Wanted to share our experience with nicotine therapy

I know this is a controversial subject. I debated on telling our story.

I have been a lurker on this forum for myself (migraines) and for my husband (ulcerative colitis) for some time. What happened with the nicotine was so dramatic, I felt compelled to share.

My husband is in his 40's. He has suffered with UC since he was a very young teenager (we were highschool sweethearts, so I know this first hand!). He began smoking when he was about 20. He still had mild UC symptoms, but never missed work and was never sick enough to be hospitalized during his entire 20's.
He was treated with various sulfasalines (?) mesalamines and prednisone rounds with mild success.
Some blood in the stool and frequency was probably no more than 5 times a day.

At age 30 we had our first child and we both quit smoking. (Me during pregnancy and he just before the baby arrived.) During our 30's his UC flares increased in intensity and frequency, landing him in the hospital multiple times. He had to go on short-term disability at one point and missed a stretch of 6 weeks of work on 2 different occasions.
He looked horrible and weighed 119 during these flares. His frequency was up to 18 times a day and he was missing 4 pints of blood from his body due to all the loss. His body would not "turn off" the inflammation/immune system attack during the last flare, so his doctor tried Remicade. That seemed to help his body "switch channels" (his doctor called it) and start the healing process instead of the continuous downward spiral. However, the Remicade caused serious side effects of a 107 degree fever that lasted for days every time he got an infusion. Still - it was enough to push him towards a remission spell.

Also during this time we discovered he was gluten intolerant and dairy intolerant. Adjusting his diet helped his comfort level greatly. As well as adding VSL3. We thought "Maybe this is it! If he stays off gluten, he won't flare anymore!"

Wrong.
This fall, he spiraled into one of the most rapid and dramatic flares we had ever seen. He lost 15 pounds in a month. His doctor said he had tried everything (we agreed) and it was time to meet with the surgeon. We accepted this as his quality of life had become so poor. We met with the surgeon and got ready.

Then he got a phone call. It was a job opportunity of a lifetime from one of his former bosses in another city and could he come interview in a few weeks? His current company was also having layoffs and it was NOT a good time to be "out sick" or taking extended time off for surgery. He couldn't afford to be sick right now of all times!

Out of desperation I combed the web (as I had so many times before) and found this site and the studies from the UK where 50% of former smokers had success with nicotine therapy. It had never occurred to us how much worse his UC got after he quit smoking. Could this be something?
There were no openings for surgery until the beginning of the year anyway, so he felt he had little to lose and much to gain.

He started wearing a 14mg patch on Oct. 26. He had been charting his pain, bm's, and meds in an iphone app for months. Within 2 weeks he went from 12 bm's to 4. His pain was all but gone. His nausea was gone. His urgency was gone. His appetite came back. By Thanksgiving he was in complete remission and his energy was coming back. His Dr. let him get iron infusions to help with the lack of energy/blood loss.

He was able to go to the job interview in another city and has not missed a day of work since a week after starting the patch. He has regained 12 of the 15 pounds he lost.
He has NEVER EVER pulled out of a flare this fast, not with Remicade or prednisone or anything else.

His GI tried to dismiss it and refused to believe it was the patch that helped him. We know it was.

I know a lot of people on here were saying "It's not the nicotine, it's the C02" or something like that.
One lady who posted said the ecig helped her, even though she was never a smoker.

Is this a cure-all for everyone? I doubt it.
Will he continue in remission indefinitely? We don't know. But right now he feels better than he has in years.
He'll get another conoloscopy next year to check his condition. So far, the surgery is on indefinite hold.

I hope this post helps someone.
Blessings.

Thanks for your story. I think the patch makes sense for safety reasons. I also think that trying nicotine therapy should be higher on the list for former smokers - especially ones who had worse flares after quitting.

From what I have read, this either works or does not, and there does not seem to be any kind of stops working over time effect. I would suggest watching for known side effects like rapid/fluttering heartbeat; and overall to work to maintain cardio health. Heart trouble seems to be the most common downside of nicotine. Lets hope for the best of results.

Post Edited (DBwithUC) : 12/7/2012 8:15:51 PM (GMT-7)

I'm so glad he found something that worked for him at a time he really needed it.
I tried nico patch (doctor suggested because one of her patients got better that way) and got sick as a dog (I'm a "never-smoker" unlike your DH). I even bought an e-cig and tried it, nothing positive but didn't get as sick as the patch.

For me diet mod. is what worked (plus VSL#3) but as you commented that helped him but didn't prevent the bad flare.

I think it's great you made your post. Real people talking about what worked for them without having any profit motive.

Have a great holiday, enjoy your life, you deserve it.

My GI said it pretty much only helps ex-smokers. And, though it has been a long time, that's me. I have a friend who is into alternative just about everything, new age mixed with tribal I guess, suggested tobacco enemas but there is nowhere I could get the raw leaf and anyway, I just can't go that far yet. So far, I have only ever had one flare and it went down pretty quick. I am still on the prednisone though. Down to 30mg/day at this point in my taper.

That's pretty interesting. I wonder what it is in the nicotine patch that calms the UC?

Thanks to everyone for your welcoming response to my original post. I will write an update if anything changes and if he begins to flare. For now, he is going to stay on the 14mg patch indefinitely. I have done exhaustive research on the health risks of this and it appears minimal.

In fact there is a warning on the box that says "do not use for more than 8 weeks" but it will soon be removed because it's unsubstantiated.

Good luck to all in fighting this frustrating disease!

This is a year old thread, but I am the original poster.

It's been exactly a year since my DH pulled out of a life-threatening flare with the nic patch. I wanted to give a quick update.
He is still WELL and completely symptom free on the 14mg daily patch. (He removes it at night so he can sleep better, but puts one on first thing in the a.m.)
He has gained weight and muscle, feels better than he ever remembers, and has excelled both at work and at home. He's gotten the promotion of a lifetime and fully gutted, then renovated our kitchen this year.

It has been a dream come true to see my husband reach his full potential like this. He recently saw his GI, and the Dr.'s jaw hit the floor when he saw him. Originally, his GI didn't want to hear anything about the patch. This time, he was asking my DH all kinds of questions.

Just for reference, he uses the 14 mg Walmart"Equate" brand of nic patch because out of all the ones he tried, they had the least irritating adhesive. Also price is great.

Blessings to all you poor folks struggling with this illness. I really feel for you. Hope you can try to have a happy Thanksgiving and find something that works for you.

art_teacher_mom,

That is an amazing story, and I am glad your husband is doing well. There is some evidence that the endorphins produced from smoking modulate the immune response. This is why things like chocolate, LDN and chili peppers are hot areas of research right now in the alternate medical arena. I am just worried about the long term risks of nicotine. I understand that it is keeping his flare at bay, but perhaps he could be transitioned to LDN or cannabis? Also, try adding in Belgian Chocolate for more immune modulation. :)

art_teacher_mom said...
His GI tried to dismiss it and refused to believe it was the patch that helped him. We know it was.

That would make his GI a moron. This is not unusual in the mainstream medical realm where doctors discount everything that disagrees with their dogma.

Post Edited (StealthGuardian) : 11/24/2013 4:12:45 AM (GMT-7)

art_teacher_mom,

Congrats on your husbands success story. I applaud your and your husband's open-mindedness in trying nicotine to treat UC. Many just think of it in association with " those dreaded cigarettes", and not a naturally occurring product of nature that many people unknowingly digest daily.

I myself have been in remission for 2 yrs. using nicotine to help, altho not w/o regular medication. Yet.


Blessings to you, also.

It's not the nicotine that helps it's the carbon monoxide produced from the lit cigarette that has a calming effect in the intestinal track - nicotine by itself has little benefit. I've had UC for over 30 years now and just got rid of it in a week. People don't realize that all these stupid medications and prescriptions temporarily mask symptoms then cause problems elsewhere. 80% of all your health issues come from the intestines and all the bad bacteria polluting your nutrient intake. I decided to try something completely different by healing my insides to see what happens. I found some real kefir grains online and started to make my own kefir every day using fatty 3.8% hormone free milk - it's the easiest thing in the world to make. I started drinking two cups of kefir a day mixed with some fruit and on day 3 I got really sick. I developed a fever and my airways got severely clogged so was worried that I was having a bad reaction. Turns out this is called die-off when suddenly the body has killed so many bad bacteria that it's having a hell of a hard time removing all this crap fast enough. I kept drinking the kefir anyhow. today, exactly 10 days later I have no blood, mucous or anything wrong whatsoever with my bowl movements. That acrid metallic stench is also gone. I have zero issues with my stomach so far. I even eat the kefir grains whole when they grow too large. Other strange things are happening to me fast as well. A mole on my stomach I've had for 20 years has shrunk down to freckle size. My toenail fungus is growing out fast. My nasal passages no longer react to dogs or dust mites .... all this coincidence? I don't know but it's pretty cool. Those who are not familiar with what kefir is just google it. Basically it's little balls (grains) of pure probiotic bacteria and yeast that somehow eat all the lactose in the milk to produce insane amounts of probiotics that (unlike yogurt) actually pass the stomach and enter the intestinal tract killing bad bacteria everywhere. If you think you're lactose intolerant don't worry - the lactose gets eaten up by the kefir grains within 24 hours. Try it.

Post Edited (Peterjd66) : 11/25/2013 8:45:49 AM (GMT-7)

Hi Art Teacher,

I just noticed the nicotine patches come in 3 steps.  Which one did your husband start with.  My partner is a non-smoker, so I just wondered and want to get it right.

Thank You!

Thanks so much Coffeeman.  I appreciate your help!

Cheers!

Thank you so much for this post, I was in a very similar situation to your husbands, ill to the point where it was life threatening. I began using an e cigarette after reading your post. That was 5 days ago and I am down from 20 bathroom trips to 3 and no longer losing blood. This post gave me so much hope. I am grateful to you for sharing your experience and leading me on the path to remission!