Major setback

[Guest guest]

My second year of SCD has not been nearly as kind to me as the first :-(. For

the last couple of months, I've been having a lot of loud gurgling after I eat,

and bloating as well. I eliminated Welch's grape juice, but am now not sure that

was the culprit, as the gurgling and bloating returned a few days after I

stopped it.

Last Friday night was the worst. I went from very loud constant gurgling to

infrequent painful gurgles that lasted all night, and the next day. I had some

back pain too. For the hay of it, I started a quick prednisone burst (start at

40 and reduce quickly over the course of a week). For 2 days, I ate nothing but

yogurt/honey. The gurgles and bloating stopped. Then I added scrambled eggs and

cheese, and that was fine. Pomegranate juice gelatin was fine (although nasty

tasting), and then finally chicken soup was good too. When I ran out of the

pomegranate jello, I decided to give the Welch's jello a whirl again. It seemed

to go over fine, but it was just the equivalent of 1/4 cup of juice on each of

the last 3 days. Yesterday, I had 1/3 cup of acorn squash and a small amount of

my multivitamin (I've found that I'm really fatigued if I don't take it, so was

anxious to add it back). I was also really starting to get hungry yesterday (I

was very hungry when I went to bed), and thought I was well on my way to getting

better.

This morning, I added a tablespoon of almond butter to my yogurt. At lunch, I

started with 1/2 cup of acorn squash. An hour later, my back was starting to

hurt. Then the loud painful gurgles started up, only this time, the pain was

much worse in my back then gut. My gut pain is right in the middle, just barely

under the rib cage. The back pain is in roughly that spot as well. I was glad I

stopped the LDN when I did the prednisone burst (I'm down to 10 MG), because I

REALLY needed a pain pill. Sitting and standing make it worse, laying flat

provides some relief.

So it's now 7 o'clock. The gurgles are gone, but the back pain remains, and

there's a bit of a dull pain in the little spot under my ribs. I'm baffled about

what's going on. A major crohn's resurgence, or some other abdominal

malfunction? I haven't had back pain like this since before I started Humira

(haven't taken it since September). It was an awful 4 month period of constant

pain, and I had to lay flat on my back most of the time. I really don't want to

go through that again! And I'd really rather not have to go on immunosuppresants

again.

Any theories or ideas? TIA!

Holly

Crohn's

SCD 12/01/08

[Guest guest]

Any theories or ideas? TIA!I'm so sorry to hear this, Holly! I can't say I have any advice for you, really, I wanted to let you know I'll be sending good thoughts your way =) I also get a lot of tummy gurgling and some bloating, but no pain. One thing I just recently noticed is that if I fall asleep too soon after eating, I'm really bloated when I wake up. I guess my body decides to leave my food sitting there undigested when it goes to sleep or something. Who knows. Not sure if this helps at all (probably not), but I sure hope you figure something out soon! Peace =)Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 30 mg 1x per day

[Guest guest]

Thanks Alyssa, I'll take some good thoughts :-)

I forgot to mention something on my post as well. After about 3 days of very

limited intro, I developed an " ammonia " smell in my nose. It wasn't constant,

but every now and then I felt like I had just stuck my nose in an ammonia

bottle. It mostly went away yesterday. Could that be die off? I had the ammonia

smell once before, when I tried out s. boulardii last summer (I only took it a

couple times since the smell was a bit disturbing). I don't think I've ever seen

anyone mention having this as a symptom though.

Holly

>

> > Any theories or ideas? TIA!

>

>

> I'm so sorry to hear this, Holly! I can't say I have any advice for

> you, really, I wanted to let you know I'll be sending good thoughts

> your way =) I also get a lot of tummy gurgling and some bloating, but

> no pain. One thing I just recently noticed is that if I fall asleep

> too soon after eating, I'm really bloated when I wake up. I guess my

> body decides to leave my food sitting there undigested when it goes to

> sleep or something. Who knows. Not sure if this helps at all (probably

> not), but I sure hope you figure something out soon!

>

> Peace =)

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 50 mg 1x per day

> Prednisone 30 mg 1x per day

>

[Guest guest]

Holly,I am wondering if you might have a major systemic yeast issue that is just coming to light because the Humira has worn off. My logic is this, the humira and prednisone are both immune suppressants. They are known to allow yeast to overgrow. With the Humira wearing off, the yeast was dying I think because the immune system may have been trying to build and attack (especially with the LDN). The prednisone allowed (and fed through higher blood sugar levels that prednisone causes) the yeast to thrive. As you quickly tapered off the prednisone, again the yeast were dying, I think, and causing your symptoms. How long had you been on the LDN? I have suspected that my husband has a very big yeast issue, but he wasn't so convinced. He started LDN, but

didn't see much progress but also began having dry, itchy, flaky, eczema type skin around his eyes and scalp and a bit on his face and neck. He was doing s. boulardii at the same time. I told him I thought the s. boulardii might be causing the symptoms because the yeast was rebelling. Still he didn't believe. Then the skin would get a little better, then worse, he would occassionally take acidophilus tablets. Eventually, he stopped using the LDN all together and his skin got a lot better, to the point of almost being gone. He then started the acidophilus again and within a couple of days low and behold, the skin started getting worse again. He is pretty much convinced that he has a yeast issue, but of course is balking at what he will have to do to get it under control. ; )Something to think about. I am so sorry that you are having so much pain. You might consider dropping the almond

butter and multivitamin to see if that helps. If it does, then add back only one of the two to see what happens. I would also note if things deteriorate when you eat plain (no honey) yogurt.Hope you get relief soon,AmeliaTo: BTVC-SCD Sent: Sat, April 17, 2010 3:27:06 AMSubject: Major setback

My second year of SCD has not been nearly as kind to me as the first :-(. For the last couple of months, I've been having a lot of loud gurgling after I eat, and bloating as well. I eliminated Welch's grape juice, but am now not sure that was the culprit, as the gurgling and bloating returned a few days after I stopped it.

Last Friday night was the worst. I went from very loud constant gurgling to infrequent painful gurgles that lasted all night, and the next day. I had some back pain too. For the hay of it, I started a quick prednisone burst (start at 40 and reduce quickly over the course of a week). For 2 days, I ate nothing but yogurt/honey. The gurgles and bloating stopped. Then I added scrambled eggs and cheese, and that was fine. Pomegranate juice gelatin was fine (although nasty tasting), and then finally chicken soup was good too. When I ran out of the pomegranate jello, I decided to give the Welch's jello a whirl again. It seemed to go over fine, but it was just the equivalent of 1/4 cup of juice on each of the last 3 days. Yesterday, I had 1/3 cup of acorn squash and a small amount of my multivitamin (I've found that I'm really fatigued if I don't take it, so was anxious to add it back). I was also really starting to get hungry yesterday (I was very hungry when I

went to bed), and thought I was well on my way to getting better.

This morning, I added a tablespoon of almond butter to my yogurt. At lunch, I started with 1/2 cup of acorn squash. An hour later, my back was starting to hurt. Then the loud painful gurgles started up, only this time, the pain was much worse in my back then gut. My gut pain is right in the middle, just barely under the rib cage. The back pain is in roughly that spot as well. I was glad I stopped the LDN when I did the prednisone burst (I'm down to 10 MG), because I REALLY needed a pain pill. Sitting and standing make it worse, laying flat provides some relief.

So it's now 7 o'clock. The gurgles are gone, but the back pain remains, and there's a bit of a dull pain in the little spot under my ribs. I'm baffled about what's going on. A major crohn's resurgence, or some other abdominal malfunction? I haven't had back pain like this since before I started Humira (haven't taken it since September). It was an awful 4 month period of constant pain, and I had to lay flat on my back most of the time. I really don't want to go through that again! And I'd really rather not have to go on immunosuppresants again.

Any theories or ideas? TIA!

Holly

Crohn's

SCD 12/01/08

[Guest guest]

Hi Holly,

Sorry to hear about your " setback " . I emphasize this, because I actually think

it may be a good thing . . . here's why:

The ammonia smell/taste was key for me: About 6 months into SCD, I developed a

similar thing. I was also doing bikram yoga at the time (where you bacisally

sweat for 90 minutes in a 110F dry heat room). I sweated out ammonia like you

would not believe. My ND/MD doc told me at the time that ammonia is a byproduct

of detox - on a cellular level, as your body is processing things, ammonia is

released as toxins from the cells. And your body removes it thru sweat, pee or

poop (sorry about the terms!)

Take this symptom, and add it into the digestive pain, and back pain, tells me

that your liver could be congested, and that maybe you need to detox. I had the

exact same thing.

I completed IV antibiotics for lyme in January, and am now in the detox phase -

working with my doctor. This time it is intentional - last time it was a

coincidence.

I had a lot of liver congestion (the IV antibiotics contain mercury and other

metals) and am now detoxing. Periodically, when my body is ready to expel a

serious amnout of toxins, I get the cramps in my abdomen, and also the back

pain. This correlates apparrently to your liver breaking down the toxins, and

forcing them into your digestive tract. Didn't you also have surgery? Maybe you

are having some adhesion pain as well. Just a thought.

I'm afraid I cannot recommend anything for detox that is SCD compliant. I am

taking several herbal supplements and tinctures which are not SCD compliant, but

which work for me. These include bentonite clay, chlorophyll, NDF by BioRay, and

some other supplementation. I am doing quite well on them, but again, I do not

have crohns.

I use a lot of products from this company, not SCD compliant: check out their

website, because you may find some helpful info:

http://www.bioraynaturaldetox.com/where-do-i-start/liver-and-organ-support.aspx

I am also taking LDN for immune system, and that is helping me a lot.

Maybe others can shed some light for you on the detox process. My undestanding

of it is fairly limited - but the symptoms you describe are identical.

Feel free to email me specific ?'s off list:

kim@...

Feel better, & take good care!

Kim in NJ

20 months SCD for SBS from bowel resection, post lyme

Family of 4 SCD for 18 months - 2 kids ASD

> >

> > > Any theories or ideas? TIA!

> >

> >

> > I'm so sorry to hear this, Holly! I can't say I have any advice for

> > you, really, I wanted to let you know I'll be sending good thoughts

> > your way =) I also get a lot of tummy gurgling and some bloating, but

> > no pain. One thing I just recently noticed is that if I fall asleep

> > too soon after eating, I'm really bloated when I wake up. I guess my

> > body decides to leave my food sitting there undigested when it goes to

> > sleep or something. Who knows. Not sure if this helps at all (probably

> > not), but I sure hope you figure something out soon!

> >

> > Peace =)

> > Alyssa 16 yo

> > UC April 2008, dx Sept 2008

> > SCD June 2009 (restarted)

> > Azathioprine 50 mg 1x per day

> > Prednisone 30 mg 1x per day

> >

>

[Guest guest]

Holly

What

you describe are classic symptoms of gallbladder problems or problems in your

biliary tree – moderate to severe pain in the right upper quadrant, just

along the rib cage to the right of the stomach, with accompanying pain in the

back between the shoulder blades. There are a number of causes for

gallbladder problems, so you may wish to check in with your doctor and have

some tests run.

If

you are dealing with gallbladder problems, such as a gallstone or a blockage

lower down in the common bile duct, then you want to avoid foods high in fat

and fiber.

I

have had to learn a lot about the upper GI since my Sphincter of Oddi

dysfunction developed. I had major problems with my common bile duct and

gallbladder too, so I learned more than I wanted to about where the pain is

located, and the common points for referred pain. I had the same symptoms

as you describe, along with a few others because my problem turned out to be

below the gallbladder, in the Sphincter of Oddi.

There

can be serious repercussions with gallbladder blockages, so I wouldn’t

let the symptoms go on for too long before seeing your doctor. It may be

a temporary situation, and clear up on its own. But it also may be an

indicator of a problem that will need intervention of some kind.

Of

course if you have had your gallbladder removed, then you may still be dealing

with problems in your common bile duct and/or liver, which means more tests and

possibly needing an ERCP to identify and deal with the condition.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

>>>>>>>>>>>>>>>>>>>>>>>>.

An

hour later, my back was starting to hurt. Then the loud painful gurgles started

up, only this time, the pain was much worse in my back then gut. My gut pain is

right in the middle, just barely under the rib cage. The back pain is in

roughly that spot as well.

[Guest guest]

Amelia, I've been on LDN for 3.5 months. I kind of think my yeast is under

control. I used to get skin rashes, and suffered from eczema, but they have all

been healed since last summer. This last week I was super low carb and didn't

suffer any sugar cravings, which makes me think the yeasties are down to a

reasonable number.

Kim in NJ, my liver enzymes tested high last month, and I just had a crapload of

blood work done last week to try to find out why. An overtaxed liver could

definitely be part of my problem. I have some milk thistle, but haven't taken it

in the last week due to the setback. Glad to hear you're doing a lot better

though!

Kim M., I had my gallbladder out in 2003. I'm generally good with fat, however,

some deep fried squash chips gave me a gut ache a couple weeks ago. I was

already having issues, and I think the chips exacerbated them. I was doing some

more research today, and think the pancreas could also be at the root of this. I

even found some reference to major stomach gurgling and pancreas issues, not to

mention weird fluttering under the left rib cage (I get that now and again). The

question is, why is my liver (and potentially pancreas) so ticked off at me?

My back pain peaked last night, and is much better today. I've only eaten 1/2

cup of yogurt and 1/2 cup of jello, and boy am I starving! I'm going to lose all

my hard won weight I'm afraid :-(

Thank you all for your insights!

Holly

Crohn's

SCD 12/01/08