Lactose intolerance, patient assistance - New to the forum

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Durango Kid
Regular Member


Date Joined Jul 2009
Total Posts : 330
   Posted 7/11/2009 1:21 PM (GMT -6)   
Geez, I'm thrilled to be on board with everyone here!
I was diagnosed with U.C. about six years ago.  Following the initial diagnosis I was placed on Asacol 400mg two tablets three times a day.  I 've had no flare ups until last november.  This was a brutal flare up.  Lost about 15lbs.  It took three weeks to get into my gastro entemologists office at which point they put me on a hydro cortizone enema that knocked it out.  I have no insurance and this is a very pricey treatment.  about 10 days ago I flared again.  This time I decided to simply go through my family doctor who immediatley prescribed prednisolone.  I finished the first six day packet which seems to be keeping the flare up at bay, but not back into remmision.  He has refilled the prescription and that's where I now stand.  The prenisolone is $4.00 pr week as apposed to about $125.00 for the enema.
 
I have a couple of questions. 1) I suspect I may be a bit lactose intolerant.  Prior to this flare up I had some ice cream several times which I normally don't eat.  Is this typical?  2) Are there any patient assistance programs available for the hydro cortizone etc.?  I am getting help with the Asacol as this is an expensive drug also.  I went through a femoral bypass about three years ago and attaining affordable insurance at this point is pracically impossible.  Any input is appreciated.  Thanks, Durango Kid
 
I just added at title to your post :-)

Post Edited By Moderator (Red_34) : 7/12/2009 8:19:15 AM (GMT-6)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/12/2009 8:21 AM (GMT -6)   
Hi and welcome to Healingwell :) I can not handle dairy while in a flare but I seem to have no issue with it while in remission as long as I eat/drink it with moderation. Lactose intolerance is actually quite common for people with digestive issues. What symptoms do you have when eating/drinking dairy?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 7/12/2009 9:52 AM (GMT -6)   
Durango Kid:

I am lactose intolerant in general. Since being diagnosed, I haven't been able to manage liquid dairy. When flaring, I can't handle it at all. :( But, if you need some help with alternate things to have, you can try Lactaid. Personally I don't like soy, so I encourage Lactatid. There is also Lactaid Ice cream which totally tastes like reg Ice cream. Hope that helps.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009, off Canasa on June 30th 2009.
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.
*Started minor flare in mid June 2009 but VERY minor. :(


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 7/12/2009 10:43 AM (GMT -6)   
I'm lactose intolerant too. In remission I can handle ice cream (dairy queen ONLY, nothing else), cheese, yogurt, basically stuff with minimal dairy in it. I haven't had a glass of milk in probably 8 years. In a flare I can't eat anything with dairy, it goes right through me and it isn't just gas. I get the worst cramps ever and I feel like I'm going to die...
Now I drink lactaid milk (I think I'm allergic to the soy?) and take the pills when I suspect some kind of food might be too much.
Sam(antha)
20 year old college student diagnosed with UC in March 2005
Remission since January/April 2006-->THREE YEARS!!!!!
Trying Colazal 3 750mg x2-->LOVE it!
25mg Elavil
75mg Effexor XR for GAD

"If you don't like something, change it. If you can't change it, change your attitude."
Maya Angelou


Durango Kid
Regular Member


Date Joined Jul 2009
Total Posts : 330
   Posted 7/12/2009 11:51 AM (GMT -6)   

Thanks for the title Moderator.  My symptoms when I eat or drink a lot of dairy are mostly a general gassy, bloated stomach and intestinal tract.  I didn't flare for five years after my initial diagnosis.  Both of my recent flares have come after I've eaten icecream or drank a shake.

The prisnsolone prescribed to me is a card of 4mg pills.  You take six the first day, then taper down daily and finish with one on the sixth day.  I went through one card and It seemd to keep my flare under control , but hasn't knocked it out.  We are trying one more card.  I'm reading on this forum that people are taking 40mg of this.  I'm confused about dosage.  I'm dealing with my primary care physician this time aroud as last time it took three weeks to get an appointment with my GI.  By that time the flare was out of control.  I'd like to be armed with as much info as possible when I visit him in a week or so.

Durango Kid


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/12/2009 2:05 PM (GMT -6)   
The dose you are on is more or less designed for other things (such as poison ivy, rashes, asthma etc) and it is not a treatment level for Uc'ers. If you can get help with a lower dose then that is great but the majority of Uc'ers need a higher dosage to get their flare under control.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/12/2009 2:29 PM (GMT -6)   
The dosage of steroid you've been given probably won't help you much. Generally we're prescribed a starting dose of about 40 mg for two to four weeks, then taper the dosage by 5-10 mg. a week to slowly discontinue the medication. You may have to work with the GI again, as this dosage of steroids scares the heck out of a lot of primary care doctors.

The 10 mg. Prednisone tablets that we usually take are generic and quite inexpensive, so that may be a help too.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Durango Kid
Regular Member


Date Joined Jul 2009
Total Posts : 330
   Posted 7/12/2009 3:12 PM (GMT -6)   

I have a follow up visit with my primary care physician soon.  I will discuss this with him.  I suspect the hydrocotizone enema will be the next step.  It worked for me last time, but as I said it's expensive...Thanks for your input.

Durango kid

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