Test results and 2nd Gastro Doctor Visit - Monday

THURSDAY UPDATE - A TERRIBLE AFTERNOON/EVENING

My morning went well enough, had to run some errands and do a little shopping for the wife. I owed my mom, who just turned 85 Monday, a birthday lunch, so I picked her up at her house and drove her to where she wanted to eat.

I wasn't hungry (still the zero appitite thing), but ordered a oriental grilled chicken salad, no dressing. tried to keep things simple.

about halfway through the meal, started cramping up immediately. Made it through the meal, had to run my mother to the drug store and back to her house, and then back home.

I was in such severe pain, the cramping as usual, led to severe back aches, and it was all I could do to get home. It was too early for any more pain meds, so I laid down about 3 PM, and basically didn't get up again until almost 8 pm tonight. A few times, I had to race to the loo for some relief. A couple of times, after drifting into a troubled sleep, I was forced awake from the pain of the cramping.

Even when I was able to take some more meds, it did little if anything to relieve the additional pain.

I was glad when my wife finally came home from work, as nothing is worse than dealing with severe pain being all alone. One's mind plays all kinds of tricks.

It was the 1st time my mother got to see first hand, just how fast a reaction I can have to simply eating a meal. There has to be a real reason I have been going through all this, its approaching the 2 months point.

Wasnt real happy with this gastro doctor, i think he gave up too fast. i did write a 3 page letter to my oncologist last night, updating him, so i will see how fast and what kind of repsonse i get from him.

I can't keep on like this, I am at the point where I am willing to totally stop any attempts at eating, because the pain I get is not worth the effort. And the cramping pills I was prescribe, do absolutely nothing, might as well be eating sugar tablets.

It's been tough, and I know somewhere, there has to be a real physical medical reason for what I am experiencing.

david

David, I thought about you when today I read a piece in my Berkeley Wellness Newsletter, an article discussed fatty liver disease, it's a spectrum of disorders when the liver can't process fats. What struck me were the symptoms listed similar to yours such as fatigue, loss of appetite, abdominal pain, weakness. Please ask your doctor about this.

Also, as I'm sure you're doing, please add urgency to your doctor, it really sounds like he's on top of things, but this terrible for you. I really hope you can get some resolution on *** (sorry) is going on.

Billy, since this has been going on for nearly 2 months now, even before we went on our Cruise, yes, we have done all kind of experiements. Eliminating certain types and groups of foods, avoiding things that one would think cause distress, etc. It's my conclsion, that it doesnt matter what I eat. Whether it be a 6 oz bottle of Ensure or Boos, or if I were to eat a BBQ pork sandwich, a spoon of peanut butter, a plain salad, a lean piece of chicken, etc. If I eat, I get cramps and back aches. If I need to take a dump, I get cramps and back aches. It's that simple and literal. If I don't eat, it doesn't happen. So the more I avoid eating, the better off I am.

I am almost afriad to eat at all, because I know what will happen. It use to be, it would take 15-30 minutes after eating before the cramps start. Now, as I am eating, while I am eating, they begin. That's a bad turn of event.

But according to the Gastro dr, he can't find anything wrong. I ask, how can I have such severe digestive troubles, and be told there is nothing wrong? Doesn't make sense to me. This isnt some kind of mental thing, this is real and physical.

I am eagerly awaiting my oncologists response to my update. If he wants to do the PET scan, I hope he orders it quickly.

I would say if this keep up for another month, I wont have the luxury of extra weight to lose. And then there is the question of malnutrician setting in, regardless of weight.

David

Friday Update

Nothing back from my oncologist yet. In my area, perhaps its the same everywhere, its like most doctors high-tail it on Fridays, I rarely ever get answers at the end of the week.

Today, not as bad. But I only ate a tiny child's portion of food when I had lunch out with my ex boss today. Still had the immediate cramping, but I ate so little, I figured it wouldn't be as bad. Don't plan to eat anything else today, rather not make things worse

David, have you tried and what is the results if you drink the liquid food supplements, like Ensure and such? Do they cause the same cramping and pain? Do liquids in general hurt you?

David,

I know you are ontop of your condition, just wondered if you have checked on HW with other disease & conditions sites just to see if anyone there that may have similar symptons who may shed some light to help you.
It's worth a try I think!

BOOGEE

james - i have mentioned this multiple times in this ongoing saga, even a 6 oz bottle of ensure or boost has the same effect. i cant tell that any food or type of food makes a difference. if it hits my stomach, i cramp. the only exeption is drinking water, caffine free diet sodas, beverages in general dont see to bother me, good thing, that way i can stay hydrated

sephie - i dont intend to wait till the end of the month, i sent the 3 page letter to my oncologist, who is my "caring" doctor at this time. usually, he would have replied by phone or email. if i dont get an answer by monday, i will call his office and see if i can speak to him. he is the one that sent me to the gastro internist, and if that doctor says "he doesn't know", what does that say about that type of doctor? cant see the point of going to the ER, as over time, these attacks pass. i do live 2 minutes from an ER, so if i had the need, I could even get myself to one fast. All it would do is run up a lot of money, just for them to say, "i dont know"

thanks medved. this new set of problems is nearing the 2 month point with no medical answer so far, and no natural resolution. just glad i didnt start out this problem being skinny. have now lost 43 lbs since the start of the year, over half of it in less than 2 months, with no attempts at dieting or exercise

boogee - yes, good suggestion, but i have checked out some pertinent communities here at hw, espec. the celiac bunch. i also am a regular member now in good standing with the chronic pain bunch - they are a great group - full of compassion - many with very horrific situations going on that make my situation look pale

aimzee - same answer to you about the ER, i know its there if i ever had an acute attack that didnt resolve. not sure any doctor would admit me to the hospital under the circumstances. its not like i have any noticable athropy or anything dangerous going on. from the outside, people keep telling me how great i look, lol. if they only knew what i was feeling on the inside. very disapointed with this highly rated gastro dr, can't believe he ran out of tricks in his bag after only 2 visits. yes, glad i had the colonoscopy done and he removed the pre cancerous polyps, but that is not why i went to him. his "i don't know" answer doesnt sit well with me. he had to know more what to do other than running the endoscopy and colonoscopy procedures. thought there was more to the digestive system than that. and his other remark, "well unless you doctor (meaning my oncologist) orders some more tests, we are done here". i am suspicous because of remarks that he made on the first visit, that he considered me a high-risk, high liability kind of patient, with his "you re chocked full of issues" remark. perhaps, like some doctors, he does well enough in his practice by cherry picking patients. the whole thing with him and me just didn't sit well.

david

kurt, thanks for that tip. i will research that idea immediately, hadn't thought of that or been suggested that before. i will check out info on that med as well.

thanks

david

ps, i dont know if that would make any difference or not, but i haven't had a gall bladder for over 31 years, due to an attack of pancreatitis

thanks for the info, kurt. will look into that aspect as well. hope you are doing ok with it on your end.

david

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Sat Update: No change in anything, will call oncologist Monday noon, if he hasn't called or e-mailed me back

I think he gave up real fast. I thought of something else he said on the first visit which bothered me. After spending the time to bring him up to day, which I do have a long complicated situation, he said something like, "I don't usually have patients coming here telling me all their issues, they are usually sent to me for a specific test". That should have told me something right there.

David

David, I agree, I believe that is a red flag when you hear that. I've seen some surgeons recently, in need of a hip scope. One surgeon I saw, but had to pay out of pocket ($500) spent an hour, a full hour with my wife and I going over my MRI in detail of what needs to be done. He is a top surgeon for hip scopes, but doesn't take insurance. The other surgeon I saw via insurance, spent 5 minutes with me.

Needless to say I'm debating of paying out of pocket and having him do the surgery.

UPDATE: FRIDAY, OCTOBER 19TH

Sad news, there is no update to update.

Been 2 1/2 weeks since I sent the 3 page update to my oncologist. Not a word, no phone call, no e-mail.

Thinking he never got the e-mail, I have now called his office 2x this week, fully automated phone system, so all I can do is leave messages.

Tried to reach his nurse, she is always great getting back to me, based on the last e-mail I got from her, she's out of town on training.

Drive there? It's a 60 mile round trip, can't waste the gas if I went there and no one was available.

Frustrated? Yep.

Now have passed the 2 month point with this entire no appitite/weight loss/cramping/back ache digestive issue - if that what it even is.

The cramping pills the gastro dr gave me - never worked - might as well eaten sugar tablets.

Weight loss has slowed most days, I think mostly its because I have long ago shed the "easy" weight to lose.

Some days, its zero, then the very next day, I will have dropped another 1 1/2 lbs. Lost almost 4 more lbs since Monday, even though I have been doing more forced eating (meaning that I am making myself eat despite no desire or hunger).

I would have thought the doctors would have viewed this as a somewhat serious level problem, but appearently its not. There had to be other tests that could have be run to try to diagnois what is going on, there was even talk of a PET scan 2 weeks ago, but never got any followup.

I don't see my oncologist unti about 9 days from now. Even the good folks at the oncology rehab are getting disturbed each time they see me, with even more weight loss appearent.

Sure glad I didnt start this issue as a skinny person, as I would be a skeleton by now.

David