Hello, I'm new, having some DS issues and I'm scared :(

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@barrelracinbroke are you home? How did things go with Dr. K? What's the plan going forward? Enquiring minds want to know! (in case you aren't old enough to recognize that line, it was in the ads for the old National Enquirer)
 
Hi everyone!! I'm home!! I just met one of the best doctors I ever had thanks to your direction. I don't even know how to begin to thank you enough!! Had I not learned of Dr. K through the friends that reached out to me and brought me here (thank you Larra!), today probably would've went very differently. My husband and I are so appreciative.

Dr. K's bedside manner was perfect in my eyes. First he told me to calm down (in a very comforting way), he reviewed my recent labs and little to no concern with them. Then, we discussed my symptoms and he checked my stomach. At that point, he said he felt a "loop" and sent me for a CT scan immediately. I had it done at the hospital next door. The CT scan showed that I had one bowel going "into" the other bowel and within 5 minutes of the scan starting, it had released itself. I do need to have surgery to correct this from continuing to happen. Something with where my original sutures were where my common channel connects is where it's happening. I'm to call his office tomorrow to schedule that since it was after 5pm by the time he was able to speak to me about it and his office staff had left. I'm to eat a liquid and soft food diet until the surgery. I'll be in the hospital for 2 days and off work for 1 week. The radiologist that read the report was not concerned at all after what he saw, but Dr. K was so thorough he picked up the phone, called the radiologist and confirmed that I indeed need to be treated for this and it is technically an obstruction even though it cleared.

After looking so closely at my CT scan, he told me I had a very long common channel and hardly any bypassed bowel since my revision. So, I do get a large portion of my nutrients from my food (which is maybe why it "seemed" Anthone wasn't overly concerned with my nutrition? who knows).

Like Diane said, he does want me to up my calcium to lower my urine oxalate levels :) And what you posted Diane about the transplant in to my arm is exactly what I have. I did have to take calcitriol, but my little guy in my arm didn't start working fast enough to stop me from having to go back to the hospital after being released. My calcium dropped too low and I had to be re-admitted. But they got it back up and I was ok after that.

Today, Dr. K also prescribed me Flagyl? 3x a day for 10 days and continue to take probiotics. But, the pharmacist scared me so bad with the possible side effects that when I call Dr. K's office in the morning, I'm going to make sure he wants me to take it! What the heck?!

Anyhow, this was a very long day but we're so grateful to have gotten to meet Dr. K. He's awesome!! Thanks everyone!! Thank you so much!
 
In this particular case, ignore the pharmacist (more often than not, they know more than the surgeons, but not in this case). Flagyl (metronidazole) is an old antibiotic with a specific type of bacterial target - mostly, ones that are problematic in our rearranged guts. It has a bad reputation for some reason - I think some misinterpreted studies where they determined it caused cancer or something - but that was pretty much disproved and yet the stigma remains. Many of us do rounds of Flagyl just as Dr.K recommended periodically, when the poop stink just won't go away even when eating only safe foods - because we have/get bacterial overgrowth of the bad bugs that cause gas, bloating and stench. Some people in fact ABUSE Flagyl because - unfortunately - it allows most of us to eat white flour and other foods that normally cause gas with no consequence. Some people are prescribed prophylactic maintenance doses of Flagyl - I would not do that.

Flagyl abuse has two problems - (1) it is too tempting to misuse it to eat bad carbs with abandon; and (2) Flagyl is the first line of antibiotic defense against C. diff, and if you keep using it at subtherapeutic dosage regimens, you end up with guts that contain Flagyl-resistant C. diff, and you do NOT want to create and harbor those bad boys.

http://en.wikipedia.org/wiki/Metronidazole

"Mutagenesis and carcinogenesis[edit]
Metronidazole is listed by the US National Toxicology Program (NTP) as reasonably anticipated to be a human carcinogen.[15] Although some of the testing methods have been questioned, oral exposure has been shown to cause cancer in experimental animals and has also demonstrated some mutagenic effects in bacterial cultures.[15][16] The relationship between exposure to metronidazole and human cancer is unclear.[15][17] One study [18][full citation needed] found an excess in lung cancer among women (even after adjusting for smoking), while other studies[19][full citation needed] found either no increased risk, or a statistically insignificant risk.[15] [20] Metronidazole is listed as a possible carcinogen according to the WHO International Agency for Research on Cancer.[21] A study in those with Crohn's disease also found chromosomal abnormalities in circulating lymphocytes in people treated with metronidazole.[16]"

http://ntp.niehs.nih.gov/ntp/roc/content/profiles/metronidazole.pdf

"Cancer Studies in Humans

The data available from epidemiological studies are inadequate to evaluate the relationship between human cancer and exposure specifically to metronidazole. An excess of cancer of the uterine cervix was found in two epidemiological studies of women treated with metronidazole for vaginal trichomoniasis (Beard et al. 1979, Friedman and Ury 1980, IARC 1982); however, trichomoniasis is a risk factor for cervical cancer, and one of the studies (Beard et al. 1979) showed a greater excess of cancer among women with trichomoniasis who were not exposed to metronidazole. The study by Beard et al., but not that by Friedman et al., reported an excess of lung cancer, which may have been due to smoking.

Since metronidazole was listed in the Fourth Annual Report on Carcinogens, additional epidemiological studies have been identified. In a follow-up of the cohort study by Beard et al., the incidence of lung cancer (bronchogenic carcinoma) was significantly increased in women exposed to metronidazole, and the excess remained after an attempt to adjust for smoking (Beard et al. 1988). In a study of over 12,000 people who had used metronidazole, no excess of cancer (all tissue sites combined) was found after two and a half years of followup (IARC 1987). A large cohort study of cancer in children prenatally exposed to metronidazole found no overall excess of cancer (all tissue sites combined); a twofold increase in the risk of neuroblastoma (cancer of the sympathetic nervous system) was not statistically significant (Thapa et al. 1998)."

I take it cautiously (up to 4 times a year - only once in the last year). AND DON'T DRINK ALCOHOL WHILE TAKING IT!
 
"The CT scan showed that I had one bowel going "into" the other bowel and within 5 minutes of the scan starting, it had released itself."

Sounds like an intussusception? http://en.wikipedia.org/wiki/Intussusception_(medical_disorder)

"An intussusception is a medical condition in which a part of the intestine invaginates (folds into) into another section of intestine, similar to the way the parts of a collapsible telescope slide into one another.[1] This can often result in an obstruction. The part that prolapses into the other is called theintussusceptum, and the part that receives it is called the intussuscipiens. Intussusception is a medical emergency and a patient should be seen immediately to reduce risk."
 
@barrelracinbroke I'm so glad you now have the answers you need and that Dr. K is going to fix this problem for you. Don't be afraid of the flagyl. It's a good drug, though as @DianaCox said it should not be abused by overuse. And if you drink alcohol while taking it, it has the same effect as Antabuse, and you will be thoroughly miserable, so avoid alcohol completely - not that you feel much like drinking at this point anyway, I would think.
Did you discuss with Dr. K whether or not your common channel length should be adjusted while he's in there, or is he just planning on fixing the immediate problem? Either way, you are getting the care you need and that's what matters.
 
And I almost forgot, get in as much protein as possible while on your soft diet. Protein is essential for wound healing, and for healing on the inside as well.
 
Thank you all. I took the flagyl this morning after hearing from you guys. Will it possibly help with the continuing diarrhea?

And yes Diana, that is what he called it. I couldn't remember the term. It did resolve itself during the CT scan supposedly but he said I needed surgical intervention to stop it from happening again, or continuing to happen.
 
Ok, thank you for all of your help Diana. I know I've said this a thousand times but I'm so grateful.
Also, last night, after taking my probiotic I had worse diarrhea than I've had in at least a week. Could this have been from starting the probiotics? Should I stop taking them? I'm sorry about all of the questions.
 
Yes, could be from the probiotics - again, they can mess with your guts at first, but in the long run should help improve the situation. Don't stop.
 
Thats FANTASTIC news!! I am SO HAPPY for you that you are going to get the care you need and were focused enough to listen to these Ladies and thus "self-advocate" for your self!!! My (our), Girls are NEVER wrong, they are BAD A$$ to the bone actually!!!:D
 
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I was hearing alarms and seeing flashing lights when I read your initial post, so I am somewhat relieved to see not only the answers you already received, but that you are open to what you are hearing and able to apply it to your situation immediately and also that you were already able to see Dr. K.

Of the issues you initially mentioned, the only one I'm super familiar with is the kidney stones, but want to mention a few things. Diana mentioned Urocit-K, which is by prescription only but I'd ask Dr K if he can get you going on that for the kidney stones. If he can't, then talk to a nephrologist. If your 24 hour urine tests have shown low citrate, I'm sure it won't be a problem. In the meantime, getting real citrate however you can won't hurt (likely not enough on it's own, but may help) like lemonade using real lemon juice.

Also, my stones are made of calcium and oxalate, as most are, and I'm up to 6Kmg of calcium a day. The main reason it has been raised so many times, is like Diana said, it will bind that pesky oxalate in the gut so you don't get to absorb it (calcium can be bound with other stuff in the gut as well), so I take two calcium tablets (600mg) EVERY time I eat. If your taking your calcium at some other time, it can't help with the oxalate in your food.

When you said that you still have oxalate crystals despite supposedly not having kidney stones, that means you are still very likely making them, or will, so keep upping the calcium till the crystals are dealt with, and the plan is to also get enough calcium that some even makes it to your bones. You will also have to adjust your magnesium up with the calcium. Many say to take 50% of whatever you take of calcium, so if you take 2000mg of calcium a day, you will need 1000mg of magnesium. My nephrologist is pushing me to a 1/1 ratio of them, and may even go to a 2/1 ratio, with twice as much magnesium as calcium, but you want to discuss this with whichever physician follows your labs with you.
 
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