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

February 21, 2010

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 ..Â· Â´Â¨Â¨)) -:Â¦:- Sending Cyber HugsÂ¸.Â·Â´ .Â·Â´Â¨Â¨))((Â¸Â¸.Â·Â´ ..Â·Â´ -:Â¦:--:Â¦:- ((Â¸Â¸.Â·Â´*

To: BTVC-SCD Sent: Sun, February 21, 2010 12:25:16 PMSubject: Re: Abdominal pain -- was PART 2 ~....

Kim,It started in the lower back. I thought I was in the early stages of passing a kidney stone. Next morning more pain and I assumed the stone was moving. I was limited in range of motion and went to the doc that day. She gave me Vicodin and Flagyl after CT scan showed nothing (she was concerned about appendix) She told me I'd be better by the next day. The next day the pain killers were not working and the pain was unbearable. I literally could not move without my husband lifting me out of bed. I could not bend over in the slightest or roll to the side. I began vomiting later that evening (now thinking it was the high doses of flagyl which nauseated me) and I could not eat. Finally, my hubby to me to the ER as we were at the end of the road not being able to keep medicine down and pain uncontrollable. ER put me on morphine, did CT scans and admitted me to

hospital.It seemed I did better with complete bowel rest in hospital, although that was discovered by accident (long story) even though they did not have bowel rest ordered for me. After leaving hospital (Sunday) I was better but not well but continued to improve & was on Cipro and Flagyl for 20 more days. I ate my first solid food the day before the beginning of the bowel prep (Wednesday) . It was a few pieces of stew meat and carrots. Thursday, bowel prep ripped through me and put me in the kind of pain I had before leaving the hospital. It was horrible. I lost so much ground. Basically I've been trying to get back to the place I was before the bowel prep. The gastro doc doesn't believe the bowel prep caused such pain, but he also doesn't believe they make you nauseated. That prep did both to me. I'm really growing weary of docs who don't listen. The pain feels like it's in my right flank. It

feels like it goes from front to back in a straight line as if you took a pencil and stuck it right through me from the front to the back. Sometimes it feels like a stabbing pain or needles sticking in me like a burning pain in my URQ flank. Sometimes I feel pain in my lower right area near the ovary. I felt pain in my lower left side the day after the bowel prep, but it only lasted 2 days.The pain feels like inflammation. I say that because I know how inflammation feels due to having interstitial cystitis. Inflammation has a unique feel to me. I've wondered if food in the gut is pressing on something outside of the gut as you mentioned, the ovaries. But the tests show my ovaries to be okay even though I have polystic ovaries and fibroid tumors in uterus. I'm menopausal and those issues haven't

affected me so it's not on my front burner to deal with. After looking at a map in the docs office, it seemed to me my pain in the LRQ was near the ileum, and I communicated that to my gastro doc. He said it was his concern, too, that I might have Crohns and ordered the upper GI/small bowel series. The tests showed normal as all the other tests they did in the hospital. We thought I might have some narrowing and that's why it hurts to eat. Also, I've been constipated & it takes awhile for the food to move through. The doctor has me taking Miralax 3 times a week and I'm wondering if that is aggravating the situation. btw: I've added soft boiled eggs to my diet to get protein.Thanks for listening and considering my issues.ClaireSCD 6 weeks

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

ClaireCan 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 yearsSphincter of Oddi dysfunction 6+ yearsneurological deterioration 3+ years>> > Thanks to everyone who responded to my question and clarified things for me. I'm really at a loss as to what's going on with me. I've not mentioned it before as it's such a long story, I didn't know how to go about

communicating it in a timely manner. But I need some help.> > In January I went to the ER with severe abdominal pain. I could not move or even turn over in bed. The ER admitted me to the hospita. l was put on IV antibiotics, Cipro and Flagyl, in addition to morphine etc...4 days later I was released without a clear diagnosis, but "diverticulitis" was put on the bill for insurance sake, even though I do not have any diverticuli and none of the doctors could agree on what was happening.> > My primary Functional Medicine doc put me on the SCD diet and told me to take Ultra Flora IB (has bifi). My gastro doc thinks SCD is baloney. I've done a small bowel series, upper Gi, hidrascan, ultrasound of gallbladder, liver, pancrease, etc.., CT scans with and without contrast, enema CT scans, etc... I'm scheduled for a colonoscopy in March. They wanted to wait on the colonsocopy to reduce the risk. I had taken a bowel prep a few days

after being released from the hospital and it tore me up and set me back so far I've been trying to get back to normal. The bowel prep was unsuccessful due to a serious of errors, but it made my pain come back in a huge way.> > I was released from hospital on clear liquids. I'm eating soft mushy foods now and have been since the first week in January but I can't seem to progress past that. I tried eating bits of solid food and chewing it to mush and still have pain n my right side. It hurts when I eat. I'm living on chicken broth with a few teaspoons of pureed chicken. I can eat baby food squash, and boiled broccolli until it's mush. I eat goat milk yogurt and jello. I seem to tolerate ripe avocado and canned pears in their own juice heated up in microwave and chewed to mush. That's my diet.> > My calcium level came back higher than normal and now they are scheduling me for a chest x-ray and mammogram on Monday and want to

move up my colonoscopy if there is a cancellation available.> > I've lost over 30 pounds in less than a month. I'm glad for the weight loss, but am weak from not enough nutrition. I guess I'm wondering if this sounds like a flare? I realize it could be cancer and a colonoscopy might help shed some light, but until then, any suggestions? Is it normal to hurt when eating solid food if you are in a bad flare? How long does it take to get pass something like this? I realize none of you are doctors and it's a guessing game, but I thought maybe I had the symptoms of a flare and could treat it as such until we discover more.> > Claire> SCD 6 weeks> > >

February 21, 2010

Kim,It started in the lower back. I thought I was in the early stages of passing a kidney stone. Next morning more pain and I assumed the stone was moving. I was limited in range of motion and went to the doc that day. She gave me Vicodin and Flagyl after CT scan showed nothing (she was concerned about appendix) She told me I'd be better by the next day. The next day the pain killers were not working and the pain was unbearable. I literally could not move without my husband lifting me out of bed. I could not bend over in the slightest or roll to the side. I began vomiting later that evening (now thinking it was the high doses of flagyl which nauseated me) and I could not eat. Finally, my hubby to me to the ER as we were at the end of the road not being able to keep medicine down and pain uncontrollable. ER put me on morphine, did CT scans and admitted me to hospital.It seemed I did better with complete bowel rest in hospital, although that was discovered by accident (long story) even though they did not have bowel rest ordered for me. After leaving hospital (Sunday) I was better but not well but continued to improve & was on Cipro and Flagyl for 20 more days. I ate my first solid food the day before the beginning of the bowel prep (Wednesday) . It was a few pieces of stew meat and carrots. Thursday, bowel prep ripped through me and put me in the kind of pain I had before leaving the hospital. It was horrible. I lost so much ground. Basically I've been trying to get back to the place I was before the bowel prep. The gastro doc doesn't believe the bowel prep caused such pain, but he also doesn't believe they make you nauseated. That prep did both to me. I'm really growing weary of docs who don't listen.The first advice is get another gastro pronto. This one is cluelessand arrogant. The pain feels like it's in my right flank. It feels like it goes from front to back in a straight line as if you took a pencil and stuck it right through me from the front to the back. Sometimes it feels like a stabbing pain or needles sticking in me like a burning pain in my URQ flank. Sometimes I feel pain in my lower right area near the ovary. I felt pain in my lower left side the day after the bowel prep, but it only lasted 2 days.The pain feels like inflammation. I say that because I know how inflammation feels due to having interstitial cystitis. Inflammation has a unique feel to me. I've wondered if food in the gut is pressing on something outside of the gut as you mentioned, the ovaries. But the tests show my ovaries to be okay even though I have polystic ovaries and fibroid tumors in uterus. I'm menopausal and those issues haven't affected me so it's not on my front burner to deal with. After looking at a map in the docs office, it seemed to me my pain in the LRQ was near the ileum, and I communicated that to my gastro doc. He said it was his concern, too, that I might have Crohns and ordered the upper GI/small bowel series. The tests showed normal as all the other tests they did in the hospital. We thought I might have some narrowing and that's why it hurts to eat. 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. Also, I've been constipated & it takes awhile for the food to move through. The doctor has me taking Miralax 3 times a week and I'm wondering if that is aggravating the situation. btw: I've added soft boiled eggs to my diet to get protein.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 brothinto a more satiating experience. Are you able to drink diluted tomato juice? Can you have oils or ghee/butter? Mara

February 21, 2010

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.

>

> Kim,

>

> It started in the lower back. I thought I was in the early stages of passing a

kidney stone. Next morning more pain and I assumed the stone was moving. I was

limited in range of motion and went to the doc that day. She gave me Vicodin and

Flagyl after CT scan showed nothing (she was concerned about appendix) She told

me I'd be better by the next day. The next day the pain killers were not

working and the pain was unbearable. I literally could not move without my

husband lifting me out of bed. I could not bend over in the slightest or roll to

the side. I began vomiting later that evening (now thinking it was the high

doses of flagyl which nauseated me) and I could not eat. Finally, my hubby to

me to the ER as we were at the end of the road not being able to keep medicine

down and pain uncontrollable. ER put me on morphine, did CT scans and admitted

me to hospital.

>

> It seemed I did better with complete bowel rest in hospital, although that was

discovered by accident (long story) even though they did not have bowel rest

ordered for me. After leaving hospital (Sunday) I was better but not well but

continued to improve & was on Cipro and Flagyl for 20 more days.

>

> I ate my first solid food the day before the beginning of the bowel prep

(Wednesday) . It was a few pieces of stew meat and carrots.

> Thursday, bowel prep ripped through me and put me in the kind of pain I had

before leaving the hospital. It was horrible. I lost so much ground. Basically

I've been trying to get back to the place I was before the bowel prep. The

gastro doc doesn't believe the bowel prep caused such pain, but he also doesn't

believe they make you nauseated. That prep did both to me. I'm really growing

weary of docs who don't listen.

>

> The pain feels like it's in my right flank. It feels like it goes from front

to back in a straight line as if you took a pencil and stuck it right through me

from the front to the back. Sometimes itfeels like a stabbing pain or needles

sticking in me like a burningpain in my URQ flank. Sometimes I feel pain in my

lower right area near the ovary. I feltpain in my lower left side the day after

the bowel prep, but it only lasted 2 days.The pain feelslike inflammation. I say

that because I know how inflammation feels dueto having interstitial cystitis.

Inflammation has a unique feel tome. I've wondered if food in the gut is

pressing on something outsideof the gut as you mentioned, the ovaries. But the

tests show my ovariesto be okay even though I have polystic ovaries and fibroid

tumors inuterus. I'm menopausal and those issues haven't affected me so it'snot

on my front burner to deal with.

>

> After looking at a map in the docs office, it seemed to me my pain in the LRQ

was near the ileum, and I communicated that to my gastro doc. He said it was

his concern, too, that I might have Crohns and ordered the upper GI/small bowel

series. The tests showed normal as all the other tests they did in the hospital.

We thought I might have some narrowing and that's why it hurts to eat. Also,

I've been constipated & it takes awhile for the food to move through.

>

> The doctor has me taking Miralax 3 times a week and I'm wondering if that is

aggravating the situation. btw: I've added soft boiled eggs to my diet to get

protein.

>

> Thanks for listening and considering my issues.

>

> Claire

> SCD 6 weeks

>

February 21, 2010

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

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

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.

>

> Kim,

>

> It started in the lower back. I thought I was in the early stages of passing a kidney stone. Next morning more pain and I assumed the stone was moving. I was limited in range of motion and went to the doc that day. She gave me Vicodin and Flagyl after CT scan showed nothing (she was concerned about appendix) She told me I'd be better by the next day. The next day the pain killers were not working and the pain was unbearable. I literally could not move without my husband lifting me out of bed. I could not bend over in the slightest or roll to the side. I began vomiting later that evening (now thinking it was the high doses of flagyl which nauseated me) and I could not eat. Finally, my hubby to me to the ER as we were at the end of the road not being able to keep medicine down and pain uncontrollable. ER put me on morphine, did CT scans and admitted me to hospital.

>

> It seemed I did better with complete bowel rest in hospital, although that was discovered by accident (long story) even though they did not have bowel rest ordered for me. After leaving hospital (Sunday) I was better but not well but continued to improve & was on Cipro and Flagyl for 20 more days.

>

> I ate my first solid food the day before the beginning of the bowel prep (Wednesday) . It was a few pieces of stew meat and carrots.

> Thursday, bowel prep ripped through me and put me in the kind of pain I had before leaving the hospital. It was horrible. I lost so much ground. Basically I've been trying to get back to the place I was before the bowel prep. The gastro doc doesn't believe the bowel prep caused such pain, but he also doesn't believe they make you nauseated. That prep did both to me. I'm really growing weary of docs who don't listen.

>

> The pain feels like it's in my right flank. It feels like it goes from front to back in a straight line as if you took a pencil and stuck it right through me from the front to the back. Sometimes itfeels like a stabbing pain or needles sticking in me like a burningpain in my URQ flank. Sometimes I feel pain in my lower right area near the ovary. I feltpain in my lower left side the day after the bowel prep, but it only lasted 2 days.The pain feelslike inflammation. I say that because I know how inflammation feels dueto having interstitial cystitis. Inflammation has a unique feel tome. I've wondered if food in the gut is pressing on something outsideof the gut as you mentioned, the ovaries. But the tests show my ovariesto be okay even though I have polystic ovaries and fibroid tumors inuterus. I'm menopausal and those issues haven't affected me so it'snot on my front burner to deal with.

>

> After looking at a map in the docs office, it seemed to me my pain in the LRQ was near the ileum, and I communicated that to my gastro doc. He said it was his concern, too, that I might have Crohns and ordered the upper GI/small bowel series. The tests showed normal as all the other tests they did in the hospital. We thought I might have some narrowing and that's why it hurts to eat. Also, I've been constipated & it takes awhile for the food to move through.

>

> The doctor has me taking Miralax 3 times a week and I'm wondering if that is aggravating the situation. btw: I've added soft boiled eggs to my diet to get protein.

>

> Thanks for listening and considering my issues.

>

> Claire

> SCD 6 weeks

>

February 21, 2010

Mara,

Thank you for replying. I'm unable to drink tomato juice because it irritates my bladder due to interstitial cystitis. I was told to stay off fats and butter so I've never tried either. I've been to 2 gastro docs and considered blowing this one off, but I don't want to get at the back of the line again and put off the colonoscopy. It's hard to get into a new doctor in this town without waiting months. I'm hoping for a cancellation soon. Is there really such a thing as a gastro doc who is not arrogant and actually listens? Are you pulling my leg?

Claire

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

On Feb 21, 2010, at 1:25 PM, GraceAcademyTX (AT) aol (DOT) com wrote:

Kim,

It started in the lower back. I thought I was in the early stages of passing a kidney stone. Next morning more pain and I assumed the stone was moving. I was limited in range of motion and went to the doc that day. She gave me Vicodin and Flagyl after CT scan showed nothing (she was concerned about appendix) She told me I'd be better by the next day. The next day the pain killers were not working and the p

ain was unbearable. I literally could not move without my husband lifting me out of bed. I could not bend over in the slightest or roll to the side. I began vomiting later that evening (now thinking it was the high doses of flagyl which nauseated me) and I could not eat. Finally, my hubby to me to the ER as we were at the end of the road not being able to keep medicine down and pain uncontrollable. ER put me on morphine, did CT scans and admitted me to hospital.

It seemed I did better with complete bowel rest in hospital, although that was discovered by accident (long story) even though they did not have bowel rest ordered for me. After leaving hospital (Sunday) I was better but not well but continued to improve & was on Cipro and Flagyl for 20 more days.

I ate my first solid food the day before the beginning of the bowel prep (Wednesday) . It was a few pieces of stew meat and carrots.

Th

ursday, bowel prep ripped through me and put me in the kind of pain I had before leaving the hospital. It was horrible. I lost so much ground. Basically I've been trying to get back to the place I was before the bowel prep. The gastro doc doesn't believe the bowel prep caused such pain, but he also doesn't believe they make you nauseated. That prep did both to me. I'm really growing weary of docs who don't listen.

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

and arrogant.

The pain feels like it's in my right flank. It feels like it goes from front to back in a straight line as if you took a pencil and stuck it right through me from the front to the back. Sometimes it feels like a stabbing pain or needles sticking in me like a burning pain in my URQ flank. Sometimes I feel pain in my lower right area near the ovary. I felt pain in my lower left side the day after the bowel prep, but it only lasted 2 days.The pain feels like inflammation. I say that because I know how inflammation feels due to having interstitial cystitis. Inflammation has a unique feel to me. I've wondered if food in the gut is pressing on something outside of the gut as you mentioned, the ovaries. But the tests show my ovaries to be ok

ay even though I have polystic ovaries and fibroid tumors in uterus. I'm menopausal and those issues haven't affected me so it's not on my front burner to deal with.

After looking at a map in the docs office, it seemed to me my pain in the LRQ was near the ileum, and I communicated that to my gastro doc. He said it was his concern, too, that I might have Crohns and ordered the upper GI/small bowel series. The tests showed normal as all the other tests they did in the hospital. We t

hought I might have some narrowing and that's why it hurts to eat.

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.

Also, I've been constipated & it takes awhile for the food to move through.

The doctor has me taking Miralax 3 times a week and I'm wondering if that is aggravating the situation. btw: I've added soft boiled eggs to my diet to get protein.

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

February 21, 2010

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!

Thursday, bowel prep ripped through me and put me in the kind of pain

I had before leaving the hospital. It was horrible. I lost so much

ground. Basically I've been trying to get back to the place I was before

the bowel prep. The gastro doc doesn't believe the bowel prep caused such

pain, but he also doesn't believe they make you nauseated. That prep did

both to me. I'm really growing weary of docs who don't listen.

February 22, 2010

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 .LeeAmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mgTo: BTVC-SCD Sent: Sun, February 21, 2010 6:25:16 PMSubject: Re: Abdominal pain -- was

PART 2 ~....

Kim,

It started in the lower back. I thought I was in the early stages of passing a kidney stone. Next morning more pain and I assumed the stone was moving. I was limited in range of motion and went to the doc that day. She gave me Vicodin and Flagyl after CT scan showed nothing (she was concerned about appendix) She told me I'd be better by the next day. The next day the pain killers were not working and the pain was unbearable. I literally could not move without my husband lifting me out of bed. I could not bend over in the slightest or roll to the side. I began vomiting later that evening (now thinking it was the high doses of flagyl which nauseated me) and I could not eat. Finally, my hubby to me to the ER as we were at the end of the road not being able to keep medicine down and pain uncontrollable. ER put me on morphine, did CT scans and admitted me to hospital.

It seemed I did better with complete bowel rest in hospital, although that was discovered by accident (long story) even though they did not have bowel rest ordered for me. After leaving hospital (Sunday) I was better but not well but continued to improve & was on Cipro and Flagyl for 20 more days.

I ate my first solid food the day before the beginning of the bowel prep (Wednesday) . It was a few pieces of stew meat and carrots.

Thursday, bowel prep ripped through me and put me in the kind of pain I had before leaving the hospital. It was horrible. I lost so much ground. Basically I've been trying to get back to the place I was before the bowel prep. The gastro doc doesn't believe the bowel prep caused such pain, but he also doesn't believe they make you nauseated. That prep did both to me. I'm really growing weary of docs who don't listen.

The pain feels like it's in my right flank. It feels like it goes from front to back in a straight line as if you took a pencil and stuck it right through me from the front to the back. Sometimes it

feels like a stabbing pain or needles sticking in me like a burning

pain in my URQ flank. Sometimes I feel pain in my lower right area near the ovary. I felt

pain in my lower left side the day after the bowel prep, but it only lasted 2 days.The pain feels

like inflammation. I say that because I know how inflammation feels due

to having interstitial cystitis. Inflammation has a unique feel to

me. I've wondered if food in the gut is pressing on something outside

of the gut as you mentioned, the ovaries. But the tests show my ovaries

to be okay even though I have polystic ovaries and fibroid tumors in

uterus. I'm menopausal and those issues haven't affected me so it's

not on my front burner to deal with.

After looking at a map in the docs office, it seemed to me my pain in the LRQ was near the ileum, and I communicated that to my gastro doc. He said it was his concern, too, that I might have Crohns and ordered the upper GI/small bowel series. The tests showed normal as all the other tests they did in the hospital. We thought I might have some narrowing and that's why it hurts to eat. Also, I've been constipated & it takes awhile for the food to move through.

The doctor has me taking Miralax 3 times a week and I'm wondering if that is aggravating the situation. btw: I've added soft boiled eggs to my diet to get protein.

Thanks for listening and considering my issues.

Claire

SCD 6 weeks

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

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

>

> Thanks to everyone who responded to my question and clarified things for me. I'm really at a loss as to what's going on with me. I've not mentioned it before as it's such a long story, I didn't know how to go about communicating it in a timely manner. But I need some help.

>

> In January I went to the ER with severe abdominal pain. I could not move or even turn over in bed. The ER admitted me to the hospita. l was put on IV antibiotics, Cipro and Flagyl, in addition to morphine etc...4 days later I was released without a clear diagnosis, but "diverticulitis" was put on the bill for insurance sake, even though I do not have any diverticuli and none of the doctors could agree on what was happening.

>

> My primary Functional Medicine doc put me on the SCD diet and told me to take Ultra Flora IB (has bifi). My gastro doc thinks SCD is baloney. I've done a small bowel series, upper Gi, hidrascan, ultrasound of gallbladder, liver, pancrease, etc.., CT scans with and without contrast, enema CT scans, etc... I'm scheduled for a colonoscopy in March. They wanted to wait on the colonsocopy to reduce the risk. I had taken a bowel prep a few days after being released from the hospital and it tore me up and set me back so far I've been trying to get back to normal. The bowel prep was unsuccessful due to a serious of errors, but it made my pain come back in a huge way.

>

> I was released from hospital on clear liquids. I'm eating soft mushy foods now and have been since the first week in January but I can't seem to progress past that. I tried eating bits of solid food and chewing it to mush and still have pain n my right side. It hurts when I eat. I'm living on chicken broth with a few teaspoons of pureed chicken. I can eat baby food squash, and boiled broccolli until it's mush. I eat goat milk yogurt and jello. I seem to tolerate ripe avocado and canned pears in their own juice heated up in microwave and chewed to mush. That's my diet.

>

> My calcium level came back higher than normal and now they are scheduling me for a chest x-ray and mammogram on Monday and want to move up my colonoscopy if there is a cancellation available.

>

> I've lost over 30 pounds in less than a month. I'm glad for the weight loss, but am weak from not enough nutrition. I guess I'm wondering if this sounds like a flare? I realize it could be cancer and a colonoscopy might help shed some light, but until then, any suggestions? Is it normal to hurt when eating solid food if you are in a bad flare? How long does it take to get pass something like this? I realize none of you are doctors and it's a guessing game, but I thought maybe I had the symptoms of a flare and could treat it as such until we discover more.

>

> Claire

> SCD 6 weeks

>

February 22, 2010

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

February 22, 2010

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

February 22, 2010

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