Update: 08-17-15

Been a slow recovery since getting out of the hospital. Some good days ,some bad days, very random, no pattern. Still having severe stomach cramping, sharp pains in abdomen.

Waiting to have a MR Enterography test ran. Only 1 hospital in my area can perform it, and they can only do one test per day, doctor wanted it immediately, but currently scheduled for August 26. It will perform an up close and personal exam of small intestines. Doctor feels I may have a chronic situation, one with new easy solution. Surgery could help, but could make things worse. Most diet changes will have little if any effect, and no one med can solve it.

Current thinking is that severe radiation damage, and the fact that I have already had 3 major abdominal surgeries in the past, has left my insides with a lot of scarring and adhesions. These adhesions are trying to strangle the small intestines like spider webs and putting the squeeze on them, thus causing the obstructions. The fact this has happened twice in less than a year greatly concerns the GI doctor.

After the test is completed, he will consult with me, to determine, what, if any plan of action can be advised. Once again, I end up with things with no easy solutions, but only adds more pain to already greatly pained body. He realized I was about at my limit with all the pain issues.

I would be willing to undergo a risky surgery, if I had the assurance it would help long term. Even the GI surgeon would not be eager to operate on me with that much scarring in place. The thought of living with this much extra pain on top of the rest of it, is more than I can bear to think about.

Now you can understand why I am never happy to see when some men seem so eager to jump into salvage radiation. The risk is way greater than most RO's will ever admit, and once the damage is done, its too late and there is no going back, ever.

I have tried a lot of forced eating since getting out of the hospital, but I still can't gain any weight back to speak of, the extra eating only accomplishes creating more stomach pain and cramping. They do feel my lack of appetite is directly tied to whatever is going on with my GI systems, so that is progress to some degree.

Wondered where you where mate.
Glad to hear from you,
Mike

Always good to hear from you David. Thanks for the update.
Michael

Hey David,

Thanks for checking in, sounds like the battle continues. I had 3 biopsies before my RP and the surgeon mentioned afterwards about the scar tissue from just the biopsies. I can only imagine what you look like with all of your procedures.

I'll hope for the best for you.

Regards,

Bill from Florida

Praying for you David.

Paul

Thanks one and all.

From the time of my Rp to now, have lost slightly over half my body weight. The GI doctor I just saw, had seen me a year ago, slightly more, and was unable to do a full dx. at the time. He was shocked when he saw me last week, you could see it in his face. He's determined to get this special test done, and get to the bottom of things once and for all.

Went to PT today, always makes me feel worse, a true catch-22. 8 minutes on the New Step Machine, and it caused massive stomach cramps and aches, could barely walk back to my car, thankful I had my walker to hold onto.

Then for the rest of the day, periods of feeling so so, and periods of severe pain. This newish abdominal pain is simply on top of my normal pain, which still covers me most days from my hips to my ankles.

Been forced to go back to using the max. amount of pain meds daily allowed. For a while, I was able to cut back on some of it, and simply tough it out But past week, not able to have that luxury.

So I have to wait till a week from today, before I have the test done, and then later that day, will sit with the GI doctor, who is insisting on having the full test results in his hand. I am willing to consent to drastic measures, if there's any hope of improving my situation, even if it means taking some risk.

Going to attempt the long trip (450 miles round trip) to see my daughter in Charleston Saturday-Monday. Haven't been able to make a trip that far since March of last year. I need to get away, just dread the thought of that long a car trip. 100 miles is about my limit before my joints start to hurt.

Still hoping I will be good for our long over due cruise on Sept. 13th, also out of Charleston. Back to the Bahamas. Good thing about a cruise, is I can rest and lay down anytime I want, and if I don't feel like doing anything, don't have too. Think the ocean air will do my spirits some good.

Been thinking about starting a new book, while I still have the ability to think clearly. Think I could squeeze out one more to add to my list.

All for now, its almost 330 AM, and I have to be on the road by 10 in the morning.

thanks, reachout. glad your srt went fine for you, it does with most men. I am not opposed to it, as some would think, I just think people need to really think through it, and way risks vs. possible results, and to make sure they really have BCR before agreeing. A small rise in PSA doesn't justify the risk in my opinion, my doctor still feels too many men jump the gun on SRT.

Got the prep information for next weeks tests. Have to be there 1 1/2 hours ahead of time. Will involve drinking one type of isotope, then it requires 2 different IV's during the test. She estimates about one hour in the machine for this one.

My only wish is that it could have been done this week. Past few days, the abdomen pain is a combination of severe cramping, and moments of sharp, acute stabbing pains in my lower left side. Not a lot of fun.

Last 48 hours, I have lost almost 3 1/2 lbs, despite going out of my way to intake a lot of food and junk calories. Doesn't make any sense how that can happen. Been drinking a ton of water to stay better hydrated, proof is in the output from my Urostomy. Having to empty the bag on the hour, but so far, even that hasn't been helping my situation.

thanks, chart. today, wasn't as bad, so it's nice to return to a "normal" pain day for a change.

Prayers.. that you are able to enjoy visit & cruise.