The first major flare I had went undiagnosed by an ER doctor and I thought I was going to die. I was having 15-20 bloody BMs a day for around 4 weeks. I could barely leave the house. Basically, it seems to have went away on its own, but about
2 years later (May 2013), I had a flare that resulted in hospitalization for 14 days. At this time, the VA diagnosed the problem as severe UC. Nothing would bring it into remission except Remicade which I've had regular infusions of since. When I was released from hospital, I was prescribed oxycontin for abdominal pain. I thought it might be too habit forming, so I requested my former primary VA doctor to switch me to Tylenol 3, which she did. Initially, she only prescribed 90 pills that did not seem to get me through the entire 30 day time period. I requested a quantity increase and my former doctor changed the prescript
ion to 135 pills per month so I could take "2 pills, two or three times a day as needed." I've been taking Tylenol 3 for more than a year. Therefore, I think I have some first-hand, practical knowledge with reference to how well it works for UC symptoms. It might not be good for me, but along with the Remicade, it does seem to keep my UC from being a problem. Diet doesn't seem to have much to do with my symptoms. Within 30 minutes after I am awake, I begin to have symptoms. Then I think, "Maybe if I eat I'll feel better." More discomfort follows. Sleeping can even be disrupted by the abdominal growls. If I take 60 mg of Codeine, my symptoms seem to mostly disappear for 4 or 5 hours. In my case, the negative side effects seem almost non-existent. Sometimes, I can become sleepy or slightly dizzy for a moment or two. I might not have the best coordination possible. That's about
it, that I know of.
Recently, my newly assigned VA primary doctor has communicated that four to six Tylenol 3 (30 mg of Codeine each) pills per day is "too many," not for "long-term use," and only "for cancer patients." According to my research, up to 240 mg of codeine can be safely taken in a 24 hour period. In fact, one VA pharmacist I spoke with by phone agreed with the last statement. However, my new primary doctor, who has spoken with me once in person and once on the phone, has reduced my prescript
ion from 135 pills per month back to 90 pills (she only allows me to take 1 pill three times a day) with the condition I "sign a contract" concerning following the prescript
ion, subjection to random urinalysis, not mixing with alcohol, not getting more meds anywhere else, not hoarding them, not sharing with others, risks, etc. None of those are a problem except that I usually need more than 3 pills per day. Most often I need 4 pills per day. My attempts to relate this have fallen on deaf ears. Essentially, this brilliant VA doctor seems to have already made up her mind that I intend to abuse the drug. The truth is, though, that I haven't taken a drop of alcohol or an illegal substance in more than 24 years. I feel harassed for having contracted a disease instead of being helped to live a more or less symptom-free with Remicade and Codeine. The reason I think Codeine is effective is that A) when I take 4-6 pills a day, I feel pretty well all day with normal BMs, and B) whenever I taper off of Tylenol 3, I immediately go into a flare. The last one was a miserable experience, lasting 4 or 5 days with constant abdominal pain, headaches, and diarrhea (5-15 times a day). During these times, Imodium seems useless and regular Tylenol seems insufficient.
The truth is, without Tylenol 3, I have symptoms that interfere with my work EVERY DAY or I must risk overdosing on Extra-strength Tylenol. If I take enough regular Tylenol (ie, beyond recommended dosage), it will help with abdominal pain but does nothing for diarrhea. So, I don't really care if Codeine MIGHT cause other health problems because without it I am CERTAIN to have continuing problems on a DAILY basis. I told the VA medical team pharmacist who met me with the doctor's contract that I wasn't prepared to sign the new doctor's contract until the doctor gets my dosage correct. My prescript
ion is about
to run out. Now, I argue back and forth with myself whether I should learn to be a better sufferer or beg for another reduced prescript
ion which could certainly increase my quality of life for at least 3 weeks out of each month. Yeah, I just love being treated like an adolescent or dope-fiend after earning both bachelor and master degrees in education and being completely sober/drug-free for the last 24 years; this is not the kind of treatment I expect for somehow contracting a legitimate and thoroughly miserable disease from which it is perfectly normal to seek relief.
Addendum August 2014:
The last time I ran out of Tylenol 3, I did NOT go into a flare. I decided to try to stop taking Tylenol 3 altogether and it now turns out that over-the-counter pain relievers, antacids, and gas x pills (along with continued Remicade infusions) are usually working to make my days tolerable. I've begun alternating between Extra-strength Tylenol and Ibuprofen on particularly bad days so as to try to avoid over-dosing on Tylenol. Occasionally, I don't need to take anything at all, which is a very good thing. If I've learned anything through this, it would be that I should be thankful for reasonably good health. That was something I had taken for granted for many years.
48 year-old, male
Diagnosed May 2013
Previous ineffective meds: Omeprazole (20 mg), Dicyclomine HCL (20 mg)
Current meds: Remicade, Tylenol 3, Extra-strength Tylenol, Calcium Carbonate, Simethicone
Post Edited (yeahok) : 9/2/2014 9:28:49 AM (GMT-6)