My own little update

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mdf34
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Date Joined Feb 2010
Total Posts : 925
   Posted 8/28/2010 1:18 PM (GMT -7)   
So.....I have had my own batch of concerns and questions which many of you helped address.  Now that I have some answers I thought I would pass along some of the info.  My best thoughts and wishes go out to many of you going through so much worse crap than me right now (Nanners, sniper, NCOT, et. al.)
 
My last follow-up with the GI I got to ask my questions.  He also was still reluctant to call it crohns until this visit because he was trying to avoid making it a permanent mark in my medical record until he found out that I cannot get past 2 weeks without having an issue.  So he jumped right to the big guns going to Remi.  Which will have a $25 co-pay per infusion.
 
The hair loss I have been noticing...........cause.....this DD!
 
My eyesite, which I went from perfect vision straight into progressive bifocals........Cause.....being over 40.
 
When I asked about the bruising around my eyes someone, I forget who, said it was FLARE related, had it spot on!  Cause...This DD!
 
Weight loss.......as we all knew, although he asked if it was intentional, this DD!
 
Bone density scan.........revealed Osteopenia (I think thats the word) which is the precursor to osteoporosis, I have a low bone mineral denisity and my bones have already started thinning (WTH!!! Already!!!).....cause....this DD!  43 year old male is going to have osteoporosis before his wife........I am sure she will see some irony there since she is older than I am.
 
Sugar/calorie cravings that cannot be ruled with will power......this DD........GI said go with the cravings because your body is asking for something.  Since my last blood work was great and I am losing weight he said don't sweat it too much.
 
Pain in testicles before, during and after an episode........cause......this DD!  He said that the pain can radiate outward.
 
Tension between my wife and I...........over my fears of eating, freaking out one night when seeing me rocking in pain while sitting on my patio (I was doing it unconsciosly I guess) and arguing over what I think I should eat versus what she thinks....Cause......this DD!
 
Cost of it all:  Priceless, when you need something theres Mastercard.
 
Thanks all for listening and advising.
 
 

Post Edited (mdf34) : 8/28/2010 6:43:29 PM (GMT-6)


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/28/2010 3:30 PM (GMT -7)   
I just wanted to say I think you have a great coping skill and it will serve you well, don't lose it. I've been dealing with this DD my whole life since my mother had it and I have it too so I know that you have to find a way to get through the tough times and you seem to have a good sense of humor. The good times will come eventually.

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 8/28/2010 5:29 PM (GMT -7)   
Glad to hear you have a good sense of humor. I'm 43 and going to have Osteoporosis b4 my wife too.. I had to chuckle to that one.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/28/2010 6:08 PM (GMT -7)   
Sorry for all the trouble... It is a very frustrating and upsetting disease that seems to impact everything about our lives, not just our guts and bathroom habits.

I wanted to say, as a 42-yr-old who was dx with osteoporosis 2 years ago (thanks, DD!), there is a *great* medication out there for your bones. It's called Forteo and is not one of the bisphosphonates. It actually stimulates bone growth as opposed to just slowing or stopping bone loss. It's probably not likely to be prescribed until you hit that magic number of -2.5, but it's there. The FDA only allows 2 years on it (at least I've been told, but I read on here someone who'd been on it 3 years). It's a daily subcutaneous shot, but doesn't hurt a bit. I can't wait to see what my 2 year marker DEXA reads! Honestly, I was even rattling on about it to the pharmacist the other day. I have 4 months left... I'm personally a bit scared of the bisphosphonates, especially since the risk of TMJ is higher with concurrent steroid use. ;-( So this was like the best news I've had, medically speaking, in 4 years!

Good luck!

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/28/2010 6:59 PM (GMT -7)   
Hey, if it makes you feel any better, I was diagnosed last year (at 31) with osteopenia...before either of my parents. I haven't even taken steroids that much...

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/28/2010 7:33 PM (GMT -7)   
I wish it did!
 
One other fact I forgot to mention above
Only about 30% of people with CD test positive for the antibody in bloodwork.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/29/2010 2:44 PM (GMT -7)   
SR, I was given a number but did not get it written down.  My primary doc also called about this.
 
What is the abbreviation TMJ?

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/29/2010 7:53 PM (GMT -7)   
Hey,,no fair,,I only have osteopenia,,,,for now ...I think all my bone stuff has been passed out in the form of kidney stones. Had I saved them all, could have built a stone house . The good news lots of bone has been redistributed around my spine and neck vertebrae in the form of spurs . If my body is asking for something its chocolate cake and ice cream but my doc says , dont give it what it asks for,,diabetis. You know what, when I was young I thought I was indestructible, now I think I'm irreparable . Hang in there mdf. They call these the golden years. I think all my gold has been used by doctors to buy golf clubs .
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/30/2010 6:36 AM (GMT -7)   
Yeah probably titanium Ping's.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/30/2010 3:13 PM (GMT -7)   
What does TMJ stand for please....I am not having much luck figuring it out.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/30/2010 5:38 PM (GMT -7)   
Too Much Jam ???
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/30/2010 9:10 PM (GMT -7)   
Took My Juice?

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/30/2010 10:43 PM (GMT -7)   
Temporomandibular joint disorder (TMJD or TMD) - basically a disease that can kill the bone in the jaw. Commonly referred to as lockjaw, though that is not entirely accurate. If you look this up along with the bisphosphonates (Fosomax, etc.) you will see there is a big connection. That connection is stronger with the use of steroids while on the bone meds. Forteo is not a bisphosphonate, so it does not carry that risk. Plus! Not only does it stop bone loss, but it actually increases bone mass. My endocrinologist estimated 10-20% bone gain each year on the drug (I understood). That's why I can't wait to see my next DEXA score after 2 years on it! I figure I will no longer have osteoporosis, just osteopenia, which is really not all that bad at the higher numbers.

Post Edited (sr5599) : 8/30/2010 11:50:23 PM (GMT-6)


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/31/2010 6:22 AM (GMT -7)   
Crap,,,would prefer too much jam , or , took my juice to what it really stands for...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/31/2010 6:32 AM (GMT -7)   
Yeah, I was thinking the same thing!  I would rather cry about someone Taking My Juice.........I can always buy more of that.
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