E-cigs NOT helping my daughter with ulcerative colitis, don't understand

[oplholik]

I've been on Predisone and asacol for a year now. The Dr. keeps trying to get me off of Predisone, and reducing my dosage, but have to keep going back up on the dosage to get it somewhat under control. I have mild COPD from 55 yrs. of smoking, and going back to smoking even 3-5 cigs a day is something I don't want to think about.

 

[Butters78]

I've been on Predisone and asacol for a year now. The Dr. keeps trying to get me off of Predisone, and reducing my dosage, but have to keep going back up on the dosage to get it somewhat under control. I have mild COPD from 55 yrs. of smoking, and going back to smoking even 3-5 cigs a day is something I don't want to think about.

That prednisone is awesome. It was the only thing that really helped. I know it's not good for long term though considering it is a steroid.

 

[oplholik]

That prednisone is awesome. It was the only thing that really helped. I know it's not good for long term though considering it is a steroid.

Agreed. For me tho, w/o it, I'd be where the op's daughter is today. At least now I have some form of functionality. I still not dare get too far away from home for too long, so I have to kinda plan my short trips out. Maybe I should look into this naturally extracted tobacco mentioned earlier, could be worth a shot to try, heck, I'd try almost anything, cept for the ciggies.

 

[oplholik]

Has she tried actual tobacco extraction type ejuice? I'm not talking about WTA vendors.

A couple of Naturally Extracted Tobacco ( NET) vendors who I've tried and liked are:
Heather's Heavenly Vapes
The Plume Room - Candied Cavendish

There is also some vendors who make their tobacco ejuices from tobacco absolute, another type of extraction. They all have a distinct taste and aftertaste, which makes me think they could have different properties that might also be helpful.
Velvet Cloud Vapor makes this kind.

There is a thread in the eliquid forum all about extracted tobaccos and some real experts in the matter. You might want to join in and ask for other vendors. Natural Tobaccos

Your link to natural tobaccos, gets me a 404 error code. I tried the search function for it and came up with nothing. Looking down thru the different forums, I didn't see it. Is it still there? Thanks.

 

[Renolizzie]

Your link to natural tobaccos, gets me a 404 error code. I tried the search function for it and came up with nothing. Looking down thru the different forums, I didn't see it. Is it still there? Thanks.

Use the search box in the ECF forum near the top of the page. You will see some threads there. You can also start a thread in the eliquid forum to see if anyone can help you there.

 

[The Ocelot]

Unfortunately, if you Google: "ulcerative colitis flare up after quitting smoking" a lot of results show up for example:

Quitting smoking and flare up - Ulcerative Colitis - HealingWell.com Forum

 

[Caridwen]

Is this the same link?

http://www.e-cigarette-forum.com/forum/general-e-liquid-discussion/274904-natural-tobaccos.html

 

[zipflint]

I've got UC too, and I also had a rare disorder called Menetrier's Disease. That's not a typo, btw. Google will try to auto-correct that.

Anyway, Menetrier's Disease is best described (by me anyway) as pre-stomach cancer. I had large gastric folds that would bleed. I probably had it for years and didn't realize it. I passed out one night at work (I was a 911 calltaker/dispatcher) and that was the first indication that I had something REALLY wrong. Blood work showed my hemoglobin was a six. "Normal" is about twelve. So yeah....

Both disorders seem linked but none of my doctors have an explanation as to how or why. I was part of a clinical trial where I received Erbitux (a chemo drug usually meant for colon cancer) infusions once a week for nearly 3 years. It kept me out of the hospital but I was never "well." I finally had to have a total gastrectomy. That's right, no stomach. That's how I found vaping, actually. I was never a smoker but vaping lets me taste things without eating, which is a big plus. I have a small faux-stomach; it only holds a few grams of food, so I have to be careful about what I eat, how often, how quickly, etc.

It has caused a LOT of problems.

All of this is just a way of saying to you other folks that I truly empathize. My UC is under control with a heavy dose of Lialda. I'm on a load of other meds too, including enzymes to help me break down "regular" food. Otherwise I would have to live on a liquid diet. Going from 350lbs down to 190lbs was nice but it is NOT a weight loss method I would recommend to ANYONE, unless the situation is quite dire.

 

[oplholik]

Is this the same link?

http://www.e-cigarette-forum.com/forum/general-e-liquid-discussion/274904-natural-tobaccos.html

That works. Thanks Caridwen.

 

[oplholik]

I've got UC too, and I also had a rare disorder called Menetrier's Disease. That's not a typo, btw. Google will try to auto-correct that.

Anyway, Menetrier's Disease is best described (by me anyway) as pre-stomach cancer. I had large gastric folds that would bleed. I probably had it for years and didn't realize it. I passed out one night at work (I was a 911 calltaker/dispatcher) and that was the first indication that I had something REALLY wrong. Blood work showed my hemoglobin was a six. "Normal" is about twelve. So yeah....

Both disorders seem linked but none of my doctors have an explanation as to how or why. I was part of a clinical trial where I received Erbitux (a chemo drug usually meant for colon cancer) infusions once a week for nearly 3 years. It kept me out of the hospital but I was never "well." I finally had to have a total gastrectomy. That's right, no stomach. That's how I found vaping, actually. I was never a smoker but vaping lets me taste things without eating, which is a big plus. I have a small faux-stomach; it only holds a few grams of food, so I have to be careful about what I eat, how often, how quickly, etc.

It has caused a LOT of problems.

All of this is just a way of saying to you other folks that I truly empathize. My UC is under control with a heavy dose of Lialda. I'm on a load of other meds too, including enzymes to help me break down "regular" food. Otherwise I would have to live on a liquid diet. Going from 350lbs down to 190lbs was nice but it is NOT a weight loss method I would recommend to ANYONE, unless the situation is quite dire.

Sorry to hear of your troubles, I can't imagine, but I guess you learn to deal with all that.

 

[zipflint]

No, not really. There are people who are in much worse situations than I am in, but I don't feel that I'm dealing
well at all. The best I can hope for is....distraction. And that's not living.

But I've spun this yarn several times in here already. I feel like I'm thread-jacking.
Sorry about that....

Sorry to hear of your troubles, I can't imagine, but I guess you learn to deal with all that.

 

[oplholik]

I don't think of any of us are hijacking, I know we are not meaning to. Hopefully, the discussions here will give some insight and help to the OP and his daughter, as well as anyone else that may have these problems.

 

[J.R. Bob Dobbs]

honestly, no one can or should claim that PV's have ant health benefits beyond being less dangerous than cigarettes. Not only is it against the forum rules but theres no real research to say one way or the other.


that being said, if the condition you are referring to is the one causing mouth ulcers there is one treatment that worked for my brother in law. Turns out one of the ingredients in his toothpaste was causing his mouth ulcers. Sodium laurel sulfate was the cause in his case. He simply switched to sensodyne(has no sls) and has not had a mouth ulcer in years.
EDIT: im not talking about herpes here, that is completely different than those white ulcers people can get inside their mouths.

 

[oplholik]

You may be correct JR.
Could a mod take a look here, and clean anything up that's not appropiate? Thanks.

 

[Tanti]

I have IBS and since I stopped smoking it has been flairing up, I know UC is different than IBS but I wonder if there is something in tobacco smoke that masks and keeps the symptoms down. IBS is controled by chemicals in the brain and I believe those chemicals are not being produced as much as when I was smoking, Due to cutting out the MAOI from the tobacco smoke.

I have been dealing with IBS for 30 years and this is not the first bad flair up ive had but I was doing pretty good till I stopped smoking. Unlike with UC, IBS is a nervious system problem.
But its a thougth that maybe there is something in the tobacco in the 4000 chems that worked on the UC.

 

[r77r7r]

Your story parallels mine, oplholik. I agree, ask GI for meds quick, or take her to the ER or urgent care.

Here's an excellent I go to daily for UC help-
Ulcerative Colitis - HealingWell.com Forum

 

[oplholik]

That could be very possible Tanti, now if we knew just what.

 

[subversive]

honestly, no one can or should claim that PV's have ant health benefits beyond being less dangerous than cigarettes. Not only is it against the forum rules but theres no real research to say one way or the other.


that being said, if the condition you are referring to is the one causing mouth ulcers there is one treatment that worked for my brother in law. Turns out one of the ingredients in his toothpaste was causing his mouth ulcers. Sodium laurel sulfate was the cause in his case. He simply switched to sensodyne(has no sls) and has not had a mouth ulcer in years.
EDIT: im not talking about herpes here, that is completely different than those white ulcers people can get inside their mouths.

UC is a disorder of the colon that causes bleeding, pain, and excessive bowel movements, and other complications. There's a link between smoking and remission.

 

[r77r7r]

I've heard alot about the carbon monoxide and such that you get from combustion, but I've never seen proof.

I do have very good studies done using nic patches to prolong remission.

After my first flare in late "11, I upped my nic to 12mg and have been in remission since. I'm on 4 lialda daily plus mesalamine enemas which help greatly.

 

[r77r7r]

I just have to pop back on here to say that I certainly wouldn't think that ecigs, or any other nic supply, would be a substitute for a doctors care and meds.

I only use mine to stay off of cigs and I only Hope it helps my UC, but I'm not counting on it.