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RACERGIRL
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/12/2010 11:15 PM (GMT -7)   
So I just signed up on this forum this evening and I have already gained so much valuable information.  I can't believe that I haven't come across this before.  For the last week or so I've been at the beginning stages of another flare up and kept telling myself to get online and look for some more information.  I have been putting it off, not only because I've been working 12-14 hours a day, but also because I really didn't expect to find any new earth-shattering advice that was going to make my life oh-so-much better.  Little did I know there was this place where other dire souls like myself were handing out earth-shattering advice for free!!!  I feel ill-equipped with my very little knowledge but I am always more than willing to give out free advice, whether anyone wants it or not. smile   My very familiar sounding story is as such: about a year and a half ago I had been having some stomach problems, mostly just the usual sick feeling with revolving bouts of diarrhea and constipation.  It didn't seem very surprising, stressful career, working long hours, not following good eating or excercising habits, blah blah.  One fateful Friday as I was leaving work, BAM!  Literally, next thing I know I'm on the floor so sick I can't even get up.  I'm thinking stomach flu, this is followed by bleeding (never had that before) finally to the ER (more than 24 hrs. and much pestering by my sister later).  ICU, almost into cardiac arrest, many pokes and prods and a week later I come out with a diagnoses of food poisoning.  The only problem is that I'm still having a lot of pain, and bleeding, and sickness.  So we'll just fast forward past a lot more poking, prodding, testing, misdiagnosing, and a few Dr.'s later they concur that I have some kind of colitis.  So my tests kept showing up as Ischemic Colitis, which usually is in people in their 70's and I'm in my 30's so the Dr.'s say it's from being dehydrated and the tests were inaccurate.  (All of them?)  Fortunately for me, my colon is very stubborn and doesn't like to be called a liar, so after another pretty bad flare up, (in the exact same area) another hospital stay, and more Ischemic Colitis results it was decided that the results probably weren't inaccurate that many times.  The problem is Ischemic colitis doesn't show up in the same area and it's a blood flow problem but the angiogram shows that I don't have a blood flow problem.  So anyways, this time it did enough damage that I had to have a resection (June of 09).  They took about 13" of my Sigmoid, which went pretty well for the most part.  I was recovering well until about a week and a half later when I got a blockage in my small intestine and had to go back in for emergency surgery to fix that.  That put me behind as far as recovery but all in all I was lucky and healed up well.  After the resection the Dr.'s narrowed it down to Crohn's and I guess that has been made my official diagnosis.  Since then I guess this is my second flare up, or maybe still the same one that I've been having since September,  I'm really not sure.  I started having some bleeding and really bad pain again in Sept. and went back in to the Dr.  At that point I wasn't on any medication for the CD, I just had Lortab for the pain.  I was given Bentyl, which I absolutely hated and would rather have Freddy Kruger ripping out my guts than take that.  Now I'm taking Elavin and Lortab.  Keeps the pain at bay and I've pretty much figured out what I can and can't eat.  As long as I keep my regular diet and eating schedule I don't do too bad.  So it's mostly just the pain and the bleeding now and the fact that I'm so tired all the time.  Never used to need to sleep more than about 4hrs a night and now I will sleep 12 or more if someone will let me. 
 
I have a plethera of other things going on too: ADHD so I am on Adderall XR 30mg, Anxiety I now take Celexa for that (Effexor before), Hypertension-Lisinopril, Chronic Migraines-Topomax 50mg daily and Relpax 40mg at the onset of one, Right now I'm taking 75mg of the Elavin at night and the Lortab 10-500's as needed in the day.  (I also have the Lortab's for some compressed discs that I have in my back. Have deterioration between some of the discs that has baffled the Dr.'s because of my age and no history of injury or accidents.  I am now wondering if it's from the CD because I've read that it can cause bone deterioration in Women??)  I've had Cortozone Shots, A Nerve Burning Procedure, Physical Therapy, Decompression, and I own every device ever made for lower back problems.
 
I guess after this really long post (sorry, ADHD) any and all advice is greatly appreciated.  My New Year's resolution for 2010 is no hospital stays and I would like to keep this one. wink

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/13/2010 12:32 AM (GMT -7)   
Bone deterioration in me as well and I'm male. First in my early 20's I had a mysterious loss of bone on the inside of my knee caps. 5 surgeries in total to smooth the bone down so it wouldn't cause more damage. Then it stopped. Remision is my belief. Age 30 it came back this time in my upper jaw. Years of arguments with periodontists and 2 surguries and finally at age 40 had my top teeth removed on Dr.s advise so the bone loss would stop and I could get dentures while enough bone was still avaliable to use them. Remision again. Was diagnosed 6 years later. The tired part might be a medication. I have 2 that cause extreme fatigue (it builds up slowly) Prednisone and a 5asa called salofalk (in Canada).I just figured out the salofalk and am almost off it. At the worst 16-20 hours sleep a night was usual. I know how a bad back can be and hope you find some relief Rob
Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on 5-asa Salofalk ,Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. Entecort, Imuran and Prednisone in the past.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/13/2010 12:34 AM (GMT -7)   
scoolAnd by the way Welcome to the healing well forum!smilewinkgrin
Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on 5-asa Salofalk ,Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. Entecort, Imuran and Prednisone in the past.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/13/2010 2:02 AM (GMT -7)   

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/13/2010 4:55 AM (GMT -7)   
Welcome to the forum..
Maybe talk with your doctor about different types of meds or seek another doctors advise.
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.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/13/2010 7:28 AM (GMT -7)   
Welcome to the best Crohns forum out there. I would suggest you talk to your doctor about getting on some type of Crohns medications. Things will not improve until you treat it. I am a big proponent of maintainence meds. I learned the hard way what this disease can do when left untreated, I ended up in an emergency surgery. So please do get onto some kind of med. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 1/13/2010 7:52 AM (GMT -7)   
Hi and welcome. Lots of great people here and now one more. Hope you not only find info and insight but have a little fun too...
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.

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