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IHATEIBD
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/28/2008 6:52 AM (GMT -7)   
Well hello everyone..
 
I'm a 41 year old guy living in the Boston area.  I was diagnosed with Crohns about eight years ago, after I suffered a bowel perforation in the Sigmoid.  Was a mess, ended up taking Sigmoid, most of transverse colon and anastamosis (re-joining) of the ends of the bowel that was removed. 
 
The majority of my CD issues are Ileum, with some small bowel involvement.  Through legal wrangling, my employer at the time (a major multinational firm) terminated me, revoked all of my benefits, including long-term disability.  In Mass, as I was to find out, this is completely legal and leaves you with no recourse.  Soon after, I applied for Social Security Disability, and was approved on the first pass, after only two weeks... from what I understand, that is simply unheard of.  For what it is worth, I was not the only person terminated in this way, in fact, employees who had what was to be considered chronic disease were specifically targeted for "Layoff".  In Mass, it's very easy for a company to make an end run around the law... and yes I consulted several attorneys, who all arrived at the same conclusion- I have no reasonable recourse against what they did.  The stress of all this of course only made my disease worse.  After a time, it just made no sense to persue it further as the impact on my health was too great.
 
I have become a stay-at-home dad for my two children, due to the frequency of my illness I am simply not employable.  I've spent a lot of time learning ways to relax and not let the world get to me, which as any crohnie knows is critical in keeping the disease managable.
 
To this point, Immune modulators have been off the table, as I have the kids in public schools..which means they bring home every germ on the planet.  Shutting down the immune system has been deemed to be a last resort for me.  I got no relief from Cipro/Metro, 5-ASA's, and pretty much all the other standard therapies.  When I have had severe flares, Prednisone has worked, but at a tremendous cost-- I am a poster child for Roid Rage.. can't sleep, and just plain pissed off at everything and everybody any time I am on it.
 
about six weeks ago I began having severe lower back pain, which I originally thought might be a pulled muscle or strain from exercise.  Instead of getting better with time however, it has been getting worse.. and at the moment, I'm now waiting to hear back the results of spinal xrays, the concern being possible Ankylosing Spondylitis (fairly common with CD), a kind of arthritis frequently associated with other autoimmune disorders.  At this point, I am capping maximum safe dosages of Tramadol (Ultram) to help with the pain, but at 400mg a day and more, it barely is taking the edge off.. I'm no stranger to pain and have passed 5mm kidney stones (also crohns related) with only Tramadol.. a fact which my pain specialist was blown away by.
 
So... hello all, I've got a lot of experience with the disease as well as a pretty solid medical background.  I'm happy to help folks out if I can, don't be shy-- experience has taught me some tricks in dealing with this thing as well as the almost mandatory Depression that comes with chronic illness and pain. 
 
Nice to meet you all!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/28/2008 7:08 AM (GMT -7)   
Nice to meet you too IHATEIBD. I see you have been thru the ringer with this lovely (not) disease too. I wanted to welcome you to Healingwell. You will find a wonderful group of supportive and friendly people here all trying to just live day to day with this DD. I think you are going to be a wonderful asset to this forum and will be able to share your experience with all the disease has brought to your life. Once again, welcome and we look forward to hearing more from you.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


IHATEIBD
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/28/2008 7:26 AM (GMT -7)   
Well, thank you much. :)

As you know, the term "Gut Feelings" becomes much more true than you could have imagined once this thing gets ahold of you. As I have discovered, the largest impact you can make with the disease is often learning how to cope with what it does to you, what it takes away, and the isolation it can sometimes bring. Knowing others that face the same things you do is a huge help many times..

This thing can get the better of you if you allow it to, and fighting it on the mental and emotional front is sometimes as important as any medication that may be given to you.

This thing is rough, but it does not have to be the end of a reasonable life. Hang in there, it's all good...

Post Edited (IHATEIBD) : 8/28/2008 8:35:50 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/28/2008 7:33 AM (GMT -7)   
Welcome to Healingwell IHATEIBD!
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/28/2008 8:07 AM (GMT -7)   
Welcome Bird -- though I would note one point about your post. Immunomodulators don't really "shut down" the immune system, they just ratchet it down a couple of notches. Some people on 6mp or imuran do report more colds and such, but not all. I've been on 6mp for about 6 years now and aside from some more frequent sinus problems, no trouble . . . a lower dose might be worth considering if it would alleviate CD symptoms and the need to go on prednisone periodically, which probably batters yuor immune system even more.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/28/2008 8:07 AM (GMT -7)   
I don't get why you aren't on some immuno-modulator. Many people are on these with kids in public school. They don't shut down your immune system, and some people actually report that they get less colds while on them. I would consider this if I were you, given that it doesn't sound like your disease is under control.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/28/2008 9:36 AM (GMT -7)   
Hello Ihateibd, and don't we all. I have been on Azathioprine for years, raised 2 boys, and rarely catch any virus. I'd rethink that one. It helps me tremendously. As you can see by my signature, I too have dealt with alot. I would be in much worse condition without Aza.

Great to have you here!
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 8/28/2008 2:55 PM (GMT -7)   
Hello ihateibd.

I agree with the others about immune suppresants. I run a home daycare and have kids in public school and am taking Imuran. So far so good for me.
Chances are you would catch less from your children than the general public.

A few extra colds ould be better than the nasty pred side effects.
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: 3.2 grams Asacol, 150 Imuran (just started June 08), back to 10mg predisone, probiotics. For asthma I take Advair 500, singulair, arieus


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 8/28/2008 9:17 PM (GMT -7)   
Kudos to you for being a stay-at-home dad! That's something we don't see enough of in this country! Your kids are going to be better off for it, I'm sure. I was on Imuran for over a year, and it didn't work very well for me, and my doc took me off of it just this past week, and I'm waiting for insurance approval for Humira. But it works great for a lot of people. As for getting sick more easily being on it, I was worried about that too. I'm a home visiting parent educator, so I go into a lot of homes with a lot of kids. (and not always the cleanest homes, some have probably never had a can of Lysol in their lives) And there is almost always something going around. And I have only gotten sick once, a cold, and I didn't even have to take a day off of work for it. My son was home for a week with the flu, even was on Tamiflu, my husband caught it, and it didn't get me! I was shocked, my boss kept waiting for the call that I had been taken down by the bug, but it never happened! Just my opinion, but I think that by having a lowered immune response, my body was able to get rid of anything that invaded me, but without it causing a huge uproar in my system.
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


Tj1
Regular Member


Date Joined Jul 2008
Total Posts : 71
   Posted 8/28/2008 9:41 PM (GMT -7)   
Welcome ihateibd, I've only been here for a short time but have found this to be a great bunch of people who are very caring, supportive and informative.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/28/2008 10:02 PM (GMT -7)   
Hi IHATEIBD - Welcome! I was wondering if you have tried any of the alternatives if you don't want the usual meds? Diet is the toughest one, but some get benefits from it. Unfortunately, no wheat is really tough with kids in school and more restrictive diets are just that much worse. There are still a couple of possibilities. One member here reports good results from taking bee propolis capsules. Another recommends turmeric capsules. And another possibility is coconut oil supplements. These are all either anti-inflammatory or antibiotic or both.

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 8/29/2008 10:46 AM (GMT -7)   
Welcome to healing well! Like you, I get crazy roid rage when on prednisone. Even my poor dog runs away from me when I get angry! I just wanted to welcome you, this site has helped me out tons! Take Care!

-Emma
turboemma.blogspot.com/

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