I am 43 years old, male, white. I was diagnosed with UC in 1996. I worked in the cruise industry for 14 years and now live in Vancouver, Canada. I play golf at every opportunity.
I currently have my symptoms under control but I do experience flare-ups from time to time. Generally a flare-up goes through stages. It begins with some gas, stomach rumbling and a little abdominal pain/discomfort. After a few days I begin to see mucus in my stools (3-5/day). after a few more days the mucus increases and bleeding begins. The pain and discomfort increase due to bloating/gas. Stools then become very loose and there is more blood (5-7/day). Within a week I am passing only bloody liquid and the pain and bloating have increased again (10 or more movements/day). It generally takes 3-4 weeks for the symptoms to abate once I have things under control.
I am 43. I was diagnosed with UC in 1996. They weren’t exactly sure what it was at first but after 6 months or so they finally determined it was UC. I had been seeing a doctor at the Mariner’s Medical Clinic (I was working on a cruise ship at the time) and then I saw a GI specialist.
What I’m going to tell you next may sound a bit strange to you but it is all true and once you’ve read this I’m going to ask you to check something out on-line and then please get back to me and tell me what you think.
I used to smoke. I smoked from the age of 12 or so and then in 1986 I quit for a year. I also quit drinking that year but I decided that I’d quit smoking until the end of the year and then take it up again in 1987, only to quit again the following year and start again the next year… in other words I’d smoke on odd numbered years and quit during even numbered years and then I’d quit for good in 2000. (Why I chose to do this is a long story and really has little bearing on anything else I’m telling you so I’ll just say “yes, that was a silly thing to do”.)
As I told you, in 1996 I was diagnosed with UC. I experienced bleeding, weight loss and anemia. I didn’t know what it was and I actually let it go for 6 months before I told anyone. (again rather silly of me…) When I finally saw a doctor she asked how long I’d had these symptoms and when I told her 6 months she was shocked. I had lost a fair bit of weight and I was in pretty rough shape by the time I sought any medical attention. What happened next is something I’m sure you can probably relate to… I was put on pills, lots of pills. I was on Sulfsalazine, Asacol, all sorts of different 5-ASA medications and then the worst of the bunch, Prednisone. They had me up to 120 mg a day at one point. When the doctor gave me the pills he also gave me a photocopied sheet, two-sided in teeny-tiny print with all of the negative side effects of steroids. I was told that eventually I’d have to wean myself off of them and it took a long time. The truth is, they did no good (and a lot of bad – moon face, acne, and those were just the visible side-effects) and one day I just stopped taking them.
The strange thing is that one day I noticed I had begun to get better and within a month I was pretty much better. This was 1997 and and from February on I was more or less symptom free apart from the odd small flare-up. I was new to the whole thing so of course I thought I had “beaten” it or something. Wrong. I got sick again, this time worse than the last and I was taken away from work and put in a hospital. I had IV’s stuck in my arm as I had once again lost a lot of weight and electrolytes. They began putting me on medicines again and I eventually pulled the needle out of my arm one day and sneaked out of the hospital. I was sick that entire year and again I took the medications that they offered to no avail. The good news is that in 1999 I got better.
It was at this point that I had a thought… and perhaps you’re having the same thought now yourself. I had spent a lot of time thinking about what foods I was eating or what my stress level was or into what environment I was putting myself or anything I could think of that might be the trigger… when it occurred to me that I was sick during the years that I did not smoke. I thought about it some more because it sounded a little far fetched but nothing else added up the way this did. When I smoked I was fine and when I didn’t smoke I was sick. That’s it… that simple.
I went to see my original doctor and I asked him about this and to make a long story short his respone was this, “Well I am aware of studies that suggest there is a link between nicotine and the bowels and some people have suggested that smoking may have a beneficial effect on UC patients.” I stared him for a few seconds and then asked him why he’d never mentioned this before. He said, “Bruce, how would it look if a doctor told his patient to smoke?” I asked him, “How would it look if a doctor didn’t tell his patient to smoke, knowing it may benefit the patient and the patient died?” His response… “You’ve got a point there…”
My doctor told me to smoke. He said that I should find the smallest number of cigarettes necessary to keep my symptoms at bay, whether it is 2 cigarettes, 5, 10 or 20. It turns out that for me it is about 20, or a pack a day.
(Are you stil with me???)
So, the end of 1999 was coming up and I had promised myself back in 1986 that I would quit smoking in the year 2000 and never smoke again. I now realized this might create a situation. Well, I figured if it was the nicotine in the cigarettes that kept me well I should be ok as there is more than one was to get nicotine into my system and smoking would not be necessary.
December 31, 1999 11:59PM. I butt out my last cigarette. I go to my room and put a full strength nicotine patch on my arm. 3 days later I begin to feel my stomach acting up. I put 2 patches on, one on either arm. by January 10th I have lost 5 pounds and I’m bleeding. I put 3 patches on, one on either arm and one directly over my heart. By the 27th I’d lost 35 pounds and I couldn’t walk. I did have some of the most vivid nightmares of my life though.
I came back to Vancouver as I could no longer work. I rented an apartment and spent the next 2 months living on my bathroom floor. I had begun at 176 pounds and dropped down to 134. I almost died. I finally relented and started smoking. I was very disappointed with myself as I tend to have a very strong will and when I say I’m going to do something (or not going to do something) I stick to it. In this case however it seemed to be a choice of stick to my word or waste away and die. (yes, I was that sick). So I smoked. Within a month I began to see definite improvement and although I was getting better it took 4 months for me to be able to leave my apartment. My first attempt at walking got me as far as the elevator before I returned to my bed.
That’s about it. I have been smoking ever since. I have had a few minor flare-ups since 2000 and every time it has been because I have been in an environment where I was not able to get in a pack a day and every time I simply sit in my room for 2 weeks smoking like a chimney until I am better.
Here’s the thing. I am NOT the only person who has benefitted from smoking. My story parallels that of MANY others. What annoys me is that in ALL cases those I have spoken to have figured this out on their own, by fluke, and no one from the medical profession even hinted at this as a remedy. What annoys me about this is that the medical community KNOWS there is a strong link between smoking and the cessation of UC sypmtoms… there have been many patients who have reported this. Unfortunately, due to the stigma of smoking, no doctor is willing to step forward and say what is the most obvious thing to say… you’re sick with UC? Smoke.
Here’s something else you may find interesting. Go to Google and type in there 3 words: Ulcerative Colitis Smoking.
What you’ll find are many cases where patients have found relief from UC symptoms by smoking and even more importantly you’ll find many studies that have shown a definite link between “nicotine and UC”. Read all that you can find. I’ll prepare you a bit by telling you that in all cases where studies have been performed the study will begin with this statement (or something close to it): Ulcerative Colitis is predominantly a disease of non-smokers”. It’s right there in black and white. Keep reading and you’ll discover that “non-smokers are more at risk than smokers and thoses who used to smoke but have quit are even more susceptible”.
I’m telling you this with the assumption that you’ve never heard about this connection. Perhaps you have, I don’t know. One way or the other I hope you’ll believe everything I’ve told you and that you’ll take some time to check up on what I’ve told you. It’s all true. Doctors know it is true yet no one will tell their patient to smoke for fear of being branded a “quack”. The last thing that you’ll find with anything associated to this strange connection is that there will always be some kind of disclaimer stating that “of course the negative effects of smoking are much worse than the benefits it may provide (or words to that effect). Garbage. No doctor can tell me that steroids are any less harmful or damaging than smoking. Yes, smoking is bad for me but I’d rather die of cancer in 5 or 10 or 20 years than die of this in 12 months of have half of my intestines cut out and have a baggy attached to my side… no t hanks.
There is a reason that smoking keeps me well and I wish I knew what it was. I wish someone would do a study on SMOKING, not nicotine, and find out why smoking keeps my and many others well. The problem is that no one will do this. I’ve even written to tobacco companies and cigarette manufacturers and the funniest thing is that THEY know that smoking is beneficial to UC patients because they’ve heard from others in my position, but their response is that they make cigarettes, they are not pharmaceutical manufacturers. I can’t blame them I guess.
Finally, am I telling you to start smoking? No, not yet. The truth is however that yes, if you or anyone else with UC asked me to give them some advice I’d tell them to smoke. I tell them to give it a month or two and see what happens. Will it work for everyone? I somehow don’t think so but if it helps YOU or anyone else then I believe it is worth my time to at least let someone else look into this and make up their own mind. If acidophilis or Asacol or Remicaid works for you and you’re living a happy and healthy life then I say keep on doing what you’re doing… but if not, then let’s find out more and see what we (you, I and everyone else who is affected by this) can do about it… the doctors seem only interested in following the party line and serving the wishes of the drug manufacturers.
That’s my story. It’s 2012 and I’ve been living with this now for 16 years. The thought of anyone else going through the pain and aggravation that I’ve been through makes me sick which is why I’m telling you my story. If you think it’s a bunch of garbage that’s fine. If you have been wondering about smoking and if it will help you, I say give it a try. It can’t be worse than all of the other “treatments” out there and all of the side effects that they have.
Where I’d like to be in a year:
On a golf course breaking 80.
Asacol – nothing
Prednisone – nothing but lousy side effects
Metronizadole (Flagyl) – nothing
Aloe vera gel (orally) – nothing (yuck!)
Smoking – YIPPEE!
written by Bruce
submitted in the colitis venting area