Advice would be appreciated.



L

Lisa

Guest
Hi there. I live here in the Seattle area and I'm one of those
patients that they can't seem to figure out. I've had 7 large ulcers in a
year, one being a GI bleed. I'm only 29 years old and I'm a female. I bled
so bad that my hematocrit was quite low. I've been hospitalized twice for
these and I've had 9 endoscopies in the last year. The last scope was
today. The following is a summary of my problem:

It all started in December 2002, I had a small ulcer and was treated for it. It went away and after
3 months I stopped medication (Prevacid 60mg/day). Then in August of 2003 I went in with abdominal
pain again and they did another scope (I had had 5 prior to this). They said that they wished they
had a stomach like mine and that it looked great, they didn't do the test to check how much acid I
was producing. Not even two weeks later I was admitted into the hospital for severe abdominal pain.
They scoped me yet again and found 3 very large gastric ulcers. I was in the hospital for two weeks
and even had a feeding tube that went to my intestines. For the next several weeks I was on Prevacid
60mg / day. I was rescoped at the end of November to check on the ulcers. There were no ulcers left
but I did have Gastritis and tested positive for H Pylori this time. So I did the 2 antibiotic and
Aciphex treatment. That was fine, I was satisfied. I was told to stay on the Previcid for life this
time and so I stayed on it. About five weeks ago I fainted and I had abdominal pain. I was rushed to
the ER and a rectal revealed that I was having a GI bleed. My hematocrit was 25 and fell. I stayed
in the hospital for two days and this time my medications were majorly increased. Prevacid AND
Aciphex. My GI doctor decided to send me to University of Washington Medical Center for another
opinion since his hands were tied. Keep in mind that the GI from the original hospital put me on 100
(Yes 100) bottles of 2% Viscous Lidocaine. I like to use that but when I had another Gastritis
attach, the ER doctor told me I could sieze from that.

Nine days ago I went to UW for another opinion. This doctor told me to take even more acid reducers
for nine days (Prevacid-60mg/day, Aciphex 3/day, Carafate, Zantac, Prilosec, Reglan (nausea)). So I
did just that. Today he went in with the scope and the ulcer did heal. However, he told me he did
some (PH? if I remember right?) and that I have a severe amount of acid in my stomach. He consulted
the surgery team but no one will cut the nerves to my stomach electively. He doesn't know what to do
either now it seems. He does think that I have IBS though. I take Zelnorm for that. I'm emailing you
because I'm very frustrated, trying to get on with my life and this problem is slowing me down a
lot. I'm scared to death that I'm going to bleed badly and not be so lucky the next time. You should
also note that my father and his father all had their nerves cut to the stomach as well. Highly
Selective something :) They had the exact same problem as me. Are you able to suggest anything or
help? I appreciate your time and will value any input.
 
Lisa wrote:
> Hi there. I live here in the Seattle area and I'm one of those patients that they can't seem to
> figure out. I've had 7 large ulcers in a year, one being a GI bleed. I'm only 29 years old and I'm
> a female. I bled so bad that my hematocrit was quite low. I've been hospitalized twice for these
> and I've had 9 endoscopies in the last year. The last scope was today. The following is a summary
> of my problem:
>
> It all started in December 2002, I had a small ulcer and was treated for it. It went away and
> after 3 months I stopped medication (Prevacid 60mg/day). Then in August of 2003 I went in with
> abdominal pain again and they did another scope (I had had 5 prior to this). They said that they
> wished they had a stomach like mine and that it looked great, they didn't do the test to check how
> much acid I was producing. Not even two weeks later I was admitted into the hospital for severe
> abdominal pain. They scoped me yet again and found 3 very large gastric ulcers. I was in the
> hospital for two weeks and even had a feeding tube that went to my intestines. For the next
> several weeks I was on Prevacid 60mg / day. I was rescoped at the end of November to check on the
> ulcers. There were no ulcers left but I did have Gastritis and tested positive for H Pylori this
> time. So I did the 2 antibiotic and Aciphex treatment. That was fine, I was satisfied. I was told
> to stay on the Previcid for life this time and so I stayed on it. About five weeks ago I fainted
> and I had abdominal pain. I was rushed to the ER and a rectal revealed that I was having a GI
> bleed. My hematocrit was 25 and fell. I stayed in the hospital for two days and this time my
> medications were majorly increased. Prevacid AND Aciphex. My GI doctor decided to send me to
> University of Washington Medical Center for another opinion since his hands were tied. Keep in
> mind that the GI from the original hospital put me on 100 (Yes 100) bottles of 2% Viscous
> Lidocaine. I like to use that but when I had another Gastritis attach, the ER doctor told me I
> could sieze from that.
>
> Nine days ago I went to UW for another opinion. This doctor told me to take even more acid
> reducers for nine days (Prevacid-60mg/day, Aciphex 3/day, Carafate, Zantac, Prilosec, Reglan
> (nausea)). So I did just that. Today he went in with the scope and the ulcer did heal. However, he
> told me he did some (PH? if I remember right?) and that I have a severe amount of acid in my
> stomach. He consulted the surgery team but no one will cut the nerves to my stomach electively. He
> doesn't know what to do either now it seems. He does think that I have IBS though. I take Zelnorm
> for that. I'm emailing you because I'm very frustrated, trying to get on with my life and this
> problem is slowing me down a lot. I'm scared to death that I'm going to bleed badly and not be so
> lucky the next time. You should also note that my father and his father all had their nerves cut
> to the stomach as well. Highly Selective something :) They had the exact same problem as me. Are
> you able to suggest anything or help? I appreciate your time and will value any input.

It is hard to give useful medical advice over Usenet. That said, a couple of comments:

1) The procedure your father and grandfather had was a "highly selective vagotomy". It is almost
never performed any more because medications like the ones you have been on have made it
unnecessary.

2) If you really had a very low stomach pH while on high doses of Prevacid, Aciphex, and Reglan,
this raises the likelihood of a condition called Zollinger-Ellison syndrome. That said, it seems
inconceivable that the specialists caring for you would not have considered that diagnosis, so
perhaps they have performed tests that they feel rules it out. You might want to ask them.

--
David Rind [email protected]
 
David Rind wrote:

> 2) If you really had a very low stomach pH while on high doses of Prevacid, Aciphex, and Reglan,
> this raises the likelihood of a condition called Zollinger-Ellison syndrome. That said, it
> seems inconceivable that the specialists caring for you would not have considered that
> diagnosis, so perhaps they have performed tests that they feel rules it out. You might want to
> ask them.

Which test would one start with? abdominal CT scan?
http://brighamrad.harvard.edu/Cases/jpnm/hcache/1056/full.html J
 
"J" <[email protected]> wrote in message
news:[email protected]...
> David Rind wrote:
>
> > 2) If you really had a very low stomach pH while on high doses of Prevacid, Aciphex, and Reglan,
> > this raises the likelihood of a condition called Zollinger-Ellison syndrome. That said, it
> > seems inconceivable that the specialists caring for you would not have considered that
> > diagnosis, so perhaps they have performed tests that they feel rules it out. You might want
> > to ask them.
>
> Which test would one start with? abdominal CT scan?
> http://brighamrad.harvard.edu/Cases/jpnm/hcache/1056/full.html J

Serum gastrin level would be a good place to start. CT scanning might be done as a means of trying
to find the gastrinoma if very, very high gastrin levels suggest that one is there.

Zollinger-Ellison syndrome is very rare.

HMc
 
Howard McCollister wrote:
> Serum gastrin level would be a good place to start. CT scanning might be done as a means of trying
> to find the gastrinoma if very, very high gastrin levels suggest that one is there.
>
> Zollinger-Ellison syndrome is very rare.

Agreed, but if the information in the original post was correct (very low gastric pH despite high
dose PPIs; recurrent ulcers on PPIs), then this is the sort of situation in which you are supposed
to look for it....

Also, worth keeping in mind that most patients with gastrinoma do not actually have the sky high
gastrin levels that are diagnostic, and so other hormonal studies are frequently needed to make the
diagnosis. (I realize you recognize this and only said that a serum gastrin level was a good place
to start.)

--
David Rind [email protected]
 
"David Rind" <[email protected]> wrote in message
news:[email protected]...
> Howard McCollister wrote:
> > Serum gastrin level would be a good place to start. CT scanning might be done as a means of
> > trying to find the gastrinoma if very, very high
gastrin
> > levels suggest that one is there.
> >
> > Zollinger-Ellison syndrome is very rare.
>
> Agreed, but if the information in the original post was correct (very low gastric pH despite high
> dose PPIs; recurrent ulcers on PPIs), then this is the sort of situation in which you are supposed
> to look for it....
>
> Also, worth keeping in mind that most patients with gastrinoma do not actually have the sky high
> gastrin levels that are diagnostic, and so other hormonal studies are frequently needed to make
> the diagnosis. (I realize you recognize this and only said that a serum gastrin level was a good
> place to start.)
>

Yup. I've looked for ZES on that basis (refractory ulcer disease) at least half a dozen times over
the years, each time wondering if that patient would be the Zolligner-Ellison Syndrome of my career.
Haven't found it yet.

HMc
 
I forgot to mention that my Gastrin levels have been tested and it's normal. I don't have Zolinger-
Ellison syndrome. I've also done a Urea Breath test to see if maybe I still have H Pylori since my
treatment and I don't have it. Definitely a confusing situation and the pain is just horrible.
Barium follow through (to colon) have revealed a lot of acid reflux. I had an ultrasound and that
was normal. My gallbladder is said to be remarkable. I've had CT's (last year though). They're
amazed how fast I can produce an ulcer. I wish I could find something remotely like my situation. I
looked online and all I found was a fish like me. Yes, I laughed. Any further info would be
appreciated.

"Howard McCollister" <[email protected]> wrote in message
news:<[email protected]>...
> "J" <[email protected]> wrote in message news:[email protected]...
> > David Rind wrote:
> >
> > > 2) If you really had a very low stomach pH while on high doses of Prevacid, Aciphex, and
> > > Reglan, this raises the likelihood of a condition called Zollinger-Ellison syndrome. That
> > > said, it seems inconceivable that the specialists caring for you would not have considered
> > > that diagnosis, so perhaps they have performed tests that they feel rules it out. You might
> > > want to ask them.
> >
> > Which test would one start with? abdominal CT scan?
> > http://brighamrad.harvard.edu/Cases/jpnm/hcache/1056/full.html J
>
>
> Serum gastrin level would be a good place to start. CT scanning might be done as a means of trying
> to find the gastrinoma if very, very high gastrin levels suggest that one is there.
>
> Zollinger-Ellison syndrome is very rare.
>
> HMc
 
Howard McCollister wrote:

> "J" <[email protected]> wrote in message news:[email protected]...
> > David Rind wrote:
> >
> > > 2) If you really had a very low stomach pH while on high doses of Prevacid, Aciphex, and
> > > Reglan, this raises the likelihood of a condition called Zollinger-Ellison syndrome. That
> > > said, it seems inconceivable that the specialists caring for you would not have considered
> > > that diagnosis, so perhaps they have performed tests that they feel rules it out. You might
> > > want to ask them.
> >
> > Which test would one start with? abdominal CT scan?
> > http://brighamrad.harvard.edu/Cases/jpnm/hcache/1056/full.html J
>
> Serum gastrin level would be a good place to start. CT scanning might be done as a means of trying
> to find the gastrinoma if very, very high gastrin levels suggest that one is there.
>
> Zollinger-Ellison syndrome is very rare.
>
> HMc

http://www.vh.org/adult/provider/familymedicine/FPHandbook/Chapter05/02-5.html Recurrent ulcers.
Patients with recurrent ulcers should have a full work-up, including endoscopy and serum gastrin
levels (to rule out Zollinger-Ellison syndrome). However, remember that proton pump inhibitors and
to a lesser degree H-2 blockers can increase serum gastrin levels. Consider also: Surgical consult
for vagotomy/antrectomy. Consider causes such as carcinoma. In the immunosuppressed, cytomegalovirus
should be considered a potential cause.

The role of lifestyle factors. To be successful at treating ulcer disease, it is important that the
patient be advised to avoid factors that predispose to ulceration, including alcohol, NSAIDS and
aspirin, and tobacco use

Zollinger-Ellison Syndrome (ZES). ZES is caused by hypersecretion of gastrin, from a gastrinoma. ZES
is responsible for 0.1% to 1% of all cases of peptic ulcer disease. Serum gastrin levels can be
elevated both in acid hypersecretory states (e.g., ZES), as well as in states of low acid secretion.
Gastrin levels can be elevated by gastric atrophy, stomach surgery, pernicious anemia with
achlorhydria, ZES, and proton pump inhibitor use. A normal gastrin level reliably rules out ZES. If
the serum gastrin level is elevated, the test should be repeated simultaneously with a gastric pH.
If the gastrin level remains high and the gastric pH is less than 2.5, there is a high likelihood
that the patient may have ZES and needs to be referred to an appropriate specialist for definitive
diagnosis and treatment. ZES is often associated with hyperparathyroidism and pituitary dysfunction
(Multiple Endocrine Neoplasia [MEN I]) at a rate of 20% to 25%. Appropriate tests to evaluate for
the presence of MEN I include serum calcium levels and serum PTH levels, as well as tests for
pituitary function. [] J
 
When I was younger I did have two blood tests turn up hyperthyroidism but I'm certain my thyroid is
fine now. However, I did have a Nuclear Medicine test and it was pointed out that I had a goiter. I
wouldn't think this would cause my stomach problems. I know I don't have ZES, I stopped taking
Ibuprofen after my first incident (I used to take a lot.) I don't take any form of aspirin now. I
didn't explore this carcinoma issue. What is that? How does that relate to my issue?

J <[email protected]> wrote in message news:<[email protected]>...
> Howard McCollister wrote:
>
> > "J" <[email protected]> wrote in message news:[email protected]...
> > > David Rind wrote:
> > >
> > > > 2) If you really had a very low stomach pH while on high doses of Prevacid, Aciphex, and
> > > > Reglan, this raises the likelihood of a condition called Zollinger-Ellison syndrome. That
> > > > said, it seems inconceivable that the specialists caring for you would not have
> > > > considered that diagnosis, so perhaps they have performed tests that they feel rules it
> > > > out. You might want to ask them.
> > >
> > > Which test would one start with? abdominal CT scan?
> > > http://brighamrad.harvard.edu/Cases/jpnm/hcache/1056/full.html J
> >
> > Serum gastrin level would be a good place to start. CT scanning might be done as a means of
> > trying to find the gastrinoma if very, very high gastrin levels suggest that one is there.
> >
> > Zollinger-Ellison syndrome is very rare.
> >
> > HMc
>
> http://www.vh.org/adult/provider/familymedicine/FPHandbook/Chapter05/02-5.html Recurrent ulcers.
> Patients with recurrent ulcers should have a full work-up, including endoscopy and serum gastrin
> levels (to rule out Zollinger-Ellison syndrome). However, remember that proton pump inhibitors and
> to a lesser degree H-2 blockers can increase serum gastrin levels. Consider also: Surgical consult
> for vagotomy/antrectomy. Consider causes such as carcinoma. In the immunosuppressed,
> cytomegalovirus should be considered a potential cause.
>
> The role of lifestyle factors. To be successful at treating ulcer disease, it is important that
> the patient be advised to avoid factors that predispose to ulceration, including alcohol, NSAIDS
> and aspirin, and tobacco use
>
> Zollinger-Ellison Syndrome (ZES). ZES is caused by hypersecretion of gastrin, from a gastrinoma.
> ZES is responsible for 0.1% to 1% of all cases of peptic ulcer disease. Serum gastrin levels can
> be elevated both in acid hypersecretory states (e.g., ZES), as well as in states of low acid
> secretion. Gastrin levels can be elevated by gastric atrophy, stomach surgery, pernicious anemia
> with achlorhydria, ZES, and proton pump inhibitor use. A normal gastrin level reliably rules out
> ZES. If the serum gastrin level is elevated, the test should be repeated simultaneously with a
> gastric pH. If the gastrin level remains high and the gastric pH is less than 2.5, there is a high
> likelihood that the patient may have ZES and needs to be referred to an appropriate specialist for
> definitive diagnosis and treatment. ZES is often associated with hyperparathyroidism and pituitary
> dysfunction (Multiple Endocrine Neoplasia [MEN I]) at a rate of 20% to 25%. Appropriate tests to
> evaluate for the presence of MEN I include serum calcium levels and serum PTH levels, as well as
> tests for pituitary function. [] J
 
Lisa wrote:

> I forgot to mention that my Gastrin levels have been tested and it's normal. I don't have Zolinger-
> Ellison syndrome. I've also done a Urea Breath test to see if maybe I still have H Pylori since my
> treatment and I don't have it. Definitely a confusing situation and the pain is just horrible.
> Barium follow through (to colon) have revealed a lot of acid reflux. I had an ultrasound and that
> was normal. My gallbladder is said to be remarkable.

remarkable or unremarkable? J

> I've had CT's (last year though). They're amazed how fast I can produce an ulcer. I wish I could
> find something remotely like my situation. I looked online and all I found was a fish like me.
> Yes, I laughed. Any further info would be appreciated.
 
unremarkable I believe. Sorry. :)

J <[email protected]> wrote in message news:<[email protected]>...
> Lisa wrote:
>
> > I forgot to mention that my Gastrin levels have been tested and it's normal. I don't have Zolinger-
> > Ellison syndrome. I've also done a Urea Breath test to see if maybe I still have H Pylori since
> > my treatment and I don't have it. Definitely a confusing situation and the pain is just
> > horrible. Barium follow through (to colon) have revealed a lot of acid reflux. I had an
> > ultrasound and that was normal. My gallbladder is said to be remarkable.
>
> remarkable or unremarkable? J
>
> > I've had CT's (last year though). They're amazed how fast I can produce an ulcer. I wish I could
> > find something remotely like my situation. I looked online and all I found was a fish like me.
> > Yes, I laughed. Any further info would be appreciated.
 
Lisa wrote:

> When I was younger I did have two blood tests turn up hyperthyroidism but I'm certain my thyroid
> is fine now. However, I did have a Nuclear Medicine test and it was pointed out that I had a
> goiter. I wouldn't think this would cause my stomach problems.

Hyperthyroidism can cause all the metabolic processes to be "speeded up". I would suspect more
stomach acid and certainly something that might be mistaken for IBS. Only a consult and various
tests by an endocrinologist (thyroid doctor) would say what your current thyroid state is. Some
goiters are left for a bit but (in my non-doctor opinion), given your situation, your thyroid should
have another look. J
 
I see my Gastroenterologist tomorrow. Maybe I'll explore that option since it's worth a try. I'm not
exactly underweight like I used to be at one time. I'm more like a little over my ideal weight. But
you're right, there could still be something wrong in my thyroid that I'm neglecting. I just always
understood that it was thoroughly checked (ten years ago approx) and that I don't have to worry
about that.

All I can say is I'm going to have one big a** party when this is figured out. :)

Thanks so much. Lisa

J <[email protected]> wrote in message news:<[email protected]>...
> Lisa wrote:
>
> > When I was younger I did have two blood tests turn up hyperthyroidism but I'm certain my thyroid
> > is fine now. However, I did have a Nuclear Medicine test and it was pointed out that I had a
> > goiter. I wouldn't think this would cause my stomach problems.
>
> Hyperthyroidism can cause all the metabolic processes to be "speeded up". I would suspect more
> stomach acid and certainly something that might be mistaken for IBS. Only a consult and various
> tests by an endocrinologist (thyroid doctor) would say what your current thyroid state is. Some
> goiters are left for a bit but (in my non-doctor opinion), given your situation, your thyroid
> should have another look. J
 
On 2004-03-01 06:38:31 -0500, J <[email protected]> said:

> Lisa wrote: Only a consult and various tests by an endocrinologist (thyroid doctor) would say what
> your current thyroid state is.

LOL. Once again, some people think they need a specialist for everything. PEOPLE...*any* doctor can
order a TSH (the most sensitive screening assay for thyroid disease). If you don't have a primary
care doctor (read my lips!) GET ONE. Let the specialists handle the things they're good at (and
belive me, no endocrinologist wants to waste his/her time ordering screening thyroid tests).
 
On 2004-02-29 18:04:46 -0500, [email protected] (Lisa) said:

> When I was younger I did have two blood tests turn up hyperthyroidism but I'm certain my thyroid
> is fine now.

Why are you so "certain"? ESP? See your doctor and get a TSH, for crying out loud.

> However, I did have a Nuclear Medicine test and it was pointed out that I had a goiter.

Um, OK...see above. (Talk about ignoring the obvious!)

> I wouldn't think this would cause my stomach problems.

Well, you haven't done much thinking so far, so I'm not surprised. Guess what: it can.

> I know I don't have ZES,

The same way you "know" your thyroid is OK? Do yourself a *huge* favor...go see your doctor.
 
anon wrote:

> On 2004-03-01 06:38:31 -0500, J <[email protected]> said:
>
> > Lisa wrote: Only a consult and various tests by an endocrinologist (thyroid doctor) would say
> > what your current thyroid state is.
>
> LOL. Once again, some people think they need a specialist for everything. PEOPLE...*any* doctor
> can order a TSH (the most sensitive screening assay for thyroid disease). If you don't have a
> primary care doctor (read my lips!) GET ONE. Let the specialists handle the things they're good at
> (and belive me, no endocrinologist wants to waste his/her time ordering screening thyroid tests).

Atually no I don't (think specialists are required for everything). 25 years ago, I presented with
clinical signs of Graves and a goitre and a nodule. Perhaps the nodule was why I was referred to an
endocrinologist. A scan and a needle biopsy were done.

Turns out with the full labwork, I had Hashimoto's Thyroiditis (not Graves) Neither you nor I are
there to feel her thyroid. Primary care doctors here don't get into feeling for nodules. They
monitor diagnosed thyroid conditions and renew medications. J
: Goiter - A swelling of the thyroid gland, possible symptom of hypo- or
hyperthyroidism. www.abbottdiagnostics.com/glossary/glossary_g.htm -
 
anon <[email protected]> wrote in message news:<2004030122271116807%anon@anoncom>...
> On 2004-02-29 18:04:46 -0500, [email protected] (Lisa) said:
>
> > When I was younger I did have two blood tests turn up hyperthyroidism but I'm certain my thyroid
> > is fine now.
>
> Why are you so "certain"? ESP? See your doctor and get a TSH, for crying out loud.
>
> > However, I did have a Nuclear Medicine test and it was pointed out that I had a goiter.
>
> Um, OK...see above. (Talk about ignoring the obvious!)
>
> > I wouldn't think this would cause my stomach problems.
>
> Well, you haven't done much thinking so far, so I'm not surprised. Guess what: it can.
>
> > I know I don't have ZES,
>
> The same way you "know" your thyroid is OK? Do yourself a *huge* favor...go see your doctor.

Hi All! I saw my GI doctor this morning and he gave me a few names of more surgeons who might do the
surgery on my stomach electively. So I called both and left messages for the doctor explaining my
situation. I also said I didn't want a consult unless they'd consider the surgery and talk to me
about it. Since I've been totally denied to date with surgeons. Well guess what? I found a surgeon!
He does the procedure electively. I see him Thursday morning. I'm also taking all advice to date and
getting appropriate bloodwork done by my family doctor. Thanks for all your patience and I'm
definitely going to be kicking around. :)

Lisa
 
On 2004-03-02 03:59:04 -0500, J <[email protected]> said:

> Primary care doctors here don't get into feeling for nodules. They monitor diagnosed thyroid
> conditions and renew medications.

Eh? BZZT! Thanks for playing. Once again, the conventional wisdom isn't.
 
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