I was first diagnosed with ulcerative colitis in 2007 & this was later changed to a diagnosis of Crohn's in more recent times. I am also now going through the process of diagnosis of what is believed to be GPA\Wegeners. I also have 2 discs that are degenerating so we have 3 chronic diseases
I am very interested in the people who have smoked and who quit. The medical profession has known, for quite some time, that cessation of smoking the cold turkey way, can trigger the immune system into starting a god few diseases and they now do not recommend to stop smoking this way. I have heard many stories, from those who quit this way, I have noticed that 2 of my close friends suffered from polymyalgia rheumatica & it made me wonder if this was just too much to be a coincidence ?
I used to smoke, around 10 a day as the norm but this could easily be doubled when I went to a pub or club. I smoked for around 15 years and then I would smoke socially or basically this meant that I never bought my own lol. I then quit, I have always had that hard side to me where I am able to quickly adjust to not doing something that has become an habit. I never ever thought about the correlation with smoking and then being very ill with the inflammatory bowel disease, when I quit. It wasn't very long after I quit that I started to get the many symptoms of IBD but I never thought there could be any link in between the two.
My IBD specialist had told me that they definitely do see a correlation between smokers and non smokers and it is a question that they ask on their leaflets, when you first attend a clinic. My specialist had told me that they knew that nicotine does help with the bowel, that nicotine smoothes the lining of the bowel and that people who had quit smoking were more susceptible to IBD. He went as far as to tell me that they knew that nicotine helped but that they could not be seen to encourage smoking for very understandable reason. I have been asking the many people that I see in the clinics, if they ever smoked and how they felt their disease was, after they quit. I have been pretty shocked at just how many develop the symptoms of inflammatory bowel disease and when they quit the cold turkey method. I felt it would be remiss of me if I did not share this with you.
I have never returned to smoking as that would be extremely silly and especially as we are on some dangerous immunosuppressive drugs BUT I did try patches and gum, both never helped as I was never able to get the dosage right and the gum made me habe uncontrollable hiccups
I now use a vape device. I can honestly say that I have had nearly all of the gastrointestinal stuff go away. I do still get some flare but it is at a minimum and I certainly am now not feeling the urge to run to the nearest loo. The specialists know I use this device and I was even allowed to continue with this when I was hospitalised in June 2015. When I have had times where I accidently leave my vape device at home, I find I start to get the gurgling and feelings of needing the loo but, thankfully, I don't pass blood or mucus.
I am writing this more to ask about people who used to smoke and then have given up and to ask if anyone else has had disease diagnosed after this. I have now found out that the gastrointestinal specialist have actively triallled nicotine patches but, for those who have never smoked, they felt queasy and their heart felt like it was racing & so it is not for everyone. I still have the symptoms of vasculitis but find that the IBD has been relatively well controlled. Of course, we could deduce that the disease is being controlled by the steroids and immunosuppressive drugs but I really do believe that I benefit from using the vape device.
If anyone else has had any experiences lime mine then I would like to hear it. Thanks in advance
Jools
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Jools52
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Have you posted this in the Crohns and ulcerative colitis section of HU? Would be very interested in replies as Hubby gave up smoking about 9 years ago and has never been as fit since two years ago he was diagnosed with Ulcerative colitis along with terrible skin rashes and itching he has always blamed giving up smoking as the cause of his illness. His consultant told him that smokers do not get UC but that smoking again would not cure him either. I have just read your piece to him and he is now looking up vaping.
Anecdotally there is some evidence that Nicotine can help prevent ulcers in Behcets syndrome ( a rare type of Vasculitis ) which can also cause ulcers in the GI tract and present like IBD.
I haven't as I am new to this site so I am still finding the various places to post. I actually thought this post may be taken down as I didn't think it would be viewed as something that is to be in any way encouraged but I can honestly say that it helps me and yes, smokers are not normally diagnosed with UC but people who have given up can be prone to it over those who have never smoked. This is a known variable within the medical profession too.
I know vaping does not yet have enough research to be able to call it as safe, we all know nicotine is addictive but, for me, it's the lesser of 2 evils. I have been vaping for 2.5 years now with no breathlessness or bronchitis which I had when smoking. The IBD is much better and it's very rare that I have those symptoms now. I just thought that I would put it out there and hope that it may help others. Thank you for your reply
Hey Jools - I'm glad you mentioned this because I ask about cessation of smoking every time I visit a Dr and always get a stony silence from them. I gave up 2 Feb 2015 and have recently been diagnosed with vasculitis - 30 Dec 2015 - specifically GCA.
I too vape - only a small amount of nicotine compared to the prior 30yrs as a very heavy smoker. I'm lucky that tests show no cancer - but constantly wonder if giving up has brought the onset of my current condition. Just can't seem to get any info out of the medical profession on it though.
I'll be following this thread with interest - it would just be nice to know if there's any evidence to show that quitting is related to this disease - or if it is something I would have gotten anyway - whether or not I'd smoked.
I don't have IBD - but my stomach is up and down like a yoyo sometimes - and I'm currently on a right concoction of pred and mtx......
It really is something that the doctors will not be drawn upon and I too can't help but wonder if stopping smoking and especially the cold turkey way, is having a detrimental effect on people. Two close friends have developed polymyalgia rheumatica and they quit smoking. I've heard from a fair few others but obviously can't give names.
The IBD specialist will be more open and they will ask us questions about whether we were smokers and whether we quit etc. They DO know that ulcerative colitis doesn't happen in smokers but it does in those who quit. That in itself should be ringing alarm bells and IF they have evidence then it should be made available. Maybe those who quit should be given advice on quitting at a more steady pace ? I too am very interested in any replies as I am doing a study into this myself. It's obviously not going to hold any sway with the medical profession but at least I hope to be able to advise others and in a way that helps them from hopefully triggering their immune systems into causing some nasty stuff.
I know that I developed the UC very soon after I quit so can only speak as I see. As you say, the silence is a worry.
Are you suggesting that no one who smokes develops ulcerative colitis? Can you cite the source please?
The problem is that association isn't causation, the thinking is that auto immune disease is probably genetic and patients then meet an environmental trigger ( be it stress, infection, pregnancy etc ) which can start off the disease process.
What can be said with a great deal of certainty is that smoking when you have Vasculitis is a very bad idea. Vasculitis causes damage to the blood vessels as does smoking so it's a double whammy so to speak. Auto mine conditions pre dispose to cardiac problems, so does smoking. Many types of Vasculitis cause lung disease, so does smoking, need I go on? There is also a type of Vasculitis specifically associated with smoking called Buergers disease.
As for PMR and GCA they are primarily diseases of the over 50's and much more common in the 60's and 70's, is this the only age group that gives up smoking?
Of course the answer is for no one to take up smoking in the first place. 😀
I agree that smoking is a bad thing,absolutely no argument in that at all but there is documented proof, albeit in the trails with nicotine in IBD. I don't feel comfortable in giving the name in such a public forum but if you give me contact details then I am happy to pass this to you.
There is another slight problem with the etiology of the disease as the debate goes on where some say it is fungal in nature. That is another topic though b
I hope that more people come forward with their own experience on this. As I've said, I now vape and it has made a huge difference to me.
I agree about the dangers of smoking in Vasculitis & also it is just a very dangerous thing to do while on the immune suppression drugs. For me, vaping is the lesser of the evils as my life now is ALL about quality over quantity. To be frank, I am very tired of suffering and I am not so enamoured with holding onto a life that is poor in quality. It's obviously very subjective and I think we all have to come to our own conclusions on this & I wish everyone that is suffering with any of these disease, all the best of luck I hope that you find a med regimen that works.
Absolutely Jools - the medics seem to dismiss the notion only too readily that suddenly giving up smoking might induce the stress that may (or may not) cause the onset of vasculitis. It would be nice to know, and even better, if a correlation exists, to warn others about it.
It just seemed too much of a coincidence that this stuff started practically immediately after I quit. Though I do accept it could be age related or genetics, there may be other reasons that warrant investigation. Or other reasons to which the condition is attributable. At least we'd have an explanation.
And it does annoy me when unsympathetic folks say "well you shouldn't have smoked in the first place". What a worthless, unhelpful, and cynical, comment that is when a sufferer is simply seeking to know why they are suffering.
Oh lord, no and I am sorry that you feel that it was. It was an in general comment and in NO WAY was it directed at you at all.
I just get fed up when people, especially those who haven't any experience in the suffering we go through. It was just a comment that was meant in general. I get a fair few who will say this kind of stuff and so it is one of my pet dislikes.
I guess that, because I have now suffered. my own views have changed dramatically and I read some of my letters and posts on various forums and I find it very hard to recognise that it is the same person who had written them.
Sorry that you felt it was directed at you and so, personal. I really don't want to cause any frictions or upset. After all, this is a place where we should be aiming to help one another and to maybe even learn a thing or two.
"Of course the answer is for no one to take up smoking in the first place. "
@keyes (volunteer) I would just like to know how this comment helps anyone? I don't like suffering, and I don't like having a potential fatal disease. And I have known smoking is bad all my life. It's been a huge struggle quitting but I finally did it after many failed attempts. At last I can take a pride in something I did to help myself despite the upset of being ill.
Then I find a seemingly friendly group with lots of information and support and even better - someone who is happy to discuss the implications of ex-smokers (believe me that's hard to find).
So yes - please - kindly explain how your comment helps me - cos it surely feels like I'm being kicked when I'm down.
Brantuck, my comment wasn't directed to you, Jools or anyone on this thread, it was a statement of fact about smoking in general and I feel substantially different from " well you shouldn't have smoked in the first place " .
I see that you have GCA and aneurysms and that your symptoms started quickly after you quit smoking. Aneurysms take some time to develop so the likelihood is that you had " sub clinical " disease for quite a while before your symptoms became florid. Smoking and high blood pressure are also risk factors for aneurysm formation and there is some evidence ( in women because they are more prone to GCA than men ) that smoking is a risk factor for GCA ( I can post the links if you would like? ).
You are " suffering " because you have a genetic susceptibility to Vasculitis, they suspect that developing GCA has something to do with the ageing process as well given its primarily a disease of the over 50's. There are Consulants out there that know a lot about it and I am very surprised that you only took prednisolone for 8 weeks especially with the extent of your disease.
You are right we are friendly, supportive, knowledgable group. I have seen the devastation that cigarette smoking can cause both personally and professionally and because of that felt that I needed to comment on this thread. There has been no hard evidence presented to support the supposition that giving up cigarette smoking " causes " Vasculitis But there is plenty of hard evidence to say that it can make diseases of the blood vessels worse.
I have been called a few things in my time but " worthless, cynical and unhelpful " have never been among them, neither do I have a history of kicking people when they are down. Thankfully I am strong enough not to take your comments to heart, despite this awful illness.
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