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Nicotine Therapy Questions

Introduction:

I am a 20 year old college guy in Missouri, United States. I am a biology major, so understanding the science of UC is really fascinating to me.

Some more about me:

I play classical music, work in my school’s greenhouse and love plant biology. I’m from Kansas City, Missouri.

Colitis Symptoms:

I was diagnosed with moderate UC last May. The doctor said my Colitis was on the more severe side of moderate. Since then, I’ve gotten on a couple steroids (Prednisone, and currently Budesonide) that have helped a lot. Currently I have about 5 stools a day, all in the morning or early afternoon. formed but somewhat painful with some blood, but not much.

Nicotine Therapy for Colitis

I’ve been suffering with Ulcerative Colitis since last March, but since being on steroids my symptoms have been alleviated quite a bit. It still affects my life a lot. I am limited in physical activities and my grades have started to suffer.

I tried the SCD diet for 3 months with very little success. Currently, my doctor wants me to try Imuran to get off the steroids and keep me in remission. This is great, but I am concerned about the risk of T cell Lymphoma. I normally would not care, because the risk is so low, but I am a young adult male, and for unknown reasons being my sex and age group greatly increases chances of developing this rare type of T cell lymphoma on this medication.

So I have decided to try nicotine as I have read multiple studies on pubmed.com that state that nicotine may have a better success rate than many of the conventional therapies for UC.

10 days ago, I started using an e-cigarette and smoking approximately 20-30 mg nicotine/day. Within the first week I was feeling much better, and had the best 3 consecutive days I have had in a LONG time. However, I tried a new flavor of nicotine oil which contains clove oil 4 days ago. CHAOS ENSUED. 2 days in the bathroom in and out and feeling very nauseous! After this incident, I looked online and found that clove oil is a powerful inflammatory agent! Just my luck!

Now I have resumed smoking the other flavors (pineapple and lemon) that did not bother my guts.
I am back to my normal 5 stools a day, with very small amounts of blood. I am feeling about the same as I always have on Budesonide: Normal, with about 5 stools in the morning and some nausea throughout the day.

My question is this:

If the nicotine does work for me, how quickly will I know? I need to know relatively soon to determine whether or not I will need to supplement my treatment with Imuran (which scares the shit out of me, pun intended.)

Thanks for any answers you can give me, or just words of encouragement. Sharing any experiences with Imuran or Remicade you have had would be greatly appreciated as well.

Colitis Medications and Treatments:

Currently : Budesonide 10.5 mg/day. 2 probiotics a day (Digestive Advantage: gas defense formula). Nicotine started 10 days ago at about 20 mg/day.

The good: Budesonide and probiotics

The bad: SCD diet. Almost no change in symptoms and made it impossible for me to eat with people!

The ugly: Mesalamine related drugs (Lialda, Sulfasalazine). I have an awful reaction to them which is 1 part Influenza, 2 parts nightmare, and even made my UC WORSE temporarily.

Many thanks,

August

submitted in the colitis venting area




nicotine

18 Responses to Nicotine Therapy Questions

  1. TiiniTete
    Tiinity January 28, 2013 at 2:49 am #

    Hi,

    We are all different. Nicotine never helped me but SCD has improved my quality of life… I guess I should list what didn’t work for me and you will know what to try! Kidding aside, by searching for answers I am sure you will find yours!

    All the best of luck to you!

    • August January 28, 2013 at 4:29 pm #

      thanks for your reply! I tried SCD for about 3 months and it did next to nothing for me. I’m very happy it works for others though, we’re all different and need our own treatments :-)

  2. KimberlyHI
    Kimberly January 28, 2013 at 11:48 am #

    Oh my goodness, I am glad you are feeling better but sorry you are struggling with this! Well, I used to smoke. When I quit smoking, within a couple months my very first UC symptoms started. Along the way, I have started smoking and quiting, but finally quit again in Marcxh 2011. The smoking did make my symptoms better and sometimes I would smoke just because of a flare. Of course in the end I wanted to quit because of cigarettes being so bad for you. You are using the e cigarettes, I don’t know anything about those! Are they just air with nicotine in them? See I had a GI doctor tell me that they had tried nicotine patches on people with UC and it didn’t work, so they thought something in the cigarette smoke helped UC, not the nicotine, however it sounds like it is helping you so who knows? Cigarettes helped my symptoms within a couple of days.

    Anyway, I am on Imuran and Remicade now, and have been since September 2011. I am also very worried about the lymphoma thing. I sometimes think about how scary it would be to get cancer and then what? The risk is extremely low but it is still scary. People tell me well everything is at risk of causing cancer! That doesn’t make me feel better though. I was so sick I had to do something though. I was being hospitalized when they started me on these drugs. I needed to get well so I could go home to take care of my baby. So I did it and feel much better. I have side effects of hair loss, nausea, and acne. Now that I am better, I want to make it a goal to get off these drugs and try something else. I am working with my doctor on this, he is slowly decreasing my imuran dose now.
    If I were to go back, I would still go on the remicade and imuran, I was very sick and saw significant improvement within 3 days. After months of being holed up at home and 5 days in the hospital, I desperately needed to be able to live like normal again! If you don’t feel too terribly bad and want to try other things before the drugs, there are many things you can try or keep to the nicotine for a bit longer and see how you do. I hope you feel better soon!

    • KimberlyHI
      Kimberly January 28, 2013 at 11:49 am #

      correction: Been on remicade and Imuran since Sept 2012, not 2011. :)

    • August January 28, 2013 at 4:40 pm #

      thanks! I decided to start Imuran anyway, because the risk is so small after all, I just can’t let myself get bogged down by worrying about it!
      E-cigarretes are basically just water vapor with nicotine oil/vegetable glycol oil in it. They seem to be helping somewhat with my symptoms (I can tell bc when I forget to smoke, my symptoms get a bit worse), and I have none of the bad side effects of smoking :-D.

      I had a doctor say something similar about nicotine, but he stated it more as “we don’t know what exactly in cigarettes helps UC.” After he told me this, I looked up a lot of studies on pubmed.com that showed about a 45% success rate on average. That may sound kind of bad (1/2 of patients in remission), but the reality is, Prednisone, which is the MOST effective medication, has a remission rate of about 60-65%. So, just plain old nicotine has much fewer side effects and is extremely effective in inducing remission according to many of these studies!

      It’s really cool, and maybe someday the medical community will advocate nicotine use for some of us UC’ers.

      Oh, I should also mention that nicotine was EVEN MORE EFFECTIVE for people who used to be smokers and quit, then developed UC.
      In all honesty, I think you should try nicotine gum or e cigs and at least see if it works, given your history of smoking. I know I’m no doctor, but it really can’t hurt you at all, and you won’t know if it will help until you’ve tried it.

      I’m sorry you’re feeling so badly, and wishing you well!

      • KimberlyHI
        Kimberly January 29, 2013 at 12:11 am #

        I hope the Imuran works well for you! It with remicade has made me much better, I am pretty much symptom free right now, after only a few days on it I was way better. And the doctors will constantly have you do blood tests to make sure the meds aren’t causing any problems. If it came down to it, I would try nicotine again but for now I am in good shape! :)

        • August January 29, 2013 at 12:22 pm #

          Glad you’re feeling better!

  3. Graham from England
    graham lee January 28, 2013 at 2:28 pm #

    I only smoked normal cigarettes but I stopped many times while doing my own crude trials. Symptoms (bloating) began within 24hrs and became too much after 2 – 6 weeks. This sometimes included blood and resuming smoking made things clearly better within 2 days and almost normal within a week. I just had to live a normal life so this was my solution (though I was always prepared to try something new). Fyi, probiotics extended my well being during trial periods so I stuck with those, using the supermarket yogurt (which I am now told is full of sugar). Nicotine patches helped extend the period to 6 weeks but this was my record until I stumbled on EVOO. I am as well with this as I ever was with smoking and the bowel pain I used to wake with every morning has also gone. This is SO good and I am no longer killing myself.

    Check out the link on this site http://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/
    I am fascinated by the properties of this amazing substance, its anti inflammatory properties, how it may also act as a probiotic and improve the gut microbiota. Most of my crude trials were over 10 years ago and its great to now see research that may provide a more natural solution (for some if not all). Good luck with the search for your solution, though I am sure you will be fine as you are here already…

    • August January 28, 2013 at 4:45 pm #

      Thanks Graham!

      I will definitely try this solution, as it’s cheap and who doesn’t love olive oil right?
      It sounds a little far-fetched to me, but I can’t knock it till I’ve tried it!

      • Graham from England
        graham lee January 29, 2013 at 1:11 am #

        Sounds hard to believe but there are people here and contacting me on Twitter (#realslimshakey) having success with it. I was totally cynicle about natural remedies/cures as I am sure you are but never say never…
        Dont forget it has to be extra virgin, the purity is important. Why not read some of the articles within the post, dont just take my word for it?

  4. bev January 28, 2013 at 3:06 pm #

    Hi August…

    Please read Graham’s post. This olive oil thing is marvelous, as is a good probiotic. I’m not on the olive oil as yet, but I will surely try it if I lose my remission. I take a 50 billion strain probiotic(on an empty stomach always, and no food for an extra hour). I also take fermented L-glutamine. I am in remission without any meds at all. Imuran and other immune suppressors appear NOT to be the answer. Overkill on the dangerous side, when natural things like olive oil and probiotics will attain longer better results, sans the awful side effects…especially for a young man like you…

    Take care of you and follow your instincts…they are usually spot on!

    Bev
    :)

    • Andrew (Ireland) February 1, 2013 at 6:31 pm #

      Hi Bev,

      Can I ask you what brand of probiotic you use? At the moment I make my own SCD yoghurt and empty a capsule of Probio7 into it to try to bump up the potency but I’m not sure it’s potent enough. Also, what is fermented L-Glutamine? Is it any different to the regular stuff?

      Thanks,
      Andrew

      • bev February 1, 2013 at 10:58 pm #

        Hi Andrew,

      • bev February 1, 2013 at 11:01 pm #

        Sorry about that…

        I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. Mot sure whether you can get it in Ireland, but get at least a 50 billion strain one.

        I don’t know the difference in the L-glutamines…the one that I take says fermented on the tub of it. I think ‘feremented’ is a good thing…can anyone chime in on why??

        Cheers
        :)(

        • Andrew (Ireland) February 2, 2013 at 3:30 am #

          Thanks Bev,

          I’ve just found a website in the U.K. that sells them. A bit pricey but worth a shot!

          Cheers
          Andrew

  5. August January 28, 2013 at 4:52 pm #

    I tried the SCD thing and have tried numerous probiotics and found the one that works well for me. My doctor says he’s given out Imuran for about 20 years with only 2 cases of serious side effects (pancreatitis… non-lethal, but not fun to get).
    I’m trying to remain wary of high-power medications, but this particular one seems to have a lot less severe side effects than the others. And the natural therapies have only given me limited success so far.

    Having said that, I’m definitely going to try the olive oil thing and continue with probiotics. I will throw everything and the kitchen sink at this stupid illness!

    Thank you so much for you input!

  6. Kathy Prieto January 28, 2013 at 6:08 pm #

    My husband responds very well to 5 cigarettes a day. He also uses snus(tabacco packet that u can put under lip- snus does not work as well as cigarettes but better than patches and gum- neither worked for him. He takes no medications at all. During his last bad flare(2 Years ago when he tried to go off cigs and just use snus(it was going well with just snus but kids got a gi bug that he got and triggered the UC flare) they were ready to start Remicade- he was down to 100lbs, he started the cigs back plus ALOT of VSL, coconut oil in whey protein shake and glutamine which turned him around. SCD also helped then but he does not do it anymore. I have to say, he lives normally now that he smokes the 5. He is originally from Mexico and when he went for a visit recently, he said his stool was amazingly normal- we figured that with all the socializing… He smoked even more- more healing? When he came home to his normal 5 a day, his stool gradually became softer. It has been the best medicine for him by far.

  7. Andrew (Ireland) February 1, 2013 at 6:38 am #

    Hi August,

    With me, when I stop smoking, I’m in flare-up within 4 days, and when I start smoking again I’m in complete remission 4 days later. As previous posters have said, it seems to be a combination of nicotine & something else (possible carbon monoxide). I tried electronic cigarettes and patches and these didnt help. I switched from tobacco to snus amd this kept me in complete remission for 3 weeks but then the UC started to re-appear (although not severe). I tried a combination of cigarettes and snus and it was a month or so before symptoms started to reappear (strangely enough, it was blood only, no mucus / diarrhoea /gas, or urgency). At the moment I’m experimenting with snus and EVOO (thanks Graham!). I haven’t smoked cigarettes for 2 weeks and everything is going great. Its a bit soon to tell if this combo will work but fingers crossed. By the way, I don’t take any meds as they didnt work for me and the SCD diet didnt work for me either. Each to their own, don’t rule anything out!

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