I am really sorry if this comes across as nasty to some people but smoking instantly put my pouchitis in remission.

My problems started when I quit smoking in 2004, and I had my surgery in December 2005 and Takedown in February 2006. Ever since May 2006 I have had constant pouchitis which didn't respond to much other than asacol and occassionally steroid supps.

One cigarette just healed me up tonight. I plan on keeping it at one or 2 per day. I thought I would share this as I cannot be the only one who has major problems. I debated myself over this for almost a year until I finally did it. It worked within 5 minutes.

It might not work for others, keep this in mind... I did not respond to anti-biotics. I was diagnosed with UC, and the biopsies always came back as pouchitis but my doctors have always been suspicious of Crohns disease in the pouch since I responded to cd and uc meds as opposed to anti-biotics. I only had inflammation in the lower end of my pouch (badly) and last year my 2cm cuff which has been under control since last year and gave me no grief.

Hi Kam,

I hate to rain on your parade, but smoking is actually contraindicated in Crohns, which means it would make a Crohns flare worse not better, so forgive me if I'm a little confused.

A few things have me wondering, and I'm sure I'll be corrected if I'm wrong.

One (which is the one I'm leaning towards) is that your remission after just one cigarette is just a coincidence.

Two is that technically you can't possibly have UC as you no longer have your colon so it is more likely that you have either Pouchitis, Cuffitis or possibly both. The fact that UC drugs worked better than antibiotics suggests Cuffitis to me.

And three is that it's unlikely that you really could have attained remission after just one cigarette and how could you tell after just 5 minutes? Sorry if I seem a little sceptical, I'm just confused as to how you can be sure after such a short time.

This is just my two pence worth. Hopefully others will be along soon with their input.

Take care

Shell

I guess I'm somewhat confused at the correlation as well. You wrote that you stopped smoking in 04 and you had your take down in Feb of 06 and since May of 06 you've had problems with pouchitis. You hadn't been smoking for two years so I'm wondering how not smoking could have caused these problems two years later. Or...maybe you aren't implying that, maybe you are suggesting that smoking "cured" you.
Either way I'm not sure it was the cigarette that helped either. Had you been stressing the whole two years that you quit or was it easy for you to give up smoking?

This message has been edited. Last edited by: Olive Oil,

Actually, I see this as completely plausible. It is quite common for a very refactory flare of UC, or even an initial flare, to occur after cessation of smoking. It is not necessarily true that Kam's colectomy was immediately after smoking cessation, and it does appear that pouchitis appeared shortly after takedown.

Cigarettes are very powerful drugs, with many chemicals in each cigarette. I can see how a single cigarette could improve symptoms. It may not heal the pouch that quickly, but I can understand how it could improve the symptoms. The endoscopic change generally lags far behind symptomatic improvement in UC and Crohn's. When I was treated for pouchitis, a single dose of Flagyl improved my symptoms within hours. Why not the same for cigarette smoking?

Some in the medical community feel that pouchitis is often a return of IBD, and it does not have to be Crohn's because the mucosa of the ileal pouch changes over time to resemble colonic mucosa. If this was Crohn's, the symptoms would worsen, not improve with smoking.

My concern would be maintaining a 1-2 cigarette per day habit. If you were addicted to cigarettes before, how do you maintain the discipline now? They say that nicotine addiction is stronger than cocaine. Plus, what if you need more and more to acheive the same effect?

Jan

My doctor told me that had I been a smoker, she would not have been able to bring herself to pressurize me to stop altogether, as her experience clearly shows that UC worsens if the patient tries to stop smoking. As it happens I absolutely hate cigarette smoke and never have been in any danger of becoming a smoker. So no chance of trying that "cure"

I always hated smoking too and was a life-long non-smoker, but was desperate enough to try nicotine patches (got up to veyr high doses) and some smoking on a couple of 3-6 week experiments to see if it would get my UC in remission, so I can sympathize with the idea of a deal with the devil (many of us do it with pred- i do).

In my case nicotine had no effect whatsoever in helping me, contrary to all the studies which show it can be quite "helpful" as far as UC is concerned. If anything, it increased my urgency and number of BM's quite a bit, though it didn't cause the stools to be looser. other side efefcts, like nightmares, rapid heartbeat and headaches and some nausea were not fun (owing to my being a non-smoker).

If anyone has seen the movie "Thankyou for Smoking," I felt like the tobacco lobbyist after he was kidnapped. Maybe I really have crohn's colitis (it was temporarily considered "indeterminate" after a scope a few years ago), but my latest scope reconfirmed UC.

Christopher

Maybe I've mis-interpreted Kam's post?

The thing about his post that puzzles me is his reference to the possibility of a mis-diagnosis and that he and his doctors were leaning towards Crohns rather than UC.

If I thought there was even the slightest possibility that I had Crohns (which I very well may have) then I wouldn't even consider trying a cigarette to get me into remission, I just wouldn't want to take the risk.

If, on the other hand he is absolutely certain of the UC diagnosis I can understand (though not sure I could condone) his being desperate enough to try smoking as a means of trying to gain some sort of remission.

Like I said, this is just my two pence worth.

Shell

Thanks for your responses everyone. I'll make my post sound clearer, I am sorry if it didn't at first.

I quit smoking in late 2004, and was hospitalized within the month having lost massive amounts of blood following an emergency sigmoidoscopy and was put on steroids and asacol instantly. I was a chain smoker but got busy with UC so quitting was easy for me. For about 3-4 months I was doing well then things got worse and worse until 65mg prednisolone was not responding.

I had my initial j-pouch surgery in December 2005, and discovered that I had a toxic megacolon. I was lucky they got it right in time. Throughout the whole time with the bag my life was miserable, and then takedown was in February 2006. I weaned off steroids right before my second surgery as well. Again life was miserable, until they discovered I was lactose intolerant (to the point where even most lactose free dairy containing 0.1% lactose bothers me). I stopped having dairy and my life improved, I was only using the toilet 5 times a day which was amazing for someone 3 months post-take down. A few days later I started bleeding and was diagnosed with both cuffitis and pouchitis. When I had my UC the tip of my ileum was always infected and part of my UC. Right now it's still the same portion which is ulcerated and the rest of the small bowel is in perfect condition.

Neither flagyl, nor cipro worked for me. Anti-biotics worked once, but it worked on a different area altogether and was a different feeling to what I have. My conclusion is that I still have UC recurring at the tip of my ileum and to a much lesser extent the cuff (I know the difference in feeling). My surgeon is suspicious of crohns but he takes no time to talk to people as my GI has constantly done pouchoscopies and biopsies which come back as no different to the old UC days. If the book says so, it has to be so according to my surgeon so after he scoped me he said it's gotta be crohns, despite what the biopsies confirmed.

I easily achieved remission with asacol but at high doses (6g oral, and 6 grams supp/enema) which constantly gave me stomach ulcers, the second I put the oral aside my stomach would heal within the month and my pouch start flaring within the next 24 hours.

Last night I picked up a cigarette and voila. I had another one before bed and slept through the night. Cigarettes are immunosuppresents and they work well with me, much like steroids and imuran are immunosuppresents. I feel 90% better, but my stomach ulcers are still giving me slight diahorrea. I know it's not the pouch because it's the same feeling I get when I have dairy which is my stomach not breaking the food down properly.

I doubt ciggies will work for others, seeing as I'm viewing my issues as remaining UC in the lower end of my ileum as opposed to pouchitis. The reason I am concluding this is that there was a time when i had a different flair and it felt very different to what I have now which did not respond to steroids or asacol, but rather a combo of cipro/flagyl.

Despite being a former chain smoker, I was trying not to throw up when I smoked. I am going to keep it at 2 a day and hope I always find it as disgusting as I just did. i doubt nicotine patches would work as they wouldn't really be considered immunosuppresents. Smoking doesn't always work, it just seems to with me. I have been told of a W pouch or something other where only the top of my ileum is used for a smaller pouch but I have decided against this.

Sorry, what I meant with my biopsies always being the same as the old UC days is that they confirmed pouchitis at all times, but the inflammation was visible and much more inflammed than most pouchitis patients.

I'd also like to add that I am in no way trying to glamourise smoking. The whole thing was such a desperate attempt and so depressing that I accidentally smashed my car into a concrete wall before I got out to have the first smoke, but luckily nothing has happened to me.

Sometimes I wonder whether the ciggies factor is more a case of extra stress. In other words, if you're already a smoker, quitting can worsen your UC, while starting to smoke to keep yourself in remission doesn't necessarily work. For me, that was like the reason I tried smoking in the first place - I thought that if I started smoking I'd lose weight, since all smokers seem to complain about weight gain when they stop. Then I thought "Hang on, I know a lot of fat smokers! This theory is flawed!"
But I have to say, I can't see any reason why smoking is more dangerous to your body in total than long-term pred use. Except of course if you have Crohns.

Thanks for straightening this out Kam. I hope that you find the solution you are looking for. I know how it feels to be desperate enough to try anything.

Good luck with your experiment.

Shell

I know what you mean about trying anything. If they'd been available in Norway, I'd have been munching those live worm egg things. I saw a documentary about them just after I'd had my surgery. A woman in the US had decided on surgery but had such success with the worm eggs that she was able to keep in remission and keep her colon. I know it doesn't work for everyone, but I'd have given it a go, no matter how grim the thought of worms is.