gastro issues

Hello all.  First day here !!  Have been researching "intestinal issues" for years, moreso when I'm having an "episode".  I did find healingwell after reading the Sunday paper supplement.  I'm wondering if there shouldn't be another "topic" being just gastro or intestinal issues?  I can't help but feel a lot of us are not accurately diagnosed and the usual symptoms of colitis, crohns, IBD, IBS, etc are all so similar.  There is one topic/area that concerns me personally, that being parasites.  My "flares"/episodes now are so cyclical and the episode goes thru it's own various symptoms.  I was dx'd with UC in 96, after moving to AZ from PA and taking my first trip to Mexico.  I do accept that I did have UC at that time..all the common symptoms, that being lots of blood, and tenesmus (feeling like there's more in there so you sit there and strain)  I only responded to prednisone (which I'll only go to again as a last last resort)  A couple years ago when prednisone wasn't working and my symptoms had changed, a new gastro doc did find an amoeba/parasite.  I think I still have eggs or cysts hatching about every 3 mo.  Sometimes these episodes do make me so sick, go on longer than usual, and I end up with colitis but in my research I've found that is an actual "diagnosis"..like drug induced, etc..there's bacterial induced colitis. I do then go back to being absolutely normal..one bowel movement in the morning..no need for pads or Depends (I'm also incontinent with these episodes) and that's the one thing that is most troublesome, to go from being so normal to having to wear protection.  I know that parasites are extremely hard to "catch"/diagnose.  I do have an appt with an infectious disease doc later this mo.  Am hopeful.  I do have a "kit" from Great Smoky Labs (they specialize in dx'g intestinal stuff) but I still have questions about using it..i.e. when would be the best time in my "cycle" to catch the critters?,etc.  These episodes begin with 3-4 days of deep gurgling in my stomach. People can hear me across the room. But most of my symptoms occur at 4:30 a.m..you can set your clock !! (and I've read this is classic parasite symptom) After a few days of gurgling..it then morphs to gas.. after a few days of gas..I then begin passing mucus.. so much so that I need a pad/protection.  In the past I've taken Flagyl (which is very hard to tolerate) Sometimes when I took it early in the episode it seemed to help. Other times, not.  When I was dx'd with the amoeba, I took Yodoxin.  It helped with that episode but didn't the 2nd time I tried it.  The mucus "symptom" then stays with me thru the entire episode, but it advances to very loose stools, not what I'd call watery diarrhea.  I know I'm on the mend when I start having a firmer stool again.  The usual drugs for UC did nothing/only prednisone.  I hesitate now to take anything thinking that if it's bacterial, it should be outta there!  I did take various probiotics, now take the (expensive) VSL3 as recommended by my doc.  Frankly, when I'm having an episode, I think I'm throwing my money down the toilet, literally.  I'm not sure if taking it does anything (it's highly recommended for UC and Crohns..check their website..VSL3.com !!  and so again, I think it's not so helpful since I have a parasite.  I've even come across one page while researching that suggests the probiotic/friendly bacteria can be "food" for the badguys.  ??   oh me..  I think I could handle it better if it were a constant in my life, but to be totally "normal" for 2-3 mo. then realize the same symptoms are coming back in the same order..it's totally depressing, colors my whole world.  When I'm having an episode is when I research.  When I'm normal, I don't give it a thought. aka the classic "achey tooth" syndrome.   So sorry for being lengthy here, just wanted to get started and tell my story.  I've done a zillion regular stool samples for the local labs, again they only found the amoeba a couple years ago.  I have an appt w/my gastro in a couple weeks, then the inf disease doc end of the mo.  Will take my mounds of "research" notes with me.  I also wonder about Lotromex..a drug for severe chronic diarrhea that was pulled a few years ago but now available again.  I still am afraid to take something to stop it..thinking I could be doing more harm.   Bless you all who are suffering.

Hello Sarita.  I've never experienced fever or weight loss..mostly ab pain/deep "gut" pain..and the profuse mucus.  Have you heard of the Great Smoky Lab in NCar, i think.  It's now called something else but if you google great smoky lab, you'll get to it.  Very well known..you get to them only thru a doc's Rx.  I feel strongly that once you've had a parasite/amoeba, the cysts/eggs hatch, thus my "cycle".   I have tried Flagyl (gosh, it's tuff to take ! )  Sometimes it helps (I think if I take it early in the episdoe)/sometimes not. I've read that a combo might have more success/various drugs like rifaximin w/Flagyl, etc.  and I'm getting ready to try those two together next round.  Have also read mixed opinions on "pulsing" drugs..taking for a couple of weeks, waiting (for things to hatch) then repeating the drug.  Have never been prescribed cipro.  I'm so hesitant to take any antibiotic for fear I'll then end up with antibiotic induced colitis (clindamycin the worst) with possible Cdiff...another one hard to diagnose and get rid of.  This truly is a very frustrating "disease".  I have one kidney w/stones in it.  It's a vicious cycle..I have "accidents" especially while sleeping when I'm having an episode, that ends up giving me a urinary infection.  and then there's the constant irritation on the skin.  Just shoot me!!   

Pagal,

I haven't come across any parasitic disease boards out there either (but then again, I'm not looking very hard).  I've found the IBS peeps on HealingWell provide plenty of support and information, even if they're not infested  

I am wary of other sites that claim everyone is infested with parasites and needs to be treated with this-or-that herbal cleanse or detox diet or de-gunker or something.  I really don't think parasitic infections are entirely that common in the U.S.  Outside of the U.S., definitely - I'd say most of the world's population does not have access to clean drinking water and the parasites run rampant in those situations.  But even people who contract parasites abroad and come back to the U.S. normally heal without complications - even if they are not treated medically - because the body has many miraculous ways of healing itself.

At the time of my acute illness in Africa, I was having about 30 bouts of watery diarrhea per day; 10-20 episodes of vomiting per day; lost about 15 pounds; had fevers up to 104 degrees; stomach cramps, etc.  Blech, indeed.  I was treated with Flagyl and Cipro and recovered somewhat, but when I returned to the U.S. I was hospitalized for several days.  The doctors at a major teaching hospital in Philadelphia could not locate the culprit.  It was believed to be malaria at first because of the high fever, but my blood smear was negative.  Colonoscopy and upper endoscopy, stool cultures, etc. were all negative.  It was baffling.  For the next several years I'd have episodes of illness that ranged (in my opinion) from "mild" (diarrhea less than 10 times a day) to "severe" (more than 30 times a day).  Even the Mayo Clinic had no answers.  I also tried sending my stuff to a lab in Arizona that specialized in parasite testing, but my results were negative.

I've taken Rifaximin, and didn't find that it helped, but evidently it is being used with success in the medical community for Small Intestinal Bacterial Overgrowth; research is being done on this condition but it might provide a clue for some of us weirdo mystery cases out there.

If you had a documented case of amoebiasis, it might be worth it to try a double whammy and ask your doctor about a Flagyl/Cipro combination for 10 days.  I know it's not fun - I was nauseated as all get out and had bad headaches the whole time - but I did improve somewhat after those courses of antibiotics.  C. diff is a problem with this for sure (never contracted it myself), so you have to weigh the pros/cons. 

It's good you're seeing an infectious disease doctor.  You should ask for copies of any blood work and other tests you've had.  Often in the case of a parasitic infection there are some blood markers (elevated white cells, elevated eosinophils, some other stuff).  Do you have copies of your labs?