What to do now - damage control?

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mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 4/20/2008 12:11 PM (GMT -6)   
I just turned 34 the other day...I am now at 14 years with UC - started left sided, now pancolitis.  I have never really experienced a full remission - always some kind of symptoms.  Right now my symptoms are considered mild / moderate.  I am on 12 asacol a day, probiotics, and fish oil...was just on pred but no real luck.  I was waiting to get on remicade until my wife got pregnant, which she did, and I was going to start treatment...however last week she miscarried at 9 weeks so its back to square one....I am hesitant to start remicade treatments until she is pregnant...  Also, I had a pituitary tumor removed 6 months ago and my GI is hesitant to start remicade until more research is done looking into the tumor.
 
Ok, here is the kicker...  I own a business and have full health coverage benefits.  My wife is office manager.  All of our eggs are in one basket.  I am getting nervous as to some potential ugly scenereo's that can come up.  If I get sick enough to be hospitalized or require surgery, my company may not exist without me being there.  If it closes, we loose health benefits...and all income..  I am not so worried about the income because we have savings and a lot of equity in the business to be ok for a while, but the medical bills can get dangerously high....
 
Advice question - should I look into having my wife get a full time job somewhere else w/ benefits for us in case something happens? 

Since my UC has never been under full control, I am getting scared of what is to come.  I may be having to head down the path of surgery due to the risks of colon cancer and my situation.  I still want to try Remicade first but I remain skeptical about it too... 
 
For years I always said I wouldnt resort to surgery unless my life was at risk...sadly I think that day is coming...  I dont think I have much more time to wait for that miracle cure...and the current UC drugs arent doing the trick....
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety), Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/20/2008 1:39 PM (GMT -6)   

I can only share with you my experience.  I had UC for 12 years, the first 10 years were in remission.  The last 2 years were in a flare that I could not get control of and was considered prednisone dependent.  I cycled through all the known medical treatments and then decided on surgery so I could get my life back.  That was 7 years ago.  I have never regretted my decision and sometimes wished I would have opted for surgery sooner.  At this point, if you have never had remission, what makes you think you will ever acheive it?

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 4/20/2008 2:10 PM (GMT -6)   

If you can get someone to take your wife's office manager position it may not a bad idea for her to get a job that offers health benefits for both of you.  Alternatively, even though the business seems to rely on you, do you think you just might be able to find someone who can take on your responsiblities and keep the business running?

It's wise to plan for the worst but I hope things work out for you before then.


Rio, 32 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprine 175mg, Prednisone taper from 60mg - Now on 10mg; 2/08: added 2 Pentasa x 1mg on alternate days.


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 4/21/2008 8:57 AM (GMT -6)   
There is an insurance that you can get as a small business owner that protects the business if you get sick (and in doing so I believe that it will also take care of your wife as an employee and any other employees). I'm not sure what the name of it is or all of the specifics but it's probably worth looking into. I heard about it on a CNBC show where they showed people that had gotten really far into debt and they indicated that had one person had this insurance it would have saved his business and his personal financial life (he was sick for approx 2 yrs with cancer). Sorry I can't be more specific but I saw the show several months ago and since it didn't apply to me I didn't write anything down about it.

Ducridr

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Tums EX - 2 - 3x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 5mg (started at 40mg Nov 07), multi-vitamin, calcium and vit d supplement, potassium supplement, Junel FE (BCP)

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