# Pain goes away when lying down.... anyone else?



## gazorpa

Four years now.

Chronic abdominal pain... diffuse, heavy, not relieved by any digestive process. I always have it. Always. Unless I lie down.

Five gastroenterologists, three urologists, various other -ologists... no diagnosis. One gastro went so far as to give me an IBS diagnosis, but I think he was just trying to get me out of his office.

Tried a variety of diets -- no change. Been prescribed a myriad of pills -- a variety of ADs and Linzess and Zelnorm and Xywhatsis.... no change. Right now I'm only taking Lactulose.

I do have constipation. The only thing that helps the constipation is Lactulose plus senna -- BUT IT DOESN'T HELP THE PAIN.

Two abdominal CT scans -- one in 2012 and one in 2014 -- both came back normal. Colonoscopy normal. Defecography normal.

But here's my defining symptom...

*The abdominal pain goes away when I lie down. *

When I tell this to the doctors, there is no response. No lightbulbs, no recognition, no acknowledgement. When I ask, "What does this MEAN?" I get (if I'm lucky) a shrug.

So here I am, throwing myself at the mercy of this forum... This is wrecking my life.

Does anyone else have this particular symptom?

Thanks for any input.


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## gazorpa

Oh and I should also add...

Abdominal distention. I am tall and thin and I have a belly that sticks out.

The pain is slightly better if I wear an abdominal belt -- a wide surgical belt/supporter. No doctor prescribed this, I just discovered that it does help a little.


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## annie7

so sorry you are having all this pain.

you said you've tried lots of meds so maybe you've already done this but have you tried any antispasmodics? often, if one doesn't work for you, another will. they are all slightly different. i get pain from colon spams--sometimes quite severe. this pain does no go away when i lie down, though. when it gets really bad, i take librax and that takes care of it.

sounds like the abdominal belt was a good idea. i'd been thinking of trying that, although when i get this bloated, anything tight across my belly just hurts all the more. so i wear very loose pants or loose dresses. . i also get pain from bloating and the distension it causes. this pain does not go away completely when i lie down but it is relieved somewhat and i think that's because when i lie down, the distention goes down a little bit--plus it's not pulling on my belly, if you know what i mean (hard to describe). and my muscles relax when i lie down, too.

i think the belt would help because it's providing sort of a counter-pressure and support.

...just my thoughts, for what it's worth. i do hope that somehow you can find some relief.


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## gazorpa

Annie, thanks so much for your reply.

I'm sorry that you have colonic spasms. That must be awful. Yes, I have tried Baclofen as an anti-spasmotic. No change, no difference. I haven't heard of librax; I will look it up. Anything!

You wrote: "i think that's because when i lie down, the distention goes down a little bit--plus it's not pulling on my belly, if you know what i mean (hard to describe). and my muscles relax when i lie down, too." Yes, that's just how it feels. It is SO hard to describe!

I happened upon the idea of a surgical belt after I noticed that the pain was a bit less if my pants were tight. I use a Gabrialla abdominal binder; simple, it fastens with velcro and you can make it as tight as you want it.

Thanks for your thoughts!


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## annie7

oh, you're more than welcome









thanks for the tip on the surgical belt. tight clothing bothers me when i'm really bloated like that but i might give it a go anyway. it's worth a try--thanks.


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## gazorpa

Nobody else? Nothing?

<<< ... tumbleweeds .... crickets ...>

Well, sometimes silence is information.

I don't think it's IBS.

I'm beginning to think it's some sort of abdominal prolapse. Something has come loose.

I stand up, I'm in pain. I lie down, I'm not.

Unfortunately, they only do CT scans for patients who are lying down. Is there such a thing as a stand-up CT scan?

It's a rhetorical question, folks, I'm not really expecting an answer.

Here is where I wander away again, into the medical wilderness....thanks for your hospitality.


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## flossy

I don't have much pain while sitting/standing, but I do feel better when I'm lying down.

Sorry about hardly any replies to your thread. This board moves slow most of the time. Chronic constipation (and all the side-effects of it) seems to be problems with tricky solutions, if any at all.


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## Nuffa

i feel best while i am exercising.


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## twonK

Aha! A kindred spirit. I must have missed this post initially. I just posted a similar topic: http://www.ibsgroup.org/forums/topic/237306-tight-belt-around-belly-helps/

In a nutshell if I lie face-down, the pain markedly subsides. Face-up is no good. This is a fairly recent progression for me and certainly was not the case for the majority of my suffering. I too would like to know if there's any meaning to it, anything that the docs could use.

Does face-up/face-down matter for you?


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## gazorpa

Hi, TwonK --

If I lie face down, it feels like I'm lying on half a basketball. Doesn't help. Feels awful.

It's only when I lie on my back does the pain subside.

Sorry, not the same.

But ain't it disgraceful that these VERY specific symptoms mean NOTHING to doctors?

ARGHGHHGHGGHGHG!


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## gazorpa

Thanks to anyone who is still reading this.

Endless Googling variations on the phrase "abdominal pain goes away when lying down", I have found something intriguing.

I keep falling over a disease/disorder called "Splanchnoptosis." Abdominal pain that goes away when the patient lies down. Pain can also be relieved by the wearing of a support girdle.

Now here's the baffling part. Every reference to "Splanchnoptosis" is from prior to 1920. Nothing after that... except for a recent study from India called "Splanchnoptosis -- an Obsolete Diagnosis?" But this study is not available in English.

Anyhow. It seems that this mysterious disease is some kind of prolapse of the abdominal organs. Which ones? I cannot tell.

One repeating phrase: The patient must be examined standing up or else the problem will not be evident.

And of course they blame corsets.


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## annie7

thanks for posting this---it's really interesting. and puzzling--like you said--which abdominal organs? although i imagine a prolapse could involve any of them..more than one...don't know, just a guess. and i wonder, if it's an obsolete diagnosis, what the new dx is that replaces it. wish that study was available in english.

and yes--really--all those doctors you've seen should have examined you while standing up.

sounds like your idea of the support girdle was dead on right.


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## twonK

gazorpa said:


> Hi, TwonK --
> 
> If I lie face down, it feels like I'm lying on half a basketball. Doesn't help. Feels awful.
> 
> It's only when I lie on my back does the pain subside.
> 
> Sorry, not the same.
> 
> But ain't it disgraceful that these VERY specific symptoms mean NOTHING to doctors?
> 
> ARGHGHHGHGGHGHG!


well YMMV as they say.

It would be disgraceful if these symptoms turned out to be really meaningful but I suspect that it won't TBH.


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## twonK

gazorpa said:


> Thanks to anyone who is still reading this.
> 
> Endless Googling variations on the phrase "abdominal pain goes away when lying down", I have found something intriguing.
> 
> I keep falling over a disease/disorder called "Splanchnoptosis." Abdominal pain that goes away when the patient lies down. Pain can also be relieved by the wearing of a support girdle.
> 
> Now here's the baffling part. Every reference to "Splanchnoptosis" is from prior to 1920. Nothing after that... except for a recent study from India called "Splanchnoptosis -- an Obsolete Diagnosis?" But this study is not available in English.
> 
> Anyhow. It seems that this mysterious disease is some kind of prolapse of the abdominal organs. Which ones? I cannot tell.
> 
> One repeating phrase: The patient must be examined standing up or else the problem will not be evident.
> 
> And of course they blame corsets.


Nice find! I found that Splanchnoptosis is the same as Visceroptosis which is the more current name for it: "...is a prolapse or a sinking of the abdominal viscera (internal organs) below their natural position. Any or all of the organs may be displaced downward."

Interestingly some years ago I had an operation called a Pyloplasty - "the surgical reconstruction or revision of the renal pelvis to drain and decompress the kidney". I recall the surgeon described it as "moving and rebuilding" my kidney. Hmm.

Anyway, here's how I match up for the symptoms (any or all of which may or may not be present) :


loss of appetite, - Yes
heartburn, - Yes
nervous indigestion, - Yes
constipation, or diarrhea, - Yes
abdominal distention, - Yes
headache, - No
vertigo, - No
emaciation, - Yes
and loss of sleep. - Yes

Hmm.

Also, from http://users.chariot.net.au/~posture/Visceroptosis.html, "In 1837-41 French writer P.F. Rayer observed that a movable kidney was commoner for the right kidney and commoner in men, and was associated with general visceroptosis and hypochondriacal symptoms which could be relieved by supporting the kidney with a suitable belt."

- and guess what? My Pyeloplasty op was for hydronephrosis of my right kidney. Blimey.


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## Mystika

I never reply on these boards but I could have written this myself. I'm in agony all the time but if I lie down the pain goes down a lot. If I'm in extreme pain it helps, if I'm in moderate lain it take it away completely.
After I ovulate I have intense pressure and pain for about 10 days. I'm living in hell! 
I use a belly binder (the belly bandit) and it helps get me through the days but I still struggle tremendously.


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## twonK

Yes, for me sometimes it really helps and sometimes not at all. Makes me think I have multiple things going on.


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## Jenny Dillman Marks

This is my first post to this website. I have been diagnosed with IBS. My primary symptom is abdominal pain. Laying down almost always helps it. I lay on my left side and within 10 to 20 minutes there is marked improvement.

While laying down, it helps if I shift my attention to something else, usually I either read a story or check Facebook. I imagine this is helpful because I am not focusing on the pain, which generates anxiety and stress...

The other thing that helps is heat. I have one of those long bean-bag types that I put in microwave to heat. I wrap it in a scarf and tie it around my waist with the heat against my back. It can sometimes make the pain go away completely. It also seems to help if I drink something hot at the same time.

This started 5 or 6 years ago, but it was only one day every couple months back then. It has gradually worsened so that now it is every single day (interestingly almost never in the evening...) since January. It is sporadic throughout the day, thank the gods, but not knowing when the pain will happen is awful. Will I be with a client and have to pretend I'm just fine, pretending that I'm listening and supporting, when what I really want to do is kick them out and lay down on the couch myself...?

I've had the colonoscopy- normal. I've changed my diet, with no change. I'm diabetic, so diet is already a challenge. I am seeing a homeopath, and hopeful he will help me...

Just wanted to let you know that I also experience relief upon laying down.


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## HOMER15

I also experience relief when lying down. Sitting for long periods and walking around exacerbates the pain. My pain originally began as a hunger, gnawing pain only late in the evenings. It then grew to a more constant pain. Upon awakening there is not much pain but as the day progresses, so does the abdominal pain. It is a burning feeling across the entire front mostly under the belly button.


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## twonK

well my experiences aren't exactly like yours (e.g. heat doesn't help me at all and mine is not a burning feeling) but it's good to hear from other people in a similar boat. I've got some infrequently-performed tests coming up so if they find anything I'll be sure to post here. Good luck everyone.


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## Nuffa

Without having read all your posts i just wanted to add that i noticed to days ago that my pain becomes way worse when i lie down.


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## newhor1zons2

Hello,

I have almost exactly the same issues as you have. I am, unfortunately, overweight and when I don't feel actual pain, I feel my abdominal muscles stretching and ultimately tightening. I saw a reference to "Physical Therapy for constipation" somewhere and I am wondering if this may help in the same way that the girdle does.


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## Georg Soerensen

I had similar problem. Pain in lower abdomen (left side), occasional blood in the urine, pain goes away when lying down. Had ultrasound and x-ray but no joy. Was diagonsed earlier with 2 Kidney stones in right kidney (apparently nothing in left side) which I had passed prior to the 'long term' pain in the left that began later. I probably should note I had occasional pain in the abdomen before, but it was always short lived. More recently, that pain did not go away. After 5 months of seeing regular GP doctor and hoping time would help - I had to demand to see a urologist. Well, after a CT-scan, doctor (urologist specialist) found 2 kidney stones (10 and 12mm) on left side that did not show up with regular x-ray techniques (and in fact where still difficult to see with CT-scan). Doctor suspects uric acid kidney stones and concluded that the smaller (10mm) stone was moving around in the left side and at some point moved to a position where standing would place the stone in a position to cause pain and lying down allowed it to move out of position.

Going in for a ureathascope procedure in a months time (I was told I will need at least 2 such procedures) where they blast the stones with a laser to break them up and place a temporary stint in the kidney-bladder passage.


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## twonK

Georg Soerensen said:


> I had similar problem. Pain in lower abdomen (left side), occasional blood in the urine, pain goes away when lying down. Had ultrasound and x-ray but no joy. Was diagonsed earlier with 2 Kidney stones in right kidney (apparently nothing in left side) which I had passed prior to the 'long term' pain in the left that began later. I probably should note I had occasional pain in the abdomen before, but it was always short lived. More recently, that pain did not go away. After 5 months of seeing regular GP doctor and hoping time would help - I had to demand to see a urologist. Well, after a CT-scan, doctor (urologist specialist) found 2 kidney stones (10 and 12mm) on left side that did not show up with regular x-ray techniques (and in fact where still difficult to see with CT-scan). Doctor suspects uric acid kidney stones and concluded that the smaller (10mm) stone was moving around in the left side and at some point moved to a position where standing would place the stone in a position to cause pain and lying down allowed it to move out of position.
> 
> Going in for a ureathascope procedure in a months time (I was told I will need at least 2 such procedures) where they blast the stones with a laser to break them up and place a temporary stint in the kidney-bladder passage.


that's interesting. I had a pyeloplasty for hydronephrosis (of the kidney) many years ago. A few weeks ago I was getting a CT scan of my gallbladder to check for stones and they noticed that my right kidney (the operated-upon one) was enlarged 10% or so and in fact recently its been hurting. I don't think it's related to the gut pain though, it has a very different quality, intensity and time frame.

I've had several abdominal CT scans now so hopefully there's nothing they've missed. Although that wouldn't be the first time I've been misdiagnosed for years...


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## bellaroma

I've been suffering from IBS-C for over 10 years and my symptoms are always relieved by laying down. IWhen I have an "episode" I feel like I have spasms in my intestines and the pain is almost unbearable. It affects my stomach and even my back and hips and I double over with pain if Im standing. I can barely walk and sitting is awful. The pain subsides within minutes of lying down, but unfortunately returns when I get up. Its terrible.


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## Georg Soerensen

twonK said:


> that's interesting. I had a pyeloplasty for hydronephrosis (of the kidney) many years ago. A few weeks ago I was getting a CT scan of my gallbladder to check for stones and they noticed that my right kidney (the operated-upon one) was enlarged 10% or so and in fact recently its been hurting. I don't think it's related to the gut pain though, it has a very different quality, intensity and time frame.
> 
> I've had several abdominal CT scans now so hopefully there's nothing they've missed. Although that wouldn't be the first time I've been misdiagnosed for years...


My pain was probably a little lower than yours, not really a gut pain but just at the bottom of where your 'belly fat' begins (top of the bladder?). I also noticed that 'gas' in my intestines increased the pain which did subside when I passed the gas. I also have a cyst in my left kidney which may have made 'observing' the stones more difficult. I didn't mention before that the CT scan was an intravenous pyelogram (IVP) - bit different then the typical scan, CT KUB (CT urogram) generally used when looking at the bladder or urinary tract.


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## Georg Soerensen

Georg Soerensen said:


> My pain was probably a little lower than yours, not really a gut pain but just at the bottom of where your 'belly fat' begins (top of the bladder?). I also noticed that 'gas' in my intestines increased the pain which did subside when I passed the gas. I also have a cyst in my left kidney which may have made 'observing' the stones more difficult. I didn't mention before that the CT scan was an intravenous pyelogram (IVP) - bit different then the typical scan, CT KUB (CT urogram) generally used when looking at the bladder or urinary tract.


Update: I have had the urethra-scope laser surgery to remove the 2 uric acid stones.(5 weeks ago) and a stint was put in. Stint was removed 1 week ago. Pain has disappeared and there is no longer any blood in my urine.

It seems fairly conclusive that my problem has been solved and was directly caused by 2 large Uric acid stones in my kidney.


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## Isabelle McDade

This is exactly what I have. It get a crazy distended stomach almost like I'm pregnant when I'm actually pretty skinny and small. It hurts to touch and suck in. When i lay on my back or sometimes my stomach I get some relief. When i have a flare up I get extremely gassy and let out gas every 3 to 4 minutes over and over. I feel constipated and like I can't empty my stomach. Anyone have anything effective that helps?


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## flossy

Isabelle McDade said:


> This is exactly what I have. It get a crazy distended stomach almost like I'm pregnant when I'm actually pretty skinny and small. It hurts to touch and suck in. When i lay on my back or sometimes my stomach I get some relief. When i have a flare up I get extremely gassy and let out gas every 3 to 4 minutes over and over. I feel constipated and like I can't empty my stomach. Anyone have anything effective that helps?


Yep!

Click on below link to read:

http://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/


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## twonK

Georg Soerensen said:


> Update: I have had the urethra-scope laser surgery to remove the 2 uric acid stones.(5 weeks ago) and a stint was put in. Stint was removed 1 week ago. Pain has disappeared and there is no longer any blood in my urine.
> 
> It seems fairly conclusive that my problem has been solved and was directly caused by 2 large Uric acid stones in my kidney.


wow Georg that's great news, you must be over the moon?


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## twonK

so I have an update on this topic that might be of help. Out of sheer desperation I started wearing an abdominal binder (a medical girdle really) 24x7. For the next week my pain was reduced 80%. W T F. Since then the pain has returned intermittently which is very depressing but overall I'm still much better when wearing this binder all the time. Note that I found out about binders a while back but only wore them sporadically.

My GI has no idea and seemingly no inclination of trying to find out why this might be.

However, it might be worth you other sufferers out there giving it a go. They're ~ $20 online from amazon etc.


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## Ouchie81

My pain is better when I lay down too. It's gravity pulling something down that should be pulled down, that's my theory anyway


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## Michael Cushing

My Hemorrhoids seem to only stop hurting and pulling on me when I'm lying down flat on my back. It's the only way right now where I don't feel like I need to take an Urgent Dump 24/7. I can't wait to get these treated.


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## Minion12

You sound like me! I was diagnosed with IBS-C and one of the worst symptoms I have is nausea! I get it so bad with stomach pain that I too have to lay down for it to stop! So I get frustrated because when I am at work I always get sick feeling and can't lay down! I am on Linzess and it definitely works to let me go to the restroom however I am embarrassed because I am glued to the toilet when I take it and also the linzess doesn't help me with my nausea! I have gone to the doctor with annoyance because I keep feeling nausea and all they tell me is sorry it's IBS there is no cure and I have to deal with it


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## linsalt

I came across this topic when trying to research my symptoms. I really appreciate when other people report their symptoms and what does/doesn't help, so I thought I'd do the same.

I'm going to give a brief history including the things I think are related, leading up to the pain I've been experiencing that's so similar to other people in this thread.

After childbirth, my abdominal area has never been the same. I became sensitive to pressure on my abdomen, and I felt like my organs were not where they used to be. I discovered that lying face down on my stomach (reading a book, for example) would feel fine, but when I tried to move and get up, I had incapacitating back pain. The back pain would go away after a while, but it was very intense while it lasted. With regular abdominal exercises, I stopped having that problem. I could lie down without then having back pain. I *think* that I had abdominal muscle separation after childbirth that never went away (with most women, the muscles go back together after the baby is born). I have to regularly exercise my abdominal muscles to support my spine. If I stop exercising my abdominal muscles, my back problems start to come back.

My recent problem that is like yours started after I had an allergic contact dermatitis reaction to a hair product. I got a rash and inflamed lymph nodes, and my doc prescribed methylprednisolone. After I stopped taking the medication, I started having abdominal pain. I think the meds may have triggered this issue for me, and that the issue is related to my prior abdominal changes/problems.

The pain started in the morning and evenings. I'm now having it every day, all day to varying degrees. It's a gnawing/burning pain (not stabbing). Sometimes it's very intense, and I can't do anything but lie down. Sometimes it's diffuse and just unpleasant. I have some gas, but not a lot. I also have some constipation, but not complete. I used to be very regular. The pain sometimes radiates to my back: the middle or upper back.

If I press on the spot between my rib cage above my belly button, I feel discomfort. The gnawing pain is worst, though, in what feels like the middle of my stomach where my belly button is.

I discovered that the pain is worst when I'm standing. Sitting is sometimes okay, but the pain actually goes away if I'm lying down. Lying on my left side helps the most. I'm also helped by lying on my back or stomach. I discovered that pressure on my abdomen makes me feel better. That surprised me, because normally I don't like any pressure on my abdomen. I may look into that girdle that the original poster mentioned.

On another forum, I also came across people who had these symptoms. Many of them had extensive testing, but still didn't know the cause. A couple of them were diagnosed with twisted colons. I don't know if that's what I have.

I don't feel like exercising at all, but I'm going to try to force myself to and see if it helps. I'm also going to try drinking some kefir and taking vitamin C. I'll give an update later.


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## midwesterner

twonK - I have been through multiple CT's, ultrasounds, HIDA scan, Celiac testing and nothing has been found. I, too, feel better when lying down! And only when lying down, otherwise, my upper abdominal pain is ever present, some times worse than others. My pain is a heaviness, and a searing pain right below my rib cage and across my entire upper abdomen. I find if I put a cold pack, or even just my cold hand on that area, it feels better. I have not tried the belt. I was at the doctor again today, another scan ordered. I suggested to my doctor that maybe it is celiac or mesenteric artery ischemia, or celiac compression syndrome. He doesn't think I'm "old" enough for those diseases (mid 50's), but I have acquired heart disease and 5 coronary stents - I obviously have ischemia! I am normal weight, non-smoker, good blood pressure, low cholesterol numbers, so my lifestyle does not point to any of the obvious culprits. I am very frustrated as I have been chasing a diagnosis for this pain going on 5 years. Although no answers have been shared on this forum, I feel less "isolated" knowing that I am not the only one with these symptoms.


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## rewinj

Posting here because this is me as well. Laying on my stomach is the only relief I can get right now, I've been rather confused, and this is a very interesting thread. I will post more soon.


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## nampal

I just came across this thread.I have similar condition and I am tall and have stomach distension. I suffer from pain at the lower left abdomen when walking,travelling and in some case, standing. When Iie down the pain subsides. If I lie on my right side I get relief fast. I went to Gastroenterologist and a former Professor of surgery.Both of them have never heard of such a condition!. Gastroenterologist said it could be due to IBS and it's triggered by fructose intolerance.

After so many months of self study now I believe the Gastroenterologist could be right to a certain extent. Because the pain is more or returns when I eat food rich in fructose such as certain fruits and vegetables and It occurs in the days of constipation. Combining this two conditions I reached the conclusion that the gas produced by fructose malabsorption stuck in between hard faeces push the walls of colons and produce this pain. I suffer from kidney stones as well. But no stone was found in the urethra. May be the distended colon pushes the uretra and the (hidden) stone stuck in it. I am not sure but this is my theory.

I believe constipation with lots of gas create this condition. Whatever the case the pain is unbearable and it's a restrictive condition.


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## twonK

nampal said:


> I just came across this thread.I have similar condition and I am tall and have stomach distension. I suffer from pain at the lower left abdomen when walking,travelling and in some case, standing. When Iie down the pain subsides. If I lie on my right side I get relief fast. I went to Gastroenterologist and a former Professor of surgery.Both of them have never heard of such a condition!. Gastroenterologist said it could be due to IBS and it's triggered by fructose intolerance.
> 
> After so many months of self study now I believe the Gastroenterologist could be right to a certain extent. Because the pain is more or returns when I eat food rich in fructose such as certain fruits and vegetables and It occurs in the days of constipation. Combining this two conditions I reached the conclusion that the gas produced by fructose malabsorption stuck in between hard faeces push the walls of colons and produce this pain. I suffer from kidney stones as well. But no stone was found in the urethra. May be the distended colon pushes the uretra and the (hidden) stone stuck in it. I am not sure but this is my theory.
> 
> I believe constipation with lots of gas create this condition. Whatever the case the pain is unbearable and it's a restrictive condition.


wow, I could have written that. I've been telling my docs that C with resultant gas is pushing on something (I'll come back to that in a minute) sore, thus causing more pain than "typical" IBS pain.

Recently my kidney has been hurting and it turns out that the hydronephrosis I had 20 years ago has returned. It's possible that a portion of the pain I've been experiencing all these years is from that! It sounds like you could have a very similar situation going on. You definitely should try the full FODMAP diet (there are a million pages out there on it). It didn't help me that much to be honest but it does help a lot of IBS folks out there. I never eat raw veg or fruit these days. That's almost certain to result in agony for days afterwards.

Why aren't the docs treating your kidney stones? My understanding is that such stones are a problem waiting to happen. Don't they ultrasound-blast them or something these days? I'm getting another pyeloplasty next week and I'm praying that it resolves as much of this pain as possible (but the docs aren't hopeful :[ ).

Also, I find that remaining very constipated and excreting small amounts of stool at a time is the overall least painful strategy for me. Every day I do 1-3 enemas that result in small movements. If I take tons of laxatives to get a big movement, typically this will result in agony for days and I think it's what you said - that my gut is contracting and pushing/pulling on whatever it is that's very sore (hopefully my kidney).

Let's keep in touch.


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## twonK

rewinj said:


> Posting here because this is me as well. Laying on my stomach is the only relief I can get right now, I've been rather confused, and this is a very interesting thread. I will post more soon.


please do.


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## twonK

midwesterner said:


> twonK - I have been through multiple CT's, ultrasounds, HIDA scan, Celiac testing and nothing has been found. I, too, feel better when lying down! And only when lying down, otherwise, my upper abdominal pain is ever present, some times worse than others. My pain is a heaviness, and a searing pain right below my rib cage and across my entire upper abdomen. I find if I put a cold pack, or even just my cold hand on that area, it feels better. I have not tried the belt. I was at the doctor again today, another scan ordered. I suggested to my doctor that maybe it is celiac or mesenteric artery ischemia, or celiac compression syndrome. He doesn't think I'm "old" enough for those diseases (mid 50's), but I have acquired heart disease and 5 coronary stents - I obviously have ischemia! I am normal weight, non-smoker, good blood pressure, low cholesterol numbers, so my lifestyle does not point to any of the obvious culprits. I am very frustrated as I have been chasing a diagnosis for this pain going on 5 years. Although no answers have been shared on this forum, I feel less "isolated" knowing that I am not the only one with these symptoms.


hmm I do get pain just below my rib cage as well. I think it's my costochronditis, is that a possibility for you? Don't listen to the "not old enough" argument, there's nothing that says you have to be a certain age, it's just typical that people are of a certain age. I got a bunch of kids conditions when I was 21 for example.

I hear you about the lifestyle. I appear the epitome of health but under the hood I'm like a 90 year old alcoholic smoker on his last legs. Very frustrating since people assume you're a hypochondriac or a wimp. I've been in pain for 20 years. Sorry if that's depressing news  But I agree, it's wonderful just knowing there are others who are also stuck in the same boat.


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## twonK

linsalt said:


> I came across this topic when trying to research my symptoms. I really appreciate when other people report their symptoms and what does/doesn't help, so I thought I'd do the same.
> 
> I'm going to give a brief history including the things I think are related, leading up to the pain I've been experiencing that's so similar to other people in this thread.
> 
> After childbirth, my abdominal area has never been the same. I became sensitive to pressure on my abdomen, and I felt like my organs were not where they used to be. I discovered that lying face down on my stomach (reading a book, for example) would feel fine, but when I tried to move and get up, I had incapacitating back pain. The back pain would go away after a while, but it was very intense while it lasted. With regular abdominal exercises, I stopped having that problem. I could lie down without then having back pain. I *think* that I had abdominal muscle separation after childbirth that never went away (with most women, the muscles go back together after the baby is born). I have to regularly exercise my abdominal muscles to support my spine. If I stop exercising my abdominal muscles, my back problems start to come back.
> 
> My recent problem that is like yours started after I had an allergic contact dermatitis reaction to a hair product. I got a rash and inflamed lymph nodes, and my doc prescribed methylprednisolone. After I stopped taking the medication, I started having abdominal pain. I think the meds may have triggered this issue for me, and that the issue is related to my prior abdominal changes/problems.
> 
> The pain started in the morning and evenings. I'm now having it every day, all day to varying degrees. It's a gnawing/burning pain (not stabbing). Sometimes it's very intense, and I can't do anything but lie down. Sometimes it's diffuse and just unpleasant. I have some gas, but not a lot. I also have some constipation, but not complete. I used to be very regular. The pain sometimes radiates to my back: the middle or upper back.
> 
> If I press on the spot between my rib cage above my belly button, I feel discomfort. The gnawing pain is worst, though, in what feels like the middle of my stomach where my belly button is.
> 
> I discovered that the pain is worst when I'm standing. Sitting is sometimes okay, but the pain actually goes away if I'm lying down. Lying on my left side helps the most. I'm also helped by lying on my back or stomach. I discovered that pressure on my abdomen makes me feel better. That surprised me, because normally I don't like any pressure on my abdomen. I may look into that girdle that the original poster mentioned.
> 
> On another forum, I also came across people who had these symptoms. Many of them had extensive testing, but still didn't know the cause. A couple of them were diagnosed with twisted colons. I don't know if that's what I have.
> 
> I don't feel like exercising at all, but I'm going to try to force myself to and see if it helps. I'm also going to try drinking some kefir and taking vitamin C. I'll give an update later.


how did the kefir etc. go? Mine's not a twisted colon - I've had all the 'oscopies and even a pill cam. I've had my innards called "pristine" by a surgeon. Most people would be happy with that but I was thoroughly depressed as I was hoping he'd spot something wrong. Have you tried a binder yet? I've actually stopped using them since the nature and location of my pain has changed a lot recently. It's all very confusing and worrying.


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## gazorpa

Hello again, everyone... I'm the original poster.

Thanks to everyone who replied.

Since I was last here, I've been to a couple more doctors and had a couple more tests... but still no results. I even tried (on the advice of a gastroneurologist) medical hypnotherapy. Nope, no help.

I don't have any problems with my kidneys, those have been scanned and re-scanned. Name a test, I've had it. Recently, on a whim, I took the SIBO breath test (hydrogen/methane). Normal.

I don't recall if I mentioned this, but I do wear a belly binder. After noticing that my abdomen felt slightly better when I wore my tighter jeans, I decided to give the binder a try. It does help a little. I wear it every day. I'm now on my third binder.

I've tried all the diets.

Constant, chronic pain will grind you down.

Doctors should be forbidden to shrug.

I will continue to seek.

And I will check back here from time to time.


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## miguelc91

Hello everyone.

I felt the moral obligation to share my story with you guys, because I often relied on these forums when I was so bad I wanted to die. I don't know if it will work for you or even if you will dare to try it. I should tell you that go consult your physician before doing it, but of course you already know that. I actually did that, I consulted my physician before doing it. He told me I was crazy.

I too suffered from chronic GI pain, it was everything you are describing in your posts, lots of pain. While doing a very extensive research of trial and error over a couple of months, I finally found a solution that worked for me, and it has relieved me from every single GI symptom I had.

So I had already went Gluten Free (meaning eating a completely Grain Free Diet) and also Dairy Free, and that helped a lot since taking away grains and dairy reduces by itself a lot of the immflamation in the gut, that change in diet actually took care of all the acid reflux I had. But I was still was bloated some times, and still having that horrible pain that just didn't even let me think, and all I wanted was to lay down so it would go away or at least decrease.

So what really really made the pain dissapear was something that went exactly to the opposite of what every GI Dr told me. I started taking HCl (hydrcloridric acid). Yes, the one that is in everyone's stomach, and the one that all the pills I had been given was supposed to eliminate because "its bad". So I started with 1 pill in a supplement totally afraid that it would puncture my stomach and bleed internally to death. So, to make a long story short, now I am taking 3 with each meal, no pain at all of any kind, no acid reflux, no pills whatsoever, and having the time of my life.

Anyone with a ulcer should not do this ever. And defintely there is a strong withdrawal when quitting the omeprazol, pantoprazol, dimeticone or whatever, the reaction is an extreme acidity in the UPPER stomach, which is not where the acid is supposed to be. The acid should be on the lower stomach. Well, SO I tappered the damn omeprazol until one day I took the last.

This is just me sharing my story. Kind regards and love for everyone, never loose hope.


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## Rose

The original poster and I could be twins. I have also had constant lower intestinal pain for 4 years, along with constipation and slow transit. I also have diverticulosis and have had many diverticulitis attacks. I feel I have had every test known to man, including abdominal ultrasound, two abdominal cat scans, transit study, colonoscopies, barium enema, upper GI with small bowel follow through, Defogram and more that I can't remember. I have seen two GI doctors, one of whom is supposed to be tops in the field at a prominent Boston hospital. Not one could explain the pain or why is goes away when I lay down. They too, just gave me a shrug. I finally brought the results of all my tests to a GI surgeon. One test did show I had rectal prolapse along with the diverticulosis in my sigmoid colon. The surgeon suggested removal of the sigmoid and repair of the prolapse might bring me relief. I was desperate, so I had the surgery in Sept. 2014. Almost two years later and I still have pain. Some days are better than others, but it's always there. I do have problems moving my bowels without the aid of laxatives , but it doesn't seem to matter if I "go" or don't "go" I still have pain either way, along with the bloating. Living with chronic pain drags you down and ruins your life. I try to function as best I can. I try to walk everyday, although there are some days, I can't get off the couch. I have also had a few days where I was totally pain-free. I can count those days on one hand. I also have no explanation for the pain-free days, I had high hopes for Linzess when it first came out. I worked great for three days, then on the 4th day I got crippling gas pain and had to stop taking it. In any case if anybody find something to help with the pain, let me know.


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## flossy

Rose, did you ever try these (click on below link to read):

http://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/

You should take them every day, same time, same amount (when you figure what that amount will be).


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## Rose

Hi Flossy, no I have never tried these. Do they really help the pain? I have stuff for the constipation. Does this help with both the C and the pain?


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## flossy

Rose said:


> Hi Flossy, no I have never tried these. Do they really help the pain? I have stuff for the constipation. Does this help with both the C and the pain?


It definitely helps with the constipation.

I never have had a lot of problems with pain from my chronic constipation, but it's more of an uncomfortable feeling. I call it "clompy." I can feel the clumps of fecal matter in my intestines, working their way down. It's not a horrible feeling, nor painful, but as I said uncomfortable and unnatural feeling. So I don't know if they would help with the pain, but yes with the constipation. I am very rarely constipated anymore, but I always have incomplete evacuation.


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## Rose

Thanks, maybe I'll give them a try.


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## flossy

Yes, if you are always constipated I totally recommend them. Best thing I've tried so far, and I've tried just about everything.


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## mtlguy

I've got similar symptoms,
In my case I've been suffering with this type of pain about 2 weeks after having emergency appendectomy and it's been about a year, I usually can feel the pain coming on after a long work shift, I'm on my feet all day... Some days it gets so bad I've gotta sit in my car with the seat reclined for a few mins to get some relief then I'm fine for another few hours..I've been to the doctors several times she had no idea what to say, no hernia no abnormality nothing! I deal with the pain every day. On bad days I would say the pain is 9 on 10 if you know what I mean.. Besides being overweight I'm in good health..I've recently cleaned up my diet lost about twenty pounds limit alcohol consumption and this seemed to help dramatically.. some days I've got little to no pain , I just wanted to share this..


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## annie7

hi Mtlguy

so sorry about all your pain. if you've had surgery, the pain could be from adhesions.

i have adhesions from several abdominal surgeries. adhesion pain can be quite severe and also can vary--some days there is no pain while on other days it can be very bad. adhesions do not show up on x rays or CT scans unless they are pulling an organ out of place--and then that is what will show up--the organ being displaced.

lying down generally eases my pain. so does using a heating pain.

hope you can find some relief. take care.


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## twonK

talking of adhesions... I had a kidney op a month ago and the kidney surgeon saw tons of fibrous tissue and removed it. He also separated a section of my colon that was attached to my retroperitoneal cavity!

However, I'm if anything worse than before the op, which is a nightmare. So on Friday I saw an abdominal surgeon hoping he'd agree to open me up and look for more adhesions. But he turned out to be an ultra risk-averse ... asshole and said that an exploratory procedure would be unethical!!!

As such, can anyone recommend an abdominal surgeon in NYC who has a conscience and understands that adhesions can't be seen on scans? It's a long shot but I thought I'd ask anyway.

Also (whilst I'm here...) does anyone have more tips on how to cope with adhesions? Here's my experience at present:


I'm in agony one minute and fairly OK the next.
BM's and farts can radically decrease or increase the pain
the pain can be sharp and localised or whole-abdomen and dull/bloated
even physical movements, such as a few heavy steps can seemingly "jar" my innards, provoking pain. This means at present I walk like I'm walking on eggshells, or trying to be a Geisha or something equally ridiculous-looking for a 40 year old man.
pressing incredibly hard into my navel can counterintuitively relieve the pain. At other times it makes it worse and I want nothing touching my abdomen. As such I often wear 2 or 3 belts, pulled really tight into my abdomen.
lying on my front or side can completely resolve the pain about 1 time in 10.
I get pain down my ureter to my nuts. Today that pain is radiating down my hamstring.

In short, I'm a complete mess. An undefinable, undiagnosable mess. And any tips for coping would be greatly appreciated.


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## annie7

Hi Pete

oh so sorry for all your pain. yes adhesions are miserable.

and oh yes in my experience, surgeons are very ultra risk adverse when it comes to adhesions. because more surgery --even exploratory surgery--just means more adhesions.

last november i developed a blockage and severe pain. my surgeon suspected adhesions from a previous surgery and did a CT scan which showed portions or my small intestine and colon being pulled out of position. based on this, she did exploratory surgery and found adhesions everywhere. they had strangled my colon and had twisted my small intestine into pretzels. she preformed lysis of adhesions which took over two and a half hours and then removed my colon etc.

last week i developed another severe blockage and went to the ER. my surgeons at this hospital conferred with my other surgeon and she told them i was a mess in there so they were (despite my pain) reluctant to operate again and put me on total bowel rest (NG tube and ice chip diet) for a week. utter misery. finally they decided to operate since i was not getting any better. fortunately there was just one adhesion blocking my small intestine so it went relatively quickly. but of course, this last surgery is going to mean more adhesions down the road, just like the other surgeries did. i feel like a walking time bomb.

so my point is oh yes- it's very hard to find a surgeon who will operate unless you develop a severe blockage. and even then, they don't want to operate right away.

coping---oh yes it's hard. a heating pad sometimes helps. resting, not over doing. stretching a bit can help--standing up straight and holding your arms over your head. but be careful. don't overdo this or do it if it hurts too much. listen to your body. lying out straight on the bed with arms over your head is another stretch you can do..

there is a lot of info online about dealing with adhesions.

some people find massage helps with pain relief but be sure a find a massage therapist who is experienced with massage and adhesions.. myofascial massage /myofascial release is the technique often used. there are massage therapy centers that specialize in adhesion relief. Clear Passage is one of them.

there are physical therapists who specialize in dealing with adhesions and adhesion pain relief. ask your doc for a referral.

and many people--myself included--take opiod pain meds for pain relief. i hate to have to take these but when it gets bad, my doc told me to take them.....

good luck. i do hope you can find some relief.


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## flossy

I'm still patiently waiting for the day we can all get intestinal transplants. (Just don't give me a transplant with someone who had IBS!)


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## annie7

well they actually do have intestinal transplants available now. needless to say, it's a surgery of last resort.

https://www.ucsfhealth.org/conditions/intestinal_transplant/


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## flossy

Wow, I didn't know that. Good to know.


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## mtlguy

Annie7
I forgot to mention along with the abdominal pain I do feel bloated almost to where I can feel just above my navel swollen to the touch.. Mornings are relatively pain free no swelling and as the day goes on it gets worst.. As I mentioned in my last message I feel since I've cut down on bread, pasta, or anything grainy for that matter it has gotten much better.. Thanks for taking the time to read my messages I appreciate it  all this was mentioned to my doctor if your wondering.. Frustrating. It's like I never know when I'm gonna get an "attack" that's what I call it..


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## annie7

mtlguy

yes that is frustrating when you never know when you are going to have an attack.

i have bloating like that, too--where the day starts out fine and then it progresses. abdomen gets tender in a certain spot in particular where i know i have adhesions. i think they pull on my small intestine and aggravate the bloating there and make it harder to pass gas.

that's good you tweaked your diet. that can help a lot.

maybe a long shot but have you been tested for SIBO--small intestine bacterial overgrowth? symptoms of SIBO include bloating and gas. as well as constipation or diarrhea etc. i tested positive for SIBO. here is a good website with lots of info on SIBO including diet info.

http://www.siboinfo.com/


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## twonK

Hey Annie thank you so much for your compassion and kind advice - as always. Even though we're in such a horrible situation it's great to hear that someone else is going through it too. What a strange bunch us humans are eh?

So here's what I don't get: is there such a thing as exploratory abdominal procedures? Empirically you'd think that the patient would have to be in dire straits (read: dying real soon) before a modern-day surgeon is willing to open their abdomen up. And this is down to the risk of forming new adhesions?

I've joked with my friends and colleagues for some time that I might end up getting my colon removed but if this situation persists, that joke becomes less funny.

It amazes me that modern science (you know, the science where we can grow a human ear on the back of a mouse) cannot prevent adhesions from forming? Isn't that weird? I asked a recent GI doc about it and he explained that you can't just drape the operated-upon area with teflon (my suggestion) since the adhesions may form some distance away from the operation site. News to me.

Anyway. Have you tried myofascial massage or the Wurn technique? I've read that you need to be careful and that some patients have ended up in more pain than before treatment!

I'm really sorry that you're going through this hell too Annie. Let's hope that some decent solution awaits us.

Best, Pete


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## annie7

thanks, Pete. oh yes i agree. while we wouldn't wish this adhesion misery on anybody, it helps to know we are not alone....

and yes--with all the advancements in medicine you'd think they'd have developed a way to keep adhesions from forming.

there are adhesion barriers like seprafilm but those are not without possible side effects and complications.

all three of my abdominal surgeries started out as exploratory. in 2013 i developed a cecal volvulous. i was in tremendous pain and vomiting so went to the ER. the x ray showed my colon had twisted 360 degrees at the cecum so the surgeon cut me open (exploratory) to see just exactly what was going on and did a hemi colectomy. and that surgery is what caused my adhesions. but in that case it was either surgery or die.

my surgery last november and also the one two weeks ago also started out as exploratory--at least, that's what the paperwork says. the surgeon in november suspected adhesions based on my CT scan and so cut me open to find out and then did lysis of adhesions etc. and the surgery on 4/12 also started out as exploratory because again, they suspected adhesions. the surgeon did not want to operate based on my history of adhesions and what the other surgeon told him --that i was just "a mess" inside. but after a week of no improvement all the surgeons consulted and went ahead with the surgery. fortunately there was just one adhesion causing the blockage problem.

after my 2013 surgery i did go to a very good massage therapist who was trained in myofascial massage because i was hoping that this would help keep adhesions from forming. i went to about 10 sessions but it got expensive so i had to stop. i have not tried any other type of massage and oh yes i too have read the stories of people who tried massage--wurn, myofascial etc--and developed more pain and problems which can happen if the adhesions are attached to other organs. after reading all this, i decided no more massage. it was just all starting to sound too risky.

and oh yes let's hope there will very soon be some solution to all this...


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## twonK

Hi Annie, sounds like you've really been through the wringer (I knew you had but this just confirms it!). Was the doctor right to take drastic action (the hemicolectomy) in that situation? Just curious why they didn't try and untwist things first for instance. So 4/12 they removed the one remaining adhesion and you're still in so much pain, how is that? Do you suspect undetected remaining adhesions or a different issue?

Re: the myofascial therapist, your insurance wouldn't cover it I'm guessing? I've read that insurance doesn't want to pay for anything to do with adhesions which doesn't surprise me. Even my otherwise-excellent and knowledgeable kidney surgeon told me last month that adhesions almost never cause lots of pain. Amazing ignorance, really.

So, what do you do overall to help with your abdominal pain? Here's what I've tried since finding out I have adhesions:


heat pads - helps somewhat, sometimes
low-residue plus low FODMAP diet - perhaps changes the nature of the pain but not much help seemingly
oxycodone - absolutely essential. I'd be bedridden without it.
CBD oil (edible) - doesn't seem to help
lying down in various positions - can help a lot but is inconsistent. Sometimes lying on the right side works. Sometimes left. Sometimes front. I imagine that different adhesions are pulling in different directions or something. Or perhaps as food/gas moves along the colon, it needs "pulling" in different directions depending on where it is.
pants belts - sometimes applying very strong pressure in a specific location (usually around the navel) helps a lot. Again, more often than not it doesn't.
walking very gingerly - sometimes my abdomen feels so tender and sore, it's like I just had an operation. So accordingly I walk very slowly and gingerly. I've been doing this for a week or so but again, it hasn't seemingly helped. 
changing posture - sometimes arching my back and sometimes hunching over can help a lot. Again I'm guessing that this stretches or compresses the troublesome area/region. Often it doesn't help at all.

Anyway, I'd love to know if you have any other techniques or things you do that help, even a little bit. Oh - also any adhesions forums you know would be helpful, I can't find any that are currently active which is weird.

Thanks, Pete


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## annie7

unfortunately a cecal volvulous cannot be untwisted. surgery is the only fix for it. if left untreated a volvulous can progress to bowel ischemia, necrosis --both of which the path report shows i'd developed---and perforation.

and yes you're right. my insurance will not cover any type of massage or physical therapy for adhesions.

my surgeon told me adhesions only bother about 5% of people. lucky us, being in that 5% --assuming that he's right of course. i've heard other people say that a lot of surgeons and doctors deny that problems with adhesions can develop.

on 4/12 the surgeon just clipped the adhesion that was causing the blockage problem. he did not do any surgery on any of the other ones in there because more surgery just causes more adhesions.

i think most of my pain at this point is post op pain. just like the last time. it lasts a few months. and yes, i am still having pain from the other adhesions.

you're right about adhesions pulling in different directions as food and gas move along....

sorry i don't have any more suggestions to help with the pain other than what i've already mentioned--the heating pad, lying down, not overdoing and mild stretching. and yes, a low residue diet. also oxycodone....


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## Jamuh

I know I'm late to the game here but my story has to be heard too, right?!
I have RLQ pain... you know, near my appendix and dx'd with IBS-C. They say it's not my appendix, so whatever. But as to the OPs point, it gets better when I lie down, but only if I lay on my right (the affected) side. It's almost instantaneous. Turn the the left or back and the pain returns. 
Wth? That sounds like something is moving. Not sure how a binder could help. I work in healthcare and now it's got me wondering why we DON'T do standing CTs.


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## miguelc91

Have you tried changing your diet? I did and my pain certainly improved. I was advised by Dr. Peter Osborne to make important changes in my diet which I though at first had nothing to do with my pain. I always wanted to get better by taking pills, until one day I realized it was not helping at all. So I went to him and everything changed. He recently published a book called No Grain No Pain. Don't get distracted by the title about the diet, it is an encyclopedia of knowledge and food reactions that I had never imagined it to be true. You can find it on Amazon by the way. No Grain, No Pain: A 30-Day Diet for Eliminating the Root Cause of Chronic Pain


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## flossy

miguelc91 said:


> Have you tried changing your diet? I did and my pain certainly improved. I was advised by Dr. Peter Osborne to make important changes in my diet which I though at first had nothing to do with my pain. I always wanted to get better by taking pills, until one day I realized it was not helping at all. So I went to him and everything changed. He recently published a book called No Grain No Pain. Don't get distracted by the title about the diet, it is an encyclopedia of knowledge and food reactions that I had never imagined it to be true. You can find it on Amazon by the way. No Grain, No Pain: A 30-Day Diet for Eliminating the Root Cause of Chronic Pain


I never read it but on Amazon it has impressive reviews. Out of 115 reviews 87% are five stars, 12% are four stars and 1% gave it two stars.


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## JT Bynum

I believe what you and I both have is Pelvic Congestion Syndrome. At first I thought it was IBS related but I've never had any pain with my IBS symptoms so it really felt like what most people describe a hernia pain, the doctors ruled that out, so my own internet doctoring Pelvic Congestion Syndrome fits almost all of my symptoms especially the odd pain going away when I lay down.


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## twonK

JT Bynum said:


> I believe what you and I both have is Pelvic Congestion Syndrome. At first I thought it was IBS related but I've never had any pain with my IBS symptoms so it really felt like what most people describe a hernia pain, the doctors ruled that out, so my own internet doctoring Pelvic Congestion Syndrome fits almost all of my symptoms especially the odd pain going away when I lay down.


unlikely seen as that I'm not a woman?


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## twonK

Jamuh said:


> I know I'm late to the game here but my story has to be heard too, right?!
> I have RLQ pain... you know, near my appendix and dx'd with IBS-C. They say it's not my appendix, so whatever. But as to the OPs point, it gets better when I lie down, but only if I lay on my right (the affected) side. It's almost instantaneous. Turn the the left or back and the pain returns.
> Wth? That sounds like something is moving. Not sure how a binder could help. I work in healthcare and now it's got me wondering why we DON'T do standing CTs.


I have no idea why a binder helps me but it's $20 so why not try it?


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## twonK

miguelc91 said:


> Have you tried changing your diet? I did and my pain certainly improved. I was advised by Dr. Peter Osborne to make important changes in my diet which I though at first had nothing to do with my pain. I always wanted to get better by taking pills, until one day I realized it was not helping at all. So I went to him and everything changed. He recently published a book called No Grain No Pain. Don't get distracted by the title about the diet, it is an encyclopedia of knowledge and food reactions that I had never imagined it to be true. You can find it on Amazon by the way. No Grain, No Pain: A 30-Day Diet for Eliminating the Root Cause of Chronic Pain


I've tried every medical diet under the sun to no appreciable effect, sadly.


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## Stool Pidgeon

I find singing this while sitting on the throne helps lighten my mood if nothing else

(Sung to the tune of "I'm Henry the VIII I am" by Herman's Hermits)

I'm trying to defecate I am

trying to defecate I am I am

I'm trying to push a brown one through my little back door

the last one missed the toilet and fell on the floor
And everyone wants to defecate (Defecate!)

and Fiddle with me willy with me hand
Oh ain't it great when you defecate

trying to defecate I am I am

trying to defecate I am


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## annie7

cute!


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## twonK

bravo!


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## Gronk

Visit a health store and buy peppermint oil capsules. I take 1 about twenty minutes before food and they are fantastic for IBS pains. They might help you ☺


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## twonK

Gronk said:


> Visit a health store and buy peppermint oil capsules. I take 1 about twenty minutes before food and they are fantastic for IBS pains. They might help you ☺


if only it were that simple Gronk.


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## Callen

Hi, I'm new to this forum but having read so many comments that are so similar to my pain i wanted to share my diagnosis after 4 years of pain. After many scans and procedures it turns out I have a hernia, a very rare one called spigelian. My new doctor just couldn't understand why the pain goes when I lie down so she did some digging and now it's been confirmed. Just waiting for a date for the operation.

Anyway hope this helps some of you

Carol


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## flossy

Gronk said:


> Visit a health store and buy peppermint oil capsules. I take 1 about twenty minutes before food and they are fantastic for IBS pains. They might help you ☺


I tried them on two different occasions for several days. Didn't do anything for my CC but gave me fresh breath.


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## twonK

Callen said:


> Hi, I'm new to this forum but having read so many comments that are so similar to my pain i wanted to share my diagnosis after 4 years of pain. After many scans and procedures it turns out I have a hernia, a very rare one called spigelian. My new doctor just couldn't understand why the pain goes when I lie down so she did some digging and now it's been confirmed. Just waiting for a date for the operation.
> 
> Anyway hope this helps some of you
> 
> Carol


Hi Carol, can you please message me? I ask since it turns out that after 20 years of pain I too have a hernia that all previous clinics and doctors missed. I have a confirmed umbilical hernia and maybe also a spigelian like you. I'm hoping beyond all hopes that this helps or even alleviates my pain. I don't think I can cope much longer.

Where is your pain? Mine is on my hip bone at the front, about 5" from my belly button. BM's can completely alleviate or trigger the pain, it's so confounding :/


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## gazorpa

Hi -- I'm the original poster. I come back from time to time and check this thread, looking (still!) for answers.

My pain is unchanged.

Here is what helps -- sometimes --

-- heating pads - helps somewhat, sometimes -- I sleep with one.

-- lying down

-- abdominal binder

-- oxycodone - I have a small stash from a frozen shoulder years ago. I hoard it and break the tabs into tiny bits and only use it when absolutely necessary.

-- vicodin, valium, MMJ -- help a little. Not much. I try not to take any of that unless I have to.

Things I have tried: 7 Gastroenterologists, a Gastroneurologist, hernia specialist, all the diets, food sensitivity testing, SIBO testing, defecography, two colonoscopies, two abdominal CT scans, various ADs ("because they might help"), various supplements, hyphotherapy, acupuncture, hydrotherapy and I'm sure there's other stuff I have forgotten -- NONE OF THIS HELPS.

I have a question about adhesions. Can you get adhesions if you've never had surgery?


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## annie7

HI

so sorry you're still having so much pain--it's miserable, isn't it.

adhesions are most often caused by surgery but you still can develop them even if you've never had surgery. trauma --from lifting something too heavy for example--can cause them. i know someone who had this happen to her.

abdominal infection or gynecological infection can also cause them as can endometriosis. and rarely, they can develop with no apparent cause at all.

http://www.medicinenet.com/abdominal_adhesions_scar_tissue/page2.htm

http://www.webmd.com/a-to-z-guides/adhesion-general-post-surgery#1


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## movieman

Gazorpa ... Are you any better now? I found this thread last night after sitting in desperation looking for answers about my own symptoms. I share most all of what you've written about. Have you tried any of the suggestions you have read here? Any improvements? How about the rare abdominal hernia that someone mentioned? I have myself been seeing a local gastroenterologist who has tried several different approaches but now is leaning toward a "muscular type of problem." I am next going to ask for a re-examination of the last CT scan to look further for the hernia and perhaps also an ultrasound. The elements you describe of relief when laying in bed and relief when applying pressure to the sore spot match my impressions as well.

Let us all know how you are doing ... I hope your next post tells of improvement ... good luck.


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## Ekgrilz

I know I may be late to the discussion, but I just wanted to say in general, many of you should request that a full thyroid panel be taken when you visit your doctor. I suffer along with many of you in regards to a miriad of these horrible and debilitating symptoms. I suffered for a long time and still have some difficulty. However, I was diagnosed with Hashimotos Thyroiditis and am currently being treated with levothyroxine, the aip diet, and vitamins and supplements. This has drastically improved my experience of digestive pains. Please go out and get your thyroid checked people. And be sure to insist on a FULL thyroid panel, not just TSH. Especially if you have unexplained digestive issues, insomnia, unexplained weight gain, brain fog, heart palpitations or heart problems in general, anxiety and depression, vertigo, TMJ, a history of ovarian or breast cysts, and the list goes on. All these symptoms can and do point to an issue with the thyroid. So many people go undiagnosed or misdiagnosed for YEARS. If I can save even one of you from that then this post is so worth it. Continue to take charge of your health and continue to look for answers. Knowledge is power and you are your own advocate. Blessings to all of you. If anyone is interested in connecting with me please feel free to write me at [email protected]


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## twonK

Ekgrilz said:


> I know I may be late to the discussion, but I just wanted to say in general, ...


Agreed - everyone should get that checked. Sadly mine has always been "within acceptable limits". After years of pain and failed avenues of hope I'm beginning to think a lot of my pain is derived from back pain. I've no idea how or why it would manifest as abdominal pain, other than "it's deferred pain" but it does seem to be strongly related for me. Especially this "lying down does X or Y" business. Check it out folks.


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## Jinxsee2

Hi,

I know this is probably very late to reply to this, but this is the first post I've ever found where someone has the same solution! I have had 'spastic colon'/'IBS' since I was in nursery school. I get severe abdominal spasms - so bad I can become incontinent. With this I get hectic lower back pain and bloating that makes me look 9 months pregnant. BUT, if I lie down - no matter where it is, (even under my desk at work ;-)), within a few minutes ALL pain subsides. After 30 minutes or so I am fine...but within minutes of standing, it all starts up again.

School was a total misery, and work is a misery - I am 37 now and have had this since I can remember, approx. age 4. I have tried every diet, including the newer FODMAPS diet, and nothing helps, when my stomach kicks off, it lasts for weeks. Even when I'm not in a 'bad patch' my stomach is sore at some level. Fascinating that you have the same thing - every doctor I've spoken to about this thinks I'm daft. I'm in the process of googling Visceroptosis - thanks to your find. Maybe this will finally explain my problems!

Jinx.


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## twonK

@Jinxsee2 wow man, that's really bad, I really feel for you. At least I get some respite. Occasionally and randomly may it be.

Have you had your back X-Ray'd and MRI'd? That's next for me, once I can muster up the energy. I've had lots of abdominal MRI's but apparently it has to be specifically of the back to really spot any "back" issues. Visceroptosis didn't pan out for me I don't think.

Finally, as counterintuitive as it sounds, have you tried abdominal binders like I have? For some reason (probably back-related) they can sometimes really, really help reduce and even eliminate the pain. Sometimes. On other identical situations they amplify the pain. As usual I'm completely stumped as to why.


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## Dan33

Did a google search and found this. So I had some cramping and bleeding so had a colonoscopy and was told intestinal ulcers (Crohns). I had this a few years back and put on Budesonide (a steroid) for a few months and it worked..... Told to eat more fruits and vegetables and things have been good for years. Now I had another colonoscopy and have been on the steroid for 30 days and only relief is when I go to bed. And when I read about diet it says stay away from fiber, which my Doctor says fiber is good? I don't have diarrhea but do move my bowels more than usual. I also had my appendix out in 1973 and in 2003 I had an adhesion, a blockage I knew and the ER doctor told me I was constipated, which I knew was wrong. Had that removed back then. Now my pain feels like a tugging on occasion so am wondering if I am dealing with 2 different things? Am hoping that I can get something figured out because its starting to mess with my daily life... Will check in here soon, and will check on some of these diets that I have seen here....Thank all for sharing....


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## Janette P

Hi,
I have read all the comments and was just wondering if anyone has noticed that the skin on top of the area has lot sensitivity.

I first suffered RHUQ pain when i was pregnant with my first child, 25 years ago. It went away and came back with the second one, 23 years ago.

I was on efexor, that made it worse. Now i get the pain when i am upright over 2 hours. I am always holding myself, not that it does any good. If i overdo standing up or walking around, i can't touch the area, it is too painful.

Just wanted your thoughts.

Janette


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## Charliesmom

My situation is a little unique as it's not myself in pain, it's my 3 year old son. He has a genetic condition called Schaaf-Yang syndrome and he's currently only one of fifty in the world with it. (So we don't exactly have a road map to follow) With his genetic condition he has a myriad of symptoms including high threshold for pain (doesn't even flinch at shots and blood draws). In fact, he only ever cries when he has what we call an "abdominal episode". First noticed a couple of days after he was born, his symptoms that we know of are extreme pain that seems to come in quick waves as if he's in labor. He also seems to be pushing as if he's in labor. Sometimes before an episode we'll hear an audible "gloop" sound, like someone dropping a stone into a pond. When he was younger, these episodes lasted an hour to an hour and a half. And honestly I think he just got wore out and passed out- not that the pain stopped. Nowadays they last around 10-15 minutes depending on how quickly I can get him on me on his belly. Things that trigger an episode- sitting for more than an hour or so, trying to stand (Charlie still doesn't walk- he was born with hypertonic of the extremities and hypotonia of the trunk), if his hip flexor are stretched during physical therapy that triggers an episode if he's unusually tight, heavy belly laughing. He's been under general anesthesia 3 times- feeding tube placement, exploratory for ENT, GI, and Pulmonary, and finally for testicle descesion. That last surgery he had a caudal where they basically gave him an epidural and numbed his pelvis area into his upper thighs. After that he was symptom free for two and a half weeks!! No heavy congestion and I abdominal episodes where directly before he had been having them 4-5 times a week. (Though since Charlie is non verbal- we don't know if he has dull pain consistently.) My point (or question) is that this could be nerve and muscle related together. Our next step is to take Charlie for acupuncture therapy to stimulate the vagus nerve. (There is a surgery they can do to implant a device to stimulate the vagus nerve but since there's no data on this for Charlie's condition we're holding off on that.) Something that may help someone else- Charlie's GI initially thought he might be suffering from abdominal migraines. Will try to post more later. He's on me now as he was getting fidgety like an episode was coming on.


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## gazorpa

Hi.

I'm the original poster. Many years later, this thread endures... like our pain.

I just wanted to note that I recently underwent laparascopic exploratory abdominal surgery to try and determine the cause of this pain.

After looking at ALL the contents of my abdomen, they found... drumroll please...

NOTHING.

My innards are perfectly normal.

For years I've been saying, "If only I had a window into my abdomen, I know I would see something wrong."

Guess I can't say that any more.

Onward.


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