I need help!

General
1

Hello, I need help understanding something. My son had an ERCP for a biliary stricture (1 cm in the common bile duct). Nothing else was abnormal and a stent was placed. Before the procedure he was on Cholestyramine and his stools were normal with that. After the ERCP his stools were abnormal and we had to put him on Creon for him to be "normal". The docs stayed away from the pancreas during the ercp and all his blood tests normalized 3 weeks after the procedure.

When we decreased the amount of Creon he takes he was still fine. We just tried today to stop it all together and the abnormal poop came back. Why is it that he needs Creon when his blood tests (including pancreatic enzymes) are normal and he has a stent in?

2

This is a very interesting question. I am an RN and still not sure about this question. Sometimes it just takes a long time for the bowels to "normalize". I would be very interested to see what your doctor has to say about this. I am sorry I don't have any answers for you, but I do hope this get better.

3

Well, I still don't have definite answers. His doc says that it could be caused by a narrowed duct (not seen in ERCP), inflammation caused by the ERCP, or just that the stent is narrow and therefore doesn't let the enzymes pass freely (seems supported in this excellent PSC bit:

http://www.hopkinsmedicine.org/gastroenterology_hepatology/_pdfs/li...).

Let me share what has been going on with John and see if anyone has any advice/feedback (which I would appreciate greatly).

John's symptoms started this summer with fatigue, pancreatitis, gallbladder sludge, and high liver enzymes. His dad and brother have UC. His doctor at the time subjected him to huge amounts of tests and procedures, including a colonoscopy/endoscopy in July that was normal and showed no inflammation. His ANCA levels were normal.

At the end of July he started itching at night, and it got to a point where we were up every night, all night, doing cold compresses over all of his body with round the clock Atarax and Benadryl. The itching only improved with Cholestyramine. He had his first ERCP in August where a 1 cm stricture was found in his common bile duct and a stent was placed. There were no other abnormalities in his ducts and the docs at UCSF told us they thought it was caused y a congenital malformation.

It is worth mentioning here that he was given Augmentin after the ERCP that made him very sick with diarrhea. At the time of the ERCP he was only taking Cholestyramine and his stools were normal with that.

After the ERCP John's stools were normal for a couple of days, and then he got oily diarrhea with the Augmentin and even after stopping the Augmentin had abnormal stools until he got on Creon (pancreatic enzymes). His amylase and Lipase were normal and all his other blood tests normalized within 3 weeks.

Before his second ERCP John had halved his Creon dose and was feeling well. He did a stool test though that showed high calprotectin levels indicative of inflammation in the intestines and an IBD (1200). he still had no symptoms of an IBD.

His second ERCP was in September. The doctor said that the stricture was a lot better. He replaced the stent with another one the same size and said he thinks that he won't need to replace it next time (just balloon dilate it). Again there was no other bile duct damage. John was given Augmentin again (last time!!!). He developed diarrhea and huge mouth sores. Somehow his poop was abnormal with lower enzymes and we had to up the Creon dose to normal levels again.

His new doctor ordered Prometheus tests. They came back VERY positive for UC. So now they are saying that he has PSC and want to do a colonoscopy and a liver biopsy. I am fine with the liver biopsy, but I don't understand the need for another colonoscopy as he is still asymptomatic for UC. Any idea what they might be looking for?

John is feeling good right now with the CREON and the stent. He is set to do blood tests next week. Another question I have: if the stent is removed, the stricture is gone, and there are no abnormalities in the ducts, should we sit and wait with regular blood tests (my preference) or start him on Vanco? What are your experiences with disease progression? what do you know about c-diff?

4

I forgot to mention that the surgeon that performs the ERCP is not the same as his gastro.

5

No bile is getting through the stent. the blood tests are normal, the stools are the right color, and there is no itching. They say that the stent might not be allowing for enough enzymes to pass through. I don't get it either :-)

6

C-diff is a very nasty thing to have. His stools would not get any better if he had that. It is continuous uncontrollable diarrhea, and usually looks kind of mucousy. Plus it is very, very smelly! You think he is asymptomatic for UC, but maybe the doctors are leaning more towards that because of his issues with abnormal stools, especially since the Prometheus tests came back positive. All very confusing, poor kid! I am assuming they took biopsies when they did his last colonoscopy? I wouldn't think he would have all of a sudden developed UC in just a couple of months if the biopsies were negative, but what do I know. Obviously something is going on in there though because of all of his test results. I probably didn't really help answer your questions, but just food for thought?

I am so sorry your son is having to endure all of these testings and still not having any answers. I hope he continues to feel pretty good.

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I asked about c-diff because his doc is saying that we do the biopsy and then start him on Vanco. I'm just wondering if it is not too early? I guess we'll wait for the biopsy results.

Yes they did biopsies with the colonoscopy and they were all fine. His stools got getter with the Creon, not with UC meds.

8

Oral Vanco is used "on-label" to treat c-diff but it is also prescribed "off-label" for the treatment of both PSC and UC. C-diff is a pretty easy thing to figure out from a stool sample. Did your doctor say that your son has c-diff? If not, I'm inclined to think that your doctor is prescribing the Vanco to stop the PSC and UC from progressing.

Oral Vanco is a very benign drug. All the scary side effects of IV Vanco don't apply when it is taken orally because the drug doesn't permeate the gut and enter the blood stream. A lot of people (myself included) take it long term with no serious side effects reported.

9

JTB, I'm mentioning C-diff because I worry that my son may get it later (while on Vanco) and may not be able to get rid of it (his old doctor, who we got rid of, told us he'd die from c-diff if on Vanco). Can they cure c-diff if you are on long term Vanco?

Our current doctor is Ken Cox with his RN Kathy Cox. I worry now that there is a conflict of interest as they are looking for patients for their trials and that my son, who supposedly is at a very early stage, doesn't need Vanco yet. I read about so many patients who have a "dormant" disease for years and wonder if starting the high dose antibiotics now instead of close monitoring is a good idea.

10

With all due respect, your old doctor needs to do some homework. There has never been a documented case of Vancomycin resistant c-diff and it really isn't anything to worry about. C-diff are bacteria that naturally live in the gut and cause problems when there is an overgrowth in their numbers. Vanco kills all of c-diff in the gut and would prevent such an overgrowth condition from happening in the first place. The c-diff doesn't get used to the Vanco over time--that's not really how resistance works in this case. Theoretically, C-diff could learn the resistance from swapping genes with a compatible bacteria that is vancomycin resistant, but this has never happened.

There are a couple of concerns with waiting to treat. PSC is never truly dormant as the body is always attacking itself to varying degrees. I was asymptomatic for 12 years, but my liver still became a mess of scar tissue during this time. The side effects of PSC are hardcore and miserable. The side effects of Vancomycin are inconsequential in comparison. If you have the opportunity, I highly recommend you stop the PSC from progressing at the earliest possible stage.

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Thanks for your reply jtb. Did I thank you for the recommendation you had given me in the past for MTCs when John was on a low fat diet? they stopped his weight loss when he was already at -15% of his initial weight.

His old doc didn't believe in Vanco and wanted "to see a 20-year study proving that it delays time to transplant before prescribing it". That's why we left her and went to dr. Cox. From want I've read, I believe that Vanco is worth a try, but would like to have a definite diagnosis before starting it. I hope that we'll get there in the next couple of months.


You mention the side effects of Vanco, what are they? and how long have you been on it? Also, are the pills big (John is concerned)? and is it costing you a little fortune (need to plan for that!)?

12

I'm glad the MCT oil is working! I've found it invaluable in getting my vitamin D levels back up.

The main side effect of oral Vanco is mild nausea/upset stomach if taken without food. This is typical for most antibiotics. Other side effects reported include headaches, stomach pain, and diarrhea (~two cases for each side effect). This is pooled from the Mayo, Mass General, and Stanford studies; information provided from Dr. Cox; and from anecdotes pulled from message boards across the internet. Unique to compounded IV Vanco (liquid) - the antibiotic can cause non-permanent brown surface stains on the teeth.

Although exceedingly rare, the major side effects associated with IV Vanco can occur if the Vanco permeates the gut. A metabolic panel to test kidney function is an easy way to keep tabs on whether this is happening. If kidney function is elevated, a Vancomycin test can show conclusively whether the Vanco is getting into the blood.

I have been experimenting with Vanco for 15 months and have been on it consistently for 8 months. Oral Vanco (pills) aren't huge but they aren't tiny either. The pills are also exceedingly expensive, even the generic. A one month supply of 1500mg/day generic is about $3500. My copay was $5 but I was nervous that my insurance company would push back given that the treatment is experimental (they have no obligation to pay). I switched to compounded IV Vanco which is dirt cheap by comparison (~$250/month for a generic). The IV and oral forms are the exact same antibiotic although the IV form needs to be converted from a powder to a liquid for consumption. This can be done by a compounding pharmacy. The medicine is typically suspended with a sweetening agent and it doesn't taste bad at all. All in all the compounded IV form is less convenient than the pills given that it needs refrigeration and isn't quite as portable, but I'd much rather get stuck with the IV bill.

Per Dr. Cox, Prasco is the go to generic for the pills. I recommend the Hospira generic if going the compounded IV route. At most pharmacies you can request that they stock a particular brand.

13

OMG, $3500 is enormous. Is there any hope of a price drop in the future? I guess we'll go the IV Vanco route too.

He doesn't take MCTs any more. The stent and the Creon are doing the trick for now. I'm keeping my fingers crossed that it stays that way until his next ERCP on the 30th.