Please recommend method of Nicotine use

I'm at a breaking point right now - I have been to more GI's than I can count and not one can give me a good treatment to make me comfortable.

Right now I am on Hydrocort enemas every night and lialda.  I am so sick right now, I really need another treatment option. 

I have read all of the posts on people using nicotine, and was wondering if any of them can recommend the best  method for me.  I have NEVER smoked before and am afraid of the side effects.  I don't care about cost, I just want whatever works the best.

Also could you let me know of any side effects you had, so I know what to expect.

Thanks so much!

I am not a former smoker.
I use an electronic cigarette all throughout the day.
I started using it during a mild flare (I wasn't in a lot of pain, had minor blood, urgency and frequency kept me at home).
Using the 24mg/mL strength nicotine liquid had me feeling great in 2 weeks.

I continue to use it (24mg/mL until about 2pm and 12mg/mL the rest of the day) for maintenance. I tried weaning off of it by going to only the 12mg strength and my UC symptoms started to return.

Side effects I experienced:
Crazy dreams at first, which are gone now.
Increased energy, similar to caffeine, so I don't do it right before bed. this side effect has also lessened over time.
decreased appetite. This caused me to lose weight even after I had lost some from my flare.


I've been using this since the end of December and I feel great. I also maintain a diet that works for me and take the other things listed in my signature. The only UC issues I've had since starting nicotine were stress related and short lived.

@imagardener2

Sorry it didn't work for you.

The studies that were done in the late 90s listed a small percentage of the non-placebo group who discontinued the test because of symptoms/side effects exactly like you describe, so you're not alone.

That just shows you how far GIs are willing to go before opting for surgery. It's sad.

subdued said...
That just shows you how far GIs are willing to go before opting for surgery. It's sad.

I consider it just the opposite, for any physician to even hint that nicotine might have any medically redeeming properties is reputational suicide. I think hartsfield’s GI is demonstrating a great deal of professional courage.

I started smoking 2 weeks ago after coming to a breaking point. It has helped me a lot. I don't think it's irresponsible for a doctor to recommend that. These drugs we take are just as bad as smoking cigarettes. I'd rather live a shorter life smoking cigarettes or e-cigs then live a miserable life with a permanent illestomy. That's just my opinion though.

bosnianboy12 said...
These drugs we take are just as bad as smoking cigarettes.

I don't disagree with you there. However, two bads don't make a good.

In my opinion this isn't a good way to control your UC...sorry.

One other thing that everyone should be aware of is the link between carrageenan and ulcerative colitis. Researchers have been using carrageenan to induce inflammatory bowel disease in lab animals for over 40 years, and in the early 70s there was an attempt to ban this food additive. Unfortunately the processed food industry won that battle, and it is now in many, many products. If anyone is unwilling to try nicotine (and I completely understand that resistance), then the best thing you can do for your health is read labels religiously and avoid letting any product with carrageenan in it pass your lips--remember that they use this to create IBD in lab animals so that they can research ulcerative colitis. Not everyone is sensitive to carrageenan--my wife eats it all the time--but it can be devastating to those of us who are.

The unfortunate truth is that there is no "good" way to control UC--at least not one that I've found, and I've battled this disease for more than 20 years. I tried everything--all the meds (most of which gave me severe leukopenia and others which caused even worse problems). I've done every naturopathic "cure," acupuncture, and followed the SCD rigorously for two years. The SCD helped some, and I still follow a modified version of it. Every approach to this disease has pretty serious side effects, and the disease itself is no picnic as we all know. Each of us has to weigh the various side effects of the available medications and make choices based on what we think is best for ourselves.

If our doctors are trying to help us live good lives, they are acting responsibly. I made the decision to start using nicotine to control UC--not my doctor, and I claim that responsibility fully for myself. Since I started smoking a pipe my life has been fuller than it was before. I am no longer exhausted, and I'm back to hiking, skiing, and doing scholarly research. I'm a professor of English and Environmental Studies and believe me I didn't adopt this approach lightly or without research. Cigarettes are far more dangerous than smoking a pipe (or cigars which I don't use).

Post Edited By Moderator (Red_34) : 9/10/2011 5:53:48 AM (GMT-6)

nattybumppo said...
Since I started smoking a pipe my life has been fuller than it was before...

Sorry. I can't advocate, promote, or encourage smoking. Not when my Grandfather died from it and surgery is an option.

No problem, Sherry. I realized after I made a post that I had only changed my screen ID and not my signature, but I changed it after the post. I hope I have it right now.

I think I am a good case for pro-smoking to keep this disease in remission.  I've smoked since I was young.  The first time I quit had my first UC flare.  Started smoking again, each time I stopped (usually I would try every 5 or so years) had colon issues.  I quit smoking two years ago.   Had a good colonoscopy 3 years ago.  Just got diagnosed with severe pancolitis.  My GI (off the record) said that he thinks that smoking had kept my condition in remission and that the colitis has been moving through my intestines for the past two years since I quit.  (Was not on any meds in the past 3 years)  I only smoked 3-5 cigarettes a day.  I've started again.  I'm smoking cigarettes until I'm sure I'm in remission and then I'm getting the e-cigarette.  Apparently the best "vehicle" to get nicotine into your system is through smoking.  I always had bad side effects when I used the patch.  Smoking is "easier" than the patch or gum for side effects (other than the obvious health risks).  I've been researching a lot on the subject lately.  Most information indicates that it does help with UC remission.  I'm willing to smoke to avoid this horrendous disease.

There is conflicting information on the web as well as with doctors. Some say that nicotine itself can help with Uc while others say it's the carbon monoxide in cigs. Personally, I think that the nic gum or patches are a healthier alternative than cigs, which has many different chemicals (not healthy - carcinogens).

However, I think that smokers who quit have a more likelihood of obtaining remission with cigs (or even E-cigs - tho from my understanding, E-cigs only contain nicotine, not the other things found in cigs) than a non-smoker who might have a better chance with the gum, lozenges or patches. But that is individualistic.

Being addicted to nicotine can be horrible tho in it's own right. They say that it's as addictive as heroin. And yes, I am a smoker - have been since I was 14. I did quit for 2 years and I can honestly say that my Uc was HORRIBLE for those 2 years, I than started back up. Does it help with my Uc now??? I have no clue because honestly I'm too afraid to quit, but I would think not if I have moved on to the major heavy guns.

So you need to ask yourself....is it worth it???