Re: Abdominal pain -- was PART 2 ~....

[Guest guest]

Claire

The tests I mentioned are usually given when you still have

symptoms yet none of the first standard tests showed any abnormalities –

and the symptoms are located more in the upper GI area rather than lower GI. So

these are things a good doctor will order depending on your symptoms and the

test results of those scans you’ve already had. I’m assuming

you have had plenty of blood work; any abnormalities in your liver or

pancreatic enzymes?

I managed to find a good gastroenterologist, but it took me

3 tries. There are good doctors, but you have to search for them. Takes

a lot of energy, but it is worth it when you find a good one who will listen

and work with you and answer questions.

I asked about lying on your side and stomach because that is

often an indicator of where a GI malfunction is located.

Kim M.

SCD 6 years

>>>>>>>>>>>>>>>>

Kim,

I had a hidrascan that involved lying on a table perfectly still for over an

hour while a computer filled in images of my bowel. I wasn't nauseated at all

but the position on my back was painful & I needed assistance to get up.

Ultrasounds of my gall bladder were done, too. I don't recognize the other

tests you mentioned below.

In the hospital I did not lay on my right side or back because it was too

painful. However, by the time they released me I was better. Now, I can lie on

my back, stomach and right/left side if it's not hurting from having solid

food. When returning to broth and soft foods for several days, I'm able to lie

down on my right side and back again. I still prefer my left side because when

I use my right side it feels sore in the morning. I tend to only use my right

side when my left side fatigues from one position.

Claire

[Guest guest]

Claire,

I have an idea for you. I'm pretty sure the prep I used (can't rememmber

which it was) was a prescription item (I can't imagine why - nobody in

their right mind would ever use such a thing voluntarily!). So why

not ask a pharmacist or two about the choices? I should think they

would know these things. They might even be able to suggest the

least worst for your situation.

> Thank you for responding. I've asked both gastro docs if there

is another prep I could use and both say no. They both use the Halflytely

prep that hurt me. It's so frustrating. > > To hear it took you a month to get over let's me know my

experience is not unusual. I have a friend with Crohn's for over 30 years

and she said the same thing about the prep I took. She's been through a

ton of gastro docs & doesn't have a high opinion of them.

> > Claire

[Guest guest]

Claire,

I have an idea for you. I'm pretty sure the prep I used (can't rememmber

which it was) was a prescription item (I can't imagine why - nobody in

their right mind would ever use such a thing voluntarily!). So why

not ask a pharmacist or two about the choices? I should think they

would know these things. They might even be able to suggest the

least worst for your situation.

> Thank you for responding. I've asked both gastro docs if there

is another prep I could use and both say no. They both use the Halflytely

prep that hurt me. It's so frustrating. > > To hear it took you a month to get over let's me know my

experience is not unusual. I have a friend with Crohn's for over 30 years

and she said the same thing about the prep I took. She's been through a

ton of gastro docs & doesn't have a high opinion of them.

> > Claire

[Guest guest]

Thank you all for your responses. I have much to consider now and appreciate all the suggestions and advice. I no longer feel alone in this situation and glad to have this group.

Claire

-----------------------------------

That's a bunch of bull! There are a few preps available, so there's no

reason for them to insist on one that made you sick. My last prep was

the easiest one I've had. I had to take 3 Dulcolax at around noon, and

then start drinking 64 ounces of Miralax at 3 pm.

Good luck! I hope you get some answers soon :-)

Holly

Crohn's

SCD 12/01/08

--------

Wow, Claire. Don't do that to yourself. That's level of disinterest in your

wellbeing is like medical malpractice in my book.

Are there no other gastros in your area that take your insurance or whatever the

issue is?

They are pretty much deciding to be utterly oblivious to/disinterested in your ongoing

health except the immediate procedure.

Seems to me your system is probably weaker now then when you did it the first

time because you haven't quite recovered yet. And you have to live in your

body - so they can afford to be insouciant.

--------------------

Claire,

I have one recommendation for your fibroids. Get some

natural progesterone cream. I prefer the Pro-Gest brand in the single

sachets, 48 to a box. I suggest this because fibroids grow in the

presence of high estrogen. If you don't have progesterone to turn on

the receptor site for the estrogen, it won't be used properly by the

body. If your body has been stressed for a while, any progesterone

that your body was making has most likely been taken and converted to

be used in the stress response (adrenaline)

, again it wouldn't

have been used to balance the estrogen. I know that this isn't what

you were specifically asking about, but once the fibroids grow large,

it does tilt the uterus and can add problems of it's own. The

progesterone should, if your adrenal (stress) function is good, stop

the fibroids from growing and most likely cause them to shrink.

A good read on the subject is 'Natural Progesterone - The multiple roles of a remarkable hormone' by Dr. R .Lee

Amelia

Husband UC 9 years, SCD 20 months

LDN 3 mg

-----------

Claire,

I have an idea for you. I'm pretty sure the prep I used (can't rememmber

which it was) was a prescription item (I can't imagine why - nobody in

their right mind would ever use such a thing voluntarily!

). So why

not ask a pharmacist or two about the choices? I should think they

would know these things. They might even be able to suggest the

least worst for your situation.

Claire, I am so sorry you are in such pain and so miserable. It's doubly

awful when they can't figure it out. I can't help you with your

basic problem but I do want to comment on colonoscopy prep. The one

they gave me two years ago (which I figured of the two choices would be

the least worst) was absolutely ghastly. I had heart attack

symptoms for four days, and I suppose I should have gone to ER but I had

read that nutrisweet (which was in one dose) could do that and anyhow at

the time i didn't much care if it killed me. It took me a month to get

over that stupid prep. I would recommend really doing your research

on the prep stuff. Be real annoying to the nurses if you must. They had

told me when I made the appointment there were lots of prep choices but

then they only offered me one. Next time, if I ever agree to a next time,

I will not agree to do it until they find me something decent even if

they have to order it from abroad. The gastros never do think

anything like this is a problem. As to not making you nauseated, ha

ha!

------------------

Claire

Well, we have a number of things in common. I have/had Polycystic

Ovarian Syndrome and Interstitial Cystitis, along with frequent

migraines and headaches. I was amazed at how well I felt a year after

my hysterectomy (not the digestive stuff, of course); I'd been living

with symptoms and a terrible drain on my energy and immune system for

years and didn't realize it...

Do you remember whether you had both a regular Hida scan and a Hida

with CCK? Do you recall getting more nausea from one or both of the

scans? The Hida with CCK tests your gallbladder action; the normal Hida

looks at your liver. When you have problems in this area these scans

will trigger more nausea and right upper quadrant pain. Did you have a

GES, gastric emptying study?

Is the pain, like a stabbing pain, feel centered where your gallbladder

is? That would be to the right of your stomach, just under the right

rib cage, about 6 to 8 inches above your waist. Or is the pain lower,

just under your stomach and under the lower edge of your ribs on the

right side, several inches above the waist? And is there a sense of

pressure with the stabbing pain, as if you're being squeezed in half

from both outside-in and inside-out?

When my Sphincter of Oddi has gone into a severe spasm, it does feel

like an ice pick going through to my back, along with the intense

squeezing pressure from both inside and outside at the same time.

Accompanied by back pain between my shoulder blades, and lots of

nausea. Other people that have Sphincter of Oddi dysfunction report

very similar feelings, so I think the pain and the referred pain from

this spasm is very similar for all of us.

Are you able to lie on your stomach? Able to lie on your right side? Able to lie on your left side?

I take Miralax every day. I have poor digestive motility as part of

having Sphincter of Oddi dysfunction, and need the Miralax daily. I

have never had any reactions to it, other than when I stop using it my

constipation becomes severe. But that's me.

I know it's had to find energy to meet other gastroenterologists and

ask questions. But it might prove helpful to get other opinions. Have

you had an MRCP? MRCP with secretin? Endoscopy to check your stomach?

Endoscopic ultrasound (looks at the pancreas)? Sphincter manometry done

via an ERCP? Debray scan? All of these are helpful in identifying upper

GI malfunctions.

I'd keep asking questions, seeing other opinions. You may find a

gastroenterologist who will listen and see test results that indicate

an issue or order other tests that haven't been considered.

Kim M.

-----------

Claire

Can you describe the abdominal pain in more detail? I have an upper GI

dysfunction (Sphincter of Oddi) which took some time to diagnose as it

isn't common - and I had to go to several gastroenterologists and take

lots of tests before I found my current doctor who is an expert on the

upper GI. Most of my test results were "within normal" although my

current doctor said that several showed indications of my issue if the

doctors had considered the uncommon causes...

I have certainly had to learn a lot of about right upper quadrant pain

and back pain and what the causes are.... The chronic pain I experience

as part of having Sphincter of Oddi dysfunction are always located in

the same places, and my upper GI symptoms always follow the same

routine after I eat.

I was on clear liquids for 6 months before I discovered SCD. Nausea was

severe, right upper quadrant pain was severe, as was the back pain

between my shoulder blades. Turned out that back pain was due to a

blocked common bile duct that didn't show up on any scans (wasn't a

stone or sludge). But every time I tried eating solid foods I was in

pain for days. Lost a lot of weight. Then I started fainting frequently

and developed lower left quadrant and pelvic pain and was given a

pelvic ultrasound that revealed I had a malignant ovarian cyst putting

pressure on my descending colon and vagus nerve, so in addition to

having an ERCP and sphincterotomy to fix the bile duct blockage and

"reset" my Sphincter of Oddi, two weeks later I was back in the

hospital for a complete hysterectomy. I was definitely very sick.

Until I switched over to SCD and stopped eating the starches and grains

I couldn't get my upper GI symptoms under good management. I am super

sensitive to fats, fiber and seasonings. I do well on SCD as long as I

stick to certain foods -- but it took me 3 years to get my upper GI

symptoms under good management and my gut ecology restored (I was also

given massive doses of antibiotics).

Sticking to SCD will help, regardless of whatever problems you are

dealing with. Just eat soft foods, more liquid than solid. And keep

asking questions, seek other doctor's opinions, especially in the

gastroenterology speciality. I've learned from painful experience that

these doctors don't consider the uncommon causes very often.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological deterioration 3+ years

-----------

I have no advice or words of wisdom for you, but I just wanted to

say I feel for you. We went through a long, painful medical process

with my son so I can relate to the frustration and misery you're going

thru. Hope you get some answers and some relief soon

...· ´¨¨)) -:¦:- Sending Cyber Hugs

¸.·´ .·´¨¨))

((¸¸.·´ ..·´ -:¦:-

-:¦:- ((¸¸.·´*

------------------

The first advice is get another gastro pronto. This one is clueless

and arrogant. You might have an obstruction - but I guess you won't know everything until you get the colonoscopy.

I'd try to get that moved up as soon as possible.

It might be making problems somewhere, but it is SCD legal.

You might try adding the soft boiled egg - or just the yolk to your bone broth.

The nutrition from the yolk is very bio-available. And it makes the broth

into a more satiating experience.

Are you able to drink diluted tomato juice?

Can you have oils or ghee/butter?

Mara

-----------------------------

[Guest guest]

Thank you all for your responses. I have much to consider now and appreciate all the suggestions and advice. I no longer feel alone in this situation and glad to have this group.

Claire

-----------------------------------

That's a bunch of bull! There are a few preps available, so there's no

reason for them to insist on one that made you sick. My last prep was

the easiest one I've had. I had to take 3 Dulcolax at around noon, and

then start drinking 64 ounces of Miralax at 3 pm.

Good luck! I hope you get some answers soon :-)

Holly

Crohn's

SCD 12/01/08

--------

Wow, Claire. Don't do that to yourself. That's level of disinterest in your

wellbeing is like medical malpractice in my book.

Are there no other gastros in your area that take your insurance or whatever the

issue is?

They are pretty much deciding to be utterly oblivious to/disinterested in your ongoing

health except the immediate procedure.

Seems to me your system is probably weaker now then when you did it the first

time because you haven't quite recovered yet. And you have to live in your

body - so they can afford to be insouciant.

--------------------

Claire,

I have one recommendation for your fibroids. Get some

natural progesterone cream. I prefer the Pro-Gest brand in the single

sachets, 48 to a box. I suggest this because fibroids grow in the

presence of high estrogen. If you don't have progesterone to turn on

the receptor site for the estrogen, it won't be used properly by the

body. If your body has been stressed for a while, any progesterone

that your body was making has most likely been taken and converted to

be used in the stress response (adrenaline)

, again it wouldn't

have been used to balance the estrogen. I know that this isn't what

you were specifically asking about, but once the fibroids grow large,

it does tilt the uterus and can add problems of it's own. The

progesterone should, if your adrenal (stress) function is good, stop

the fibroids from growing and most likely cause them to shrink.

A good read on the subject is 'Natural Progesterone - The multiple roles of a remarkable hormone' by Dr. R .Lee

Amelia

Husband UC 9 years, SCD 20 months

LDN 3 mg

-----------

Claire,

I have an idea for you. I'm pretty sure the prep I used (can't rememmber

which it was) was a prescription item (I can't imagine why - nobody in

their right mind would ever use such a thing voluntarily!

). So why

not ask a pharmacist or two about the choices? I should think they

would know these things. They might even be able to suggest the

least worst for your situation.

Claire, I am so sorry you are in such pain and so miserable. It's doubly

awful when they can't figure it out. I can't help you with your

basic problem but I do want to comment on colonoscopy prep. The one

they gave me two years ago (which I figured of the two choices would be

the least worst) was absolutely ghastly. I had heart attack

symptoms for four days, and I suppose I should have gone to ER but I had

read that nutrisweet (which was in one dose) could do that and anyhow at

the time i didn't much care if it killed me. It took me a month to get

over that stupid prep. I would recommend really doing your research

on the prep stuff. Be real annoying to the nurses if you must. They had

told me when I made the appointment there were lots of prep choices but

then they only offered me one. Next time, if I ever agree to a next time,

I will not agree to do it until they find me something decent even if

they have to order it from abroad. The gastros never do think

anything like this is a problem. As to not making you nauseated, ha

ha!

------------------

Claire

Well, we have a number of things in common. I have/had Polycystic

Ovarian Syndrome and Interstitial Cystitis, along with frequent

migraines and headaches. I was amazed at how well I felt a year after

my hysterectomy (not the digestive stuff, of course); I'd been living

with symptoms and a terrible drain on my energy and immune system for

years and didn't realize it...

Do you remember whether you had both a regular Hida scan and a Hida

with CCK? Do you recall getting more nausea from one or both of the

scans? The Hida with CCK tests your gallbladder action; the normal Hida

looks at your liver. When you have problems in this area these scans

will trigger more nausea and right upper quadrant pain. Did you have a

GES, gastric emptying study?

Is the pain, like a stabbing pain, feel centered where your gallbladder

is? That would be to the right of your stomach, just under the right

rib cage, about 6 to 8 inches above your waist. Or is the pain lower,

just under your stomach and under the lower edge of your ribs on the

right side, several inches above the waist? And is there a sense of

pressure with the stabbing pain, as if you're being squeezed in half

from both outside-in and inside-out?

When my Sphincter of Oddi has gone into a severe spasm, it does feel

like an ice pick going through to my back, along with the intense

squeezing pressure from both inside and outside at the same time.

Accompanied by back pain between my shoulder blades, and lots of

nausea. Other people that have Sphincter of Oddi dysfunction report

very similar feelings, so I think the pain and the referred pain from

this spasm is very similar for all of us.

Are you able to lie on your stomach? Able to lie on your right side? Able to lie on your left side?

I take Miralax every day. I have poor digestive motility as part of

having Sphincter of Oddi dysfunction, and need the Miralax daily. I

have never had any reactions to it, other than when I stop using it my

constipation becomes severe. But that's me.

I know it's had to find energy to meet other gastroenterologists and

ask questions. But it might prove helpful to get other opinions. Have

you had an MRCP? MRCP with secretin? Endoscopy to check your stomach?

Endoscopic ultrasound (looks at the pancreas)? Sphincter manometry done

via an ERCP? Debray scan? All of these are helpful in identifying upper

GI malfunctions.

I'd keep asking questions, seeing other opinions. You may find a

gastroenterologist who will listen and see test results that indicate

an issue or order other tests that haven't been considered.

Kim M.

-----------

Claire

Can you describe the abdominal pain in more detail? I have an upper GI

dysfunction (Sphincter of Oddi) which took some time to diagnose as it

isn't common - and I had to go to several gastroenterologists and take

lots of tests before I found my current doctor who is an expert on the

upper GI. Most of my test results were "within normal" although my

current doctor said that several showed indications of my issue if the

doctors had considered the uncommon causes...

I have certainly had to learn a lot of about right upper quadrant pain

and back pain and what the causes are.... The chronic pain I experience

as part of having Sphincter of Oddi dysfunction are always located in

the same places, and my upper GI symptoms always follow the same

routine after I eat.

I was on clear liquids for 6 months before I discovered SCD. Nausea was

severe, right upper quadrant pain was severe, as was the back pain

between my shoulder blades. Turned out that back pain was due to a

blocked common bile duct that didn't show up on any scans (wasn't a

stone or sludge). But every time I tried eating solid foods I was in

pain for days. Lost a lot of weight. Then I started fainting frequently

and developed lower left quadrant and pelvic pain and was given a

pelvic ultrasound that revealed I had a malignant ovarian cyst putting

pressure on my descending colon and vagus nerve, so in addition to

having an ERCP and sphincterotomy to fix the bile duct blockage and

"reset" my Sphincter of Oddi, two weeks later I was back in the

hospital for a complete hysterectomy. I was definitely very sick.

Until I switched over to SCD and stopped eating the starches and grains

I couldn't get my upper GI symptoms under good management. I am super

sensitive to fats, fiber and seasonings. I do well on SCD as long as I

stick to certain foods -- but it took me 3 years to get my upper GI

symptoms under good management and my gut ecology restored (I was also

given massive doses of antibiotics).

Sticking to SCD will help, regardless of whatever problems you are

dealing with. Just eat soft foods, more liquid than solid. And keep

asking questions, seek other doctor's opinions, especially in the

gastroenterology speciality. I've learned from painful experience that

these doctors don't consider the uncommon causes very often.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological deterioration 3+ years

-----------

I have no advice or words of wisdom for you, but I just wanted to

say I feel for you. We went through a long, painful medical process

with my son so I can relate to the frustration and misery you're going

thru. Hope you get some answers and some relief soon

...· ´¨¨)) -:¦:- Sending Cyber Hugs

¸.·´ .·´¨¨))

((¸¸.·´ ..·´ -:¦:-

-:¦:- ((¸¸.·´*

------------------

The first advice is get another gastro pronto. This one is clueless

and arrogant. You might have an obstruction - but I guess you won't know everything until you get the colonoscopy.

I'd try to get that moved up as soon as possible.

It might be making problems somewhere, but it is SCD legal.

You might try adding the soft boiled egg - or just the yolk to your bone broth.

The nutrition from the yolk is very bio-available. And it makes the broth

into a more satiating experience.

Are you able to drink diluted tomato juice?

Can you have oils or ghee/butter?

Mara

-----------------------------