New here with new diagnosis...

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FairyGen
Regular Member


Date Joined Jul 2009
Total Posts : 142
   Posted 7/27/2009 2:49 PM (GMT -6)   
I was just diagnosised with UC.  It seems that things that I thought were normal with my body aren't. 
 
I originally thought I celiac's/DH because of a rash that I had for atleast 10 years.  So 6 months ago I went gluten free.  I also felt 100% better.  Blood Test was negative but hey I felt better and the rash was gone.  It was an itch rash that no matter what I couldn't get rid of and would often scratch till I bleed in my sleep. 
 
Heres the catch...When I quit gluten I also tried to quit smoking with the help of a nicotine patch for 8 weeks.  It was all down hill from there.  I was diagnosed with being hypercoaglable due to some gene mutations I inherited.  Then I suddenly broke out in a rash from poison ivy even though I never reacted in the past.  Then I started having even worse allergic reactions to what turned out to be shellfish even though I was on antihistamines already. 
 
So I take pred for 3 weeks and that clears up. All during this I would have periodic cramps and loose stools 2 or 3 times aday.  Not watery, but more the consistancy of thick mud. It always woke me up at 5 am no matter what.  The only time it didn't was when I was on the nicotine patches.  3 weeks ago, I started having to go 10 or so times a day including up and down all night. 
 
So I finally go to the ER when I go so dehydrated that my lips were cracking.  They tested for all the usually microbes since I had been camping the previous week. They sent me home with Flagyl and Imodium. They suspected giardia but it takes a few days to get those results.  The flagyl made me sicker (turns out it has lactose in it). After 5 days I went to the regular GP who then got me that day to a GI.  I had a colonoscophy and recieved the diagnosis of UC. 
 
I have refused Pred.  Things are better, I am down to 3 or 4 times a day with some form but I think still mucus. Blood will never visibly show cause I don't bleed, I clot very fast.  I have figured out MILK does a number on me. 
 
I go back to the GI tomarrow to put a plan of action in place.  I am very concerned with taking too many meds.  I am allergic to alot of meds.  So far I have been only taking some Good Belly Probiotics, Tummeric and Bromelain.  It seems to help, plus I have been avoiding milk like the plague. 
 
Can anyone offer some things I should remember to ask him or give me some pointers on side effect from meds? 
 
Also a question:  If I am horribly flaring is there any reason to take meds? 

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/27/2009 6:33 PM (GMT -6)   
When I was first diagnosed I hesitated to take medicines too, but things ended up getting worse. So, my advice would be to work with your GI doctor try to get this flare under control soon, and don't be too hesitant about taking medicines. If you're unsure about taking something then ask your GI specialist why he/she thinks that would be the best option for you.

The CCFA website has a description of the treatment options, side-effects, etc. that you can read up on and be better prepared for tomorrow.

Hope it goes well.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/27/2009 8:07 PM (GMT -6)   
I am sorry for your diagnosis! It is a good thing you found this forum, which is chock full of support and answers.
With that said, the whole "no meds" route is definitely one that people have the option to take, but I do not think you will find much support on this forum for it.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 7/27/2009 11:00 PM (GMT -6)   
Hi FairyGen..welcome to the forum!

It's difficult to say what meds you will agree with...it's possible the 5-ASA meds would agree with you fully compared to the immunosuppressant/biologic meds.
That being said, because you have other possible allergies, the immunosuppressants might be your best bet.

I think you should, however, request from your GI or GP to send you to an allergist to have testing done...that might help get some of your issues cleared up regarding foods and environmental allergens or sensitivities.

If you were to consider the 5-ASA meds, starting the oral one at a lower dosage and increase can eliminate some side effects that mimic UC (yeah, weird)...and with the rectal one, you could start with the 2g dosage of retention enema.

You're definitely in a tough place considering you have lots going on. Do ask the GI to do the appropriate blood tests, liver panel blood tests, etc since if some of them are increase, that could lead you to other issues that might be going on that you hadnt considered.

Please keep us posted as to how the appointment goes with the new GI.

quincy
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 7/27/2009 11:01 PM (GMT -6)   
forgot to add....ask the GI where exactly your UC is...throughout or limited (to where).

q
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/28/2009 7:34 AM (GMT -6)   
Amywaffle, there's actually a number of people on the forum who are on the 'no meds' route and managing well with particular diets and nutritional supplements, but it takes time to work through different things and find what helps get you to remission and keep you there.

I support the 'no meds' route, but believe that someone who has just been diagnosed and doesn't know much about treatment options, diet, supplements, might be better off taking medicines to get the flare under control asap and then look for alternative treatments.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


FairyGen
Regular Member


Date Joined Jul 2009
Total Posts : 142
   Posted 7/28/2009 10:13 AM (GMT -6)   

Thanks for all the replys....

I ended up back on pred for a week to clear up a muscle problem.  What am I to say when 2 of my Dr's say I need to take it.  I think My flair is mostly gone.  I am down to 3 to 5 times a day with some form and small amounts of mucus. 

I have allergy testing next week.  I am definatly sure milk is a problem.  I drink milk or have some cheese and I start cramping and have to go with in an hour.  That was also happening everytime I took a flagyl.  Flagyl has Lactose in it! Go Figure!

If it get in full fledge flair like I was I would consider meds.  I just want to put as little stress on liver as possible because I am afraid I will get PBC. My mother has it (all though I am wondering it she has PSB instead) I have a question for those on urisol ? Does it make you have frequent D? 

I do feel kinda stupid because for years I though it was normal to be woken up to have a BM and that 3 to 5 times a day was fine.  I also though the mucus was just cause I am so vigilant in getting plenty of fiber and I didn't know it was mucus!

I hate being on pred.  Even for a few weeks.  I have enough issues with weight with out having to swell with pred.   I am allergic to sulfa drugs so that rules out the sulfazyme.  


FairyGen
Regular Member


Date Joined Jul 2009
Total Posts : 142
   Posted 7/28/2009 10:24 AM (GMT -6)   
Oh and I have left side UC. It was just in my rectum and the next part. I get my biopsies tomarrow.

Funny thing is I had to stop wearing contacts because of uvelitis in one of my eyes and no one ever suggested I see a GI Dr, just quit wearing contacts was all I was told...
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