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New to Crohn's group, but old timer at HW PC, need some advice

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Crohn's Disease
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Posted 6/14/2014 3:34 AM (GMT 0)
Hello, I have been at HW Prostate Cancer since 2008, also use to post regular at HW Chronic Pain.

Need some general help and advice, it's possible I may have Crohn's, still waiting for test results.

I have dropped from 223 lbs. to 159 lbs. since January 2nd of this year.  A loss so far of 64 lbs.  I am male, age 61, and 5'8".  I am dealing with advanced prostate cancer as well.

From January through March, I started having a greatly reduced appetite, but was still eating 1-2 a day.  Starting losing weight.  From April till current, I have no appetite, and I mean none, zero, zip.  There is never a time I feel hungry or desire food.

I do most of the cooking since my wife works, and even shopping for food, cooking, etc., no longer triggers any response of hunger with me.  If it were not for my wife coming home nightly waiting for dinner, I honestly might not eat for days at the time.

Finally took it up with my PCP.  He was deeply concerned about such a drastic weight loss, especially since I was not dieting, taking diet pills, or exercising.  He did regular blood work on me, thyroid's, etc, but didn't see anything striking.  So he referred me to a good gastro doctor.

Just this morning, I had the upper scoping (can't remember the name) and my 2nd colonoscopy in less than 2 years.  The first one, in 2012, they found a lot of polyps and removed them, none were cancerous.

We are waiting for results.  He took 4 samples to biopsy.  One in my stomach, two in the colon, and not sure where the 4th was taken from.  He also removed new polyps which had grown in that gap from last time.

He's ordered stomach, colon, and chest/lung CAT scans, these have not been done yet.

In passing, he mentioned Crohn's to my wife while I was in the recovery room.  Neither of us know much about it, even with my wife being a nurse.

Could this total loss of appetite and severe weight loss be  tied to Crohns"?

I should add, that I went through a period like this at the end of 2012.  Total loss of appetite.  Went on for about 2 months, lost 25+ lbs.  But it faded away on its own.  The gastro doctor at the time said he couldn't find anything wrong, but he based that on the scoping only, no other testing.

I am not anorexic, I am not depressed.  I simply lost all sense of appetite.  Prior to today's tests, due to how they had me prep for nearly 2 days in advance, I had not eaten a bit of anything in over 60 hours.  Even when we got home from the hospital, I had to force myself to eat a small portion of Cream of Wheat, but really didn't want it.  It still managed to cramp me up real bad.

Sorry this is so long.  Just wanted you to see the background of what I have been dealing with.

Is this possibly a crohn's case in the making?  And what can I do to help myself?  I haven't weighed this little since I was 20 years old, so its starting  to get scary.

Thanks in advance,


David

Posted 6/14/2014 2:33 PM (GMT 0)
I have had Crohns for 27 years and I have never lost weight from it except during the time I had a surgeries. I usually do not lose my appetite even knowing something I might eat will make me sick. The problem with this disease is everyone is different. You state you have advanced prostate cancer, are you getting chemo or any treatment that could make you not want to eat? You probably need to just wait for your test results, good luck!

Deb
Posted 6/14/2014 2:55 PM (GMT 0)
I'm so sorry for what you are going through. It does not sound like typical Crohn's symptoms, but I'm glad you got tested and I hope you sort out what is going on.
Posted 6/14/2014 9:22 PM (GMT 0)
I have experienced periods of time when I did lose my appetite, and would have preferred not to deal with eating at all. Even with forcing myself to eat enough to survive, I would lose some weight, though nothing as drastic as what you've experienced.

Alternately, I've gone through times when my appetite raged even though my poor guts were not healthy enough to process food. This disease is a strange one, for sure.

I hope the tests help figure out what's going on so you can get some relief. You sure are dealing with a lot right now; best wishes to you!
Posted 6/15/2014 12:37 AM (GMT 0)
Any diarrhea, constipation, cramping, or mysterious abdominal pains?


You mention that the cream of wheat made you cramp really bad. That by itself would tell me "don't eat cream of wheat." but combined with the loss of appetite... it could be Crohn's, I suppose. My first instinct would be to look at what medications you're already taking, but it sounds like your doctor already dismissed those.

The loss of appetite/weight can definitely be a Crohn's thing. Happens to me whenever my flare status goes from "simmer" to "boil." Fortunately, that's only been three times: once at diagnosis, once a couple years later, and again two years ago, prompting surgery.

The polyps are interesting, though. I don't think I've heard too much about polyps involved with Crohn's. Crohn's is usually ulcerations and sores and bumps. Usually when I hear about polyps they're either their own benign thing or tied to a form of cancer. Given that you already have a form of cancer, that's particularly worrying.

I hope you get it figured out and dealt with! Please let us know how it goes. Personally, I'm hoping it's a medication or some hormone thing or something, because I'm of the firm opinion that one person should only ever have one chronic illness and its attending ailments.
Posted 6/15/2014 4:38 AM (GMT 0)
Deb, there is no known connection to what is going on with me, with the total loss of appetite and my advanced prostate cancer. I had surgery in 2008, which failed. Major radiation in 2009, which also failed. My oncologist and I have been doing "waiting and watching" since. I am on neither hormone therapy or chemo, so that would not factor into the current equation. Thanks for your input.

Bane, thanks for your input too. Not saying that Crohns has been officially dx. at this point. Just one angle the new gastro doctor is considering.

Most times when I eat anything, and this could include a can of Ensure. I start getting cramped up within 10-30 minutes. Sometimes very severely, feels like someone is twisting a knife in my sides, more so on the right side of my body. Rarely, but sometimes I get low level nausea. I do not ever get heartburn or anything remotely like that.

After the cramping takes place, I would say 75% of the time, I have urgent diarrhea. The other 25% the cramping resolves itself within a couple of hours or so.

Doesn't seem to matter what I eat. I could eat a BBQ sandwich one minute (not something I would normally do), and it may or may not bother me at all. But then even a can of Ensure has put me into deep and painful cramps.

Both the gastro doctor, my long term PCP, and my oncologist have ruled out the Fentanyl and Norco I have been on long term for my chronic pain (coming up on the 4 year mark there). If anything, being on the opiads have helped lessen my long term issue with chronic diarrhea (even before the weight loss problem begin this January). As long as I have been on these meds, I have never been constipated, which is the norm for most people, it actually helped in a reverse kind of way.

I have lost another nearly 5 lbs just in the past 4 days, despite some forced eating. Gone over the 64 pound mark since January 2nd.

What other tests might a gastro doctor do or order if he suspected Crohn's? I will be having multiple CAT scans coming up. I believe he said stomach, colon, chest/lungs, and one other, but can't remember.

I am looking for answers before this becomes an even more serious problem.

Thanks for any advice or response.

David
Posted 6/15/2014 4:42 AM (GMT 0)
Bane, as a "PS", should also disclose I am a 4x cancer survivor of serious cancers. I had 3 bouts of the ultra rare, but dangerous, porocarcinoma, ending around year 2000. First 2 times were in my scalp, and the last time, more dangerous, was in the lymph nodes of my throat. That involved multiple surgeries and my first of two major radiation bouts.

Due to the radiation damage is suffered on the prostate cancer radiation job in 2009, I am the list of being at high risk for secondary cancers to develop. So all my doctors are always on the look out for any new cancers being detected.
Posted 6/15/2014 7:04 AM (GMT 0)
Yikes! That's way too much cancer for one person.

what you describe definitely could be crohn's. but, given your medical history, i wouldn't be terribly surprised if it's a complication of some kind.

regardless, I hope you get it figured and dealt with soon!
Posted 6/16/2014 2:36 AM (GMT 0)
thank you, bane. I do seem to be a cancer magnet. the prostate cancer has been attributed to Agent Orange exposure during my time in the Viet-Nam war This is how I became 100% disabled by the VA.

the porocarcinoma outbreaks, are so ultra rare, no one knows what its root cause was. at the time in the late 90's, I was of only 38 known cases of that cancer in U.S. medical history, talk about rare, and with less than 300 known cases in the world.

the first 2 times, was in my scalp. the 2nd time, it grew back quickly with a vengeance, and involved extensive plastic surgery on my head. according to the latest info, I am only one of two cases in the entire world where that cancer attacked the scalp. I ask myself, how does a person end up being on such an ultra ultra rare list like that? more chances of winning the power ball I would think.

thanks for your help.
Posted 6/16/2014 5:21 PM (GMT 0)
Hi Purg,,,,what a surprise to see you on this forum. I am going to miss you on the PC forum. 

 I am also a multiple cancer survivor. Diagnosed with PC gleason 6 in 2007, still getting zero psa's.  In 2009 I was diagnosed with testicle cancer.  Tumor removed and no further problems.  Last year I was diagnosed with skin cancer mellinoma, also completely removed.  Oh by the way, I was also diagnosed with crohns in 2007.    I changed my diet to the SCD diet and have been in complete 100% remission without one problem since, and without taking any major drugs.  The only drug I take is pentassa, which is real mild when it comes to crohns drugs. 

A little bit of advice, stay away from the ensure or anything that contains sugar like soda or sweets, etc.  Sugar will only increase inflammation and if you do have crohns, it will make it worst. 

 I suggest reading the book "breaking the vicious cycle" which goes into great detail on how crohns can be controlled and put into complete remission by simply changing your diet.  It has worked for me and many other people on this forum.  You have nothing to loose by reading the book.

Posted 6/17/2014 7:18 PM (GMT 0)
I HAVE HAD CROHNS SINCE I WAS 16 YEARS OLD,BUT I WAS NEVER DIAGNOSE UNTIL A YEAR AGO...I HAD A FLARE UP THIS PAST WEEK....SINCE I HAD THE BLOCKAGE REMOVED I THOUGHT I WAS GETTING BETTER AFTER REMOVING FOUR FOOT OF SMALL INTESTINE..THEY FOUND THAT AFTER I HAD AN M.R.I....EX RAY DOSE'NT HELP THEY SEE NOTHING.....BUT ONCE I HAD THE M.R.I THEY SEEN A BLOCKAGE AND I DON'T WISH THAT ON ANYONE.......I SEE YOUR 64 YEARS OLD HAVE TRIED SMOKING MARIJUANA..I SMOKE TO HELP MY APPETITE....BUT MY PROBLEM WHEN YOU DON'T EAT YOU DON'T HAVE STOMACH PROBLEMS...SINCE THE OPERATION I HAD GAN 35 POUNDS...WITCH I HAVE LOST IT ALL....ITS DEPRESSING...I FEEL YOUR PAIN AND

I HOPE THIS HELPS FOR YOU..ASK YOUR DOCTOR TO DO AN M.R.I.......GOOD DAY CHARLES


P.S IF YOU HAVE BLOCKAGE YOU WILL HAVE CROHNS EVERYONE THAT HAD THAT DONE HAS CROHNS...I'M ON FACE BOOK CHARLES POOLE SEND ME A FRIEND REQUEST AND WE CAN TALK ANY TIME YOU LIKE..HANG IN THERE...I HAVE BEEN THERE AND DONE THAT...
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