I have copd . . I am also playing russian roulette with smoking.
I have UC (ulcerative colitis) and one way to live my life without having a bag is by smoking. Odd you say, but it can be found on UC sites, that for some smoking can be helpful.
I am one of them.
When I quit I end up in hospital with serious consequenses. So . . I felt that for a quality of life smoking was the answer.
Now, my luck has run out. I realise that I must stop and face the consequences. I am also afraid too.
I am so pleased I have found this site, it means that I am able to talk to others.
AND I wonder if there is anyone else out there with a similar problem??
I have bronciecatasis with associated air flow obstruction. I had uc for six years of my life 26 years ago.I was constantly in and out of hospital and on very high doses of steroids. It was the most miserable and painful 6 years of my life I could bearly face food . Eventually I was so ill i ended up having to have an ileostomy op when i was 26. This cured my UC and I finally got my health back and it was the best thing i ever did as i could enjoy life again. However 21 years later I devolped my lung problemsand so the return of the mighty prednisolone steroids into my life I too was a smoker on and of and not being a medical person and a non smoker during the 6 years i had UC I cannot answer your question but bear in mind that if smoking weakens steroid use, then every time you suffer chest infections it will become harder and harder for your doctors to treat them, wich will result in more hospital stays and prolonged infections taking its toll on both your heart and lungs. If i were you i can only say i would stop if you can as the benefits of the meds for your copd would be effected by smoking,I wish you all the best what ever you decide if i can be of any help, especially if you do need the op for the uc just let me . Good luck.
Hi there. Reading your link article, it seems to say its the nicotine that helps, not smoking. The trials were using patches and other forms of nicotine. Nicotine, although addictive isn't the cause of COPD, it's all the other rubbish in cigarettes that does that.
I gave up just over a year ago after many attempts and I will not smoke again. There is no doubt that your COPD will get dramatically worse if you contine to smoke.
As Zoee says, please discuss these issues with your GP/specialist to find a way forward.
looking at everyone's advice im also a ex smoker of 6 years but don't have uc or know much about it. however while i can see that smoking helped you with your uc its also damaging you with your c.o.p.d. and i can well imagine it would not be nice to have a bag on. but look at it this way i would far rather have a bag and prolong my life spell a bit longer then not have one. you can deal with the self confidence and you can also hide the bag very discretely and if you make sure its cleaned properly. and emptied regular then there will be little problems with it. but certainly discuss this with your consultant and weigh everything up has you say your luck has or is about to run out so you and only you can chose which option your going to go for. its really not so bad having a bag and i do know people who have had them in the past one is my cousin he had no option but to have one and he is only 37 and single and enjoying every minute. whats more it doesn't seem to affect his sex life. which i think is pretty good for someone his age and having a bag on that it doesn't stop him.
You are absolutely right pearl, I have had a stoma since I was 23 and it has stopped me doing nothing I wanted to do and yes, that includes a sex life
Just as every person on here who has breathing difficulties and other health problems, it is up to us to do what we can to make our lives as enjoyable and productive as possible
and if I had the choice of worsening COPD or a stoma, a stoma would win hands down, without question
and for colitis, a stoma is actually curative so for me, even if it were an absolute, the stoma would be the choice - and as I do have a stoma, I think I am able to make that judgement
thank you im pleased someone with a stoma was able to clarifi that for me . i know my cousin doesn't let it stop him and yes c.o.p.d. wins hands down has your having to try and prolong your life with c.o.p.d. and smoking will unfortunately speed things things up in that respect although once your lungs are damaged its not reversible unless you have a lung transplant and lets face there aren't enough donors around. and i don't know about anyone eals but my feelings are if you have smoked your chance of ever getting lung transplants is nill as they class it as self inflicted which i think personally is wrong when years ago when i first started there was no warnings of this on packets of fags. so i personally feel this is wrong. id love nothing better then to be able to run after my grandchildren and to even go out to work and not rely on state benefits as i feel were the ones targeted by the government all the time. and with no qualifications i would be having to do hard manual graft such has cleaning factory's and stuff like that. so that's my rant over ha ha ha
I have been feeling really bad since I left my original post but pearl, thank you as you made me feel so much better
You have not ranted at all and you make an awful lot of sense!
I dont know if their official line is no transplant if you were a smoker and from what I know of the transplant system, if you are on the list and there is a match, then it is first come first served if you are a match.
I agree with you when you say it is wrong if smokers are ruled out, as you point out, there are not enough organs to fulfill the demand but I really don't think if a person is no longer smoking, that a transplant should be prevented from going ahead.
I know within 2 days of my being told I had COPD, I had stopped smoking and while it is tough, the thought of actually picking up a cigerette has not crossed my mind. I still am going through nicotine withdrawl but I see it more as dealing with the withdrawl and never the thought of smoking again.
Now, after being told I probabaly do not have COPD, I still have no desire to ever smoke again, I am simply not going there. I do not have any diagnosis yet but on the off chance that I have got away without COPD or any other serious lung disease, I will see that as being the luckiest day of my life
I have had crohns since I was 18 and stoma since I was 23
My health has been not brilliant for a long long time
when I was told I had copd, what I actually thought was, that I had very little to complain about with my life with crohns. I have had more than a dozen major abdominal surgeries, too many to count minor surgeries. More than once being told I may not survive the surgery.
I have regular acute bowel obstructions that are treated with morphine and the keeping crossed of fingers hoping it clears before I have to have surgery for it
Crohn's, colitis, both inflammatory bowel disease and they can cause disability and like me, sometimes, a stoma. Having crohns or colitis can make life difficult and as I have described, can give you some nasty surprises but in saying all that;
But my stoma gave me life, if I had not had it, I would not be here
you can live without your colon (large bowel) and without much of your small bowel too
You cant live without your lungs.
And this is why I have so much respect and admiratioin for every person on this site because despite my crohns giving me hell at times, I still say I got off lightly when you are looking at which you should prioritize from the 2
hi katlover i really feel for you and whoever said crohn's was nothing to worry about was wrong what ever illness we tend to get in life is a worry but yes you can live without a bowel and its impossible to live without lungs and i wish that idiot David cameron would realize this and everyone eals that thinks were just sponging off the state it really makes my blood boil at times i went to London on behalf of the british lung foundation.two years ago. i would love nothing better then to give that man a peace of my mind. and would love for every c.o.p.d. sufferer and supporter of c.o.p.d. that he should consider us and not make us a target as i feel that's what he is doing he has no right to target us on benefits for c.o.p.d. just because our illness is not always visible. and i too have arthritis and also i.b.s. i really would like them to be on minimum money instead of expensive homes cars and such iv struggled all my life to make ends meet even when i was working. and given a choice now i would sooner have a lung transplant get back on my feet go to work enjoy playing with my grandchildren then this .but its something i have and that's it. i just have to endure everything that idiot throws at us. and please don't feel down hart,ed because that will put you further down and you don't need that so give yourself a little smile and think of every day has a blessing.
Please give up smoking. I was a smoker for over 30 years and last November I was rushed into hospital with pneumonia and had type 2 respiratory failure with heart failure, I was in Intensive care for 5 days. I would never wish for anyone to experience not being able to breathe, until you go through something like this I don't believe we realise how we abuse our bodies. Obviously I gave up smoking, it's not easy, but I'll never smoke again.
My Dad arranged for my brother to have a pipe when at school as nicotine does help colitis. Maybe patches could help as it is the nicotine and nothing else in the fags that helps.
but julie if you have the patches they can only be give for 12 weeks then they stop them because you are supposed to have gotten the nicotine out of your system by then
i never suggested you was huni i was explaining how you should not feel sad and that i felt david cameron was being offensive towards people like us huni xxx
Pearl, sorry if you thought my comment was meant for you?! That wasn't my intention, I would never under any circumstances hurt anyone. I was just trying to say, I had realised how much I abused my body until hospitalised.
oh witty ha ha it was my fault huni i was talking to someone eals and forgot for a few mins i was on someone eals page. and you did not in any way upset me please accept my apology . and yes its no good waiting to give up i wish listened to advice years ago but i guess we all know better till its to late that is xx
I do not have any problems with giving up smoking, I find it easy as I only smoke a small number.
TBH . .It only struck me what was happening the last time on quitting. Only then did I realise that my ill health and painful flare ups coincided with giving up. The last time was so bad, my bowels had become so thin and bleeding, they feared they may puncture.
I had the surgeon and stoma nurse at my bedside with an X on the spot.
I was then rescued from this by another specialist and given a new steroid that I was to trial. Also patches.
Sadly they never worked'
My specialist is aware that I chose to continue. I mean, my quality of life was so good.
Now my time of playing russian roulette is over, I have made the decision to quit. I will make an appointment to see my specialist and run through with him what I am doing.
I probably don't have a clue what I'm talking about (nothing new there!) but don't these new "Electric cigs" provide the nicotine without all the other rubbish?
Just wondered if they might be an option. Sorry if someone has suggested this ... I just couldn't see it anywhere
It isnt the nicotine that helps, I remember after reporting back to my specialist that the patches had no impact he told me it was one of many thousand of chemicals that are in cig's. And if they only knew which one then they would put it in a pill.
Sadly the electric ones only provide the nicotine.
Bella
Well done on making the descion to quit . My heart goes out to you as you have 2 really terrible conditions to deal with.So sorry the new steroids and patches did not work for you it sounds as if your uc is at a bad stage but your really doing the right thing by giving up, I as an ex sufferer of uc do understand how painful it is and the impact on your quality of life but agree with the others that you should put your lungs first . I also agree with KatLover about the benefits of a stoma I have not looked back since I had mine done, it meant I could start living again and was no longer confined to the house, so if it ever comes to that point please dont feel to disheartened about it, also new drugs are coming through all the time. It does seem from things i have heard that there appears to be a link with bowel/Lung disease in some cases. Good luck with quiting the dreaded weed I am so glad that I did it every thin tastes and smells so much better and I dread to think what state my lungs would be in if I had not.A good tip i was given is to put away the money you would have spent on ciggies and then treat yourself to something you would really like very best wishes and once again if I can be of any help especially if you do eventually need a stoma just let me know also I think KatLovers knowledge both as a nurse and a fellow bowel disease sufferer would be really helpful to you to, and she sounds like a really lovely lass to, Good luck katLover with getting a proper diagnosis for your lungs I hope it is all sorted out for you asap as it must be really frustrating.Has any one ever mentioned Bronciectatasis to you as I know there is a link between that as mentioned in BLF leaflet and bowel disease and the symptoms of that are shortness of breath wheezing etc also the treatment ie inhalers steroids are the same as copd Katlover. O nce again well done on making the desicion to quit
I have had problems with my gut since I was 18 to the point now, I manage acute obstructions myself at home with morphine and only go into hospital when it gets to the point where I need surgery.
Baring in mind I am not a Dr, nor even a nurse any longer from what you have said, I wouldnt immediately suspect inflamatory bowel disease.
If you have had a gastroscopy (camera down throat) and that came up clear, I would question a few things.
You said you have sinus problems, have you looked at post nasal drip? it is where, particularly with sinus problems, mucus/secretions are draining and they sit at the back of your throat.
if you are vomiting mucous, could it be that you are swallowing the mucous you from your throat and it is this that is making you feel nauseous and then vomiting?
Classic symptoms of inflamatory bowel disease tends to be, obviously pain, passing blood or mucous from the back end.
But and it is an important but, if you are worried, you really need to go back to your GP, if they are not sure what was going on, they may well have hoped it would settle, if it has not, you need to go back.
There are classic symptoms but as with all illnesses, things are thown up that are not typical so if you are worried, please go back to your GP
Thanks for replying, I somehow deleted the question dont know how !!, I will let you know how I get on I am due back with consultant on Tuesday, Thanks again x
Oh yes I do remember those days only to well, I used to dread going out any where just in case and used to have to plan any trips out with loads of preparation as to the availability of loo's I also used to dread visiting time when i was in hospital as I used to spend most of it on and off running to the loo wich was fine with people who understand the nature of UC but those who didnt thought i was either mad, rude or anti social, especially when i was on the maternity ward when i had my son even the midwifes did not understand then.and thought i was odd, My UC started 3 months into pregnancy. but hopefully attitudes have changed since then. I am just glad i had my stoma and have not looked back . I dont think you ever forget what you went through do you. xxxxxx
I am with you 100%, I am always surprised at just how little general medical knowledge midwives have.
I did something really stupid but at the same time, I am glad I did it. I originally had my stoma as life saving as I had just had a resection and I ended up with a perforation and peritonitis. I was told it was only a temp.
I hung onto that and it was 7 years later a surgeon suggested they try reversing it.
What a flaming disaster. I was sent home and was on the loo in excess of 30 times a day. Because I had no colon, there were digestive enzymes getting into contact on my skin and oh boy, the pain was excruciating and just the idea of going made me cry.
I begged them to give me my stoma back but had to wait for 3 months and it was the longest 3 months of my life and had no life, just like you.
It was actually having it put back that really gave me my life back because up until then, I had not accepted it needed to be permanent. Nobody could persuade me to revert back now even if it were possible.
I consider myself lucky, very lucky in fact. I am alive and I have a quality of life and I am sure you are the same, the only thing that can stop you from doing anything with a stoma is yourself
Oh my . . and here am I, smoking to avoid all the agonies of colitis, feering that a stoma would push me back emotionally. Imagining that it would be the end of my working life, wondering if I would ever be able to survive without an income. Plus wearing a swimsuit on holidays . . ohhh I could go on . .
And what have I got to show for it but another setback with copd.
Good for you guys for fighting the odds in the face of adversity.
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