Hi, I'm a newbie (suffering from Proctitis)

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Playback
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/3/2009 12:38 PM (GMT -6)   
Hello all,

I stumbled onto this forum while doing research on Asacol. I thought I'd join and say hello.

I was diagnosed with Ulcerative Proctitis when I was 15. I saw a proctologist, who put me on Asacol and a prescription suppository whose name escapes me at the moment. When I was 16, going on 17, it went into remission and I discontinued the medications. When I was 18, and just starting college, the symptoms returned, this time far more severe. I'd run to the bathroom six or seven times a day, feeling like I was about to have a severe bout of Diarrhea, then...nothing but a lot of loud gas. I went back on Asacol, going up from 6 to 8 pills a day, along with a prescription enema that I had to retain overnight (what a pain in the ass). When I was about 21, almost 22, the symptoms started to subside a bit. I think what helped was an unrelated injury that left me hospitalized for a week. I was bed ridden, and consequently, had no need to move my bowels. I can't really prove it, but I think that gave the last six inches of my intestines a change to heal a little. I was able to discontinue use of the enemas, but remained on the Asacol, cutting back to 6 pills a day. I also was able to cut back my doctor's appts. from every six weeks to twice a year, and then once a year. By 2005, he gave me permission to start cutting back on my Asacol dosage. I think I was about 23-24 when I stopped taking it completely.

I have considered myself in remission since about 2005. I'm 27 now, and in the last month or so, I have suffered a flare up. I'm not really sure why it flared up all of a sudden. I know most medical experts think that diet and lifestyle have nothing to do with it, but I don't agree. I was drinking a beer or two a day, along with taking blood thinners like extra strength aspirin and prescription ibuprofen have had an effect. I was also eating pretty much whatever I wanted. I'm lactose intolerant, but that usually only keeps me away from milk and ice cream. I used to be able to eat cheese and yogurt. I was also eating a lot of spicy and/or exotic food.

I have since stopped drinking alcohol, carbonated and caffeine products, lactaid, and have stopped eating anything with cheese or spicy ingredients. I tried switching to Tylenol, but that upset my proctitis too, so I'm not taking any kind of painkillers at the moment. If I get a bad headache or joint ache, I just grit my teeth and bear it. I've also started using benefiber, although I'm not sure how effective this really is yet. I don't have any sort of medical coverage anymore, so even if I wanted to see my proctologist (which I don't) I couldn't afford it. The last couple times I saw him, he had nothing new to tell me, and we also had a heated discussion on whether or not diet helped or hurt. I insisted that staying away from things like soda and dark green vegetables helped. He looked at me like I was crazy. My plan now is to try and get in touch with my family doctor, shelling out the money for an appt., to see if he'll write me a prescription for Asacol that I can use to order it from Canada.

So there's my story. I know my problems are not severe as most on this board, but any advise would be most appreciated. Thanks for reading!

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 9/3/2009 1:03 PM (GMT -6)   
Hi and welcome!
Honestly, I think what mostly contributed to your relapse was not staying on your maintenance meds (it's pretty much required for those of us with UC/UP) and taking NSAID pain relievers. The spicy food and such could very well make the situation worse, but I'd bet the other two things were more responsible for the relapse. And, UC just goes through periods of flares and remission...it's the nature of the beast.

As for not having insurance, please go to the thread at the top of the main page (titled UC resources) and go to the last post. It has a link you can go to for information about patient assistance programs for prescription drugs (I'm 90% sure Asacol, Canasa, and Rowasa have programs) and for a list of free and sliding scale clinics.

As for enemas being a pain the the butt, a lot of us on here use them as maintenance (I do them twice a week). Yeah, it's not fun, but if it helps me stay in remission, it's more than worth it!
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Current meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, OrthoNovum, multivitamin.


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3648
   Posted 9/3/2009 1:17 PM (GMT -6)   
I think fruitgirl is right - if only you'd stayed on the Asacol, even a smaller dose of it......! It's important not to go off it completely. And - I once went into a full-fledged bloody flare from taking Advil. That's one of the possible side effects of NSAIDs - even people without these Ulcerative P. or C. diseases can have bloody D!

I hope the resource guide has some helpful info for you!
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills a day
Metamucil - 2 doses a day
Cortenemas or Rowasa from time to time
VSL#3, Ultimate Flora Critical Care
Flax Seed Oil
Bee propolis as of 9/2
Canasa as needed


Playback
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/4/2009 7:55 PM (GMT -6)   
Thanks for the advice. Its appreciated.

I saw my family doc today, and he prescribed thirty days of Asacol, and a round of Methylprednisolone. I've been on this all day, and I'm already starting to feel better, oddly. I'm taking two Asacol a day.

For anyone worrying over the price of Asacol, I got a 30 day supply from the local Super Walmart for 100 bucks. I know thats a lot of money, but I've seen some other posts on here about it costing 300-400 dollars at places like Wallgreens.

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 9/4/2009 9:13 PM (GMT -6)   
Do you have a GI doc? If so, I'd go see him for another opinion. I agree with fruitgirl about the meds being a long term thing than until you are feeling better.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007with minor yearly flares)
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. :( Ended Aug. 21, 2009. :D


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 9/5/2009 4:04 PM (GMT -6)   
30 day supply for 100 is a good deal. I went to Walmart once and asked for the price and it was 70 dollars for 36 pills. I take 9 pills a day, 36 doesn't last long.
 
I have no insurance and you can get free Asacol through Proctor and Gamble. The problem I am having is that it takes a long time to get the drugs and there are a lot of regulations that have to be followed so you can get the drugs. I've been trying to get my prescription refilled for over a month. I don't know if I should blame it on the PA program or my Dr's office but communication is lost somewhere and the bottom line is that no one cares about the patient. They just want the situation off their plate so they blow you off. After a month of waiting, running low on Asacol (the only thing that keeps me from being in a flare), a bunch of calls back and forth, I am still in the same position I was in when I began. For weeks I was led to believe my prescription was being filled and shipped, the other day I called to see when it shipped and I was informed that it didn't ship because they couldn't read the signature on the prescription. Nice to tell me... I call the doctors office to get a new prescription and now, a month later and almost out of meds, with no insurance, my doctor pulls this 180 on me saying I need to get blood work before she can give me a new prescription. I don't have insurance so getting blood work is going to cost me hundreds - but that aside, by the time I get blood work and get the result to her, I will definitely be out of meds. I called the office to explain the situation and the office manager told me that my doctor would send a prescription for 30 days to the PA program to hold me over until I can get the blood work. I called P&G to see if the prescription had been filled and surprise surprise, it hasn't. Not only has it not been filled but they actually can't fill a prescription for less than 3 months worth of meds because they are a mail order pharmacy. Now I have to wait until Monday and call again, see if they will ship the smaller quantity, which is doubtful, so I will have to call my dr's office back and deal with the woman who has absolutely no desire to help and explain that they won't fill the quantity they are requesting and that I am running out of medication. I have explained this to her 5x and she keeps acting like it's the first time she's heard about it. After all of the discussion, she asked if I could fill it at another pharmacy. She clearly has no idea of what is going on or why I am getting the drugs through P&G even though I have explained the full situation over and over. Very annoying... It would be so much easier if I could just go to a pharmacy and get the drugs but no way I can afford 70 dollars every few days. Even 60 pills for 100 would only last me a few days @ 9 pills a day. So now I have to make an appointment with another doctor, pay for that, pay for blood work, and probably buy drugs at a ridiculously overpriced pharmacy because people can't communicate things in a timely manner.  
 
Canasa has a great PA program and you can pick up the meds at the pharmacy. You should definitely get enrolled if you need rectal meds.
 
On an aside, why do people who doesn't desire to help people work in medical offices?
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
Horrible relapse: August 08 - December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
Canasa nightly + Asacol (9/day) + Probiotics + Iron
 

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