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Test results and 2nd Gastro Doctor Visit - Monday

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Posted 10/10/2012 7:47 PM (GMT 0)
thanks, explorer

aimzee, thanks also. one would think there would be an end to some of this suffering at some point, my QOL continues to go downhill in a steady slope the past couple of years in particular. if it is for some particular reason, i sure would like to know why. from my view, its an endless thing with little hope of improvement, not a whole lot of fun living this way.
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Wednesday Update

On my 3rd day of the anti-cramping meds, and so far - not even the remotest of improvement. the dr. said outright, that it may not help, but try it for a few days. woke up in a terrible state of cramping around 3 this morning, was a miserable time until it passed and was able to get back to sleep. the weight loss had slowed up the past week or so, but overnight, lost another 1.7 lbs just like that , despite having eaten 2 meals yesterday.

i am updating the situation to my oncologist, and see what he wants to do next. my regular visit and next psa test isnt until later this month. right now, i could care less where my psa number is at, it will be high, and then so?

david
Posted 10/10/2012 8:28 PM (GMT 0)
That's disappointing on the meds. Would have been nice if it would have worked out.

and yes, PSA is the least of your worries right now.

Still praying for you,
Andrew
Posted 10/10/2012 9:47 PM (GMT 0)
thanks andrew, i dont seem to be destined to get a break on this additional burden. not sure how long this will go on until some answer is found. if it ends up being diagnosed as additional radiation damage, then i already know there won't be any solution.

david
Posted 10/10/2012 10:46 PM (GMT 0)
David I just can't imagine how you're getting through all this. It must be horrid for your wife to watch you suffer so. If it IS radiation damage, then perhaps with some time the symptoms will ease..(?)I am having a hard time accepting the fact that noone else has symptoms such as you. Surely there must be someone out there that has had adverse symptoms such as you . Is there a 'world-wide-data base' available that your docs can tap into? I hope the meds are taking longer for you to work. At this point I'm just praying for you to find some relief. We all are...
Posted 10/10/2012 10:48 PM (GMT 0)
David,
I will continue to pray for Dr.s wisdom in how to treat and relief for your pain.
Posted 10/10/2012 11:14 PM (GMT 0)
rivergirl, it only seems like i am the only one here at hw with such lingering and severe problems, but keep in mind, we only collectively make up a sliver of men with pc. i have spent a lot of time researching radiation damage as a whole, and such types of damage are more widespread then the average person would ever realize. and from talking to my current and former oncologists, there are plenty of cases of severe radiation damage to patients, despite our modern means of delivery such as imrt, etc. and thes damages sometimes don't manifest for years after the radiation ends. i started with serious damage, and it has definitely expanded over the past 3 years, and obviously, its expansion hasn't ended yet.

thank you, samster
Posted 10/10/2012 11:57 PM (GMT 0)
David, I've mentioned this before, but its worth restating......a lot of what you are experiencing could be caused by adhesions. I have experienced very similar symptoms on 2 occaisons spread out over many years.... both times after extensive scans, xrays, colonoscopies,endoscopies,MRI which all showed nothing ... it was determined to be adhesions....both times had surgery and got relief...sadly many docs don't recognize how difficult this is on the patient...they scratch their heads wondering what is going on...then an enlightened doc comes along...problem solved.....you might want to push this....certainly worth a try...
Terry
Posted 10/11/2012 12:18 AM (GMT 0)
Ziggy:

As you know I am also experiencing similar GI issues.

I understand that adhesions don't show up on these tests.

How did you get dx.? Was it via exploratory surgery? Was the surgery relatively easy?

Mel

Posted 10/11/2012 12:50 AM (GMT 0)
terry,

it is possible for there to be an adhesion problem. my oncologist brought it up before i saw the gastro doctor. during my bladder by-pass surgery at the end of 2010, they had to sever my illium into two, and took out an 18" section, which was used to make the conduit for my stoma. THen they had to resew the illium back together. Since I have had a track record for over-scarring, ie. my bladder neck endlessly, it is possible that either an adhesion or overscarring is causing a blockage at the juncture. however, its all but possible to see full evidence of that from cat and mri scans. there would be no practical way outside of another invasive open surgery to really look at what is going on. i will see what my oncologist has to say about that when i update him. if there was one at that point, the only way to fix it would be to open me up, cut it part, take out the bad section, and rejoin, but boy, that would be another touchy surgery with a long recovery time.

david
Posted 10/11/2012 1:43 AM (GMT 0)
I, too, have had a friend with really serious digestive and bowel issues which were found to be caused by adhesions from an earlier pelvic surgery. As far as I know, the only way to diagnose and treat is via another surgery, but she did get relief. Unfortunately, subsequent surgeries may just create new scar tissue, but at least should give a break of a few years. I know this is discouraging, but if nothing else pans out it may be worth considering.

Juliet
Posted 10/11/2012 1:51 AM (GMT 0)
Juliet, that is what I am afraid of. Even if there were to be the cause of my distress, another major surgery would be required, and if my record holds true, it would only be a short time till over scarring took place again. That is why I ended up with 7 bladder neck surgeries. My surgeon said he had never seen anyone that could scar over an opening as fast as I did. I had one laser surgery at the bladder neck, and in less than 30 days, the opening was scarred 100% shut. The surgeon was totally amazed, he expected it to stay open at least 2-3 years, not one month. There is an appearent connection between people with over scarring issues and psoriasis. With psoriasis, they still don't really know what causes it, or how to prevent it, but the body thinks it is doing a favor by growing and re-growing skin tissue over and over and over again in the same spot. I never mention it, but I have been fightng at times severe psoriasis on my legs and hips for over 12 years. Some times it gets a bit better, and at other times, it gets worse, but it never goes away. Perhaps just by chance, but until I dealt with cancer for the first time, I had never had any psoriasis at all. This over scarring issue is similar, in that the body thinks it keeps needing to replace skin tissue over and over again. Makes me wonder if there is some kind of common ground to both problems.

david
Posted 10/11/2012 2:15 AM (GMT 0)
Mel, the  problem is that adhesisons are very difficult to diagnose since they do not show on any type of scan,mri or xray...those tests are generally used to rule out other issues....when nothing shows it tends to indicate adhesions...the problem is most doctors tend to dismiss adhesions as a real problem...and when recognized they don't want to deal with it ....I know this from first hand experience...it is pure he@@........the only way to know for sure is either laproscopic surgery or a full open laprotomy. both of my surgeries were open....the second they tried laproscopy but the adhesions were too severe and had to convert to a full open...all this is most unpleasant.... it is a real problem but most docs do not want to deal with it and people are dying from the complications.....I have been thru h@ll  with mine!! That is why I mentioned this to David. I went thru much of what he is.
Posted 10/11/2012 2:21 AM (GMT 0)
it was good advice, terry, and it will be discussed with my doctor soon

david
Posted 10/11/2012 2:53 AM (GMT 0)
David, I would be glad to talk/ skype with you  and give you particulars with my case ..if that would help
Posted 10/11/2012 2:57 AM (GMT 0)
terry,

i just sent my oncologist a 3 page letter/update based on Monday's Gastro dr. visit, and I included the suggestion of adhesions as being a possible source. Good tip.

Might take you up on the skype session, I just need a chance to re-activate it on my laptop. I had it for a while, but in the end, no one ever contacted me so I took it back down.

Thanks again

david
Posted 10/11/2012 2:59 AM (GMT 0)
Hope you will be seeing your doctor sooner rather than later.
Seems like you have had so many surgeries that you must be full of adhesions. Surgeons like to work on what they call virgin bellies (no prior surgeries) and you my friend would be a big challenge. Good surgeons love a challenge.
Sorry to hear the new medication is not doing much for you.
Thinking about you and sending good wishes.
Zimac
Posted 10/11/2012 3:33 AM (GMT 0)
thank you zimac. if my count is right, i have had 15 operations since year 2000 alone. surprised my insides still hold together, lol.

david
Posted 10/11/2012 9:35 AM (GMT 0)
My goodness - 15 operations is awful!  Then Ron and I thought about it, and he's had 9 since 2005.  His back surgery on collapsed discs C 5, 6 & 7 took the longest to recover.  His colon problems resulted in 4 different hospital stays of about 25 days in 8 months.  Yet, most of his surgeries weren't as intense as yours.  However, knowing this makes him so understanding of your situation which is so much worse.  Chronic pain can be depressing. 

We hope your painful stomach eases up but we wonder if you will need surgery for it?

Much blessing,

Aimzee  Ron

Posted 10/11/2012 1:12 PM (GMT 0)
Aimezee,

No doubt Ron has been through more of his share. I don't like direct comparisom, because I see each person's ordeals as unique to themselves. Nine of mine have been since 2008.

I have now sent a 3 page followup of the Gastro doctors visit and finding to my oncologist, to bring him up to date, and to bounce the ball back in his court. This will give him a chance if he wants to do something before my regular appt. with him late this month. Knowing him, he will jump right on it.

My hunch, is at some point, it will come down to needing to have my non-functional bladder being removed. I dread it, because it will be a long, complex, and risky surgery with all the radiation damage in place. And it will be another long recovery, in the area of 6 to 12 months, and I will have already been weakened by everything else that is going on along with over 2 years of chronic pain. Hoping I will be wrong, but everything keeps pointing back to the bladder.

David
Posted 10/11/2012 2:23 PM (GMT 0)
What exactly is an adhesion?
Posted 10/11/2012 2:46 PM (GMT 0)
David:
so sorry to hear of your continuing problems: thanks for sharing your story, a lot of people wouldn't bother
praying you can get resolution, QUICKLY.

if you're talking football, don't even mention my Chiefs...ugh

take care,bob
Posted 10/11/2012 4:27 PM (GMT 0)
rivergirl, for you:

Adhesion
Pelvic adhesion; Intraperitoneal adhesion; Intrauterine adhesion
Last reviewed: February 26, 2012.

Adhesions are bands of scar-like tissue that form between two surfaces inside the body and cause them to stick together.

As the body moves, tissues or organs inside are normally able to shift around each other. This is because these tissues have slippery surfaces.

Causes, incidence, and risk factors
Inflammation (swelling), surgery, or injury can cause adhesions to form almost anywhere in the body, including:

•In joints such as the shoulder

•In the eyes

•Inside the abdomen or pelvis

Once they form, adhesions can become larger or tighter over time. Symptoms or other problems may occur if the adhesions cause an organ or body part to twist, pull out of position, or be unable to move as well.

The risk of forming adhesions is high after bowel or female organ surgeries. Surgery using a laparoscope is less likely than open surgery to cause adhesions.

Other causes of adhesions in the abdomen or pelvis:
Posted 10/11/2012 4:28 PM (GMT 0)
thank you, bob
Posted 10/11/2012 7:56 PM (GMT 0)
David, what you have gone through is pure hell.  confused    Ron is grateful that he has dealt with just cancer of the prostate.  There are no comparisons to be made.  You have been an inspiration to us - most of us here, too!  We just want you to get better!

That is a good explanation for adhesions.  Not to complain, but Ron has had several hernia operations causing these adhesions.  Yet, the doctors say there's not much they can do as the scar tissue will just build up again.  It is sad that you may need your bladder removed as there is no easy way for you to have that done.  There's just too much going on in your body all at the same time!

Keep an eye on your mailbox in the coming week.  We keep you in our thoughts and prayers!

Hugs,

Aimzee

Posted 10/11/2012 11:54 PM (GMT 0)
Ok thanx David I thought it was when something 'stuck together' but wasn't exactly sure WHAT...great explanation..jeez..I hope you don't have these but if you did at least it may explain your agony...hope you had a comfortable day..
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