UC For 30+ Years. Do I Really Need Meds Now?

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hangfire
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/28/2009 1:46 PM (GMT -6)   
New here. Been reading lots of the posts here and I think I have learned the lingo. After reading what a lot of you are going through I am going to feel a little guilty about my post.
 
Heres my story. about 30 years ago, at age 20, I had a severe bout of "d". After a few weeks I ended up in the hospital for 2 weeks and near the end of my stay there, a colonoscopy was done and the outcome was UC. I think a lot less was known back then and I was told that I am going to have this for the rest of my life and don't eat this, don't do that, avoid this blah blah. I was 20 years old and invincible so it went in one ear and out the other and I did the exact opposite of what they said.
 
For the last 30 years though I have had just about no symptoms. Maybe once a year I have a single instance of "d" which is limited to a single BM and the next BM is normal. I think even people without bowel disease get the "d" once in a while. I never have any pain or discomfort or urgency. The only real symptom I have is once every 1 to 3 years or so I will see some small streaks of blood after a BM. When this happens it will last anywhere from a single instance to seeing the blood on and off for a week or two. I am on no meds and never give any thought to what I eat or drink.
 
about 18 months ago I the dreaded age 50 colonoscopy - the only one I have had since my diagnosis. The result was 2 polyp's one of which tested pre cancerous. I asked If he saw any UC and he said no. Because I had a precancerous polyp he said he would feel more comfortable if I had another colonoscopy in a year rather than the normal 5 years. I had that colonoscopy done about 2 months ago and wouldn't you know it - in the couple of weeks before the colonoscopy I started seeing the streaks of blood but since the colonoscopy I have not seen any. I just went for my followup visit for the colonoscopy results and the crap hit the fan. The doc seemed very concerned and said you have UC and  this can get bad overnight and has to be treated and you need meds. He sent me home with sample bottles of Apriso and said come back in 6 weeks to see how you are doing.
 
I really don't know what to do but  I'm leaning towards throwing the pills out. I can't see myself swallowing 4 big horse pills daily at a cost of $200 a month when I have just about no symptoms. Maybe after taking the pills I'll have symptoms or side effects. On top of that how would the doc gauge my "progress"?. Whats he going to  say - "hows your colitis? "
 
Sorry for the long post. Just hoping someone here can give me some advice.
 
 
 
 
 
 
 
 
 

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/28/2009 1:58 PM (GMT -6)   
     Wish I could only take 4 "horsepills" a day!  Instead, I take nine "horsepills" a day (Colazal), 30 mgm of prednisone, 100 mgm of 6MP, Cort enema nightly and Canasa suppository in the morning.  In addition....probiotic, Calcium, Fish oil capsule, multivitamin and blood pressure med.  Need Ambien CR to sleep because of the insomnia caused by the prednisone and xanax because of the anxiety.
     In the numerous colonoscopies performed on me (had UC since 98), not once have I had a polyp....just ulcerations or I should say...healed over ulcerations when performed while not flaring.  I've been flaring since the end of May...ulcerative proctitis and really stress over the fact my paternal grandmother died from cancer of the rectum at 65 and I am almost 63.
     I believe what you have had for the last 30 yrs is more IBS than IBD.  I would definitely be concerned about those polyps and go for those yearly colonoscopies.  My cousin only had a tinge of blood in her stool, ignored it and didn't see blood for another six months.  When she went for the colonoscopy she had stage 3+ cancer of the colon.  So you don't want to mess around.
     It is up to you whether you stop taking the meds.  They may just keep your symptoms at bay.  I never  heard of Apriso.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 7/28/2009 2:06 PM (GMT -6)   
Hi..welcome to the forum!

It's awesome you got through bouts of flares with minimal disruption to your life..not all of us has that priviledge.

But, things do change with the course of the disease and some can get worse to the point of having refractive disease where no meds can control it...reason difficult to determine.

I would suggest you ask the doctor for rectal 5-ASA meds as well and use them in conjunction with the Apriso to get the inflammation controlled. You can taper them to a maintenance level.

5-ASA meds are believed to help with the prevention of cancer as well...I believe it's because of keeping the inflammation down as best as possible. Of course, some cannot take them.

I'm hardcore 5-ASA meds, both oral and rectal...have been for 20+ years and dread the day they stop working for me.

Please reconsider....but if you go down the path of least resistance regarding why you don't want to use them...that's the way you'll go.

Give them a chance at least. It's still a first-line med, and if you consider the alternatives, you may want to do more research on the meds and clarify your reasoning.

Be well,
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 !!!
 

Post Edited (quincy) : 7/28/2009 2:48:39 PM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/28/2009 3:02 PM (GMT -6)   
Well I think the issue is really what risks are you willing to live with?

If I understand correctly, you have gone 30 years with UC and no meds and have been basically fine. Now all of a sudden the GI wants you to take meds. Maintenance meds are used to keep inflammation down which in turn reduces the risk for colon cancer.

No one can predict how UC will go. One would think that 30 years with the disease that you might never flare again. However, I have several UCers with long term remission who's lives were turned upside with a severe flare. I can't tell you which is a better decision; you will have to guage that for yourself.

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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/28/2009 4:20 PM (GMT -6)   
I would get a second opinion, because my instincts tell me what you have going on is not really UC and that you don't need the UC meds. It might just be a little colitis, which some people get now and then and is not chronic.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 7/28/2009 10:12 PM (GMT -6)   
Did the gastro check your bloods and comment on your ESR or antibody profiles? Have you seen your pathology report from the latest c-scope? I'm assuming that after each scope you've been told you have UC because the doctors found clinical evidence of it. I agree that you need regular monitoring if a polyp had precancerous cells; things can happen, especially after age 50. Probably the gastro wants you to take oral mesalamine because its anti-inflammatory property lowers the risk for development of colon cancer. Apriso is the latest oral mesalamine to come on the market in the U.S.-- so your doctor probably has a pharma rep pushing samples to try out. Did he give you any? You could ask to try a sample to gauge how you feel while on it. I can understand your reluctance to start on maintenance med since you've lived a basically asymptomic life for 30 yrs, but if you really do have UC, it can flare up at any time. So don't throw out those pills-- at least, not for the next yr or so-- store them in a cool, dry place in case you need them later on. / Old Hat (30 yrs with left-sided UC ... [etc.])

rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 7/29/2009 12:37 AM (GMT -6)   
Interesting situation. I think you have reason to be skeptical of the diagnosis, the recommended treatment and your GI. Therefore I would concur with the suggestion of getting a second opinion. The question of meds vs. no meds is a crap shoot. Let me assure you that if you get into a bad flare you will wish you were on the meds which may but don't always help to lessen the severity of the the flare and make it easier to get into remission. A run away flare as you may remember from the experience you had 30 years ago is no fun

It is definitely possible that you had one episode/flare of UC and have been in virtual remission for thirty years. Some people have a flare and never have another, unusual but it does occur. It is also possible you don't have UC. There is a definite protocol for diagnosis, a second opinion would make me, if I was you more confident that it is UC. If you are paying for the meds there are many cheaper ASA types then the one that your GI has given you. 30 years ago you would be on sulfasalazine it is very cheap and effective and still used by many on this board. Some people cannot tolerate it but every drug has share of side effects. So you have options but I would start with a second opinion.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8358
   Posted 7/29/2009 12:48 AM (GMT -6)   
hangfire -
 
tell the doc thanks butt no thanks, then toss the meds -
 
seems to me after 30 years you might know your body just a little better than he does -
 
good luck -
 
Lonnie
diagnosed with pancolitis december 21, 2003
currently taking: NOTHING !


hangfire
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/29/2009 12:15 PM (GMT -6)   

Hi All. Thanks for your replies. I'm pretty much in the dark about this disease as I have put it out of my mind for 30 years. I'm sure it will be hard for me to put it out of my mind now with my doctor planning a colonoscopy every 12 to 18 months. I'm starting to enjoy them.

I do have some thoughts and a question though. My eating habits are a disgrace. I think nothing of getting up in the morning and eating anything leftover in the fridge - pizza, hamburgers, hot dogs,  pasta, chicken or my favorite - cold spaghetti and clams. I continue to pick at food almost constantly through the day but never sitting for an actual meal. I not much into junk food but I do have a weakness for strong cheeses and spicy dried sausages and the like. At night though I sit down for a large meal and then almost immedietely go to bed. There is probably a lot of room for improvement in my diet. Maybe I'll start eating a can of sardines every morning when I first get up. Its a start.

One or two of you mentioned maintenance and tapering of the meds. I have not started taking the meds the doc gave me. Since I have no symptoms would there be any benefit of instead of taking 4 football size pills (Apriso) every day, just taking one or two?


Post Edited (hangfire) : 7/29/2009 1:39:15 PM (GMT-6)


LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 7/29/2009 1:35 PM (GMT -6)   
If I were in your shoes, I'd start eating a little healthier and keep the medication hidden somewhere (too expensive to throw out). If you have no symptoms over the next year, see what your next colonoscopy shows. In the meantime, if you have symptoms for more than a few days you can start taking the meds and call your doc.
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)

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