KittKat...? regarding HPylori...

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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/29/2008 9:52 PM (GMT -7)   
In a recent post, you mentioned that the source of the weird pain above your belly button area was due to "HPylori" bacteria, and that an antibiotic RX'd by your GI always solved the problem.

I have pain in that area as well, and a CT scan showed nothing - so I'm wondering if it's bacterial as well. It is an odd pain - just like you said. Not quite cramping, not quite gassy, not quite anything that there is really a word for... I described it to a coworker as "migrating ice-picks".

Do you happen to remember the name of the antibiotic that your GI rx's for this problem? I would love to have all of my ducks in a row for my appointment on Wednesday...

Or if anyone else has a similar problem with a corresponding solution that I could ask about...

Thanks!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/30/2008 6:11 AM (GMT -7)   
Hey Patient,

I've also likened this pain to ice pick pricks, too! :)

Back in 2003, my pain started out with these "ice pick pricks" just above my belly button (sometimes off to the right of it, too). And when I felt that pain coming on, I was IMMEDIATELY in the bathroom with a loose BM. I would have these pains sometimes up to 20+ times a day. These pains would also wake me up in the middle of the night. I dealt with this for months. I was taking LIBRAX at the time (which is suppose to just relax the colon) because at that time I'd been diagnosed with IBS.

But after a while, I started having a VERY painful ache at the top of my stomach and kind of underneath my left ribcage. I'd be doubled over in pain and in tears. It would last for a few minutes to up to 15 minutes. It, too, woke me up at night but did not cause me to have to go to the bathroom. From what I've been told, the first "ice pick" pains were due to the HPylori bacteria buildup. But the dull aching pain was from a stomach ulcer which was CAUSED by the HPylori bacteria going undiagnosed and untreated for so long.

BEFORE being diagnosed with Crohn's at the end of 2004 but during the process of having all the tests to find out what my REAL problem was (since by this time it was obvious it was something more than just IBS), I was given a blood test for HPylori. I tested positive. HPylori is a bacteria. My GP did that blood test and later that same week I had my first appointment at my new GI's office with his Nurse Practitioner. Knowing I'd just tested positive for HPylori, the NP sent me home with two different medications: FLAGYL and FLORA Q. The FLAGYL was specific for the HPylori.

After taking the Flagyl, I didn't have that "ice pick" pain again for another 4 years!!! In fact, I noticed a difference just a couple of days after being on the Flagyl.

However, last November I started having those same ice pick prickly feelings again which were sending me into the bathroom MUCH more often. I was bummed out because I'd been feeling really good for 4 years. So I went to see my GI. I did not see his NP this time who had originally prescribed the FLAGYL. My GI did not say to me that he thought the HPylori bacteria was active again. He KNOWS I have that bacteria in my system. I just told him I was having the same pain that I'd had 4 years ago prior to being diagnosed with Crohn's. His response was, "Lots of times you can get an overgrowth of bacteria in the small intestine so that is probably why you're having this pain along with the loose bowels." So at that time he prescribed XIFAXAN.

It's my understanding that once you've tested positive for HPylori with a blood test, you'll ALWAYS test positive for HPylori with a blood test. In order to find out if the HPylori is currently ACTITVE in your system, there is a saliva test and/or a breath test for this...I think even a stool test. But since my GI knows my body carries the HPylori bacteria, he just went ahead and prescribed a medication for me instead of having me go through a test.

I PERSONALLY (just from memory) remember the FLAGYL working better and faster than the XIFAXAN which I'm going to mention to my GI the next time I meet with him. But at the end of the XIFAXAN 5-day antibiotic round, I felt like a million bucks and spent the whole day riding rides at DISNEY WORLD with not a SINGLE bathroom trip while there. I'd been suffering every day for MONTHS prior to that!

Since taking the XIFAXAN in November, I've had what I call "the HPylori pain" several times again but have not taken anything for it. For some reason over the past few months, it has stuck around for a day, maybe a week or a little longer then gone away on its own without medication. I don't know why that is. MAYBE it is NOT the HPylori built up again. Without a breath test, I suppose there's no way to know for sure. I just know what the "the ice pick prickly feeling" IS so I relate it to HPylori since I know at the START of my Crohn's Disease, this was my initial problem.

Good luck at your appointment on Wednesday...let us know what advice your GI gives you.
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/30/2008 6:30 AM (GMT -7)   
HI there
I was DX with this as well and given the H /Pylori Pac..it contained Amoxicillain,biaxan prevacid from what memory my serves me

I know mine was found with a scope and biopsy.....I all too well remember the pain from it and it sounds so like what you have both described
HM My GI said that once you had it and were appropraitely tx for it chances of it coming back were nil ...or almost nil

** Have to add here I no longer have that GI .LOL
I hope it doesnt keep returning and thanks for the info on the blood test for it ....

LYN

Keep us posted plz
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/30/2008 9:52 AM (GMT -7)   
Thank you so much for the information! For the first time in weeks I feel like there is a light at the end of this stupid tunnel! There's nothing worse for me than going to my GI without a clue as to what is wrong with me. Now, I not only have other stories of people going through the same thing - I have possible solutions. YAY!

My heart sunk when you said the miracle cure was Flagyl, because Flagyl and I don't get along. But then you said Xifaxan... and that it just took a little longer with the different antibiotic. THis makes me so happy! This means I might even feel better in time for my wedding!

Thanks so much!!!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/30/2008 10:49 AM (GMT -7)   
I sure hope you DO feel the best for your MOST special day .
You deserve nothing less

LYN
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/30/2008 11:21 AM (GMT -7)   
Ok, I started to question my memory and timeline after posting what I did earlier...so I went back and checked my records and sure enough, I was a little bit off! (hasn't it already been proven on this board that Crohnies have bad memories?!)

I've actually taken ANOTHER string of meds for the HPylori besides what I've already mentioned.

I didn't take the FLAGYL until about 6 months AFTER I had the original HPylori test. Flagyl IS specifically prescribed for HPylori among other bacterial infections. So now I'm thinking the NP probably prescribed the Flagyl to cover several bases. Since he already knew I had the HPylori bacteria in my body, he might could also kill off E Coli, C diff, etc. with the Flagyl.

My GP, who did the original blood test for HPylori, prescribed my FIRST dose of meds for the HPylori. SO....the very FIRST thing I ever took for HPylori was BIAXIN and AMOXICILLIN. Both at the same time. THAT is the combination of meds that got me to feeling better so quickly. Heck...2 of them at the same time SHOULD have made me feel better quickly! ;) My GP also prescribed ACIPHEX at that time to help cure the stomach ulcer (the ache at my ribcage) that the HPylori bacteria had caused.

I'm so glad you asked me about this...I've been wondering about the Flagyl lately as to when and why I took it but I've been too lazy to go look up my old records and notes for myself!! :)

I don't guess there's any ONE specific antibiotic for HPylori bacteria. I imagine lots of different antibiotics would do the trick although I know FLAGYL and BIAXIN are specifically prescribed for HPylori. The info I've read on XIFAXAN doesn't say anything about it being prescribed for HPylori, BUT it is an antibiotic that is SPECIFIC to bacterial infections of the INTESTINES ONLY. It passes straight through your stomach directly to your intestines and doesn't get absorbed into the bloodstream.

I'd also like to add that when my GP prescribed the Bioxin/Amoxacilin/Aciphex, I had NOT yet been diagnosed with Crohn's.

OK! I'm glad I cleared that up. GOOD LUCK!

When is your wedding????
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/3/2008 4:28 AM (GMT -7)   
Patient,

How did your appointment with the GI go?
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/3/2008 9:20 AM (GMT -7)   
I got my remicade yesterday, and it is administered in an infusion room with a "remicade nurse", so I thought maybe she could answer some of my questions. Pah.

I asked her right off the bat about the HPylori, and she knew a little about it. She had it herself at one point, and she did remember that it took two different kinds of antibiotics in unison to treat it. That was the end of her helpfulness. She tried to make it sound, in not so many words, that this was an ailment that affected the general population only, not crohnies, which makes oh-so-much sense. In her mind, us crohnies are not part of the "general population" apparently, and therefore unable to contract the bacteria? Why does it always have to be some convoluted mystery with us... I would be perfectly content to have an ailment of the general populace. She didn't find the humor in my jaded replies. Again, PAH.

I often use her as a go-between with my GI, as she has a fast=track way of communicating with him that I do NOT have. She, however, told me that they do not test you for HPylori unless the doctor deems it a probable cause.

I explained to her that I had an ultrasound, and a CT scan - both showed nothing. My symptoms remain. At what point, I asked, does bacteria become a probable cause? She babbled on without really answering.

SO. I see the actual GI tomorrow morning. I am not anticipating having any better luck with him. I just don't understand why they haven't even done a stool sample yet! They'll send me for hundreds of dollars worth of pointless ER visits and CT scans, but they won't just do a simple culture? Am I missing something here? Goodness.

My goal tomorrow is to convince my doc to do a stool sample, and possibly a breath test. And no matter how mad I get, I MUST NOT leave the doctors office without sufficient pain pills, anti-nausea, and lamotil. I figure, worst case scenario, I'll go on a liquid diet for two days before the wedding and pop an anti-nausea and pain pill before the ceremony. This should keep me from having to run to the bathroom, and from doubling over and wrinkling my wedding dress!

The ways us crohnies learn to improvise, eh? All will be well. Eventually. I'm doing better now that I've resigned myself to the fact that I will NOT have this figured out prior to next Saturday (the BIG day). I will make the best with what I have, and piece it all together after the wedding. The GOOD GI that I had to leave behind when I moved last year is going to research GI's in my current area to see if he can find someone he knows or trusts that I could go to instead of the goof balls I'm seeing now. I think if I can find a better doc when I get back from the wedding that I'll have better luck.

If I have an unexpectedly eventful appointment tomorrow I'll let ya know. But like I said, I'm not holding my breath for any help from this doc.

Thanks again, for all of your help!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/3/2008 11:27 AM (GMT -7)   
God forbid us Crohnie's get something that the "average joe" could get, too! Your Remicade Nurse sounds a bit like the Echocardiogram Technician I had last month. After she started looking at my heart with the little ultrasound wand, I asked her, "now, what exactly is that we're looking at on the screen there?" I was expecting her to say something like, "well, that's the posterior end of the 4 chambers of your arterial..." blah blah blah. INSTEAD, her answer was, "Uh, YOUR HEART." PAH!

Just FYI: the HPylori test can be done with a finger prick of blood. Quick and painless and you find out the results in minutes. Probably less expensive, too, than the breath test.

Good luck! Hope you are feeling like a million bucks next Saturday.
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/3/2008 3:15 PM (GMT -7)   
Thanks Kit - I need all the good mo-jo I can muster!! And bless you for your note-taking!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

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