Quit Smoking Again

I am currently in remission- and hope to stay so!

I’m Wendy…I am a gardener, kayaker, nurse and cook. I live in rural Iowa and love being outdoors and hiking with my dogs.

I got UC after quitting smoking in 2008 on my birthday.

I was 43.

I had a failed attempt at quitting smoking at 40. I had been working out, feeling great. I wanted to do something good for myself. 2 months later after months of abdominal pain- I started bleeding. I didn’t think much of it at first. Then I started having to go the bathroom several times a day- with blood. Soon it was several times an hour- with blood. By the time I saw my doctor, I knew it was ulcerative colitis.

When I saw the GI doctor- he confirmed Ulcerative Colitis on my first scope- severe pancolitis. The anesthestist at my scope said , ” if you start smoking again it might help”, the first pharmacist that I filled my meds with said the same thing-“smoking might help”. So- and I remember this vividly- I bought a pack of cigarettes after having quit for 3 months. And continued to smoke for the next 10 years.

So now, I’m 53. I’ve again quit smoking. My lungs/health simply can’t handle it anymore. I have a Mom with severe COPD- Im a nurse, I know what smoking will do to you. I really don’t want to have cigarettes in my life.
I’ve been on high dose steroids (never doing that again- and a non responder now). I’ve done remicade (serum sickness- worse thing in my life). And humira-(not currently on because I lost insurance).I’ve flared about every 3 yeats. I’ve for the most part controlled my UC with an SCD diet, and more recently Whole 30 pointed out more dietary problems.

So since quitting smoking I use nicotine gum and vaping to get nicotine in my system. Does anyone have a story like mine? I’m so worried about going into a flare again.

Does anyone have any pointers?

Help.?

I’m sure I’m not the only one going through something like this-

Medications tried/supplements: prednisone, remicade, humira. Scd, whole 30

written by Wendy H

submitted in the colitis venting area




smoking

35 Responses to Quit Smoking Again

  1. Adam
    Adam May 14, 2019 at 5:28 am #

    Hi Wendy,

    Thank you so much for sharing your story.

    I wish you the best with keeping symptoms under control!!!!

    Also, you have some great questions. I did a search in the search box at the top of the site for the word “smoking” and quite a few stories came back.

    Here is one with over 50 comments that you might gain some insight from:

    https://www.ihaveuc.com/the-battle-of-a-lifetime-quit-smoking-then-diagnosed-with-colitis/

    Also, another story about smoking titled “Question for the Smokers:
    https://www.ihaveuc.com/question-for-the-smokers/

    There’s quite a few other stories that are related. But along with comments from others here, this could help too:)

    I wish you again the very best,

    Adam

    • Wendy H
      Wendy K Heath May 18, 2019 at 9:53 pm #

      Thank you so much for all you do for us Adam! There was so little info and support when I first was first diagnosed.

  2. mandy May 14, 2019 at 5:45 am #

    When I quit smoking I got UC too!!!…took over 2 years of many doctors…ALL the different medicines, NOTHING was working, so I went to a doctor that thought outside the box and I got 5 FMT treatments and he said to start nicotine patch or vape….guess what…”CURED” haven’t had ANY flares for over 3 years now!! NO Drugs either…go figure what Nicotine Therapy can DO!!!

    • Susan OConnor May 14, 2019 at 6:41 am #

      As my Gastro doc explained to me many yrs ago, smoking masks the symptoms of UC. So same happened to me every time I tried to quit. I did finally manage to do it and have been in remission for a long time. The only drug I take is Aprisio and VSL3 probiotic. The doctors say they do not know the ingredient in cigarettes that helps UC, there are so many “poisons” So I don’t think just nicotine is your answer. That never worked for me, I weaned off slowly smoking 3/5 cigarettes a day, until my lungs couldn’t take it anymore. I hope you can do it too and find remission.

    • Timothy Taylor May 14, 2019 at 8:42 am #

      Mandy, You are not cured … you are in remission. The Medical community has yet to discover a cure for UC. Take it for me I have had UC since 1991. I have gone into remission numerous times that has lasted anywhere from 1 – 7 years. Just wanted to provide you with the truth. I wish you a long period of remission.

      • mandy May 14, 2019 at 9:32 am #

        That’s why I put quotations around “Cured” I know I’m not “Cured”.

        • Timothy Taylor May 14, 2019 at 10:14 am #

          Mandy, I understand now .. I failed to interpret “Cured” in quotes. Thank you for the response.

    • Wendy H
      Wendy K Heath May 18, 2019 at 9:55 pm #

      Wow Mandy- great for you. Do you think it was the FMT or the nicotine?

      • Mandy Huston May 19, 2019 at 10:58 am #

        Great question! Not sure since I did them simultaneously. ..I also did LDN for a year
        .that could have helped too?!

  3. Susan Seale May 14, 2019 at 6:15 am #

    I had very mild UC (undiagnosed) until 3 years ago I quit smoking after 31 years. My UC went nuts. I’m allergic to all the meds and just recently quit Humira. I started vaping a month ago and so far it’s maintaining the disease better than the Humira and I feel great most days. I found out about nicotine therapy online and was very shocked that quitting made me sick!

  4. Robert May 14, 2019 at 6:26 am #

    Hi Wendy,
    I have lived in Sweden for 20 years and am scottish so my english is a little rusty.
    I also stopped smoking Nov 2014, aged 55 and one year later got UC. Multiple toilet visits with blood in the begining but no pain.
    Use prednisoline in the begining for 2 months to bring down the inflamation.
    Various colonoscopies later and various bouts of prednisolon no real great change
    Been on various tablets asacol and azatioprine being the main ones.
    After 9 months of 150g azatioprin had too many side effects that my gastro doctor ignored so i just stopped taking azatioprin and asked for and got a second opinion.
    Got a referal to a local hospital which handles UC patients and I explained to them what has happened in the last 5 years due to stopping smoking.
    They know about why stopping smoking can cause UC but they cannot explain why.
    At this point in time prior to goint to meet the hospital doctor and stopping with the other doctor I decided to test smoking again to see what happens.

    Forgot to say since I stopped smoking 2014 I have vaped all the time.

    So I started smoking again august 2017, after 3 days of smoking 6 ciggs a day all my toilet visits had dissapeared, no more blood and no more uncertain feelings if I should dare try and pass wind in public places ( without a toilet nearby ).

    After this I tested for 6 months how many I can smoke with out having more flares.Down to one cigg and I felt things were comming back again but if I smoked three that was OK, no more flares.
    I met my new doctor at the hospital in March 2018 and started again with azatioprin but only 50 grams this time and at the same time Allipurinol 50 grams, never stopped taking asacol since 2015.
    So far I vape every day and smoke between 1.5 to 3 ciggs daily and that works for me.
    Robert

    • Wendy H
      Wendy K Heath May 18, 2019 at 9:58 pm #

      Hey Robert. Sorry we are doing english! Thank you so much for your story- I really understand what you are going through. Thank you for your ideas of your nicotine replacement- thats really what Im looking for. Wendy

  5. JoAnn Guagliardo May 14, 2019 at 6:31 am #

    I also got UC when I quit smoking.I became pregnant with my son…who will be 35 yrs old on May 20th. I started getting symptoms..bleeding..but I couldn’t get a Colonoscopy because I was pregnant. So after I had my Son I had the Colonoscopy and it was confirmed that I had UC. That was back in 1984. Over the years I have been on many medications..and now I am currently in remission and my Dr took me off Apriso because he said I am doing good! I hope that everything works out for you!

    • Natalie May 15, 2019 at 4:38 pm #

      JoAnn, did you ever start smoking again?

      • JoAnn Guagliardo May 15, 2019 at 7:04 pm #

        Hi Natalie..No I never started smoking again.

  6. Simon May 14, 2019 at 7:35 am #

    I quit smoking in 1995 and pretty much immediately went into my first UC flare (pan colitis). It was horrendous! I was in hospital for over a month and was put on Azathioprine and Pred. The next year was awful; I felt sick, was bloated, and the UC never really was completely controlled. Anyway, my consultant happened to mention that UC was quite common amongst people who have just quit smoking, so I speculated that maybe starting again would improve the situation. Incredibly, within a couple a couple of weeks things improved tremendously and soon the bleeding had stopped an I was (sort of) back to normal. I say ‘sort of’ because there was a lot of scarring which meant things tended to be on the loose side! So, this stayed pretty much like this for the next 18 years; i.e. smoking kept the UC in remission. I was reasonably happy with this situation except that as I was approaching 40 I felt smoking wasn’t going to be the long term solution I was looking for. I went back to the doctors and tried lots of different meds but as soon as I quit smoking the symtoms came back. I tried nicotine therapy too but it had no effect. The miracle for me was the SCD diet. I have adherred to it fanatically for nearly 5 years and have been a non-smoker from 4 months of starting it. So, now I don’t smoke, I’m not on meds, am symptom free, and am the healthiest I’ve been for nearly 25 years.

    • Rick May 14, 2019 at 12:00 pm #

      Hi Simon

      Yours is the first testimony I’ve seen that really testifies as to the success of the SCD diet.
      I’ve (to put a label on it, we love labels!) pancolitis with Crohns and have had so for the last 20 years with little or no remission.

      I’m delighted for you but suspect that you are a man with will power!

      I’ve tried the SCD diet a few times but it’s not worked – I don’t think I’ve given it a proper chance – I like your description of ‘fanatically’ following it. I tend to overeat so have majored on the nut flower loaf made with butter, eggs & honey from memory, lethal in calories, and I also like white wine.

      Are you moderate in your approach and do you avoid alcohol?

      It’s interesting in that my Crohns colitis started after I stopped smoking.

      Unfortunately I get on very well with pred so am happy to stay on it, it’s pretty effective at keeping some sort of equilibrium, but consultant pressure is now moving me on to Azathioprine (just completed my trial period to assess tolerance).

      However I’d love to be in the place where you are! Wishing you all the best.

      • Simon May 16, 2019 at 12:35 am #

        Hi Rick,

        Yes, I feel extremely lucky. It did take several months for the diet to ‘kick in’ though, so I had to be patient. Plus I do not cheat at all and read the ingredients on all food stuffs (sugar gets in everything!). It certainly does take will power, but to be honest it’s about planning as much as anything else – I don’t go anywhere without my rucksack of ‘legal’ food! I am also very fortunate in that I have a very supportive partner and she puts together some wonderful meals for us. You’ll be pleased to hear that I do include white wine in my diet. It does not seem to cause any adverse effects for me but I am cautious to ensure it is extremely dry; fortunately this is how I like my wine anyway so it’s no great sacrifice.

        It’d be great if you do try the diet again. Try and give it its best chance of success; i.e. stick to it 110% (as I alluded to earlier, ‘illegal’ ingredients hide in everything so be cautious), give it time (say 6 months), and also consider that maybe some ‘legal’ foods are not right for you (I have heard of people that do best when they exclude the yogurt or eggs for example).

        Anyway, the very best of luck with it all and I wish you the best of health for the future!

        See ya,

        Simon

        • Rick Mills May 16, 2019 at 1:39 am #

          Thanks Simon, that’s really helpful. All the best, Rick

    • Wendy H
      Wendy K Heath May 18, 2019 at 10:04 pm #

      Thank you Simon! I also have done great success with SCD. I do find after time(years) I get lax and eat things I shouldnt. I also still had problems with pain and stools. Since I found Whole 30 I learned that all dairy, eggs and certain sugars cuased me problems. Ithink SCD is a great starting point.
      Thanks for your repoly

  7. Greta Dove May 14, 2019 at 11:26 am #

    Please try the Medical Medium books. Understand the problem, then heal it. I go active everytime I eat dairy, a guarantee, so SCD did not help when eating yogurt. I got huge healing when I started celery juice followed by barley grass juice extract powder mixed in coconut water. Works great til dairy , then back to diarrhea. I know it is virus related. Check out cure for Ebola..It is extract from young tobacco plants.

  8. Laura May 14, 2019 at 11:43 am #

    I tried the nicotine gum, on a whim, I smoked for a brief period when I was 19 (57 now). I wasn’t on it long enough to have it make a difference, because I could not get past the nausea from the nicotine.

  9. carol May 14, 2019 at 2:27 pm #

    I stopped smoking and got UC shortly afterwards 8 years ago. have been on Pentassa, Steroids am now receiving Remicade by infusion. My weight has balloned.

    I would rather not take anything but don’t want to start smoking again.

  10. Rita May 14, 2019 at 2:34 pm #

    I also had my first bout of UC after getting off nicotine. I quit smoking in 2007, but stayed on nicotine gum until my pregnancy in 2012, and was diagnosed with UC about a month after my son was born. All of my doctors have mentioned the correlation between UC symptoms and smoking. (Currently 18 months into this current remission, knock on wood).

  11. Susan May 15, 2019 at 1:21 pm #

    We have so many similarities, Wendy — I also quit smoking on my birthday, and 3 months later I found myself cutting a permanent path to the bathroom 25+ times a day, in pain, exhausted and afraid to eat. Pancolitis.

    I come from a long line of smokers — and I was my Mom’s caregiver for the last 7 years of her life, and watched her die of COPD.

    Now I’m a nicotine gum addict, but it doesn’t completely protect me. I take the max dosage of Balsalazide, and recently had another flare which put me on nightly Mesalamine enemas (so sexy) for the foreseeable future, too. I’m avoiding Prednisone because it caused manic episodes in my mother, and I think I’d rather have a colectomy than go on biologics or immune suppressors.

    I started SCD a year ago, and I’ve found true relief if I stick to it, and never miss a single dose of my medications. I’m sure my last flare was due to veering off SCD.

  12. Natalie May 15, 2019 at 4:39 pm #

    JoAnn, did you ever start smoking again?

  13. Travis May 15, 2019 at 9:32 pm #

    if you do the research you’ll find that the tobacco leaf was used for internal ulcers and external officers also it was considered very potent drug at the time it was highly valued and grown by the rich check it out you might be surprised!

  14. Travis May 15, 2019 at 9:39 pm #

    Here’s a link to a reputable source that goes into more detail about what I just commented on.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079499/

  15. Andrea Davies May 15, 2019 at 10:56 pm #

    Hi Wendy. In1984 I gave up smoking to get pregnant, and delivered my first child in August 86.
    Three months later I was diagnosed with UC. Over the next 25 years and through another pregnancy UC relapses became more frequent and severe with ever increasing doses of Salazopyrin,Prednisone and Azathioprine my specialist said surgery was my only option.
    My reaction was no way and started research. Found an article in New England Journal of Medicine on nicotine patches. I started my own trail using 7mg Nicotine patches every day in 2011 and guess what I have been UC free ever since. My specialist was sceptical but ever since every colonoscopy has only showed improvement in bowel condition.
    My GP did his own research and found that in United Kingdom patches can be prescribed as an alternative therapy so he now gives me the patches on prescription.
    I know several other people who have had the same result and while it cannot be guaranteed I would say give it a go. Good Luck
    Andrea

    • Wendy H
      Wendy K Heath May 18, 2019 at 10:10 pm #

      Wow- Andrea. How great for you, I know that UC is different for everyone, but your story is inspiring. I hope that I can keep my disease in control so well.

  16. Graham from England
    Graham Lee May 16, 2019 at 6:57 am #

    Smoking is great for UC and a dirty little secret most health professionals will not acknowledge in writing. This approach may well be for the greater good of everyone else’s health but this hasn’t helped us. The link is so strong but I do not believe it has been sufficiently investigated.

    I quit 20 years ago and you all know what comes next. Fortunately I realised the connection pretty quickly and have always been grateful for the emergency brake. I’ve hated having to start again so many times but learned a nasty lesson 6 years ago when I refused to. I had discovered something massive for me that took my 3 weeks (between quitting and flare) to 14 months. After 14 months the flare came, I went to the NHS and 3 weeks after starting drugs I had an episode resulting in inflammation in my spinal cord. I told my GP that I would start smoking again and she agreed.

    Patches helped but no where near enough for me, the same with vaping nicotine. We do seem to have our minimum dosage and 5 cigarettes a day is mine. Smoking is so addictive and hard to start/stop I always vape so quitting is easy then 3-6 months the flare comes and then easy to start. Vaping also keeps me at 5 a day and not 15 so healthier hopefully. Having tried practically everything I have found 3 x 15 ml of extra virgin olive oil a day works great for me. The anti inflammatory component oleocanthal is effective and safe.

    My theory with smoking is that the high levels of toxins present keeps our immune system busy and distracted from hurting us with UC. Not the whole story for sure though.

    Smoking is becoming quite rare in the UK now and there may be a day when we see another smoker and can ask right out, do you have UC?

  17. Denice Yeagin May 19, 2019 at 8:11 am #

    I quit smoking in September 2015. Immediately began with symptoms and was eventually diagnosed with pancolitis by December. I have refused all drugs except Lialda and canasa suppositories. Currently I have a fissure i’m dealing with. My flares never seem to go away and I’m very frustrated. Wish I could smoke to control my UC but I smoked for 40+ years and know that I can’t smoke just 5 cigs a day.

  18. Robert May 19, 2019 at 8:54 am #

    Hi denice
    I think you can if you can combine them with vaping or nicotine patches.
    I vape all day but i have my x3 ciggs at specific times..
    Nr 1 after first morning coffee ( as i used to do before i stopped in the begining ) then vape until i come home from work with nr 2 and last thing at night before bed…
    As you know its changing your routines that make it happen.
    Not everybody would agree with me but for 2 to 6 ciggs a day may be worth it to ” get your life back”
    Robert… good luck..

    • Denice Yeagin May 22, 2019 at 6:33 am #

      Thank you, Robert.

  19. Josh May 21, 2019 at 4:41 am #

    Hi Wendy.
    We have had a similar ride by the sounds of things. I was diagnised 5 years ago. At that point I had been off the cigs for a year cold turkey, then symptoms started. I was stressed with work and had a relaps back on the cigs. Surprise surprise bleeding stopped. I stopped smoking a few months later and symptoms returned. This time I went and got a diagnosis…UC age 33.
    Long story short these days I keep myself in remission using imuran and also pentassa daily. Ontop of that I use e-cig to the equivalent of 6mgs of nicotine. I get flare every 1-2 years and hit that immediately with prednisolone and if able to smoke a few joints which also work amazing. Thats another topic though but does help, alot.
    Ps. I have veen vaping for 4 years now and regularly do lung fit tests for work. My lung function is in the excellent range.
    Best of luck

    Josh

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