I don't have any great advice for you, but at every appointment my GI asks me if I've started smoking (I say no) and then he says if I do, don't stop without talking to him first.
Thank you for your reply ! They have told me a couple of times that smoking helps with UC, but i never imagined that it was to such an extent. Nevertheless, my doctor tells me that ive made a great choice to quit smoking (you know, like doctors do) and they support me. But tbh, id rather get lung cancer when im 55-60 then go through life 'healthy' like this lol.
As someone watching their mom slowly die from emphysema, no, you don't want to go that route.
Maybe nicotine patches would help? Check with your doctor.
I had my first flare when I quit smoking. I caved and started smoking again and the bleeding stopped, so I didn't go through with the colonoscopy. My pcp said it was probably just an internal hemorrhoid. I switched to vaping a couple years later and had another massive flare that I took seriously which led to my diagnosis. Lialda and Canasa have helped me a lot, they don't put me into remission but they let me lead a semi normal life until I can find the right biologic.
Yeah i never thought that smoking would have such a big influence on my colitis. I also take medications that are similar to the ones you mentioned. I take pentasa and colitofalk, of which the active substance is called mesalazine. Thank you for sharing your story and best of luck to you !
Jyseleca can take 10-12 weeks to work, so don't give up hope yet! If that doesn't work it looks like you have a few other options still. Sometimes we go through several that do nothing until we find the one that gives us our lives back. Like the other person who commented, I watched my grandmother die from emphysema and it was brutal. I would much rather end up with no colon and a bag than go through what she went through.
Okay , thats good to hear at least, my doctor told me that i should feel something by the time i got to 6 weeks. The entyvio helped a little bit but not at the level needed. And im sorry if my comment about lung cancer came off a bit rude.. im just trying to NOT end up with a bag..
You didn't come off as rude at all. I took it as someone who is frustrated and desperate, and I think we've all been there. Have you had a cal pro test to see if the inflammation is starting to drop?
I had some blood tests at the hospital and my doctor is monitoring them. Im going to the hospital every 2-3 weeks to have them check up on me. Inflamation is starting to drop but now i need to drop my steroid usage. This week (especially yesterday) it got worse again, and today, it magically healed, so lets hope it keeps going this way!
Thank you for your reply! The depression is mainly from the steroids, i have adhd so im pretty sensitive to the effects of steroids on the psyche. Anti depressants is also something that i really dont want to start with.. im really trying to tackle the problem at the root.
Wellbutrin is also sold as a smoking cessation aid, Zyban. Maybe that could potentially target both? I work in the mental health field and where I work when we prescribe meds are typically meant to take the edge off when working through heavy stuff in therapy, so that it’s easier to cognitively address without some of the physiological shitstorm that can happen when digging into deeper issues.
There seems to be a link between nicotine and UC flares. If you're not opposed and you can't get anything to work after another year or so it may be worth considering grabbing nicotine patches or gum...
Thank you for your reply! I was also thinking of bringing up the subject of trying nicotine patches/gum with my doctor. Im kind of scared that having nicotine will restart my smoking addiction again, which it probably will lol.
I don't smoke, never did, unless... I was heading to a flare... It was my first symptom, craving cigarettes. The doctors told me it was normal. So there is a correlation. As told talk to your doctors, you can do some research and try the patches.
A few days after i stopped smoking my colitis was advancing rapidly , so i guess that if I decide to smoke again for helping with my colitis it would have to be Permanent. Ive also researched alot about diets but you find so much conflicting information. Im probably gonna start a fodpmap diet and see where that gets me.
Quitting smoking triggered my first flare and led me to diagnosis. I ended up picking the habit back up to help with symptoms and it did keep me feeling better until I got into remission on remicade. Now I'm having a very hard time putting it back down. I really wish I had just stuck it out until the medication started working. I am proud of you for quitting and encourage you to not start again!! I wish I had made a different choice and didn't have to go through the process of quitting again. Best of luck to you friend.
For me the nicotine seemingly was a great helper alongside my medication. But i will try and stay off the cigarettes ! Thank you very much for the support!
I would never condone smoking as a positive result/action/or outcome
BUT
I was on prednisone for about a year, with no effect other than seveeeere weight gain, moon face, and I still got a horrible colitis rash all over my body. I went 22 days without any kind of bowel movement other than bleeding. The effects of the flare lasted for a solid year.
I read on my own research while grasping at desperate straws that nicotine is a way of curbing the symptoms and effects of colitis.
Unfortunately, I began smoking...but fortunately, I was slowly losing the weight, the pain from the flares, the rash dissipated. After a week or so, I finally had a bowel movement on my own..without any help from medications or prescribed laxatives. After a month I was able to ween down from four pills a day, to two. Another month and I was back at my regular weight, regularly having bowel movements, and completely off of any kind of prescribed medication.
Now, again...I do not condone smoking because it really is a catch 22 for us folks with colitis. And no doctor is ever going to recommend nicotine as an alternative. I do also want to reiterate that it's definitely different strokes for different folks. What has worked for me may not work for you or anyone else. But it's.... unfortunately...very worth the try in my opinion and personal experience.
It's been 2 years since my last flare and I've been holding a consistent bar with my nicotine intake to be as little as possible, but it's been working for me.
Unfortunately, it seems like out of two horrible choices, ones been sortve...working? All be it soon SO unhealthy for my future. But that's just been my experience.
It's sortve like being given two doors to choose from, on the other side of both is freedom and zero pain and mental suffering ....BUT one is actively on fire..the other is eventually going to fall on you. Lol 🤷🏼♀️ damned if you do, damned if you don't.
Hope some of this helped? 😬
Its weird to hear that you dont have any bowel movements at all. I sometimes go to the toilet around 10 times a day, luckily at the moment im doing a little bit better.
Im really trying to stay away from the cigarettes, but knowing that itll probably help me by alot makes it really hard. 😅 But i think ill try and wait for the medication to hopefully kick in Before i resort to cigarettes again.
Thank you very much for your comment! It definitely gave me some perspective!
I had a device that gave you an electroshock around my neck. Something similar like this : https://www.amazon.com/Pulsetto-Personalized-Relaxation-Stimulator-Rejuvenation/dp/B0CF2BFT8T
Im gonna try and stay away from that option as long as possible. I think that if i would use nicotine patches i would eventually start smoking again because of the nicotine intake.
Same story, I started smoking when I was 13, 30 now. I was able to switch to vape at 26. I tried quitting vapes earlier this year with chantix and went 2 weeks without nicotine before needing to go to the hospital. I’m on nicotine patches now but desperately want to smoke. I was diagnosed around 15 y/o but it was really never out of hand. It wasn’t until I stopped smoking cigarettes that it really throttled my symptoms. I don’t have any advice but cheers to going through it with you.
I don't have any great advice for you, but at every appointment my GI asks me if I've started smoking (I say no) and then he says if I do, don't stop without talking to him first.
Thank you for your reply ! They have told me a couple of times that smoking helps with UC, but i never imagined that it was to such an extent. Nevertheless, my doctor tells me that ive made a great choice to quit smoking (you know, like doctors do) and they support me. But tbh, id rather get lung cancer when im 55-60 then go through life 'healthy' like this lol.
As someone watching their mom slowly die from emphysema, no, you don't want to go that route. Maybe nicotine patches would help? Check with your doctor.
Thanks for you reply! Im sorry you had to go through that and sorry if my comment seemed a bit cruel.. i definitely will!
I had my first flare when I quit smoking. I caved and started smoking again and the bleeding stopped, so I didn't go through with the colonoscopy. My pcp said it was probably just an internal hemorrhoid. I switched to vaping a couple years later and had another massive flare that I took seriously which led to my diagnosis. Lialda and Canasa have helped me a lot, they don't put me into remission but they let me lead a semi normal life until I can find the right biologic.
Yeah i never thought that smoking would have such a big influence on my colitis. I also take medications that are similar to the ones you mentioned. I take pentasa and colitofalk, of which the active substance is called mesalazine. Thank you for sharing your story and best of luck to you !
Jyseleca can take 10-12 weeks to work, so don't give up hope yet! If that doesn't work it looks like you have a few other options still. Sometimes we go through several that do nothing until we find the one that gives us our lives back. Like the other person who commented, I watched my grandmother die from emphysema and it was brutal. I would much rather end up with no colon and a bag than go through what she went through.
Okay , thats good to hear at least, my doctor told me that i should feel something by the time i got to 6 weeks. The entyvio helped a little bit but not at the level needed. And im sorry if my comment about lung cancer came off a bit rude.. im just trying to NOT end up with a bag..
You didn't come off as rude at all. I took it as someone who is frustrated and desperate, and I think we've all been there. Have you had a cal pro test to see if the inflammation is starting to drop?
I had some blood tests at the hospital and my doctor is monitoring them. Im going to the hospital every 2-3 weeks to have them check up on me. Inflamation is starting to drop but now i need to drop my steroid usage. This week (especially yesterday) it got worse again, and today, it magically healed, so lets hope it keeps going this way!
I think there are antidepressants that can help with the transition to not smoking.
Thank you for your reply! The depression is mainly from the steroids, i have adhd so im pretty sensitive to the effects of steroids on the psyche. Anti depressants is also something that i really dont want to start with.. im really trying to tackle the problem at the root.
Wellbutrin is also sold as a smoking cessation aid, Zyban. Maybe that could potentially target both? I work in the mental health field and where I work when we prescribe meds are typically meant to take the edge off when working through heavy stuff in therapy, so that it’s easier to cognitively address without some of the physiological shitstorm that can happen when digging into deeper issues.
Ill definitely ask my doctor about this, thank you :)
There seems to be a link between nicotine and UC flares. If you're not opposed and you can't get anything to work after another year or so it may be worth considering grabbing nicotine patches or gum...
Thank you for your reply! I was also thinking of bringing up the subject of trying nicotine patches/gum with my doctor. Im kind of scared that having nicotine will restart my smoking addiction again, which it probably will lol.
I don't smoke, never did, unless... I was heading to a flare... It was my first symptom, craving cigarettes. The doctors told me it was normal. So there is a correlation. As told talk to your doctors, you can do some research and try the patches.
A few days after i stopped smoking my colitis was advancing rapidly , so i guess that if I decide to smoke again for helping with my colitis it would have to be Permanent. Ive also researched alot about diets but you find so much conflicting information. Im probably gonna start a fodpmap diet and see where that gets me.
Quitting smoking triggered my first flare and led me to diagnosis. I ended up picking the habit back up to help with symptoms and it did keep me feeling better until I got into remission on remicade. Now I'm having a very hard time putting it back down. I really wish I had just stuck it out until the medication started working. I am proud of you for quitting and encourage you to not start again!! I wish I had made a different choice and didn't have to go through the process of quitting again. Best of luck to you friend.
For me the nicotine seemingly was a great helper alongside my medication. But i will try and stay off the cigarettes ! Thank you very much for the support!
I am trying to get into nicotine gum, hopefully I can get off the cigs and spare my lungs but keep the benefits of nicotine!
I would never condone smoking as a positive result/action/or outcome BUT I was on prednisone for about a year, with no effect other than seveeeere weight gain, moon face, and I still got a horrible colitis rash all over my body. I went 22 days without any kind of bowel movement other than bleeding. The effects of the flare lasted for a solid year. I read on my own research while grasping at desperate straws that nicotine is a way of curbing the symptoms and effects of colitis. Unfortunately, I began smoking...but fortunately, I was slowly losing the weight, the pain from the flares, the rash dissipated. After a week or so, I finally had a bowel movement on my own..without any help from medications or prescribed laxatives. After a month I was able to ween down from four pills a day, to two. Another month and I was back at my regular weight, regularly having bowel movements, and completely off of any kind of prescribed medication. Now, again...I do not condone smoking because it really is a catch 22 for us folks with colitis. And no doctor is ever going to recommend nicotine as an alternative. I do also want to reiterate that it's definitely different strokes for different folks. What has worked for me may not work for you or anyone else. But it's.... unfortunately...very worth the try in my opinion and personal experience. It's been 2 years since my last flare and I've been holding a consistent bar with my nicotine intake to be as little as possible, but it's been working for me. Unfortunately, it seems like out of two horrible choices, ones been sortve...working? All be it soon SO unhealthy for my future. But that's just been my experience. It's sortve like being given two doors to choose from, on the other side of both is freedom and zero pain and mental suffering ....BUT one is actively on fire..the other is eventually going to fall on you. Lol 🤷🏼♀️ damned if you do, damned if you don't. Hope some of this helped? 😬
Its weird to hear that you dont have any bowel movements at all. I sometimes go to the toilet around 10 times a day, luckily at the moment im doing a little bit better. Im really trying to stay away from the cigarettes, but knowing that itll probably help me by alot makes it really hard. 😅 But i think ill try and wait for the medication to hopefully kick in Before i resort to cigarettes again. Thank you very much for your comment! It definitely gave me some perspective!
I wonder if there's a connection with the vagus nerve being helped by smoking somehow and that limits ulcerative colitis
Ive had vagus nerve stimulation, did not really seem to have a noticable effect.
How did you do / get vagus nerve simulation?
I had a device that gave you an electroshock around my neck. Something similar like this : https://www.amazon.com/Pulsetto-Personalized-Relaxation-Stimulator-Rejuvenation/dp/B0CF2BFT8T
I wonder if switching to a nicotine patch would help at all.
Im gonna try and stay away from that option as long as possible. I think that if i would use nicotine patches i would eventually start smoking again because of the nicotine intake.
Same story, I started smoking when I was 13, 30 now. I was able to switch to vape at 26. I tried quitting vapes earlier this year with chantix and went 2 weeks without nicotine before needing to go to the hospital. I’m on nicotine patches now but desperately want to smoke. I was diagnosed around 15 y/o but it was really never out of hand. It wasn’t until I stopped smoking cigarettes that it really throttled my symptoms. I don’t have any advice but cheers to going through it with you.