Today's bad eating day - typical but shows what's going on.

Didn't eat all day until 730 this evening.  For the record, I never eat breakfast, even when I didn't have issues.  Never once felt hungry the entire day (this has now been going on for 4 full months).  Even though I did a lot of hard physical work in the heat this afternoon (that's another story).

So I grilled some country pork ribs (fairly lean), grilled some yellow squash, and cooked some brussel sprouts.  Basically a healthy dinner.  Added no sauces, no spices, no salt.

Despite the smell from the grille, didn't remotely make me feel any hunger.  But I ate.  All I could get into me was about 2-3 oz. of the meat, and perhaps 6 brussel sprouts, couldn't even make room for the squash.  But at least I ate and got some protein into me.

Before I could walk outside after dinner (space of 5 minutes), the stomach cramps began in earnest.  And whey they begin, it puts even more pressure and pain into a spine that's already been hurting all day.

I felt perfectly fine before I ate.

about an hour later, wife wanted to go to Wal-Mart, so we went, shopped, etc.  She wanted an ice cream treat, and since I had intake so few calories for the day, it was like "why not".

So we go to this new place, and I had a Chocolate Brownie Fudge Sundae.  Could only imagine how many calories were in that, but geez, at this point, I need as much as I can keep in me.

Tasted wonderful, gave me that chocolate rush (though wasn't remotely hungry when I ate it).

Before I could get back in the car, a new rounds of cramps began, and in the 10 minute drive thought I was going to split in half.  Took an hour's worth of cramps/stomach pains/back aches and 2 trips to the throne, and I forcibly exited everything.  That effort left me with severe chills, and though it was warm out, I had to put on my winter robe and get under a faux fur blanket, and I was still shaking cold.

I knew better, I have become lactose intolerant during the past year, and usually ice cream is a disaster with me even under normal circumstances.  But my wife and I were trying to have a simple nice time together.  But boy, did I pay for it.

From when I weighed in this morning to this evening (before I "crapped out everything"), I managed to drop another 1.9 pounds.  It doesn't even seem possible to lose that much weight so quickly.

The only time my insides feel right, is when I don't eat at all, and simply keep hydrated on plenty of water, which I do.

As far as eating, we are down to one thing and one thing only that I seem to tolerate. Good old fashioned Cream of Wheat (not the instant kind, the kind you cook).  It's not all that nutrionial, but at least it doesn't bother me, and does add some calories, which I direly need.  I make it with 3 parts water, 1 part Almond Milk, and for me to get it down, I need 5 tea spoons of sugar.  But even with that much sugar, we are only talking about 250 calories max.

Just wanted others to fully understand what I am dealing with.  It's truly a vicious circle which I can't seem to break free of.  I need to eat, obviously.  But I never feel hungry, so there's no impulse or incentive to want to eat.  If I do eat, I am going to get back cramps and back aches and the craps, so what's the point?  Factor that in, knowing I have a mouth full of bad teeth waiting to be pulled out, and even that makes it more difficult to eat even if I wanted to eat.

Since early September (I found an earlier spread sheet I had started), I have now lost nearly 90 pounds.  Over 75 since January 2nd when I was keeping accurate records.

 

Post Edited (Purgatory) : 7/30/2014 11:38:27 PM (GMT-6)

Tears, and asking God to step in.

David, sorry to hear this. Have you tried smoothies.....I put lots of veggies,fruits,raw nuts,protein powder and whatever else I feel like....they are packed with nutrition and protein.....because everything is pureed it might be eaisier for you to digest...you do need a quality blender to make this really work.
T

Not always easy to determine the actual point of pain, but I would say probably more in the intestines.

At their worse, it feels just like someone is twisting a serrated knife into my lower right side and twisting it around and around. Hurts both sides, but definitely more intense on the right side. Can hurt enough for me to feel "white pain", if you know what that means, and can put tears in the corner of my eyes.

Sometimes, they are painful enough, but not as intense as described above. When the cramping takes place, it puts so much pressure on my lower back (which hurts all the time regardless of this problem), just makes the back pain even more hard to endure until the cramps pass.

But the Gastro doctor says he sees nothing noteworthy from his upper and lower scoping, and the last time MRI's were done in that region, nothing significant to report. Still feel they are missing something.

Hope your other half is doing better this evening.

Thank you Dan. I am feeling it will take some kind of real team effort to join the missing dots, to see the whole picture.

Hi David

Sorry to hear of your continuing terrible difficulties with all this.

can you drink water without cramping etc?

what happens when you take clear liquids: water, clear broth? does that pass through you without cramping?

if that works, what happens when you move to gatoraid or equivalent which has a fair amount of sugar in it, which would give you some calories?

What about jello? Also has a good bit of sugar, but no solids.

what happens if you were to simply take a tablespoon of clear edible oil, like olive oil? that too packs a lot of calories?

I am not a doctor or even close. But I'll speculate a bit here, if you'll permit. Regarding the question of where in your GI tract this is occurring, it seems you're saying that the symptoms reliably hit within 5-10 minutes of eating. I believe that means the food would not have had time to even enter your small intestine, so whatever is going on has to be in your stomach or nearby. So several ideas occur to me. One is that there is something physically wrong in your stomach itself, but I assume since you said you've been scoped from above that they have examined your stomach not just your esophagus and nothing has been found wrong there. Did they scope inside your stomach itself?

Another hypothesis is that there is something wrong with the valve between your stomach and intestine which could either be a physiological problem with the structure of the valve or a neurological problem with the nerves that control the valve. If for example, food was making its way out of your stomach prematurely it's plausible that your intestines would react violently. What about a diagnostic procedure where you eat some food that has been spiked with radio-isotope and lie on the scanner until the pain hits? Then the scan would reveal just where in your body the food is at the time the cramping starts. That would be useful to know.

I'm sure you know about the technology for doing a virtual colonoscopy. That is basically an MRI with the data put through 3D visualization software which gives a simulated "fly through" of the colon based on reprocessing of the slice-by-slice data generated by the MRI. Perhaps there is a lab that would apply this technology to the entire length of the small intestine, or at least the upper reaches, to see if there is a partial obstruction there. If the intestine were partially obstructed it could have the effect you are experiencing.

I assume the doctors have done a fecal occult blood test recently? That would also help diagnose if there were a gastro-intestinal malignancy or other structural problem with the gut.

But given that all the testing you've had done has not revealed any anatomical problem, I wonder if the nerves that control the upper intestine pass through the radiation field from your prior treatment. If that's the case then I suppose it's possible that there is nothing wrong with your gut itself but the irritated/damage nerves think there is, misinterpret the data you are receiving, and cause your guts to cramp in an effort to eliminate something that is not really there.

Sorry for the ramble. I feel for you and hope you find a solution.

Post Edited (proscapt) : 8/1/2014 4:21:14 PM (GMT-6)

Thanks for all the good tips and advice. Not sure what my next step is, still in the frustration stage, since I have spent the first 6th months of this year having nothing but endless tests, bloodwork ,scans, from a variety of specialists whom keep coming up empty handed.

It sounds a lot like spastic colon to me.

Purg - here's what I'm thinking. You're saying that you're losing dangerous amounts of weight. And any solid food makes you cramp up violently. So I was thinking "what can you to get calories into you without solids. Or with minimal solids." There are basically two possible answers. One is sugar or sugar water in its various forms: honey gatoraid, jello, etc. Or suck on a lollypop. And the other is oil. Fat is the most calorically-dense food there is.

Lots of people go into fancy italian restaurants, take a piece of white bread, dip it in olive oil, put a little salt on it, and eat it. Basically it's a way to eat oil. A single tablespoon of olive oil has 119 calories in it. So if I were struggling to get calories in me and couldn't eat food, I'd take a piece of bread, soak it in
olive oil, salt, it and suck the oil out of it. Sounds gross perhaps but better than nothing

If you can drink a clear broth without cramping, like chicken broth or beef broth, you could add a tablespoon of oil to it, you'd probable never taste it and it would add substantially to the caloric intake.

A table spoon of honey has about 64 calories.

You could also take the cream of wheat you're eating and put a tablespoon of butter on it, or if you're avoiding dairy, use a non-dairy margarine. It will add a lot more calories.

When I have a "bad stomach", which is more often then it used to be, I'll cook some brown rice or pasta, and eat it with butter or olive oil as the condiment, rather than a prepared sauce. Quality first cold-pressed extra-virgin olive oil is very tasty compared to the processed industrial stuff you find in gallon jugs.

I've also had to be careful of artificial sweeteners, even some stevia-based ones, as they tend to add things that end in -itol (erythritol for one). Those seem to cause bowel issues for me.

I find that when I'm sick, I have no appetite. I see it as my mind winning over fear of the stomach issues. Not really the way we want to win.

Go on Lupron - that will ramp up your appetite

David,

You say your doctors eliminated IBS as a diagnosis for your GI problems? IBS has no specific tests for its diagnosis. It is a functional disorder. The GI tract is not functioning properly and it has been examined thoroughly to rule out physical reasons to account for symptoms. You have had upper and lower endoscopy, X rays, Blood tests, stool samples, etc to rule out infectious disease, inflammatory disease, diverticulitis, chronic pelvic abscesses, volvulus, partial bowel obstruction, adhesive bands, parasites, etc.

Nothing abnormal has been found in your GI tract, and you have a history of abdominal pains, cramping and bloating after meals and diarrhea for more than three days a month. In addition you are experiencing weight loss, loss of appetite, have a history of chronic fatigue syndrome and chronic pelvic pain. Every GI test has come up negative so far, and no more tests are planned for you, what are your doctors calling this?

IBS is a collection of symptoms, in the absence of physical findings suggesting other diagnoses. If your doctors don't want to call this IBS, okay, it's only a label that says they have exhaustively examined and tested you and can't find any physical reasons for your problems. The problems are real. Your doctors would rather say they don't have a diagnosis for you at this time.

A good dietician may be able to help you with a plan to, at least halt your weight loss, which is very frightening.

Respectfully,

Joe

David, I know that some time ago I mentioned the possibility of adhesions......were you ever evaluated for these ? I suffered for years with these....it took a while to figure it out...they don't show on any scans or xrays or MRIs.....very problematic....just a thought
Terry