needed: words of wisdom

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mom of four
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/25/2008 5:54 PM (GMT -6)   
Hello,  
     I'm new to this site..  I am a 32 y/o female.  I have been having constant symptoms of UC since June 08.  I thought if I just ignored it it would get better.  The year earlier I had symptoms, not this bad, and my 'then' MD told me it was just IBS.   Well after being miserable for 2 months I finally went back to the MD...That and my husband made me!  He again told me it was probalbly just IBS and it would get better.  I demanded to go to a GI MD.  
     The GI MD told me I needed a colonoscopy to dx UC for sure.  So I had one and he tells me I do have UC.  He said it's mostly in my descending colon/rectum.  So normal tx is sulfur drugs but I'm allergic to them.  I tried the ememas but I must have alot of inflamation down yonder cuz I can't even keep them in!  So he started me on Lialda 2.4gm daily. After 2months I didn't feel any better.   So he put me on taper prednisone 40mg...Which I'm still taking.  It's been 4weeks of faithful steriod taking and I still don't feel better.  And now It's waking me up at night. 
      I just went for my monthly MD visit today and he wants to put me on 6mp till xmas then if that doesn't work he said he'll add remicade infusions as well!!  Really, this is the next step??  I'm having a hard time excepting the fact of taking 'chemo-meds'.  I have four young kids at home...  I really don't know what to do.  
      Does anyone have any non-med suggestions??  I'm so frustrated!!  And tired of scoping out the next bathroom!  I heard someone say low carb diets?  biofeedback?   Thanks Becky

sore_guts
Regular Member


Date Joined Jun 2007
Total Posts : 185
   Posted 11/25/2008 6:27 PM (GMT -6)   

Hi and Welcome.  I totally get where you are coming from.  I am 36 and have 2 young kids.  I was in pretty much constant mild flare for several years.  After the birth of my 2nd child it became unbearable.  I could barely function I was so dehydrated and anemic.  I uped my asacol.  Went on pred and was told the next step was either remicade or 6mp.  Like you I could not believe that was the next step.  Especially with young kids, how can you go on immune suppressing drugs permanently?  It didnt sound good to me.  I started looking for anything to buy me time to avoid those heavier drugs.  I found probiotics helped a lot - I use Digestive Advantage available at any drugstore.  I also finally reached remission thru diet recently (if your interested see the recent posts on spinach/sunflower seeds). 

As far as meds go here's a few options -  I would first ask your Dr if you gave the lialda a fair chance - 2.4 is not the max dose.  Thats only 2 lilada pills a day.  I think the max is 4/day.  So maybe you could try upping that first to see if any improvement.  Also maybe another try of the rectal meds is worth a shot.  There are some tricks to try to keep them in.  There are lots of experts here with helpful tips if you decide to go that route again.  There are also steriod rectal meds that maybe would be helpful? 


 sore_guts
 
Currently in Remission since June 2008!!
 
High magnesium/ beta carotene diet
36 year old female with left-sided UC
lialda 1 pill  3 times/day
multi-vitamin 1/day
Digestive Advantage Colitis formula 1/day
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/25/2008 7:20 PM (GMT -6)   
I agree with sore_guts to ask your GI about the steroid rectal meds, seeing as your UC is down low and accessible. As far as trying 6MP until Christmas to get results- that sounds strange, because from everything I've read, Imuran and 6MP take 2-3 months to kick in and often several times that long to really get momentum (did nothing for me but is wonderful for some), i.e Christmas would not be a fair try. Remicade however can start kicking in within days to weeks (some seem to take longer; it started to help me after about 2 weeks) and some GI's feel that its safety profile is now proven enough to consider it a first line of defense for anyone who doesn't respond to or is allergic to 5ASA drugs, as opposed to a last resort. No "riskier" I think than 6MP or Imuran but more benefit is my view, but it is ultra expensive unless your insurance covers it fully.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 15 mg pred, 100 mg Imuran
TCM, Probiotics (PD, Cust.Probiot., Culturelle, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


mom of four
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/25/2008 7:44 PM (GMT -6)   
Thanks Probiotic and Sore-guts.... I do think I will ask him about uping the Lialda dose and finishing this round of prednisone. I will also ask again about the steriod suppositories again too. I also read that the 6mp takes up to 3 months to work. I think he just see's me as being very frustrated and wants to put me in remission quick. I just want to do it the safest way.

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 11/25/2008 8:11 PM (GMT -6)   
Get the hydrocortisone enemas. Trying to treat the rectum and sigmoid colon by mouth is like taking the scenic route with a van full of kids on the way to Disney Land. Makes you miserable. Before you use one take one of the bottles and empty it and fill with distilled water. Lube the tip up with some A&D ointment to avoid more irritation to the rectum. Warm up the water in the sink and put it in. If you expel it, well that's fine.... do it again. If you expel that one, no big deal, do it again. If the next one seems to stay in a little better, get up on the toilet let it out and then use the cortenema. Warming it up seems to help a little for me, and by doing this your not pooping your money down the toilet. You can take a water bottle and put your distilled water in it and just warm up 16 oz at one time so you don't have to keep warming up individual enema bottles. There's no harm in doing this.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Immuran
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA

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