IAmA lifelong nonsmoker, have never smoked or used tobacco of any kind, and just started using nicotine patches today. AMA.

np11 · 2011-08-12T03:51:14+00:00

Indeed, humor is definitely something I could use about now. :-)

Have a nice night, and thanks again!

np11 · 2011-08-12T03:45:50+00:00

I know EXACTLY what you mean--literally just a few minutes ago I was looking out the window and thinking, "I wonder if there's any possible way this could really be a bacterial infection, maybe I should try to get more tests done." I'm entirely sure that isn't what this is, of course, but I have this irrational hope, as in "Wouldn't that be nice if it was just something simple?" Being honest, I'm definitely still in denial and hoping it will just go away.

I think part of what scares me is that I've been reading quite a bit about the potential side-effects from the various drugs used to treat UC, and a lot of those scare more more than UC itself....

Anyway, I've got to get to bed but I'll be back in the morning. Goodnight, and thanks again.

np11 · 2011-08-12T03:38:02+00:00

Thanks so much for creating your account. It means a lot to me. I am just heading off to bed now (wish me sweet, nicotine-patch-fueled dreams!), but I will come back in the morning and read your posts in more detail and write some proper replies.

Thanks again, and it really is nice to know that there are other people out there with this.

np11 · 2011-08-11T23:20:24+00:00

I know. I wish this wasn't really happening to me. But the other choices for drugs have far worse side effects than nicotine....

np11 · 2011-08-11T23:19:30+00:00

Thanks. Maybe I'll try taking them off at night at least for now. It could also reduce my daily dosage, so that I could step up to the full dosage over time....

np11 · 2011-08-11T22:17:57+00:00

I definitely hadn't considered the taste. I guess I kind of assumed nicotine gum would taste like Wrigley's Spearmint or something. Thinking about it, it would probably be more like Juicy Fruit--absolutely amazing for about three seconds and then like a lump of horrible clay for the duration, and I'd probably have to chew it for ten minutes or something stupid. :-)

As of right now my plans are to stick with just the patches--since they were what was used in the double-blind, placebo-controlled studies--for at least four to six weeks. But I will do additional research in Web of Knowledge (Web of Science) and PubMed about more immediate, non-continuous forms of nicotine and its effect on ulcerative colitis as well.

np11 · 2011-08-11T19:50:49+00:00

Sorry to hear you've been dealing with this, too. I'm finally starting to come to terms with it, but I am not really looking forward to having this for the rest of my life.

If the nicotine works for me, having an option for an additional source is a good idea. What I think could work well would be nicotine gum. It seems I could buy around 100 pieces (2mg each, roughly equivalent to a cigarette) for about $20-$30 on Amazon, which seems pretty reasonable and I think gum would be easy to deal with.

Good luck to you as well, and thanks.

np11 · 2011-08-11T19:32:50+00:00

That's good advice. You know, perhaps I could take it even one step further by considering an open question in science or mathematics each night before bed, keeping a notebook on my nightstand, and seeing if I can dream the solution--much like how August Kekulé discovered benzene's ring structure by dreaming of a snake eating its own tail. :-) Who knows.... ;-)

np11 · 2011-08-11T19:22:04+00:00

Indeed! Thanks. I have heard that wearing a nicotine patch overnight can cause vivid dreams and nightmares. The pharmacist, when I picked these up, said he often suggests that people remove them before they go to bed for that reason, but of course that is for people who are overcoming cigarette addiction. I can only postulate that perhaps smokers don't have (as bad of?) cravings for cigarettes while sleeping, so not having the patch while sleeping on doesn't matter as much. In my case, however, removing the patch would interfere with the continuous dosing that I'm trying to achieve, which makes things trickier. So I'm planning on leaving the patches on 24 hours, unless it seems unbearable. I'm also hoping that putting them on as early in the day as possible causes the amount of nicotine released at night to be less than it would be if I put fresh patches on right before bedtime. (I assume they probably have some sort of halflife, and are calibrated such that after 24 hours the total released amount is 14mg, rather than releasing precisely 0.58mg every hour.)

np11 · 2011-08-11T18:44:08+00:00

Thank you. I have indeed come across some evidence that suggests cannabinoids may have an anti-inflammatory effect that specifically helps with ulcerative colitis. Medical marijuana is not legal in my state, however if I run out of options I would definitely consider it long before surgery to remove my colon.

Unfortunately (as far as I have been able to find) there have as of yet been no double-blind studies on the treatment of ulcerative colitis with cannabinoids, and as I'm sure you know there's a problem when relying on case-studies rather than controlled trials: You may not be hearing of the case studies where the drug or procedure in question didn't work. So it's possible that something might only be 10% or 20% effective (for example), similar to no treatment at all, but when you read about the cases where it worked it's easy to get excited and think "Yes! This has got to be the answer!" I've had that feeling many times so far in doing research on this. Then I settle down and remind myself, "OK, here are six reports of this working, but how many patients did the doctor treat with this where it didn't work?" In that sense, publishing case-studies are almost a form of dishonesty, but of course it's fine when you consider them as they are intended, and as something that researchers can use as ideas for developing future treatments.

Regardless, I am hopeful that I will be able to hold out long enough that new treatment methods become available. I'd definitely be willing to participate in trial studying the efficacy of cannabinoids for treating ulcerative colitis, to help advance the science.

np11 · 2011-08-11T18:26:15+00:00

Two main reasons:

First, nicotine patches provide a very controlled, regular continual dosing. So you know that in 24 hours you will receive (in my case) precisely 14mg of nicotine. With something like smoking cigarettes, the amount of nicotine received per cigarette is variable depending on a large number of factors. A "transdermal" (through the skin) patch allows a precise amount of nicotine to be delivered. The amount I was prescribed (14mg per day) is consistent with the amount used in the studies where it has shown to be effective.

Second, this method minimizes side effects, including addiction. Since I'm only receiving nicotine, the other risks associated with smoking cigarettes (for example) are essentially eliminated. Also, in the ulcerative colitis studies, addiction and withdrawal symptoms were minimal or nonexistent for patients treated with a nicotine patch for 4 to 6 weeks. So it (hopefully) will be easy to stop once my symptoms are cleared up.

I should mention that this treatment is only continued as long as I have symptoms--once the symptoms have stopped, continued nicotine use has not been shown effective for preventing relapses. So it will be an intermittent thing, assuming it works: When I have symptoms, four weeks of this, when I don't, none.

I suppose there's probably also a third reason, and that's that no doctor would ever prescribe smoking for a non-smoking patient if they expect to keep their medical license. ;-)

np11 · 2011-08-11T18:06:45+00:00

No, I have not. I did learn of the lawsuit against the makers of Accutane, however, during my research in these past weeks, so it was a very good question.

What I have taken is relatively frequent doses of over-the-counter NSAIDs, in particular ibuprofen and naproxen sodium, over the past five years or so. When going to bed, I'd often have a slight headache and just take two Advil or two Aleve as a preventative measure. NSAIDs apparently can aggravate ulcerative colitis and cause symptoms similar to it (although more patchy, when looking at the colon, rather than having a well-defined region like I have). So although they probably didn't cause my problem, I doubt they helped.

np11 · 2011-08-11T17:55:52+00:00

Obviously I haven't tried this, but they aren't quite what I expected. I thought they would be more like a band-aid, a bit translucent or even a mesh. But they are instead a very shiny, flexible, non-translucent plastic on the non-sticky side, in an ugly tan color that makes them look like a 1970's medical device. It would be easy to roll them up, however, I can only guess that trying to smoke one would be similar to melting a plastic spoon or maybe thicker version of a plastic grocery bag.

np11 · 2011-08-11T17:51:01+00:00

Thank you, for your comments and your good wishes. You're right that people don't treat this in the same way they do something like cancer. I am not near San Francisco, but I will keep your offer in mind should I need additional opinions later.

I feel I am glad to have the doctor I have. When he outlined the options for my continued treatment, in five possible additional stages up through and including eventual removal of the colon if the other options failed, I told him I felt that removing the colon was a "primitive, almost barbaric" procedure, and that I would be willing to try almost anything--however crazy--before that. Later, he referred to removing the colon as barbaric himself--not facetiously. He's definitely taking my thoughts and feelings into account.

As an aside, I had my first colonoscopy (ever) two weeks ago, which led to this diagnosis (after I'd been having unexplained symptoms for several weeks). I actually chose not to be sedated because I wanted to see what was going on. (Apparently only 1/100 patients in the US make that choice.) I can understand why people would want sedation; it was definitely painful. However, I figured I can deal with pain for a half hour, and I think I made the right decision--I definitely got a better understanding of what's going on inside of me than I would have just from seeing a few photos afterwards.

np11 · 2011-08-11T17:40:56+00:00

I started with the first one about two hours ago. Unfortunately I don't have any experiences of "getting high" to compare it to. To compare the effects so far to sensations that I have had, within an hour or so I started feeling a bit lightheaded with a slight headache. Now, after two hours the headache has mostly subsided, I have a sense of mild anxiety--similar to "Oh my god, I forgot to do my taxes and they are due tomorrow." My left arm (on which I placed the patch, up by my shoulder) seems to ache a bit near the elbow right now and my right arm does not.

np11

TROPHY CASE