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dazed and confused

Posted: Sat Sep 17, 2011 5:04 am
by HardMath
Heliobactur Pylori

In two days I’ll have a breath test to follow-up a prev pak treatment I had last month, my first to eradicate heliobactur pylori. I’m hopeful the bacteria is gone but still have questions. My doctor told me this was the last thing she suspected was my problem; the endoscopy with biopsy was the 4th procedure to see what was wrong.

“Loose bowel loops” came out of a sonogram, and “some form of colon disease” from a small bowel follow-through. Maybe the highly respected doctor didn’t enjoy feeling “wrong” several times, anyway she’s never been willing to talk about heliobactur pylori. For a month after the endoscopic exam I was urged to take the prev pak, but wouldn’t utter the name of the bacteria. After taking the treatment I was told her office didn’t “offer” the urea breath test and am only getting one after advising them a competing local GI doctor would give me one.

Four days after I started the prev pak it occurred to me I might get through the whole 12 days and that I might beat this problem I’m sure (and know how) I picked up at age three. That my doctor maybe finds the bacteria disgusting to talk about, or feels that I should, makes it hard processing the emotional stuff I’m going through, even though the outcome may be wonderful.

I’ve had chronic hypoglycemia since I was nine, despite being assured by a specialist that hypoglycemia is never chronic but only the passing result of other problems. No, I always had it, which has made eating with other people a nightmare. I’m a strong and independent woman, but if a meal’s delayed for even a half hour I’d get tearful and finally filled with paranoia and loathing for whomever my eye fell on. I felt they knew the hell I was sinking into and were laughing. So much for having a social life or a family life!

My chronic snacking’s been to keep that under control, but the heliobastard pylori always screamed for junk food. Tried to thwart it with a macrobiotic diet for years, but the impulse was to calm my gut with instantly assimilated, highly refined food. So the nasty cycle went on, and on.

Already I don’t seem to have those cravings, or the rumbling, screaming, fighting and multiplying that took place in my stomach. Everything’s peaceful and quiet; once in awhile I just eat fruit or vegetables for a meal, which I never did before.

And I had pretty bad Attention Deficit, which I’d credit that to the constant gut commotion. In the last year it became abject pain. My need to plan where to lie down and crash after a meal, and the rotten feeling of never having energy or stamina to do the things other people did (even things that involved standing for a half hour) made me feel monstrous.

My family viewed me as a slacker. I lately got involved doing prison work and found it such a relief being with other people, many of whom had spent lifetimes being misunderstood.

I wonder: when h. pylori is found after several biopsies—can it be determined how long it’s been in the stomach, and how far it’s spread around the stomach? I’d been (maybe) misdiagnosed with colitis, but I never had an ulcer. Still the daily pain of the last year made me feel, one way or the other, life likely couldn’t go on much longer.

My doctor doesn’t believe h. pylori could be the cause of all my gut issues. She said I’ll likely still have Irritable Bowel Syndrome and other gut issues. Maybe she’s a skeptic but I feel great and it’s hard not to be sad and angry about how much of a normal life I’ve missed. When can I just bust loose and make up for lost time?

Re: dazed and confused

Posted: Sun Sep 18, 2011 12:37 am
by Helico_expert
Hi, thanks for sharing your story. As you can see, gastro intestinal is like a whole universe which is still very poorly understood. If H. pylori plays a part in LBD is unknown. However, based on the characteristic of H. pylori, we think it's not possible because of its slow growth rate and fastidious growth requirement. It will be easily out compete by all other more successful organism in the intestine. Hence, H. pylori is only suitable to grow in stomach, where nobody else can grow.

Nevertheless, binding protein in intestine has been detected that will bind to H. pylori. Meaning, under certain condition, H. pylori may be able to colonise and produce inflammation. Or perhaps, its presence in the stomach is the continuous source of "toxin" (H. pylori does not produce toxin, the more proper term would be antigen or allergen) to the intestine that stimulate the immune response. In conclusion, these are just theory. No evidence has yet produced to establish such hypothesis. But I assure you there are already people looking into it.

From your biopsy, it is unable to tell when were you infected. The literature suggest that usually people catch them when they are young. Children as young as 2 yrs old were reported to be infected.

Anyway, I do hope that H. pylori is the culprit of your problem. At least then we know what are we dealing with. I also hope that your first treatment will go smoothly and have it removed completely.

Note: after the one week treatment, it is normal to feel no change to your previous status for at least 1-2 weeks. Your inflamed stomach takes time to recover to normal state.

Re: dazed and confused

Posted: Mon Sep 19, 2011 9:19 am
by HardMath
Thank You, Helico_Expert, for clarifying my picture. I completed taking a 12 day prev pak (4 weeks ago) and will take the breath test tomorrow.
(I have remarkable difficulty communicating with doctors, thus my website for fellow sufferers: patientsdeckofcards.com) The helico.com forum is a godsend.
Anyhow, loose bowel loops and my possible "unusual" colon notwithstanding, the complaint I presented with was a distended gut that would start growing hard and painful every afternoon, and honestly looked like I'd swallowed a watermelon. I provided photos of it for my doctors' files which made them uncomfortable but at least they "got it."
I've had 3 umbilical hernia repairs, the last with mesh, and was scheduled for another when we started to unravel my GI mysteries.
Couldn't enormous distention occurring daily, sufficient to cause hernias, also cause loose bowel loops? I understand you feel a distended belly to be more of an indicator of lower bowel disease, but there's a slight chance heliobactur pylori may trigger an allergic reaction that could set off such bloating, correct?
Since taking the prev pak I haven't had bloating, or felt strangled daily in my slacks and underwear. It's a great difference, so I think these two areas (which I can't bodily distinguish between) must somehow be relating h-pylori-wise.
Ingesting even a crouton of wheat will bring back the misery, so that isn't change, but I just have avoid it.

Re: dazed and confused

Posted: Tue Sep 20, 2011 8:03 am
by Helico_expert
i am glad you have gone through the treatment with ease. Hopefully the test result will be negative.