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Smoking with an ileo

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Posted 9/24/2013 8:13 PM (GMT 0)
Hello all,

Just a quick one. Does anybody smoke who has either an ileo or a J-pouch and if you do, do you find it helps with getting rid of any symptoms or does t make you worse but you just enjoy the smoking too much to stop just because of the illness?

Simon
Posted 9/24/2013 8:25 PM (GMT 0)
Hi, sorry can't help I gave up 13 months ago! (Smoked for 16years)
Although it didn't make ANY impact on my UC either way

..not gonna preach about smoking, you no the hazards

Good luck!
Posted 9/24/2013 9:42 PM (GMT 0)
The data seem to say that smoking can improve UC symptoms but tends to make Crohn's worse. Specifically I've read a few studies that show that longterm surgical outcomes for Crohn's patients are worse in smokers.

You've already been through a rough time healthwise... I wouldn't court any more trouble. That's my two cents.
Posted 9/25/2013 9:17 PM (GMT 0)
What symptoms are you hoping to reduce by smoking? From my own UC days I tried nicotine patches and smoking (I was otherwise and am always a non-smoker) and not only did it not help, but it increased urgency- I think by greatly spiking my blood pressure, it increased the sensitivity of my sphincter muscles to any pressure. So I dont see how smoking- even not counting how horrible it is for overall health- would be of any use now.
Posted 9/26/2013 11:52 AM (GMT 0)
I smoked for years without having any UC symptoms other than IBS and it was only after I quit smoking that I became very ill and very quickly with the UC. My consultant said he anticipated I'd been surrering with UC for over 6 years but the smoking could have masked the symptoms. I continued to stay off the smoking for a year after my inital surgery but I was still feeling very sick after eating and having stomach cramps. I decided to try the smoking again and to my amazement, as soon as I started, the symptons stopped. Now if I do start to feel sick after a meal, I go outside for a few mins and have a smoke and I suddenly feel fine again.

Just wondered if anybody else had noticed the same?

I know the long term health problems to smoking but I am not the sort to stop through future fears, not when I know my health isn't amazing anyway!!

Simon

Posted 9/26/2013 12:16 PM (GMT 0)
My UC popped up after I quit smoking too. So between that trigger and UC running in my family I was doomed! I certainly don't regret quitting though. Smoking is just....well you know....I don't need to lecture! :p
Posted 9/26/2013 12:37 PM (GMT 0)
I had my Ileo surgery due to UC at 10 years of age so didn't start smoking until after my surgery lol I haven't had any symptoms since surgery though so smoking hasn't affected it in any way.
Posted 9/26/2013 1:40 PM (GMT 0)
Petal- interesting - it could well be that you have some sort of IBS or something that is setlled down by the calming effect (in your case) of the nicotine- just a wild guess. You could always try and see if e-cigs have the same effect- not as harmful long term obviously. But I agree with Shaz, no one here needs to be lectured- one is an adult and if something helps you, it's your choice- it certainly shouldnt hurt the stoma per se.
Posted 9/26/2013 1:54 PM (GMT 0)
I was just curious as I know that the smoking prior to my discovery of the UC definitely stopped all symptoms and I felt "normal" other than a hiatus hernia that was giving me trouble at the same time and it was only from having the hiatus hernia op that made me decide to quit smoking in the first place. As soon as I quit, the UC symptoms hit me and it was only 4 month slater I was having 3 life saving operations. I remember my surgeon saying to me that the smoking was hiding the symptoms but if I hadn't of quit when I did, It would have killed me before they found the UC as my large bowel would have exploded within 24hrs.
I only started smoking again because the symptons slowly started coming back after being discharged from the hospital 9 months after initially being admitted. I was amazed at how quickly the symptoms disappeared and if they do come back, how a quick fag can make them disappear again. I was told that one of the prescription medicines for UC are nicotine patches, does anyone know this to be true?
I do think that once all my surgery is over that I will look to quit smoking again but until I've got the surgery out the way, I couldn't imagine wanting to quit for all the symptoms to suddenly come back.
I just don't want the smoking to be causing some sort of internal damage to my stoma that I am not aware of and that to cause complications when I do have my next 2 operations.
Posted 9/26/2013 2:16 PM (GMT 0)
I've never heard of smoking 'masking' IBD to that extent before. I just find it very hard to believe that you could have fulminant colitis to the point of nearly dying without having any symptoms; if this has ever happened to anyone else before I would be fascinated to know about it. When I had fulminant colitis, I was extremely ill and knew all about it.

Never smoked, for the record.
Posted 9/26/2013 2:25 PM (GMT 0)
The only symptoms I had for the UC whilst smoking was the IBS, I was going to the toilet about 15 times a day a lot of the time, as soon as I quit smoking, it was the IBS with blood, sickness, stomach cramps, constant mouth ulcers, tonsilitis, you name it.....
Posted 9/26/2013 2:27 PM (GMT 0)
After I quit smoking, i was in A&E for several weekend stays over 4 months. Prior to quitting, I hadn't been in once.
Posted 9/26/2013 2:56 PM (GMT 0)
15x a day doesn't sound like IBS to me, tbh. Did you have any tests, like a colonoscopy, before surgery? If not, then I would strongly suspect you had UC and not IBS.

That said, acute flare-ups can happen for the first time out of the blue. Some people don't find out they have Crohn's or UC until after emergency surgery. That is fairly rare, but far from unheard of.
Posted 9/27/2013 7:43 AM (GMT 0)
That's the point I was making.... It wasn't IBS it was UC but because I wasn't having any symptoms and at no point fell ill with it whilst I smoked, they assumed it was IBS and therefore nothing was ever done. It was only after quitting that everything else happened at the emergency started. My surgeon reckons I would have had UC for at least 6 years due to the state of my insides.
Posted 9/27/2013 8:04 PM (GMT 0)
Going 15x a day is a symptom! Before you quit smoking and became drastically ill, did you ever have any tests? Blood/stool tests, colonoscopy, etc.? You should have done. If not, then whoever told you had IBS hadn't done their job properly and was wrong. You don't need to be desperately ill to have GI investigations. When I first went to the GP, I was almost symptomless: diarrhoea 1-2x a day; that was it. No pain, fevers, blood, anything other than watery stools. As it so happened, the diarrhoea started just after Christmas, so naturally enough I put it down to a reaction to Christmas excess at first.

But when it hadn't gone away after a few weeks, my mum said I should go and see the GP about it. God only knows how many other GPs would have said it was IBS and nothing to worry about, but I saw a locum doctor who was miles better than any of the surgery's regular doctors. Thereupon the diagnostic process was set in motion: blood/stool tests, hospital referral, GI tests, and... bob's your uncle, one Crohn's disease diagnosis a few months later. It couldn't have been more underwhelming.

I have absolutely no idea what the blood/stool tests showed; this was back in 2000. However, I presume the stool tests were to rule out infectious causes of diarrhoea (there was no faecal calprotectin test back then). Anyway, I guess my point is nobody just assumed I had IBS; they actually investigated and found something. In my case, it was obviously early stage Crohn's. The diarrhoea got a bit worse, but otherwise I was basically well and largely symptomless for another five years.

By 2007, a colonosocopy showed severe and extensive disease; I was ill enough by this point to believe it, but nobody was to mention surgery for another five years.

Apologies for the mini-essay; sometimes I just feel like writing down my life story... >.>
Posted 9/27/2013 10:22 PM (GMT 0)
Sounds like medical negligence to me. I'd be considering a visit to a solicitor........in fact, scrap that thought, I'd have already seen one!
Posted 9/27/2013 11:46 PM (GMT 0)
Edit: Yeah, I'm a coward... :/

(NB: Wasn't rude, just asked a blunt question. And now I can go to bed with one less worry out of a million worries off my mind.)

Post Edited (NiceCupOfTea) : 9/27/2013 8:22:56 PM (GMT-6)

Posted 9/30/2013 7:38 AM (GMT 0)
All I ever got from the doctors was that it was IBS and then shortly after the start, I developed severe heartburn every night when in bed. They put me on the usual tablets for the heartburn and continually stated that if the tablets didn't work, they'd send me for tests.

After 6 years of not shifting the heartburn, I changed doctors surgeries and after one visit, was sent for the camera down my throat. That showed a hiatus hernia and I had surgery on that. It was following that surgery that I quit smoking and from that day on, all the other symptons started.

I had several visits to A&E at 2 separate hospitals and was told by both hospitals that I was suffering with post op symptoms and I was wasting their time.

Eventually I was admitted into hospital where they did 2 tests of my lower abdom instead of upper which showed the UC, by that time the IV steroids didn't work so they had no choice but the emergency surgeries.

Don't worry, my medical negligence claim is being reviewed by the solictors as we speak. Just waiting for them to make a decision, however I won't hold my breath on a positive result.

Posted 9/30/2013 12:56 PM (GMT 0)
I don't think the heartburn would particularly relate to the UC, tbh. But if you told them you were having diarrhoea up to 15x a day, I'm surprised that they ignored that. Well, slightly surprised. If they didn't even order any blood/stool tests, that does sound like a case for possible negligence.

Again, with the A&E visits, there might be a case for negligence, but I'm not sure what your symptoms were or what tests they ran. They seemed to have assumed all your problems were upper GI, not lower, GI and I can't tell why. But if you were having the usual UC symptoms of bloody stools, urgency, abdominal pain (central or lower, not upper) etc., then, yeah, it sounds like more than one person fumbled the ball there.

However, I do think you'll have a hard time getting any doctor admitting to doing anything wrong. They are terrified (not entirely wrongly) of getting sued. Years ago, my nephew had an operation for a badly broken elbow. The elbow healed, but at a funny angle, and his parents suspected the operation had gone a bit wrong. They talked to various doctors, and couldn't get one doctor to admit to the possibility of a surgical mistake, even though they said they just wanted to know; they weren't interested in suing. But they never got their answer, and my nephew still has his funny arm, which might give him pain as he gets older.

That's a relatively minor example. I have a more tragic story which I won't depress you with, but basically you can't win. Without any threat of being sued, doctors get away (probably quite literally at times) with murder. With the threat of being sued, they just band together and you can't get any answers out of them.
Posted Today 2:51 AM (GMT 0)
i was diagnosed with UC feb2013 after i quit smoking smoked for 20 years took chantex to quit also but i was going to toliet 40-50 times a day put me on steroid didn't work iv steroid worked little better ended up having first of 3 surgery april11 2013 i quit smoking then recovered from surgery in about 2 months at about 75% then started smoking again 3 months or so after finally felt 100% after 5 months or so then had 2nd survey nov 4 quit smoking again been 3 weeks since and it tough i have a s pouch cause int wouldn't stretch enough for a j pouch i been smoking again calms me down a bit have to empty bag more now lot of water in bag imodium seems to help but is it ok to take everyday ?





join j 42 male
Posted 12/9/2013 8:54 AM (GMT 0)
Whats an S Pouch?

Didn't win my claim for medical negilgence!!

Posted 12/9/2013 5:27 PM (GMT 0)
petal a s pouch is same a j pouch just shaped like a s instead of j could form j pouch small int wouldn't stretch enough so they had to do s pouch what was your claim if you don't mind me asking
Posted 12/10/2013 1:23 PM (GMT 0)
Tried claiming for medical negligence as it took 6 years to get my GP to send me for tests into my symptoms, then they found a hiatus hernia and didnt bother testing further down, missing my UC. Then I kept going to Accident and Emergency after my hiatus hernia op complaining of severe problems and I was repeatedly told to stop wasting hospital staff time.....until when it became apparent something was seriously wrong and I was then told I had 24hrs to remove my large bowel or die....

I thought that was a good case for medical negligence BUT apparently not!!!!

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