Can smoking help ulcerative colitis

Hi Fluffe thanks for your reply I have been flaring like you since last April the pred seems to calm things down a bit but the effect it had on me mentally and psychically was a nightmare and it flared up as soon as I stopped it bleeding etc started three times in a row. My Gastro Dr is annoyed with me that I couldn't tolerate the vediolizomab but the side effects were just to severe to continue,

like you I get bunged up to the point i don't want to eat anything cramps nausea it's almost worse than the diarrhoea according to my GI that was the vedozlimab working but then says the constipation is prob nothing to do with your colitis eh ? Probiotics just gave me diarrhoea but I've heard they do work for some people .

Hi Ross.. are you on anything for being bunged up? Apparently I'm suffering swelling from it (got a colonoscopy AGAIN in a couple of weeks - uggg).. but I'm on laxido four times a day to keep things moving - albeit it isn't formed but it does keep things moving and no blood since March. My GI said it's a paradoxical thing about colitis - you can be continually running to the toilet but still be bunged up... I was even hospitalised with it to the point where I couldn't catch my breath and it was only pixolax (sp) that got things moving again.  I've been on pred since the end February but only one tablet at the moment.  I do get very crampy... have loads of swirling sounds going on around my rib cage and I can almost feel where it gets 'stuck' (just under the left rib cage) and it can hurt like the dickens and when it does - it seems to make me hurt or burn or I get occasional sharp stabs by the LH side of the pelvic bone.  

I have endured a nightmare IBD nurse with too much power that it's gone to her head!. She says nothing is linked when I ask her (I now make sure everything is in writing from her) and I've actually stopped speaking to her as I refuse to be talked to like a five year old as she... pardon the pun.. poopoos everything I have to say and doesn't actually listen!!! She even was telling me to take octassa which was actually doing absolutely no good and making me worse. With yourself, there may be a 'sister' drug that you can tolerate as I was able to - even though it did absolutely no good in treating it.

The papers I have read seem to vary in opinion much like the doctors/ nurses which in some respects frightens me. 

The only thing I am taking is vitamin C. I've even read matcha tea is supposed to be good... not sure about that though I did get some to try.. vile stuff that is!

I just so hope you manage to get out of the flare (and me too!) so both you and I can feel somewhat normal again! :-)

 

Hi Fluffe sorry for late reply yes I to suffer from being bunged up even though I was going 10 plus times a day my X Ray's at a recent hospital admission showed fecal loading higher up . My colitis always seems to go towards constipaton . I have tried fibogel makes me feel bloated not the best and laxido to help move it none of them seem to be good to use long term drinking a lot of fresh orange seems to help me. I'm going to look into diet side of things to see if that helps Doctor has referred me to a dietican .I hope you to get over your flare and stay out of hospital and as you say start to feel somewhat normal again thanks 👍

Hi looloo thanks for info on smoking info to be honest anytime pre diagnosed with UC I smoked a bit when out drinking alcohol night outs etc and it just made want to go to the toilet and hangovers were worse the following day toilet wise without smoking . CRP levels from what I know anything above 10 is considered abnormal it's supposed to show up as a marker of the amount of inflammation in your body as a whole . I had a CRP of 2 and went for a sigmoidoscopy and it showed my bowel was really inflamed so I don't know accurate the CRP levels can be as indication of the severity of your UC . Best of luck with your colonoscopy cheers 👍

Hi Ross. Yes I agree with you about blood levels being inaccurate markers. I done a faecal calprotectin stool test (tests for inflammation in bowels) on the same day as bloods which came out high for inflammation hence the colonoscopy, so the blood readings don't reflect this. There's nothing more accurate than a direct look!!. Thanks. xx

Thanks Sheila it's been a long year with this UC the biggest symptom I struggle with is the fatigue I don't know if it's the illness itself or the medications or a mix of both .

I had ME Chronic fatigue which I have came and went over the past ten years which i learned to live with pacing cbt etc with no answers from Drs on what caused it but this is another level of tiredness and I don't know if it's why I can't tolerate the stronger medications .

I have been worried there is something else going on other than the UC that's making me feel this ill I've had numerous blood tests scans etc all clear .

I've also have developed anxiety disorder which started after the 3rd big round of IV and oral steroids .

I know there is no magic fix with this illness and I know there is risks with surgery but just want some quality of life back which I don't have at the moment be able to go for a meal with my wife go for a beer with my mates go to football etc is your son able to eat and drink normally with J pouch and how long did it take for everything to settle down after operation ?

Hi Ross. he was so unwell with UC and steroids etc, life was difficult, v anaemic, lost 3 stone, fatigued and anxious about having an accident. He had emergency surgery as he perforated whilst in hosp on IV. I tell you this to show you that even though he was very ill he recovered and healed. He went to John Radcliffe Hosp Oxford to be under Prof Mortenson, world famous for pouch surgery. We did our research and had a recommendation from a friend.  If his colon surgery had been elective instead of emergency he would have been able to reduce the wait between ileostomy and pouch surgery. He is able to eat and drink all he wants and uses the loo between 2 and 4 times a day. He needs to drink extra liquid each day but otherwise is normal. His recovery is above average he has been told, superb surgery and aftercare and he followed all the advice. The pouch becomes bigger overtime and needs emptying less frequently, he can delay if on a journey eg, no accidents. He uses the gym, plays golf and tennis and loves a curry and a pint. He is fit and full of energy again. We are so grateful that he chose the surgery and it was such a success. JR Oxford did lots of tests first so they could say he was a good candidate. There were 2 surgeries, 1 to make the pouch and 3 months later to join everything up. He recovered v quickly as key hole surgery. He was so pleased to use the loo in the normal way again. They were very helpful and reassuring from the Prof to the stoma nurse. 

When he was first told he needed his colon removed it felt like the end of the world, but actually it was the end of the disease! Around a third of UC get to this. He is contact now for people who are considering a pouch so they can talk about it. Hope this helps. Sheila.

Thank you for your post Sheila and information it's helped greatly your sons story is inspirational and positive to anyone thinking about going for surgery . I have an appointment to see colorectal surgeon in July he is considered to be one of the best not just in Glasgow but the whole of Scotland . Thanks again for your information I'll let you know how it goes all the best cheers Sheila .

Thanks Tony how many cigarettes did you smoke a day approx during flare ? My Gastro Dr said diet has nothing to do with UC but I've noticed if I eat certain things too much sugar and drink certain things caffeine etc my colitis is worse it must play a part in it surely and if it's working for you so I will look into diet aspect of things I'll give anything a go at the moment if it helps cheers .

I smoked two to three a day during my flare. As for diet it's a massively ignored area unfortunately. I have managed to stay pretty healthy eliminating certain foods it's not a cure but it has helped me live my life again.

Hi Tony can I ask what foods have you eliminated from your diet and is it now a strict diet you now have to follow ? Do you still have to take an immunosuppressant medication ?

The main ones I have cut out are dairy(bar hard cheese), sugar, alcohol and grains. Basically Paleo type diet but the SCD diet works well too. It was tough at first but once I learned to cook properly and got a few recipe books it became easier.

I don't take any immuno suppressants as they have a bad effect on me and make it difficult for me to function day to day. I don't currently take any medication but I have mesalazine stocked up just in case I need to take it.