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My disease is CRAZY...6 cigarettes and I'm stumped

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Ulcerative Colitis
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Posted 9/25/2015 1:02 PM (GMT 0)
I want to preface this with I'm not looking for feedback on how bad smoking is...I know how bad it is...that's why I quit in the first place.

So...I've been flaring for 12 weeks. Mild - 10 cm at rectum/sigmoid juncture. Nothing that we have done has helped. Enemas, foams, pills, pred, suppositories. Was scoped to see where the inflammation was and then again 4 weeks later to see nothing had changed...no progression and no regression.

So Tuesday was a horrible day UC wise and I broke down. My current regimen was Uceris, Rowasa nightly, cortifoam during the day. Uceris was making me literally mentally unbalanced...nothing like Pred ever did to me.

So my GI siwtched things up...Uceris every other day, switch nightly between cort enemas and rowasa and drop cortifoam (giving me more mucus). Tuesday night I smoked 2 cigs and did cort enema. Wednesday morning no blood.

I followed the new regimen but on Tues, Wed and Thurs night I smoked 2 cigs. This morning I had the most normal poop since the flare started. I'm not 100% but no blood, no pain, no cramps. Still some mucus and frequency at 2 so far.

Can 6 cigs really do this???? Or are the meds FINALLY starting to help???? I am so confused. I do NOT want to continue to smoke. I just want to get to a decent place before my next Remicade infusion in 3 weeks where we are doubling the dose.

Any input appreciated!!!!!
Posted 9/25/2015 1:07 PM (GMT 0)
Yes, I believe some have obtained remission by smoking. You'll find threads on it if you use the search feature. It may or may not be the nicotine.

I would go with e-cigs if you can. You won't be ingesting the hundreds of other harmful chemicals.
Posted 9/25/2015 1:32 PM (GMT 0)
I guess my main question is can the smoking induce a semi remission and then I continue my regimen with meds to get into a full remission and drop the smoking now before it becomes an issue? Stopping after 6 cigs couldn't send me back into the flare, right? Man this is such an insane disease.

Post Edited (TotesMagotes) : 9/25/2015 7:35:06 AM (GMT-6)

Posted 9/25/2015 1:35 PM (GMT 0)
I'm a long term ecig user and a longer time smoker. If I were in your shoes I'd possibly grab some Nic patches and taper off the smokes. Ecigs can be a hassle for some. Quite enjoyable for others.

If the nic patches work when you're off the smokes and you're on a budget I'd go to vaping. It's much less expensive.

If you feel you might return to smoking full time I'd go the ecig route.

Smoking is lousy but I'd smoke 2 aday to not have the pain and cramping anyday.
Posted 9/25/2015 1:40 PM (GMT 0)
Yes there are people who found relief from UC by smoking several cigarettes a day. Consult your doctor but imo smoking so few cigs has negligible deleterious effects, well worth the relief you get from UC. You were once a regular smoker so the danger might be to escalate from 5 cigs to 20-40 cigs a day, and that could seriously harm your health.

You could also experiment to see if a nicotine patch provides the same relief from UC, or e-cigarettes. That way you could avoid the dangers of smoking altogether.
Posted 9/25/2015 3:45 PM (GMT 0)
I agree, try the patch, at least you don't get all the bad stuff from those. I was actually talking to my husband about trying them myself. My grandfather was a heavy smoker and every time he quit smoking he would have rectal bleeding, so he always wen back to smoking and they never found any sign of UC in his colon except for polyps. Go figure, this disease makes no sense!
Posted 9/25/2015 4:09 PM (GMT 0)
The thing is I don't want to continue with cigarettes or nicotine. Is it possible that the cigs for a week could get me in a good state to wean off them and then continue with my regular meds?

The funny thing is I didn't even smoke the first 2 for my UC I was just emotionally a mess and broke down. Then the next morning I felt better and then each morning a little better.

Of course if a nic patch would help I will go that route but I would rather try not adding another curve ball to all this.
Posted 9/25/2015 4:17 PM (GMT 0)
This is not exactly related but if you are doing badly ask them to move up your next infusion
Why wait
Posted 9/25/2015 5:54 PM (GMT 0)
Where you a cigarette smoker who quit and then got uc? If so, then it might be possible that the cigs helped (that is the group smoking most consistently helps). Otherwise no, it is likely just a coincidence.
Posted 9/25/2015 6:57 PM (GMT 0)
My infusion has been pushed up to 7 weeks. I've had one infusion during this flare. It didn't do much. We are doubling the next dose to see if it helps. My GI thinks Remicade is helping since I haven't gotten worse but the infusion didn't kill the flare either. I got tested and I have no antibodies and my levels are where they should be. So we are trying for one more at a higher dosage to see what happens. My GI asked if I could make it the nect 3 weeks and I said as my symptoms are now I think I can...frequency 2-4, random blood and mucus, pain and cramping comes and goes but is decreasing.

Yes I am an ex smoker. I quit 1/1/2011. After I was diagnosed I went back and forth with smoking but eventually quit as I got pregnant again. I never wanted to go back but when my stress levels hit the roof I broke. Ugh.

The main thing is I do not want to jump around from biologic to biologic. I have a surgery consult in October. This flare is mild but so stubborn.
Posted 9/25/2015 7:06 PM (GMT 0)
i think it is the cigarettes working. my dad smokes to stay in remission and has had no flares for 27 years and takes no UC meds.

i use the nicotine patch and have had no side effects with it. i have read some bad things about pure nicotine but not anywhere near as bad as the side effects from simponi or imuran- and i take both of those. my UC has been very severe and very stubborn so i use all 3 to stay in remission. the 21 mg patch is equal to smoking 24 cigarettes a day. yeah, it sucks to have to NEED to use it, but i dont want to have surgery. like all things, you have to weigh the benefits and the risks. your feelings about it aren't wrong so i'd support your decision in whatever you decide. it's very personal.
Posted 9/25/2015 7:19 PM (GMT 0)
I'll change my answer to yes, odds are it could be helpful. As you quit smoking in 2011 and got uc in 2012. It's easy enough to confirm, try smoking and stopping a few times and see if your uc responds consistently. There's been some threads on smoking and uc before, maybe search for and read up on it. If memory serves me correctly, smoking thickens the mucus layer of the large intestine, an area that's normally thin and damaged on uc patients.
Posted 9/25/2015 7:36 PM (GMT 0)
Thanks guys. This is totally not where I wanted to be. I have little 2 kids. I do not want to smoke. I just want to be healthy and be able to take care of them and participate in their lives without worrying all the time.

I thought Remicade would be what kept me straight especially since I responded so so well to it. I guess I do need to stop and see how my UC responds. I also know that I will not be able to stay at only 2 cigs a day which is why I dont want to do the e cig either.

I'm also post partum and just started weaning breastfeeding and I know my hormones play a role in all this. I am hoping I can get them balanced again before I need to make any major decisions. I'm praying the next infusion does what it needs to get me back on track. But who knows at this point. I've tried everything to curb this flare.
Posted 9/26/2015 3:41 PM (GMT 0)
i dont smoke but has anyone tried vaping? I know you can get the juice where the levels of nicotine are low and they don't have all the chemicals that are associated with cigarette smoking.?
Posted 9/26/2015 4:01 PM (GMT 0)
It's the carbon monoxide that soothes inflammation in the colon...here's the link I've posted in the past....


http://www.sciencedaily.com/releases/2006/01/060103084934.htm
Posted 9/27/2015 12:27 AM (GMT 0)
Definitely don't do anything drastic until you feel that your hormone levels have calmed down. Changes in my hormones have always made me flare Those flares were usually fairly mild and went away within six weeks.

I can't remember if you have tried or considered curcumin but you have nothing to lose. No negative side effects, I'm going to guess it's safe for breast-feeding moms (But check first), and it's worked for me and several others on this board. There is clinical research that backs up it's efficacy.

If you decide to try it, start slowly with a very small dose but be aware that you probably won't see improvement until you take at least 1 GRAM per day and most of us do better with two or 3 grams per day.

I really feel for you because my very bad flare happened when my son was 2 1/2 years old and it was so difficult to get better while wanting to take care of my child. I was horribly sick, sicker than you are now I think, and ended up anemic so I was too weak to take care of him myself.

But I let myself get that sick without taking any action while you're definitely doing all the things you should do. I don't think you'll get to the point I was at if you stay vigilant.
Posted 9/27/2015 1:05 AM (GMT 0)
@kiptyn I have your curcumin on my list to buy this week actually. Where do you get yours? I couldn't find that brand at wegmans and forgot to look at whole foods. How much should I start with and how much time before an increase?

I'm weaning off breastfeeding so I hopefully have that hormone shift and then my period coming back before I level out. But I made it 6 months exclusively breastfeeding which means the world to me especially since I lost production after my first due to the flare that diagnosed me.

Yes this flare is mild but insanely stubborn! I was crazy sick after I had my first son. I was just diagnosed so this time as soon as I felt off I've been all over it. Especially because my flares land me in the hospital. First time my first son was 6 months. Awful experience. This all started from antibiotics from a uti I think. I was in a solid remission prior.

I've smoked 2 cigs a day for 5 days. Tomorrow I stop to see how it affects my uc. I'm hoping it doesn't and I continue to heal. Plus I'm sticking to nightly enemas and my other meds which hopefully reinforce.
Posted 9/27/2015 1:19 AM (GMT 0)
Six months exclusive breastfeeding! Good for you! Great -and challenging - accomplishment.

I get my curcumin from Amazon but once saw it at a Walgreens, but just once. GNC may also carry it.

I like my brand, Doctors Best, but other posters have had good experiences with other brands that might be to you available locally.

The hormone shifts could be making this flare more stubborn so it may go away once the hormone swings stop. Remember that in the past six months you've had a baby and breastfed which is a lot of hormone-effecting activity. You're bound to even out soon.
Posted 9/27/2015 1:31 AM (GMT 0)
Thank you! Its something I very much wanted to do and prayed the disease wouldn't take it away from me this time but knew I would do what was best for me and the baby. Can't take care of anyone when you're sick!

Sometimes I forget I just had a baby 6 months ago. Lol. With my first son turning 3 next week our house has been rocking and rolling. I really hope you're right and it evens out soon!

I will look into curcumin and the brands around me. I usually order some things from vitamin shoppe like my vit d. Is the curcumin in pill or powder? Or if both what's the better form?
Posted 9/27/2015 1:38 AM (GMT 0)
My curcumin is powder inside a clear capsule. Make sure it has 95% curcuminoids. Some have piperine, a type of black pepper, to help with absorption. I've had no problems but I know at least one person here had issues with the pepper.

Be aware that although I take 3 grams every day, I go up to 6 grams when flaring. But start with one capsule per day. Also, best taken with a bit of fat to increase absorption. I take mine with dinner but a spoonful of coconut oil or buttered toast will work.

When I'm on 3 g, I take all the capsules at the same time with dinner. When I'm on 6 g, I take half with breakfast and half with dinner.

Good luck!
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