Re: pancreatic enzymes & UC symptoms

[Guest guest]

I found the article Dave posted timely, as Fred has an elevated serum

amylase of 116, but his lipase level was not tested. He's had symptoms of

stomach/pancreas/bowel problems. CA 19-9 test was slightly high, as were

neutrophils and total serum protein. Alk phos mildly high, and other LFTs triple

or quintuple the norm. Since his UC diagnosis in 06, the Actigal no longer keeps

his LFTs in normal range.

Abdominal MRI showed nothing but two kidney cysts, one filled with blood, which

he'll need follow up on.

This is the first time Fred's ever had these symptoms: nausea intermittently,

and pretty constant centralized moderate/dull stomach pain above the belly

button. Has been given Prevacit, plus a med to coat the stomach (which makes his

kidneys hurt so he stopped), was switched to Colazel for the UC as Fred was

convinced the Asacol was causing him to have an ulcer (unverified).

But as he seems to get over one symptom, another one starts. He's been playing

musical meds for days to try and get relief. Was off the Colazel for about 36

hours. Had massive stomach rumbling, a lot of pressure, and could not pass gas.

Felt he'd spontaneously combust if something didn't happen soon. And it did:

several bouts of diarrhea through the night and a few today. He's back on the

Colazel, but now stomach pain is back too.

DOES this sound like a UC flare up? Ulcer? Bowel obstruction? Endoscopy

scheduled for 10/26 but I expect he will have evaporated by then. He's drinking

lots of fluids, but pretty weak. We're pushing to move up the endoscopy or I may

threaten to stick a hose down there myself and see what's going on. Biggest

disappointment - we'll have to cancel our swing dance lessons this Tuesday

night. Drats.

Wife of Fred, PSC 03/04, UC 03/06

[Guest guest]

Hi ;

So sorry to hear about Fred's gastro problems. Has Fred been tested for

Helicobacter pylori?

Best regards,

Dave R.

[Guest guest]

That's one of the things they'll test for in the endoscopy. I just

don't think it's safe to wait two weeks for the test. Thanks for your

concern Dave - hope your son's doing well.

>

> Hi ;

>

> So sorry to hear about Fred's gastro problems. Has Fred been tested for

> Helicobacter pylori?

>

> Best regards,

>

> Dave R.

>

[Guest guest]

,

I've noticed when you switch several meds at one time, it's hard to figure

out what is causing what to happen. It just becomes chaos. I would suggest

that if you suspect a stomach ulcer, then make sure they do a bacterial

culture of the stomach when the endoscopy is done. The bacteria that

survives the stomach is helicobacter pylori, and about 50% of the population

has it. It's one of the most under treated diseases in the country. It takes

a hefty round of at least 2 antibiotics to knock it out, and the antibiotics

are almost worse than the cure - it'll knock him off his feet for a few

days. But then hopefully the bacteria is gone. The recommendation is to do a

stool culture when the antibiotics are done to be sure the bacteria is gone.

If it's not, he should go on a round of 3 antibiotics to get rid of the h.

pylori. Bloating, ulcers, stomach pain, nausea & fatigue are some of the

possible symptoms. BTW, h. pylori is the sole cause of stomach ulcers.

-Marie

>

>Reply-To:

>To:

>Subject: Re: pancreatic enzymes & UC symptoms

>Date: Sun, 14 Oct 2007 16:38:18 -0400

>

>

>I found the article Dave posted timely, as Fred has an elevated

>serum amylase of 116, but his lipase level was not tested. He's had

>symptoms of stomach/pancreas/bowel problems. CA 19-9 test was slightly

>high, as were neutrophils and total serum protein. Alk phos mildly high,

>and other LFTs triple or quintuple the norm. Since his UC diagnosis in 06,

>the Actigal no longer keeps his LFTs in normal range.

>

>Abdominal MRI showed nothing but two kidney cysts, one filled with blood,

>which he'll need follow up on.

>

>This is the first time Fred's ever had these symptoms: nausea

>intermittently, and pretty constant centralized moderate/dull stomach pain

>above the belly button. Has been given Prevacit, plus a med to coat the

>stomach (which makes his kidneys hurt so he stopped), was switched to

>Colazel for the UC as Fred was convinced the Asacol was causing him to have

>an ulcer (unverified).

>

>But as he seems to get over one symptom, another one starts. He's been

>playing musical meds for days to try and get relief. Was off the Colazel

>for about 36 hours. Had massive stomach rumbling, a lot of pressure, and

>could not pass gas. Felt he'd spontaneously combust if something didn't

>happen soon. And it did: several bouts of diarrhea through the night and a

>few today. He's back on the Colazel, but now stomach pain is back too.

>

>DOES this sound like a UC flare up? Ulcer? Bowel obstruction? Endoscopy

>scheduled for 10/26 but I expect he will have evaporated by then. He's

>drinking lots of fluids, but pretty weak. We're pushing to move up the

>endoscopy or I may threaten to stick a hose down there myself and see

>what's going on. Biggest disappointment - we'll have to cancel our swing

>dance lessons this Tuesday night. Drats.

>

>

>Wife of Fred, PSC 03/04, UC 03/06

>

>

>

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[Guest guest]

I believe there is also a blood test for h. pylori. Once you test positive

for h.pylori through the blood test, it apparently stays positive for quite

some time afterwards. That is why when you're done with the antibiotics, you

should have a stool culture done to verify that it's gone.

>

>Reply-To:

>To:

>Subject: Re: pancreatic enzymes & UC symptoms

>Date: Sun, 14 Oct 2007 20:52:11 -0000

>

>That's one of the things they'll test for in the endoscopy. I just

>don't think it's safe to wait two weeks for the test. Thanks for your

>concern Dave - hope your son's doing well.

>

>

>

>

> >

> > Hi ;

> >

> > So sorry to hear about Fred's gastro problems. Has Fred been tested for

> > Helicobacter pylori?

> >

> > Best regards,

> >

> > Dave R.

> >

>

>

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[Guest guest]

Yes there is a blood test, but Fred has read that it's controversial.

I don't know why his hepatologist didn't test for it two weeks ago or

why the gastro didn't last week - maybe for that reason?

>

>

> I believe there is also a blood test for h. pylori.

[Guest guest]

Hi Marie-

Even though h pylori is well known for causing stomach ulcers, NSAIDs

can also cause them.. And Asacol, Colazel are NSAIDs As taken from

medicinenet.com:

<<NSAIDs are associated with a number of side effects. The frequency of

side effects varies between the drugs. The most common side effects are

nausea, vomiting, diarrhea

<http://www.medicinenet.com/script/main/art.asp?articlekey=1900>,

constipation

<http://www.medicinenet.com/script/main/art.asp?articlekey=331>,

decreased appetite, rash, dizziness, headache, and drowsiness. NSAIDs

may also cause fluid retention, leading to edema. The most serious side

effects are kidney failure, liver failure, ulcers and prolonged bleeding

after an injury or surgery.>>

However, I'm thinking h pylori is a better bet.

Good news: Fred's feeling better this am, no stomach pain or nausea -

but every night is really bad. He went back on the Colazel and added

Endocourt (quasi-steroid to treat UC) and he only got up about a dozen

times to go to the poddy last night! (The night before was like, 30

times.) We've kept the Yankee Candle burning in the bathroom for about

36 hours - and it works. Love that cinnamon-apple scent.

Only one other parting thought: GO INDIANS!! (Former Clevelander.)

Wife of Fred, PSC 03/04, UC, 03/06

[Guest guest]

,

Sorry if I missed this, but has Fred been seen by his doctor since these symptoms became so bad. I know he is scheduled for Endoscopy, but pooping that frequently and your concerns about dehydration - I would imagine that if he is examined, hopefully the doctor will move forward to help with medication adjustments and speeding up the appropriate testing - so he is not MISERABLE. Sorry for the unasked for opinion, but this does not sound fun.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06)

-----Original Message-----From: [mailto: ]On Behalf Of HusseySent: Monday, October 15, 2007 7:29 AMTo: Subject: Re: pancreatic enzymes & UC symptoms

Hi Marie-Even though h pylori is well known for causing stomach ulcers, NSAIDs can also cause them.. And Asacol, Colazel are NSAIDs As taken from medicinenet.com:<<NSAIDs are associated with a number of side effects. The frequency of side effects varies between the drugs. The most common side effects are nausea, vomiting, diarrhea <http://www.medicinenet.com/script/main/art.asp?articlekey=1900>, constipation <http://www.medicinenet.com/script/main/art.asp?articlekey=331>, decreased appetite, rash, dizziness, headache, and drowsiness. NSAIDs may also cause fluid retention, leading to edema. The most serious side effects are kidney failure, liver failure, ulcers and prolonged bleeding after an injury or surgery.>>However, I'm thinking h pylori is a better bet.Good news: Fred's feeling better this am, no stomach pain or nausea - but every night is really bad. He went back on the Colazel and added Endocourt (quasi-steroid to treat UC) and he only got up about a dozen times to go to the poddy last night! (The night before was like, 30 times.) We've kept the Yankee Candle burning in the bathroom for about 36 hours - and it works. Love that cinnamon-apple scent.:)Only one other parting thought: GO INDIANS!! (Former Clevelander.)Wife of Fred, PSC 03/04, UC, 03/06

[Guest guest]

Hi Joanne-

Yes Fred's been seen twice since his symptoms: once by hepatologist

and once by gastro. I left a VM updating the gastro today and expect

her to call back. Last week, Fred told the gastro's nutty nurse that

he was thinking of going to another dr. who might be able to work him

in quicker for the endo. Nutty nurse responded: " No, that's not

allowed, you can't do that. " Too funny.

Gastro on Friday said she'd try and move Fred up the list for the

endo. Dehydration IS a concern, but he's very good about drinking lots

of fluids; although I need to read up on the symptoms for dehydration.

Will keep you all posted. It's a mystery!

Wife of Fred, PSC 03/04, UC 03/06