At one point, one of the doctors mentioned that sometimes these bacteria can leak into the system from the intestines. Is this leaky gut? I'm just trying to piece together how this happened, although, it could very well be simply due to my totally shot immune system which I was really worried about prior to the surgery. I felt in my spirit that something like this was going to happen because I had had two outbreaks, one on top of the other, of pityriasis rosea which points to a broken immune system, as does the freaky business going on with my tongue and mouth which is also a mess.

Anyway, I would sure appreciate it if someone could possibly help me sort some of this out and maybe give me a quick lesson on "leaky gut" if this sounds like what this is.

Thanks friends,
Stone

 

[zoe.a.m.]

Hi Stone, glad you got to the hospital and the infection was caught before you became septic! That's really frightening. What little I understand about leaky gut I'm too tired to put into words, but if you can google GAPS diet, you might be able to find an outline. Because of your surgery, it's possible that the bacteria were transferred during the procedure, and not necessarily a chronic leaky gut problem. It would probably depend a lot on what your symptoms were, GI-wise, prior to surgery. I also doubt a surgeon or internist knows much about leaky gut beyond Celiac. You could also check out celiac for a description of how the villi are blunted (in that case just due to gluten), just keep in mind that leaky gut is usually sub-clinical, so most info will come from alternative medicine sources. I would also search for leaky gut here on the forums because there are definitely threads that go into some detail. Sorry I'm too beat to even do a quick rundown and I hope you get better and can get the pityriasis under control. Feel better soon.

ETA: If I recall correctly, the author of the GAPS book discusses this in this video (6 parts) starting here http://www.youtube.com/watch?v=nLP0Ijo2CK4

 

[richvank]

Hi, Stone.

In leaky gut syndrome, large undigested proteins fragments, such as from food, leak into the blood stream from the gut, because the "tight junctions" between the cells lining the gut are not as "tight" as they should be. This is usually a result of damage due to dysbiotic bacteria. The immune system responds by making antibodies against these "foreign" substances, and that results in food sensitivities. Fragments of the cell walls of gram negative bacteria (lipopolysaccharide or endotoxin) from the gut can also enter the blood via leaky gut. The immune system makes antibodies against them, too, and that is one of the things the Immunobilan test from VIPDx lab measures.

To have whole bacteria in the bloodstream, so that they can be cultured, is a more serious thing. That's called sepsis. I'm glad they caught it and got you on antibiotics. Infections are always one of the possible risks when one has surgery. You could be right that immune dysfunction in your case contributed to development of this problem. One of the particular jobs of the spleen, part of the immune system, is to deal with bacteria in the blood stream.

Hopefully the antibiotics will knock out the bacteria. Together with your doctor, you might consider taking some probiotics after this is resolved, in order to build up the friendly bacteria in your gut.

I hope you will be doing better soon.

Best regards,

Rich

 

[Stone]

Hi,
Thanks for your replies. Yes, I was most definitely septic and sick as a dog. I'm very glad I got treated when I did, because I would probably not be typing this right now. I still don't feel too good, and I'm still in the hospital on IV antibiotics, but I didn't feel very well even before the surgery. I knew I wasn't strong enough for the surgery immune-wise, but delaying it meant going still longer without adequate nutrition and running the risk of being forced to have the surgery on an emergency basis. I just wish I could have gotten one of the many doctors I told about my weakened immune status to LISTEN TO ME and either check it out or do something to boost up my immune system. But the milk is spilled already. I'm just really done with being ignored by doctors. It almost killed me this time. I just want to get better and get home before something worse happens. The good news is that I can eat better now. The only problem is that hospital food being what it is, I'm still not eating as much as I should, but that should resolve as well once I'm sprung from this place. Thanks again for the help understanding leaky gut and the other useful input. It's much appreciated!

 

[zoe.a.m.]

Stone,
I don't know enough about preoperative procedures, but were prophylactic antibiotics given or suggested? Certainly with many conditions, they are indicated--but there's also the issue of which procedures are more likely to result in post-op complications. Do you have any documented immune dysfunctions from the pre-op workup or just in general so that you could file a written complaint and hopefully prevent something like this from happening in the future to you or to someone else with ME/CFS?

At least you will be eating again soon! Make sure to check out which foods you're least likely to have problems with (or are least likely to cause problems with leaky gut) so that you're less likely to have more problems that will show up later. Also, ITA with Rich that probiotics (and a quality product) are going to be very important as heavy antibiotic usage is implicated in many or most cases of leaky gut--a vicious cycle!

 

[Stone]

Well, I'm finally home and how sweet it is. I knew I was sick and it was very serious, but after doing a little research I found that the survival rate for what I had was actually only 50%. I also found out that the infection was definitely acquired from my surgery, not from leaky gut or anything else. My lowered immune status was very likely to have played a major role as well and if they had listened to me and taken me seriously in the first place I probably wouldn't have gotten sick and spent an additional week in the hospital on super strong IV antibiotics.

It's a horrendous crime, in my opinion, that for so many years the CDC has failed to convey the true nature of ME/CFS to our healthcare providers. Doctors are generally clueless about what this disease does to its victims' immune systems among other things and that is very dangerous. It very nearly killed me. The surgeon did give me pre-operative antibiotics but she should have had me on post-operative antibiotics as well, especially since I had a fever ever since I came out of the recovery room. They should have drawn blood cultures, too, but instead they sent me home WITH A FEVER and a couple of days later I was in the emergency room with high fever from severe sepsis caused by E. coli, which has no business in a person's bloodstream and can cause immediate organ failure and death. If the surgeon had taken me seriously about my compromised immune status, NONE of this would have happened. If it were common knowledge that people with CFS generally have immune problems, NONE of this would have happened.

I'm grateful to be alive today and I hope to live long enough to see the CDC and certain others get what they so richly deserve. I know it probably won't happen, but the hope of possibly seeing justice done is one thing that keeps me hanging on.

 

[Dreambirdie]

Well, I'm finally home and how sweet it is. I knew I was sick and it was very serious, but after doing a little research I found that the survival rate for what I had was actually only 50%. I also found out that the infection was definitely acquired from my surgery, not from leaky gut or anything else. My lowered immune status was very likely to have played a major role as well and if they had listened to me and taken me seriously in the first place I probably wouldn't have gotten sick and spent an additional week in the hospital on super strong IV antibiotics.

Hello there Stone--

I am SO GLAD you are home! ...and recovering from your ordeal.

It is beyond shameful that your doctor dismissed your lowered immunity so recklessly. UN-fortunately this is MUCH too commonly a problem with doctors, especially regarding those of us with CFS.

Take good care of yourself, DB

 

[leela]

Welcome home, Stone, and so glad you made it through that terrible ordeal!
We can only hope that soon, very soon, doctors will start LISTENING to their patients, which just seems like common sense anyway.
So sorry you had to go through that, but glad you are home now in your own comfy surroundings, hopefully being loved up by some
two-legged or four-legged friends.
Know that many healing thoughts are coming your way from the Phoenix.

 

[Stone]

Thanks so much for your kind replies. And rest assured, I'm happily being loved by my family and my very special little canine friend who hasn't left my side since I came home. I think if it were possible to attach herself to me, she would. So blessed to be alive. I can't begin to describe how good it feels to be alive right now at this historic and pivotal time in the history of our disease. What a joy it is to watch the developments unfold as our status in the eyes of the medical community, the government agencies, the general public and so on shifts from where it's been to where it's going. We're finally getting our day in the sun, and it's high time. Even if this retrovirus or family of retroviruses doesn't turn out to actually cause our disease (yeah, right), things are NEVER going to be the same for us again.

I just don't understand why this story hasn't made it to prime time news or the major cable news networks yet. It's a big story, even if you don't have this disease, since they're finding it in a good number of controls which translates into millions of people. No logical reason the news agencies aren't reporting it. Oh well, they will get around to it eventually I'm sure.

Anyway, thanks again for your well wishes. Gotta love this forum and great people like you all.