Colitis Smokers Unite

Introduction:

Howdy,
Diagnosed with ulcerative proctitus 2011 after quitting smoking. Did not put smoking and UC together until now even though I restarted smoking and had been symptom free until I quit again. Had a flare used a few left over cortenemas and symptoms stopped, of course during the stress of the flare started smoking again. Finally it dawned on me this year when I quit smoking and had another flare to google smoking and UC.

Some more about me:

Golly,
Real Estate Agent, married with a great 2 year old monkey (son). Lived in Jalisco, Mexico for a couple years. Did some house flipping which was fun. 38 years young.

Symptoms:

Flare is flaring down :). Started smoking again and taking enemas, suppositories, and apriso….what a life :)!

Colitis Smokers Unite

Shall I smoke for the rest of my life or have flare ups? Not fair that trying to be healthy causes bloody poop! :)

I can handle the enemas pretty well now but suppositories still bug the poop out of me, maybe not literally.

I’m on a high deductible health insurance plan and have found meds hellatiously expensive. I decided to start shopping pharmacies. I can’t believe how pissed people get when I don’t say fill and I say price. The interesting thing was I had a script for cortenemas 20 (they come in packs of 7 silly doctor) and I went to walmartian pharmacy (hey it’s walmart should be cheap right?) $512 smackers for that one…….I said no. Walgreens had a generic $269 smackers again said no. Then I went online to goodrx.com they not only gave me a prescription plan number but told me an estimate of $90 bucks at CVS? Not believing I went in to CVS expecting them to laugh and then they filled it and it was actually only $81? How can it be that some people get charged 512 and I got it for 81? In fact the only thing that I can’t find reasonably is of course what my GI guy wants me to take daily (apriso or asacol). If anybody has a cheap way to corner the market on those bad boys that aren’t $2 a pill when I have to take 4 of them daily I would be all ears.

Anyway that’s me smoker or bloody poop………what a decision. I guess I’ll be smoking for at least the near future…….colon cancer/lung cancer at least I like smoking although it pisses me off that I have to. I have to admit this is first time I’m smoking and really don’t want to!

Before I realized the lack of cigarettes made me flair I became a vegan smoker and thought it was the diet that was helping me. I think this evening I’m going to eat a tbone and bowl of ice cream….just kidding.

written by Andrew M

submitted in the colitis venting area




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24 Responses to Colitis Smokers Unite

  1. Holly in Virginia
    Holly August 14, 2013 at 8:35 am #

    Apriso has a savings card so you pay less. http://www.aprisorx.com/apriso/savings-card

    • Andrew Moya August 15, 2013 at 12:27 pm #

      Awesome I will download card :)

  2. Carly August 14, 2013 at 8:37 am #

    I found the same thing with my UC. It was a tough choice but I treated my cigs like meds. I had them certain times a day and stuck to a certain dose. I never increased that amount (I am fortunate that I am not someone who has addictive tendencies). Are four cigs a day optimal? No. But I failed off of every drug out there (all biological, immunosuppressants, ASAs etc) and no one would give me a colectomy. I really felt I had no other option for a somewhat normal life. At least I can enjoy life and my family now, even if smoking takes a few years away from me. That is at the end of my life. UC was taking me at my prime. Good luck to you!

  3. Chris August 14, 2013 at 9:30 am #

    I had the exact same thing! When I was diagnosed with UC in 2005, I had quit smoking for a year and a half before that, my 2nd son was born later that year and I had started smoking again (stressed out). My symptoms were fine for a long time (occasional small flare but nothing bad). I quit smoking again a few years later for about a year and a half and sure enough, I got pretty sick, prednisone stopped working, enemas stopped working, then I put it together. First I tried a nicotine patch which worked for almost 2 weeks then the flare returned, and it was either start imurine or remicade or smoke…I chose smoking. Now I take omega-3 vitamins regularly, along with vitamin C and a lot of water, and it seems to be working for me. I loved that I felt that I was finally done with smoking, but if it’s stopping the flares without having to go on meds with all the side effects, so be it. Really hoping that they’ll find a cure that doesn’t involve major surgery, I’d love to be smoke-free again some day.

  4. Wendy August 14, 2013 at 9:48 am #

    My daughter was diagnosed with UC and was not smoking. I was diagnosed a year later, and have smoked for most of my life. Same disease……different symptoms. She can eat things like bell peppers, tomatoes, and fruit with the rind, I have to peel everything and only eat jarred roasted red peppers. No rhyme or reason, but the only thing my daughter and I share is that we cannot tolerate any greasy food and agree that this is a horrible disease.

  5. Lindy August 14, 2013 at 10:15 am #

    I recently quit smoking two weeks ago after using it to treat my UC. So far, I’m doing well. My doctor put me on 6MP because I was becoming steroid dependant and losing bone density. It’s frustrating, but I know how you feel. What is the lesser of two evils??? While I hate that I smoked (especially because I am a runner!) it allowed me to stay in remission and live my life normally.

  6. Joanie August 14, 2013 at 11:52 am #

    Wow. I guess maybe I shouldn’t have stopped smoking 6 years ago. Never had ulcerative proctitis back then. What a strong group of people you all are. God bless

  7. Graham from England
    graham lee August 14, 2013 at 12:23 pm #

    In case you haven’t read it, here is a link to 2nd most popular thread on this site, all about smoking and UC… There are alternative suggestions and lots of pondering.. Fascinating for all ex smokers..

    https://www.ihaveuc.com/does-smoking-really-help-ulcerative-colitis/

  8. bev August 14, 2013 at 2:25 pm #

    Ain’t that the truth…I wonder if those e-cigarettes work just as well…

    Anyone know?

    • Carly August 14, 2013 at 2:28 pm #

      They contain nicotine, which is the portion that helps UC. Nicotine patches and gum have also been studied and are effective.

  9. bev August 14, 2013 at 2:31 pm #

    Mmmmm…sounds good!

  10. UC Family Boy
    UC family boy August 14, 2013 at 3:16 pm #

    Same here. Quit smoking and bang, hello UC. Going Tunisia last month I did ashesa and my symptoms improved somewhat.
    Now I am back smoking 2 a day just to keep UC at bay until I do FMT. INFACT just a thought, maybe the calming nature might even help with FMT. What has been interesting is although smoking has stopped the blood it hasn’t really effected the urgency or mucus but I feel my imbalance is such that unless I increase the cigs I must rely on diet.
    So this week I was strict again on my diet and today, after 3 months of 5/6 BM a day I had 2 formed BM. I must stress 3 months of nothing but D and suddenly, formed stools-no mucus no blood. Just shows how quite your body can help itself.

  11. Kathy Prieto August 14, 2013 at 3:54 pm #

    Exact same thing happened to my husband!!!! He smokes 5 a day to keep flare free- he does not do SCD anymore either. He tried patches and gum but he flared on those too. We also have a high deductible insurance and those expensive drugs did nothing for him but burn a hole through the wallet!!!

  12. Joe August 15, 2013 at 3:16 am #

    There are studies linking UC to ex-smokers – obviously, this is not to say people who’ve never smoked don’t get UC. I started smoking again (5-8 p/day) and this helps relieve cramps from bleeding; in conjunction with the Paleo diet, and high dose pro-biotics. These factors have helped get my UC into some form of remission – unfortunately still blood – but, formed stools 2-3 times per day. I’ll take the risk of shortening my life from smoking, over having to live with active UC – no contest. I wonder sometimes just how crazy this disease is when smoking helps relieve symptoms. Peace

  13. Elle March 29, 2014 at 5:24 am #

    10 years of colitis and 4 of those were spent smoking as a method of avoiding steroids and hospitalisation. I gave in to a Gastroenterologist who convinved me a 26 year cannot live her life in chronic relapse. After a decade of pharmacaphobia i surrendered and let them give it all; 6MP, Remicade, 50mg roids, 4g of mesavant. I was spared surgery. What i realize above all, is that it is neither nicotine nor immunosupressives that will spare us from a terrible fate, it is within us to control the fears, pains, stresses, anxiety, depression to truly change the course of our disease. Our diet, our environment, our working, social and family lives play a dramatic part. Colitis reminds us that we need to stop and re-evaluate our lives, to start again, to work on living a better life and to advocate to others the need for others. Colitis, you can kiss my arse. Soldier on secret soldiers X

  14. Graham from England
    graham lee March 31, 2014 at 3:11 am #

    Great stuff Elle and we’ll put!

  15. Barry February 24, 2015 at 7:51 pm #

    Quit smoking just over three years ago. Went about 4 months before I started getting sick. Had a colonoscopy last year resulting in a diagnosis of severe Ulcerative Colitis up to the sigmoid colon. Started on the Prendisone , but that didn’t stop the bleeding, Pentasa tablets and enemas but that didn’t stop the bleeding either, SCD diet, that gave me a lot of relief but I was still bleeding. Last November the Doctor wanted to put me on immunosuppressants. I went home and the next day starting smoking. Within a week or so I had stopped bleeding. Its now February 2015 and I have just had a colonoscopy. Guess what? My entire bowel is normal. I have stopped taking the enemas and feel so much better just doing this alone. I’m still on Pentasa but am hoping to cut the dosage down to two tablets a day instead of 4. Smoking is not the cure but its a treatment. I feel alive and am slowly recovering. I am glad I did my own research and thought about this myself. Question everything.

  16. Graham from England
    graham lee February 25, 2015 at 9:51 am #

    Very true Barry..

    I would like to endorse E cigarettes, particularly for those who feel they are imprisoned by cigarettes due to Colitis. I’ve done the gum and patches with only a very small benefit. I have other medication free weapons in use but I am really admiring my poo at the moment (like one does)..

    • Bev February 25, 2015 at 10:39 am #

      LOL! As one does…yes…embarrassingly we cannot help but have a look…

      As to the cigs…do E-cigs in fact, help, like regular cigs? Does anyone know for sure through personal experience?

      I am so interested in this. When I was a smoker for some 20 odd years, there was not a whisper of UC. I had no problems until after I had quit for good.

  17. Chris February 25, 2015 at 11:02 am #

    In my experience e-cigs, patches, etc. dont work like regular cigs do unfortunately. I was hoping they would, but I flared within days.

    • Bev February 25, 2015 at 11:17 am #

      Mmmm…perhaps it may be different for different people with UC, as with Graham’s comment about bacteria vs virus?

      More trial and error is needed.

  18. Graham from England
    graham lee February 25, 2015 at 11:07 am #

    I always have a look but still forget to put the lid down..

    I’m using tobacco e liquid, no extras just nicotine.. I thought it was this that was helping though I also swapped Lactose free milk for A2 milk. Not 100% which is providing the greater benefit but would have presumed the e cigs.

    At least now most ordinary doctors recognise the benefits of nicotine to UC, if only in private.

  19. Barry February 25, 2015 at 5:58 pm #

    Gday Graham

    I tried the gum and an inhaler( Not a proper e-Cig) and did get some benefit but I would measure it at about 10-15%. I cut out everything as far as food goes and was living on a diet of Sardines,Tuna( in water) Chicken( Hold the skin) and Bell Peppers steamed and blended. I lost around 30KG, My GP admitted to me that the smoking works as an immunosuppresent, No wonder there is no smoking benefit for crohns suffers as it is becoming clear that a lot of crohns is caused by infection. I am going to try eCigs but will first look to put on some weight before I drag my body through the next experiment. I trialed eating some rice over the last couple of days and have become bloated . So looks like food will be my next challenge now the bleeding and inflammation have cleared up.

  20. Graham from England
    Graham February 26, 2015 at 1:57 pm #

    Yes Barry I sure know what you mean about being between experiments and getting physically and mentally ready to “go again”.

    I used a cheap battery/e liquid/clearomiser at first which was ok but it is well worth paying a bit more for quality and reliability. Using the cheapest equipment is a bit like having a packet of cigarettes with different strengths and tastes.

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