Ulcerative colitis

[r77r7r]

I'm still in flare hell..maxed out on what I can take in mezalamines...will find out tues what the next course of action is going to be, I've lost 3 lbs, but gained 10 inches on my waist from bloating..I look like an ethiopian that's expecting..UGH!

So sorry to hear that, Meems!! If you're maxed out on the smaller pills, Maybe you can get the big ones- Lialda? That's what my doctor moved me to and I still had a couple bad weeks but I'm out of it now. I'm sure the enemas would help too if you can get them.

When I was really bloated, I had alot of gas also and started using Gasx and quit coffee. Definitely try to use the stronger Lialda than steroids, IMHO. If your scheduled visit to your GI isn't for awhile- think about calling him, Mine called me at home 2wice and gave me his personal ph#. We certainly pay these guys enuf!

Sometimes I think of smoking again even tho I'm somewhat in remission, but my last one tasted terrible. Best wishes for a speedy recovery!!!- Bob

 

[r77r7r]

Thought I would post a little update on this. My wife had just finished another round of steroids (that didn't help) for her UC flare up when I started looking into this. I told her about the link with UC and nicotine and she has since bumped up here mg level to 18mg and she started smoking a few cigarettes a day (never more than 3-4) and poof her UC has went dormant again.

Needless to say, she has been much happier as of late.

Happy to hear about your wife's remission!! I think maybe I could stand 3-4 smokes if it means some relief. I don't know why they use high doses of steroids, I go psychotic on them! If stress makes the flare worse- being on steroids seems like the worst thing.
Is she on a maintenance drug now?? Best wishes.

 

[meems]

So sorry to hear that, Meems!! If you're maxed out on the smaller pills, Maybe you can get the big ones- Lialda? That's what my doctor moved me to and I still had a couple bad weeks but I'm out of it now. I'm sure the enemas would help too if you can get them.

When I was really bloated, I had alot of gas also and started using Gasx and quit coffee. Definitely try to use the stronger Lialda than steroids, IMHO. If your scheduled visit to your GI isn't for awhile- think about calling him, Mine called me at home 2wice and gave me his personal ph#. We certainly pay these guys enuf!

Sometimes I think of smoking again even tho I'm somewhat in remission, but my last one tasted terrible. Best wishes for a speedy recovery!!!- Bob

Lialda is a mesalamine also..I'm maxed out of that & canasa...luckily I am not a coffee drinker, I know it would womp me bad! I'm nervous about steroids, moon face, killing my family, gaining 40 lbs., joint pain...oh wait, is there a good side? Then they are talking MP6's...infusions... I have 3 months of insurance left, if we aren't employed by then, I'm in real trouble. Cash price for what I'm on now is like $3,000 a month...you can't stockpile infusions!

 

[r77r7r]

When I was on steroids once, I asked for and received Paxil, which is like valium I guess. I was bad tho-- enuf that I almost gave up my job, marriage and would cross the yellow line on the hi-way playing chicken with the other cars!

I know you can't get infusions online, but I did a search at the UC forums and got some good direction for Canadian pharmacies. I know some folks at my church that use them also. I'm unemployed also.

What MG are you vaping at? When I increased mine from 3 to 12 is when I started remission, but it could have been co-incidence.

3 months is a long time, good things can and do happen- try to keep a positive outlook- I know it's hard.

 

[r77r7r]

I forgot to mention, if you go with Lialda, they have a special card for the pharmacy- it cost me less than the smaller mesalamine pills- $25 w/copay. For a months supply.

 

[meems]

Tomorrow is my appt..I know steroids are coming..I'm terrified, I've only been on them once for a week & was insane, I don't know how I'm going to handle high doses for months! But I'm so sick now I don't feel like I have many options. I'm about ready to let them take the bowel...

 

[nansc]

I wonder how chron's is affected buy nic. I have this and the doctor said smoking is one of the reasons for flare ups. I know i quite smoking once and was really sick. If anyone knows more let me know thanks larry

I have chrones too and have had it for 40 plus years.There was an article in the AMA journal many years ago(sorry but I lost the article a friend brought for me,she cut it out of the newspaper.Anyway it said that smoking keeps both chrone's disease and UC calmed down.I took this to my doc. and he said yes it does keep it calm but the other health risks involved with smoking were just not worth it.I have found that any anxiety does flare it up(like quitting cigs).Now after my last surgary I found that smoking flares it up.Keep the faith and don't get all worked up about it.All will be well.

 

[meems]

I forgot to mention, if you go with Lialda, they have a special card for the pharmacy- it cost me less than the smaller mesalamine pills- $25 w/copay. For a months supply.

I have that..but once ins is done, that little bit they help won't mean squat. We have too many assets to qualify for assistance, so until I suck our lifes savings dry, I'm in trouble.

 

[r77r7r]

Howd it go today, Meems? Any good news?

 

[meems]

Sent in a sample to rule out c-diff...then it's on to steroids for now if that comes back neg..thanks for asking.