waiting out UC?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/20/2008 5:59 PM (GMT -6)   
hey everyone~~~ So I'm wondering if any of you think it's possible to wait out your UC? I've always been under the impression that UC tends to lessen with age- the frequency of flares, the strength of the flares, etc. I've also been under the impression that one's immune system ages as we do, slowing down, etc. Now neither of these have been proven, mind you. I guess I'm wondering if the people on here who were diagnosed like 25+ years ago, if you've seen your UC get better as you age? I feel like if I can just wait it out, it'll go away on it's own, or some other new wonder-drug will hit the market. I know there was some talk about this recently, but figured I'd throw it out anywway.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 2/20/2008 6:43 PM (GMT -6)   
My UC is better after 19 years, but I use the 5ASA meds (oral...constant) (rectal ... increase/taper) properly treating flares earlier and earlier.

My last c-scope was basically perfect with very mild low rectal inflammation. A huge plus since diagnosis 19 years ago.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LWW1993
Regular Member


Date Joined Oct 2006
Total Posts : 90
   Posted 2/20/2008 6:57 PM (GMT -6)   
Interesting theory.....I'm not near the 25+ years, but after 15 years (wow, I can't believe it's been that long) mine is worse. sad I would love to get back to when I was first diagnosed. It was much more manageable then.
Diagnosed UC - 1993
32 year old female

Current Meds:

Prednisone - 40 mgs (starting to taper, was at 60 mgs.)
Colazal (3 pills three times a day)
Probiotic


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/20/2008 7:25 PM (GMT -6)   
that's so disheartening! I wish I could be like you, Quincy, & have success with only the 5ASA's- you are very lucky!!! What is dicyclomine?  My UC has gotten worse too- I was fine the first 3 years or so, then it all went downhill. Of course, this was prompted by me going off my meds because I was feeling so good! And I've never been able to get it under control since. I just feel like if it comes up out of nowhere, UC, why can't it just go away out of nowhere too? That's gotta happen sometimes!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


LWW1993
Regular Member


Date Joined Oct 2006
Total Posts : 90
   Posted 2/20/2008 7:30 PM (GMT -6)   
Eva Lou - Don't give up hope. I still think that after 15 years and choose to believe in my heart of hearts that some day UC will no longer be an issue for me.
Diagnosed UC - 1993
32 year old female

Current Meds:

Colazal (3 pills three times a day), but flaring again and need to go back to GI
Probiotic


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/20/2008 7:33 PM (GMT -6)   
Considering mine wasn't even diagnosed until I was past 50, I doubt I'll be able to outlive it.

Seriously, though, I've never seen anything supporting this. Probably in the past you didn't see so many older people with UC because the ones with minimal problems kept it to themselves and the ones with more problems didn't live that long, what with cancer, anemia, etc.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/20/2008 7:33 PM (GMT -6)   
but how do you decide to live gracefully and gratefully with it?!?!? I've become so depressed lately- I know it's because all my meds aren't doing a darn thing, I should have gone ahead & gotten surgery a few months ago. Then I think "Well, it's ok- I can live with this!" But I don't see how- it just gets me so down. How do you deal? Do you anticipate getting surgery ever?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/20/2008 8:10 PM (GMT -6)   
I was dx 13 years ago this year,and things have gotten a lot worse.As each year passes,it takes much longer to control a flare,with ever increasing meds,and I stay in remission for less time.I'm going to see how the next 18 months to two years go,before maybe biting the bullet and opting for surgery.

Sorry to sound so bleak,everyone's different,but that's how things have gone for me.

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/20/2008 9:19 PM (GMT -6)   
Hmm Does Uc get better as we age?? Well for me personally, no it hasn't. When I was first diagnosed, I was in major denial and didn't take my meds properly but when I did take them - my Uc flares were managable. Now that I'm older and have had this for almost 16 years, I'm finding it harder to control my flares and most of the 5-ASA (oral and rectal) don't sit so well with me. I truly see myself in the future having surgery but as to when, I've no clue. Right now, I'm doing pretty well now since I've manage to get this flare under control and the surrounding circumstances to my flare. But, like SL said, we are all different so who knows? But interesting theory :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/20/2008 9:42 PM (GMT -6)   

My UC got worse with age, not better.

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


serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 2/20/2008 9:51 PM (GMT -6)   
I still hold out hope too!! Granted I've only had it for four years, but I keep hoping that after grad school when I can finally get on a decent sleep schedule and eat right, and not have as much stress over exams, that things will get better. One of my mom's friends said hers went away after she got pregnant! Trust me, I'm in no rush to have kids, but it's something I hold out hope for in the future. Plus, if it's genetic, my dad didn't have UC but something like it during his 20's and he's been perfectly healthy since. I keep my fingers crossed!
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas


pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 2/20/2008 11:41 PM (GMT -6)   
I've had UC for 14yrs and it has gotten worse with age. I've had to progressively take more medication and stronger meds. It would be great if it just runs it course someday, but it's not looking that way.

Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 2/21/2008 1:44 AM (GMT -6)   
Eva Lou said...
that's so disheartening! I wish I could be like you, Quincy, & have success with only the 5ASA's- you are very lucky!!! What is dicyclomine? 


Hopefully the 5ASA meds will work for a long time....salicylates are a miracle from my perspective.

I also have PSC...UC-related liver disease....my theory is that if the UC stays calm, so will the PSC considering it's a fatal disease. 

Dicyclomine is an antispasmodic....The brand name in Canada is Bentylol, in the US it's called Bentyl.

If my UC got to the point where functioning is getting me down and meds weren't working any longer, I'd definitely consider surgery..as scary as it is to think about it, I trust the fact that the ones who have had it say they have a life again.  That sounds good to me.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/21/2008 1:51 AM (GMT -6)   
I know for crohns they've discovered a cluster of genes that dictate the severity and behavior of the disease over time but I don't know if researchers have discovered anything along those lines regarding UC...IBD is very unpredictable to say the least.

It's the nature of the beast unfortunately.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/21/2008 11:23 AM (GMT -6)   
thanks for the replies, everyone. I am in somewhat better spirits today- after seeing a toilet bowl filled with bright red blood last night at work (of course it happens AT WORK!), today has been relatively quiet. I also spoke with my GI this AM- we are doing a colonoscopy soon, with a mild prep- half-lytely, I think it's called. It's not as caustic as the other types, so it won't do any harm, just flush everything right out. After we check out the scope results, I have to make the decision to either contact my surgeon AGAIN, or try Humira. I would like to try humira, but I agree with my GI when he says that in all likelihood, the humira would work like the remicade- do great things for a very short time. And I can't discount the side effects & possible dangers these meds pose either. Since no one's UC has gotten better with age, I sort of doubt mine will too. I don't know.... it just gets very tiring, mentally & physically, living with this disease. I am pretty freaked out, but I do foresee surgery in my future. I would like to wait 'til the Summer, since my child will be out of school. When I had surgery scheduled this past November, I went thru sheer emotional he**, trying to prepare myself for it, but I think this time around I just have to suck it up, so to speak.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


MicheleV
Regular Member


Date Joined Sep 2004
Total Posts : 233
   Posted 2/21/2008 12:29 PM (GMT -6)   
My gastro told me at 19 that my colitis would get better with age too...Hmm.  Not in the least!  sad   My flares each got more difficult to manage and old drugs that used to work, no longer did.  My last flare up lasted years, and I was a flipping wreck.  I am in remission at this point, and will stay on maintenance drugs forever I think.  My scopes on Imuran are the best they have ever been.  Im due for another one this Summer. 
 
If my life includes Imuran forever..so be it.  I am definitely not outgrowing this disease anytime soon apparently :-)
 
Michele


Currently in remission since September 2004!!!  I am on Imuran 150 mg and am LOVING life!

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