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

[Guest guest]

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

>

>

>

[Guest guest]

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

>

>

>

[Guest guest]

,

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

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

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.

[Guest guest]

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

>

>

> ,

>

> 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]

Wow, Claire. Don't do that to yourself. That's level of disinterest in yourwellbeing is like medical malpractice in my book.Are there no other gastros in your area that take your insurance or whatever theissue is? They are pretty much deciding to be utterly oblivious to/disinterested in your ongoinghealth except the immediate procedure. Seems to me your system is probably weaker now then when you did it the firsttime because you haven't quite recovered yet. And you have to live in yourbody - so they can afford to be insouciant. ,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 Re: Abdominal pain -- was PART 2 ~....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.