Ulcerative Colitis Tips


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Question for the Smokers

Sophie DIntro:

HI I have had uc for 7 years .
It started 3 months after I stopped smoking
And took 5 years to diagnose
I have tried asacol prednisone and mezzavant over the last 2 years without much success

Some more about Sophie:

I am from Scotland
I am self employed and live for my holidays in the sun as u can imagine living in Scotland we do not get much sun
being self employed I don’t get much time for hobbies but I walk when I can and the symptoms allow

Symptoms:

I am currently on one prednisone every other day managing to go to loo 2 times every day which is great just soft stools and a little blood

Question for the Smokers:

My ulcerative colitis took 5 years to diagnose and it took for me to be hospitalized for this to happen.

Two years ago I lost 1 stone which on a 100 lb woman was a lot, eventually they put me on prednisone and asacol. The side effects of the prednisone are not good makes me quite ill.

This worked for a short time then symptoms returned.

Another colonoscopy which I think is the thing I fear the most especially the bowel prep I really struggle with this.

This has been difficult time running to loo 20 times a day and losing a lot of blood and still trying to work.

They then tried mezzavant and prednisone, this lasted a short time as well.

Now the next stage is azothiaprine which I am not so kean to try due to the side affects.

I seriously was considering an iliostomy.

Nurse I was dealing with wasn’t so helpful, basically try it because she thought I was being stupid.

Anyway I didn’t try it yet I came here.

I read about the smokers I discussed this with my husband and after a long hard think he went out and bought me cigarettes.

I am smoking 5 cigs a day and taking 1 prednisone things have improved dramatically.

Spoke to consultant and told him what I was doing he said all the medical evidence is there that it works so try it but do not wait long if symptoms get worse come back and we will try the mezzavant again only a larger dose
I have been smoking for nearly 3 weeks.

My question is for the smokers as you can imagine being smoke free for 7 years it took a lot for me to try this ?

How long were you smoking again till you went into remission and what should I expect ?

Should things go back to normal after I have been smoking for a few weeks ie going to loo once a day with normal stools and no blood ?

I know everyone is different but I just need to hear other people’s story.

I would also like to thank all the smokers who posted here for this information I know it’s not easy for smokers these days

Current Treatment:

Prednisone asacol mezzavant cigarettes

written by Sophie D

submitted in the colitis venting area

 

**related post – Does Smoking Really Help Colitis – 400 plus comments!!







smoking

60 Responses to Question for the Smokers

  1. Andy June 15, 2015 at 12:09 am #

    Any actually medical studies on this involved using nicotine patches, you should start smoking to stop colitis! Especially if you are on prednisone.

    I’ve tried both patches work just as well and are easier to get off when you’re done. The effect is very mild though, I’ve never been able to stop a flare with nicotine, but it does seem to speed things along.

    • mike August 19, 2015 at 3:34 pm #

      Andy – My mother of 65yrs was diagnosed with UC 6 mos ago and has had no luck tapering down below 10mg’s of Prednisone. She is also on Lialda. When the doctors suggested Biologics, I went deep reading the research. While I am not a doctor through my work I have the luxury of interacting with many doctors and specialists. I read all of the studies around Nicotine/Smoking and was able to reach out and ask a lot of questions. The bottom line is this: After 8 days of chewing 8MG’s of nicotine gum a day, my mother has shown a noticeable improvement. Her bm’s have dropped from an average of 20/day to 1/day and she has no more blood in her stools. My main takeaways from all the studies are this:
      1. There is SIGNIFICANT proof that Cigarette smokers have lower incidences of UC. This is a statistical fact and no one can deny this.
      2. Studies on Nicotine Patches / Gum also indicate that they are effective. HOWEVER, the flaw with these studies is that they take non-smokers and immediately give them 15-20mg’s of nicotine a day. Study participants feel nauseous (the same way I as a non-smoker feel if I smoke a full cigarette). Many of the participants then claim the nicotine is worse than UC and they withdraw from the study. The ones that remain check off boxes of symptoms like headache, nausea, and other things associated with smoking for the first time.
      3. The studies conclude that while nicotine therapy does show efficacy, the number of “side effects” do not outweigh the benefits. Therefore, you should shut up and take you medicines that have FEWER side effects like steroids and immunosuppressants.
      It is still early, and I appreciate it is controversial to push nicotine but my mothers results have been great. Given what I perceived as the flaw in the study (taking a non-smoker and giving them the equivalent of a pack of cigarettes) I had my mom take 5-6 days to work up to 8mg’s of nicotine gum. She started by chewing 1/2 a piece of 2mg gum for 5minutes. Then slowly working herself up to 8mg’s a day. After the 8th day she had a noticeable improvement. This is almost exactly the same dosage and timeline to improvement that others had seen. I mapped the success stories and found the common thread was 4-5 cigarettes a day (2mg’s of nicotine per cigarette) and about 7-10 days for results. I can dig out all the studies later, but honestly if you take the time to read through all the jargon it is clear that nicotine can have a noticeable impact on UC. And while nicotine is controversial, my thinking is that governments and lawyers have spent BILLIONS trying to prove that cigarettes are responsible for millions of heinous diseases. That said, there is almost NO study showing that nicotine on its own is any worse than caffeine and it CERTAINLY isn’t worse than the nuclear bomb immunosuppressants and biologics that they so easily push at 3K per treatment.

      • Myk August 20, 2015 at 12:14 am #

        Exactly right about the “side effects” issue. They’re using a cessation product, something designed to satisfy hard core smokers (which it doesn’t but they’ve patterned it for blood nicotine levels). Of course they’re going to feel sick. A new smoker has a cigarette, feels sick, stops. They don’t slap a pack’s worth of nicotine on their arm, feel sick, start sweating and get a higher dose from the sweat.
        I quit with 11mg in ecigs, I couldn’t handle 18mg a few puffs in the morning and I was heading to bed. When I was diagnosed going back to 11mg didn’t fix it. I had to work 18mg into rotation. A puff here and there, enough to get slightly sick then go back to 11mg. It took me about a month before I was at 18mg all the time and the bleeding stopped. That’s more nicotine than I could handle the day I quit smoking.
        I’m really sick of the politics with smoking/nicotine and IBD. If they can’t be for our health get out of medicine.

  2. Craig Whiley June 15, 2015 at 5:43 am #

    I gave up smoking several years ago due to my partner at the time and others in my life giving me speeches about how it’s bad for your health etc, and considering I have UC it could only help.

    I last 6 months before I started again. After roughly a week of stopping my flare ups which were so infrequent I could go months almost forgetting I had UC, went into overdrive and I became what can only be described as hormonal and depressed, which led to a breakdown. I literally thought I was dying, almost daily accidents and I lost a lot of weight.

    I presumed smoking helped reduce stress but my Dr told me to start again and explained how nicotine increases the production of colon mucus. The attacks improved and became more controllable. I think the event caused lasting damage or trauma because 5 years on things still haven’t returned to the original harmony I had and I’m still not confident enough to travel outside town or go anywhere where there’s no toilet.

  3. Andy June 15, 2015 at 7:17 am #

    I actually meant you should not start smoking to stop colitis. Smoking in combo with pred seriously increases your risk of diabetes. Be careful.

  4. Kathy Prieto June 15, 2015 at 2:27 pm #

    My husband started smoking again after being in hospital for a week with no colitis relief. He does 5 cigs a day and his recent colonoscopy was beautiful! His stools are gorgeous after increasing his cigarettes to over 5 a day. He was severely dehydrated with his last flare and developed kidney stones( which has been a problem for 2 years now). I think the smoking is now taking the edge off since he is in frequent pain due to passing little stones….. Once the kidney stone issue improves, will try to transition to olive oil regularly and try to wean cigs. There is a guy on this site with co cinching story of olive oil and colitis and some medical study to back it. vSL#3, coconut oil and the cigs helped a lot when done together and he had improvement within a week

  5. Lorri June 15, 2015 at 2:54 pm #

    YES SMOKING 5 CIGARETTES A DAY ALONG WITH A LOW DOSE OF ASACOL ALONG WITH SCD HAS PUT ME IN THE LONGEST REMISSION EVER. I DONT INHALE EITHER. WHEN I AM IN REMISSION I ONLY NEED TO HAVE 1 AT NIGHT ALONG WITH MY MEDICINE. I STOP SMOKING EVERY TIME IN THE HOSPITAL AND GO INTO WORSE FLARE. GOOD LUCK DONTKNOW WHY THIS WORKS BUT IT DOES

  6. Graham from England
    Graham Lee June 16, 2015 at 1:38 am #

    Hello Sophie,

    Its no coincidence that one of the longest threads on this site is about smoking. I’ve had UC 15 years (after quitting) and have returned to it many times to halt my flares. Like many here the magic number to retain remission is 5 a day but for me it takes 10 a day for 2 weeks for everything to heal from a visible and feeling well perspective. I am also convinced that its another 2 months before everything is perfectly healed inside.

    Because of the addiction I have always found 5 a day impossible to stick to so I am currently using an E cigarette for the cravings in between. This is a good way to limit the harm, guilt and reluctance one feels after being smoke free for such a long time.

    I used to flare within 3 weeks of quitting but its now 14-6 months before I have to smoke again. Its always like groundhog day and I know it’s coming but I am pleased to get that far without using any medication.

    EVOO was my breakthrough as it is proven to prevent UC in the general population. Many give up on EVOO if it doesn’t reverse a flare but it is most effective in preventing or delaying them. If you are interested search EVOO 2 on Google and it comes straight up.

    Best wishes!

    • Eileen June 16, 2015 at 8:47 am #

      Graham,

      I have been reading all your and Bev’s posts with a lot of interest. I too am a former smoker. I have had UC for 12 years and quit smoking 12 years ago. I have never been in remission. I was on prednisone and colazal all these years (as low a dose of prednisone as I could possibly be on to give me some quality, not great, but some). My dilemma is this. I had two sisters who both smoked and died of lung cancer. The older one (50) when she died, had quit for 10 years before diagnosis. The younger sister (44) when she died, was a current smoker. So, I want to be in remission because my quality of life really sucks. I would rather at this point have quality, instead of the quantity. Another twist in my UC story is that I was on Accutane when I was 16-17, as well as low dose antibiotics for a few years!!!! Then, 12 years ago threw me over the edge when I developed a severe UTI. I was put on flagyl, which didn’t eradicate it the infection, and then another stronger 2000 mg antibiotic, taken once, which got rid of the UTI, but shortly after this, I started a huge flare. So, here I have three strikes against me. Former smoker, Accutane and having taken a strong antibiotic. Is there any hope for me? I am currently doing the SCD, L-glutamine (switching soon thanks to Bev to the Fermented kind) Curcumin 95. I have been following this diet for three months (strictly). Getting some relief, but still bleeding and mucus. I also, just started taking the L-Acidophilus 10 Billion only. I read in the SCD that you shouldn’t take anything with Bifido in it to start with, since these guys aren’t really too friendly. I noticed the Ultra Cleanse has a lot of the Bifido. OR Should I just give smoking a try? Let me know your thoughts please and thanks for this website Adam and all the contributors. I really appreciate all the sharing. Best Regards to all!!

      • Bev June 16, 2015 at 9:05 am #

        Wow, Eileen….we were certainly ‘set up’ for getting UC weren’t we? I was on Accutane four times in my late twenties. Had to take a lot of antibiotics when I was a little gal due to severe tonsillitis, which were never taken out, but rather, treated with strong antibiotic injections into my hip.

        I also smoked for 20 odd years. Perhaps smoking actually helps to cause UC as well? It seems that some of us don’t get full blown UC until after we quit…mmmm. Thinking out loud. Maybe smoking is yet another cause of UC? I mean, it can cause other cancers beside lung. It may also damage the lining of the colon by actually producing too much mucous in it and then when we quit, the colon goes out of whack the opposite way, losing more than mucous than it should, leading to a very dry ulcerated colon? Who knows.

        I do know this…smoking is very harmful. Quality of life now, aside. Do you know what I mean? It took me five long years of taking probiotics and L-glutamine to finally attain real absolute blood free remission. It could be that we just have to persevere and have ALOT of patience to heal that colon, Perhaps it does take years. It probably took years to get UC in the first place?

        I’m just throwing ideas around here. I just cannot start smoking again…I just can’t. I know it would be easy to do and probably take the UC ‘away’…but it’s never really gone, or so THEY tell us.

        • Eileen June 16, 2015 at 9:49 am #

          Bev,

          Thanks for your reply. I feel I have not been consistent and patient with any approach I have taken over the last 12 years, except the prednisone and colazal. Which if I try to heal my colon now, it probably will take an additional 5 more years of this pain.
          My colitis is mainly in my sigmoid and rectum. But, now that I am off ALL the meds, which perpetuated the D and have more firm TO HARD stools, it is extremely painful to pass them. Once they are passed I feel much better. I do not have urgency. I go four or five times during the night and at least average 7 to 10 per day with blood and mucus. I think the blood and mucus are caused by the stool being in or near the rectum, but I can’t get it out without pushing until I’m red in the face. If it doesn’t come out then I just get powder and mucus and blood. Then I have to eat to survive and the cycle continues…….
          I am afraid to start smoking again. And I agree the chemicals in the smoke, probably damaged my colon, irreparably. Hopefully, not! The cigarette mfgs. don’t want to get sued for this damage, so no one will put this warning on their labels. Same goes for the Accutane. Strangely enough, here in the US there are commercials for using Accutane still AND they warn you that it can cause UC!! You know the “side effects”. Of course, Accutane mfg. targets young kids who don’t know what UC is. People have to take careful consideration of every single SIDE EFFECT of anything they ingest into their bodies. Bottom line is PROFIT!
          I am 56 years old. I really would like to have some quality of life before I die. I am going to give the Probiotics and the fermented L-glutamine and the EVOO a chance. Maybe too much here? If I use the EVOO, then the Probiotic and Ferm-LGlut might not get absorbed? I don’t know about the LDN though. I looked some info on it. Need to be careful where and who compounds it. But, I need a doctor who will prescribe it to me. I don’t have a Gastro right now. I went to him for 12 years and he didn’t do anything for me. He told me the ONLY treatment that will heal me and put me in remission is the REMICADE. I do not believe him, especially since this approach is sooo expensive and more in his pockets. Cynical…..unfortunately, yes? :(
          Either way, I have still a long road ahead of me….
          The Best!

          • Bev June 16, 2015 at 10:13 am #

            Boy, I sure hear you Eileen.

            I never even thought about the cig companies having to put that sort of warning on their labels! Hah! Could you imagine?? They would probably owe TRILLIONS more in damages…but I digress. I think in the future that perhaps smoking and UC will be connected, sadly. There are just too many people who have been diagnosed with UC after quitting. There HAS to be something to that.

            As to Accutane…I KNOW!! They still actually prescribe this drug, in good conscience, to teenagers! That seems criminal to me. Un believable almost, after all of the people who’s colons have been damaged by that drug. Here in Canada, where I am, we are not even allowed to sue in class action lawsuits

            I feel your pain relating to what could be a long waiting game for remission. I just kept plugging away. I really cant believe where I am sometimes. I never thought I would ever feel this ‘normal’ again. I hope that it lasts forever…

            The best to you as well. I believe that all of us can get there. It just feels like hell waiting for it to happen.

        • Myk June 18, 2015 at 10:12 am #

          Bev,
          Don’t ask me how they figure this out but the studies show that smoking does not cause UC. I’ve often wondered that myself.
          http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3122262/
          I’m sure if it did the chance to blame smoking wouldn’t be passed up by those who blame everything under the sun on smoking.

          Personally I had GI problems as a baby and started smoking habitually at the same age I started GI testing. I think our bodies know what helps and crave it, just like I always craved large amounts of mustard (turmeric) and hot peppers (capsaicin). When I flare I have a strong craving for a cigarette.

          I don’t smoke so I can’t say how long for smoking to clear things up. I use ecigs/nicotine with 5asa (also Indeterminate Colitis not UC). Having small amounts of blood constantly is what drove me to quit, which made it worse, then quit nicotine, which made it worse again. I didn’t fully stop bleeding on 5asa until I added nicotine back in the ecigs and increased it from my quit level after my SBFT came back clear. I think it took about a month to increase it to 18mg where bleeding stopped.

          I have considered trying 5 cigarettes a day and supplementing with ecigs, but I have a fear that the ecigs would be dropped and 5 would instantly become 30.

          • Bev June 18, 2015 at 11:45 am #

            LOL…too right, Myk. If only we could blame this too on smoking!

            I know that my over taking of antibiotics as a young child for year after year of bad tonsilitis, along with taking Accutane, the acne wonder/nightmare drug, likely signed my UC death sentence. Thought I’d throw cigs in as well, just for good measure…why not, right? I blame everything!!

            Smoking would probably stop your bleeding…sad but true. Like you, I know that 5 per day would quickly (oh so quickly) become at least a pack!

            That’s me all over.

          • Eileen June 20, 2015 at 4:54 am #

            Myk, I read this study in it’s entirety. It says you have to be a recent ex smoker. I have been an ex smoker for 12 years. Not exactly recent. I wonder and hope it can still work for me. ?? Also, Any thoughts? Bev? Graham?

          • Bev June 20, 2015 at 6:22 am #

            I bet smoking would work Eileen. It seems to work for everyone who takes it up again?

          • Myk June 20, 2015 at 8:55 pm #

            This would probably be more the study you’re looking for, Eileen. http://ecco-jcc.oxfordjournals.org/content/6/7/756
            It’s about low dose smoking in UC. Small study though. I gave the above study because it doesn’t blame smoking and if I remember right (or gave the right study) it looks at a lot of them.
            I know people dx’d long after, and bleeding was what got me to quit, and then get worse. It takes all kinds I guess :)

          • Myk June 20, 2015 at 9:07 pm #

            Try it this way, the direct link is paywalled. https://www.google.com/search?q=Low-dose+smoking+resumption+in+ex-smokers+with+refractory+…+ecco-jcc.oxfordjournals.org%2Fcontent%2Feccojc%2F6%2F7%2F756.full.pdf&ie=utf-8&oe=utf-8

      • Graham from England
        Graham Lee June 16, 2015 at 11:09 am #

        Eileen,

        Smoking would be your decision only and obviously a very difficult one given what happened to your family.

        I may pay the price one day but it has given me a life for which I am grateful. If I do suffer as a result I will not have regrets because we are somewhat forced into it and I believe it is a very valid decision that even some doctors support. Who can blame anyone with this disease who chooses to be well? As far as I can tell every option carries a risk, smoking, meds and surgery. I have permanent CNS damage because I chose NOT to reverse a flare by smoking. The flare got worse, I was put on Asacol then an attack of transverse myelitis.

        The difference now is I smoke around 20% of each year. I keep it to a minimum by having the amount to reverse it then step down to 5 a day with e cigarettes so it doesn’t go over 5. This is hopefully minimising the risk until the day we can all rejoice the cure!

        • Bev June 16, 2015 at 1:37 pm #

          I agree with you Graham.

          I believe in that old adage…everything in moderation. I don’t think that a few ciggies a day will hurt. You are also correct…the symptoms of a flare are the worst thing to live with. It may well be worth the trade-off.

          I always LOVED smoking. I am afraid to have even one, I enjoyed it so much. I am a hopeless cigarette addict. I do know that if I started again, all would be well with the UC and I probably wouldn’t even have to take any supplements at all…it is so tempting.

          Oops…I want one right now…lol!

          • Eileen June 16, 2015 at 3:38 pm #

            Thanks to you Bev and Grahem for all for your replies. I actually feel a bit relieved to be getting input from fellow UC’ers. I have never shared my story in a public forum before and it feels very therapeutic. I am very ill right now with this disease and I am just sick of being sick. I don’t want to try the meds. I feel better in some ways without them. I fear the side effects of them. I decided to go the smoking route. I don’t want to….I have to. The bleeding is getting worse and I don’t want to end up in the hospital. Soo, I went to the store and bought a pack of cigarettes. Wow! $6.39 a pack. My game plan is to go slowly. I am going to continue with the SCD because I think it is healthy. But, once in a while I really want a “forbidden food”. I am determined to heal my colon. I am going to take the Probiotics daily, faithfully, forever. Also, going to continue with the Fermented L-Glutamine because I think (for me I know) it helps firm things up. I tried to find the EVOO over the weekend, but could not find a harvest date of within 6 months or so. So, will continue looking until I do and then, start taking that. Life should be lived one day at a time and that is all I have anyway. Best to all!

          • Bev June 16, 2015 at 3:54 pm #

            Great news Eileen…I think the meds are worse for a person than the cigs!

            Not to mention the side effects from the meds. At least the cigs feel good…lol!

            Do also keep taking the L-glut and a good probiotic forever….

      • Patrick October 1, 2015 at 7:02 am #

        Eileen,

        I wonder if you have considered pipe smoking? The author of this book obtained a 5 year remission by pipe smoking. It appears to be as effective as cigarettes although this is not widely appreciated. As with cigars, there is no need to inhale so there is less risk of getting lung cancer than with cigarettes. It takes a bit of work to learn the necessary skills but there are plenty of how-to videos about pipe smoking on you tube.

        http://www.amazon.com/Journey-Health-Overcoming-Inflammatory-Disease-ebook/dp/B005G4YVMI/ref=sr_1_5?ie=UTF8&qid=1443707062&sr=8-5&keywords=hartsfield+larry

        I am a former pipe smoker who gave it up about 12 years ago. I was diagnosed with UC 3 years ago and started flaring a few months ago (this regularly happens to me in the fall). So I started smoking regularly again (one pipe after dinner) and the flare seems to have come to end. It is too early for me to claim victory but I will post about this at greater length eventually if the benefits are sustained over time.

        • Eileen October 2, 2015 at 3:08 pm #

          Patrick, thanks I’ll give it a try! Better than cigs

          • Patrick Kenny October 4, 2015 at 5:08 am #

            Eileen, do let me know if it works for you! A meerschaum pipe (e.g. on ebay) would be a very good place to start.

  7. Terry June 16, 2015 at 1:57 am #

    Hi Guys,
    Just the same as some of us i packed up smoking, and 2 yrs later i developed UC. i have suffered all of our symptoms for a year and four months, so much so it has put me out of work. I worked in the construction industry and its not very Loo friendly! i messed myself one time too many and just could not carry on anymore. Being at home and having so much time on my hands I then looked into the link between smoking and UC. So….. 3 yrs and 4 months of not smoking i decided to start smoking again that was 6 weeks ago. The improvements have been dramatic for me in the UC world, i was on the loo some 15 to 20 times a day, plus 3 to 5 night time visits. 6 weeks back on the ciggies i now sleep through the night with maybe only 1 visit during the night on a few occations. During the day there is not so much urgency to rush to the loo, but its still there, i think now its possibly more psychological that i have to get there just in case! My daily loo visits are now down to about 6 to 10 times a day with NO BLOOD there is still mucus but not as much, in fact very little compared to how i have been in the past. I am not impressed with the meds that are available for us UC sufferers, Masalazine, Sulfasalazine, Prednisolone ive been on all of them and still am, i still take 10mg Prednisolone and Sulfasalazine but in 6 weeks i have had more possitive results being back on the Bensons, than any of drugs that i have been on for the last 18months. So Guys make up your own minds on whether you want to go back to smoking again? its not clever we know, but i just could not stand my life as it was 6 weeks ago. If things work out for me and i can get the urgency under control i could be back to work in maybe another 6 weeks? Happy days :-) Take care, Thanks Terry x

  8. Andy June 16, 2015 at 3:58 am #

    Just to add a bit more to this.

    I developed uc while smoking 20+ per day, I have I occasion returned to gum and patches and they definitely ease the flares, usually takes me about a month from starting nIcotine and prednisone to get back to normal.

  9. Graham from England
    Graham Lee June 17, 2015 at 4:57 am #

    Eilleen, the fact that the EVOO has a harvest date is very good news. It can be up to 2 years after and still very good.

    Glad you have your life back Terry.

    I think we have established that smoking for UC is perfectly reasonable to reverse flares but dangerous as a full time solution.

  10. Eileen June 17, 2015 at 6:38 am #

    Good news! I’ll get some then, and hope for the burn. Peppery and fruity. Thanks Graham! :)

  11. Becky Lynne June 17, 2015 at 11:44 am #

    My MD gave me Tramadol HCL 50 mg for pain. It is very mild non-narcotic pain med.
    These stopped all loose stools for me, unless I eat something outrageous. I can’t tell you how many times, driving home, I did not make it. Or out to eat and had to throw my
    panties away and clean myself up in restroom,etc. You all know the stories. Thankfully, I never had a terribly embarrassing one. I can take 2 of these, every six hours, but usually only take 2 twice daily. I have a lot of joint and body aches.
    Occasionally, I still have stomach pains, usually related to something I have eaten re:
    salads usually make my stomach cramp. I encourage you to ask your doctor about this med. Ultram is a trade name. Tramadol HCL
    Is the generic name. It has made a HUGE difference in my quality of life. This was really discovered by accident. My doctor did not know it would have this effect on me. It is a wonderful side effect!!!

  12. JamieIsLame
    Jamie June 17, 2015 at 1:30 pm #

    Hey Sophie,
    First off, don’t bash Scotland! it’s one of the most beautiful countries i’ve ever been to!

    I started smoking to treat my UC 3 years ago, it works, but it also makes you feel like shit, basically, it’s picking the lesser evil.

    What you should consider doing, is buying an ecigarette. it’s far cheaper, smells better, tastes better, and comes without giving you the nasty side effects like shallowness of breath. Is it better for you? the jury’s still out on that, but I find it’s a great little device which is part of my medical regime, just like an inhaler to an asthmatic.

    I vape about 1-2mls a day, depending, and a bottle costs about £4.

    I know of a few good stores in Scotland to get them from, I bumped into a store manager from one a chain called “Emporium Vapour” which are based in Glasgow, Falkirk, Edinburgh and Leith.

    I’m sure if you went to them and explained your predicament, they might even give you a discount (if you go to Leith, ask for Gary, he offered me a 10% discount!)

    Hope you’re doing well :)

  13. Joe Kemp June 17, 2015 at 3:08 pm #

    I thought I would contribute my humble two bits worth. I was diagnosed with UC late 2011. May 2012 went into an acute flare-up after a course of antibiotics – hospitalised for three weeks – fought with surgeons about NOT having my colon removed – self-discharged – lost so much weight (50kg – I am 6’3″) and blood. Long story short – started Paleo – have improved – still losing blood – started smoking five cigarettes a day – bleeding stopped. Have been back on the smokes for two years – have my life back. I know they will kill me – but the UC was killing me now. Life can suck – but I have some normality back thanks to the smoking. Ironic – not sure. All the best UC world :) Joe

    • Bev June 17, 2015 at 3:45 pm #

      Well, Joe, Let’s not ever feel ‘bad’ about the choices that we sometimes may HAVE to make.

      UC is one of the worst conditions to have to try and live with.

      Kudos to you:)

    • Eileen June 17, 2015 at 5:20 pm #

      Joe, In all humility, I have been brought to my knees with this disease. I have been so very unhappy and miserable for such a long time living with UC. I need a break in this viscous cylce. I have to smoke right now for my sanity. I absolutely have to. I am going to follow what worked for Bev and Graham and see where it takes me. God’s Blessings!

      • Bev June 17, 2015 at 5:29 pm #

        It does seem like if and when we have to ‘resort’ back to smoking…that we do it with some degree of guilt…

        We should absolutely have NO guilt!

  14. Eileen June 17, 2015 at 5:32 pm #

    Big ditto’s!

  15. Graham from England
    Graham Lee June 17, 2015 at 11:49 pm #

    Well put Joe.

    Guilt definitely and it must be huge for you Eileen. Mine is probably because my mother has emphysema and my wife still hates it even though the evidence is beyond doubt.

    I would say smoking can reduce your life expectancy by 10, 20 or 30% but if your quality of life is reduced by a similar amount or more then do it. I aim to get the benefit when required while minimising that percentage.

    • Eileen June 21, 2015 at 6:48 am #

      I am with you on this Graham. My husband is a thousand percent behind me on this. He told me he has seen me suffering too long with the UC, so whatever it takes. Since, I am new to this method of “self medicating” I will find a balance of what works and causes the most benefit and the least harm. It has been four days and the bleeding has greatly subsided. Almost passed out with the first cigarette. I am not enjoying it. Yet!? Too funny though…..I wrap myself up in a hoody and do the deed, so I don’t smell like smoke….wash my hands….BRUSH my teeth…etc.

      • Bev June 21, 2015 at 7:56 am #

        LOL!

        Like a leper skulking around with a smoke…I remember those good old days…

      • Graham from England
        Graham Lee June 21, 2015 at 7:59 am #

        Great that you have the support, it makes a big difference and well done hubby! You could keep each cigarette functional only by avoiding having them when they may be more enjoyable. Such as after meals or with coffee or alcohol.

        I have had a few medical issues over the years and I can honestly say the greater percentage in improving these problems has been from my own endeavours. The medical profession has helped me get out of the blocks but on each occasion well over 50% has come from managing things myself. It does depend on the problem I guess but UC, lower back trouble, dental issues and transverse myelitis all under control by NOT leaving it to someone else.

  16. Sophie June 18, 2015 at 8:04 am #

    Thanks for all the comments
    I have now been smoking for just over 4 weeks
    I am off all meds thankfully the withdrawal effects from the prednisone were not so good and I am still very tired every day the nausea has subsided a bit hopefully this will go totally sooner rather than later
    Things have improved for me and I am going to loo once a day stools still mushy but hoping that will get better as well
    I know most people out there would kill for once a day so I shouldn’t moan about that
    Still can’t believe 5 fags a day are doing this for me
    I am managing to stick to 5 and if things keep improving I may try the e cig to see if I can get it down a bit more
    Thanks to everyone on here who helped me you have no idea how close I was to getting my bowel removed and only the long wait to see the consultant was the reason I trawled the Internet and found this page and tried smoking
    So once again to all of you thank you I am starting to feel normal for the first time in 7 years

    • Bev June 18, 2015 at 11:40 am #

      OMG Sophie…that’s wonderful!

      How ‘sad’ that it takes cigs to do this so easily for us.

      Feeling ‘NORMAL’!! What could be better than that???

      I am positively thrilled for you girl!!

  17. Graham from England
    Graham Lee June 20, 2015 at 8:26 am #

    Eileen,

    There have been people on Adams great site that have never smoked before but found remission through doing so.

  18. Eileen June 20, 2015 at 8:55 am #

    Thanks for replying…..helps ease the transition. Really appreciate!

  19. Eileen June 20, 2015 at 8:56 am #

    BTW, found some EVOO with harvest date of December 2014 :)

  20. Tim Aucella June 26, 2015 at 4:23 pm #

    It has taken me many years and many attempts to give up tobacco. Well one day I put on the patch and gave it a real try, I am successfully a former smoker.

    I have “quit” smoking for 10 weeks, doesn’t like allot of time but it truly is for me. I had never gone a day in the past forty years without a cigarette.

    My first attack of UC came 7 years ago, when I had cut down to two a day. Went through a colonoscopy and was given a regiment of nine Asacols a day. I went back to 10 cigs a day after a few months stopped the Asacol, later maybe a year was given another colonoscopy. The UC was gone.

    Well I came back with a vengeance, Blood and pain, real scary. Long story short I am on Uceris for two weeks now. Not in much discomfort but there is blood present.

    So I really do not want to go back to smoking and will not, it was a real feat for me.
    I am having three a day to maybe get this in remission. If I feel that I am becoming addicted again I will stop that.

    I hope that the Gastro Dr can get this under control. Smoking really sucks.

  21. Sophie July 24, 2015 at 3:16 am #

    Just wanted to put an update on for anyone who may be trying this or wants more info
    roughly 11 weeks after starting to smoke again I am doing so well I still find it hard to believe this is working
    Still on 5 cigs a day and managing the mental struggle that goes along with this but it is very doable if u can stop u can manage 5 a day that’s what I think anyway
    So progress report for me bleeding stopped after about 4 days I have another bleed day around the 3 week mark but only a day and nothing since
    Withdrawal from the meds caused some crappy side effects which lasted around 4 to 5 weeks
    Going to loo once a day since around 3 weeks and stool now normal which took about 9 weeks
    I’m guessing all of the above will be different for everyone but if anyone needs a rough guide I hope this helps

  22. Billy August 18, 2015 at 6:13 pm #

    Hi all,
    I’m glad alot of you are getting relief with a return to minimum smoking. A couple of questions. I have read that you need actual cigarettes to get relief as the ingredients from the cigarette, tar AND nicotine etc.. are what causes the protective layer to be restored in the colon. I’ve also read that this treatment only works for UC and not for crohns. I wish I could source this for you but I read so much about this stuff that I cant recall where I got it from. lol.

    Anyway, I’m curious if the same results can be had by just using an e cig with nicotine in it. I quit cigs 5 years ago using an e cig. But I’ve been using an e cig with 0 nicotine for 3 years or so. I also have diagnosed crohns in my colorectal area for the past 2 + years. Like most of you I have been on a bunch of meds and struggle going from partial remission to blood/mucus 20 times a day. Not really sure why they call it crohns as it appears the same as UC but thats what they called it.
    So basically is it just the nicotine or is it the smoke too?

    Thanks in advance for opinions and I hope everyone can get some relief.

    • Myk August 19, 2015 at 7:54 pm #

      They actually don’t know what it is in cigarettes that makes them work alone while nicotine only makes steroids or 5asa work better. They’ve never bothered seriously looking beyond nicotine and making a few guesses. It is probably something in the “tar” but tar is not a thing, it is just what they call the sticky soot from burning tobacco, with marijuana that tar is called resin.

      Smoking tends to make Crohn’s worse, but since it’s not diagnostic (I know, I have Indeterminate Colitis that is helped with nicotine, got worse when I quit smoking and that does not diagnose me as UC) it making CD worse is not a sure thing just like it making UC better is not a sure thing.

      Scientifically no, the benefits are not had just from an ecig. But scientific studies are like popularity polls. For the majority nicotine alone is not enough. That’s not to say it won’t be enough for some. There are also e-liquids that are known as WTA that may contain those other magic chemicals besides nicotine, no tests have been done. It could also be the MAOI inhibitors, which I think are a product of the burning.

      I’ve been told by an IBD specialist who doesn’t seem to have a problem with me vaping nicotine for IC that nicotine alone tends to be bad for CD. Whether ecigs could be bad is anyone’s guess, again no tests have been done. Plus varying flavors could have varying results. The PG/VG probably isn’t a problem, they’re in everything. Also closely related to the PEG colonoscopy prep.

      What you said sounds like my original diagnosis. It was CD. After my SBFT was clear they called it UC. Then they changed it to Crohn’s Colitis. This was in like 3 visits, 3 different diagnoses. I said, “It’s Indeterminate isn’t it? I’m OK with that.” She said it was, I’ve been IC ever since. Short of taking a deep tissue sample (i.e., resection) they’re really guessing if there isn’t upper involvement, even with a resection sample they don’t always get it right. For as long as IBD has been around they sure don’t know much about it.

  23. Billy August 21, 2015 at 2:13 pm #

    Thanks for the reply Myk. I guess its going to take some scientists to go about studying it then.

  24. Graham from England
    Graham November 8, 2015 at 2:56 am #

    Posted this on the main smoking thread but needs to be here too.

    This may or may not be the smoking gun for colitis and tobacco but I have no doubt it will be the reason for some of you.

    For 17 years I’ve been through this stopping then having to start again. Well they just found a heavy blood sucking parasite infestation. When you search this subject you quickly realise tobacco effectively controls many parasites. It does not kill them off entirely but numbers will decline considerably.

    Interestingly, parasites love sugar which is also a bit of a no no for us. So if sugar increases your symptoms and smoking reduces them maybe you could try a parasite cleanse? EVOO is also in the charts for dealing with parasites so it may also explain some of those benefits.

    Think you don’t have parasites? Most people do in fact. If you were in a 3rd world country they would suspect it but not in the clean industrial world. Parasites are hidden in the small intestine where they reside. Colonoscopy and endoscopy fails most times and even a specific stool test will often be negative. I know its small intestine and we all have proctitis or inflammation in the sygmoid to begin with but trust me. It will affect distal areas

    I will post more information on this soon.

    • Myk November 8, 2015 at 6:26 am #

      I would think if that was the reason for smoke working chew would work better and swallow (Swedish Snus) would work even better. Nicotine alone would work as good as smoke.
      Then there’s the issue of smoking being worse for Crohn’s, although nicotine enemas seem to be OK for Crohn’s Colitis.
      I’m sticking with it being an unknown cocktail that is slightly immune suppressant. I also think it being “so much worse” for Crohn’s is anti-smoking twisting of the truth putting epidemiology to evil use as I’ve seen them recently try with Ulcerative Colitis and smoking (again).

      I’m not sure how they go about making WTA eliquids and I’m sure those methods wouldn’t stand up to science, but I think extractions and ecigs are where the answers will be if anyone bothers to ask again.

      I don’t doubt smoking could act like you suggest on parasites though.

      • Graham from England
        Graham November 8, 2015 at 7:21 am #

        I don’t think that ingesting tobacco would be better than smoking in this instance. If the parasites are sucking your blood (as in my case) smoking would deliver higher levels of blood/nicotine to them, more directly and effectively.

        This might also explain why the bee study showed around 80% fewer parasites in those around antihelminth plants like tobacco. Bees have blood.

  25. Eileen November 8, 2015 at 4:51 am #

    Graham, if you get rid of the parasites, then you don’t have to smoke anymore? How do they find the parasites in your intestinal track? I’m doing the SCD- very strictly, and the smoking- 4 to 5 per day, curcumin, Fermented L-Glutamine, and the Probiotic. I am 100% symptom free (first time on 8 years). But, if parasites are the cause? Hope all is well besides the parasites…..

  26. Graham from England
    Graham November 8, 2015 at 5:19 am #

    Hi Eileen, really glad to hear you are so well now!

    I hope to never smoke again but we will see, this is all a very plausible explanation that I have not come across before.

    Ive had around 10 cameras and they were never seen, however, they reside where we can’t see them and the prep (though poor) may have moved some down. I think they are sometimes seen further down with a very heavy infestation. The short smoke plan I have used for the last few years may have increased their numbers while remaining fairly manageable.

  27. Eileen November 8, 2015 at 5:27 am #

    Are you seeing a Functional Medicine Doctor. These Drs. Have more comprehensive tests to find the parasites. I looked into parasites years ago, but my gastrointestinal Dr
    Poo- pood the idea. Hmmm…. How do you quit everytime? I think I am ready. Thanks:)

  28. Graham from England
    Graham November 8, 2015 at 7:33 am #

    I’ve not seen a doctor for the follow up yet though thank you for the recommendation Eileen.

    The easiest way I have found is E cigarettes. You dont have to go through the cold turkey this way. Alan Carrs easyway to stop smoking is also very good.

    I’m on ecigs now but will wait to see how things improve before I hopefully quit for good. The confirmation of this being the cause will be along the road a bit. If I can reach a record weight and reverse some of my neurological/digestive issues then success. I am a little worried permanent damage will make this only a partial recovery.

    Since the antihelminth pills I’ve had 4 consecutive days of morning BM’s. There was no colitis seen in the colonoscopy but this morning I had a large teaspoon of mucas. Followed by another BM with a large teaspoon of blood. If the parasites have been dislodged the blood they were taking may be bleeding in to my intestine. This area is damaged and hopefully under repair now. I have taken iron tablets with orange juice and dissolving B12 under my tongue. Both are suggested to be more effective this way as is taking in the morning.

  29. Eileen November 8, 2015 at 8:20 am #

    I also, am taking iron supplements with OJ. Ferrous Sulfate, elemental iron 65 mg. Big improvement in energy level. Taking Curamed which is a great curcumin anti inflammatory. But, My “gut” feeling for years has been parasites. Thanks for the info Graham. Really appreciate you and all the info you give. Years of time spent researching. I have spent years reading too, hoping for some Logical answers.

  30. Mike Robinson May 13, 2016 at 6:24 pm #

    Wow

    Thanks for everyone’s input. I am so pleased I have this resource.

    I am one day into being a smoker. 3 cigs a day. I feel better, even if for three times a day I actually feel ok. Don’t give a damn about the health issues.

    Is the consensus of opinion 5 day day max or 5 a day needed?

    Mike

  31. Myk May 13, 2016 at 10:44 pm #

    I think 5 a day is a balance between effective and low risk (although now anti-tobacco has taken a zero tolerance policy so they claim no amount is safe). I actually think more in the study with no other meds averages out the best. Lozenges and mints also looked promising but I’m not sure if those are still around.

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