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songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3694
   Posted 8/13/2009 5:24 PM (GMT -6)   
Hi all, I'm also new. I found this on the web and read a bit before joining. I'm really impressed with the depth of discussion here!
I was diagnosed with UP 26 years ago and UC 23 years ago. (I'm now 53.) At that point I was hospitalized twice in several months, sent home on a lot of prednisone which I was on for about 1 1/2 years (had trouble tapering off the last little bit) and alzufidine..... Disease was all left-sided.
For the past maybe 12 years I've often had two flares a year, not horrible - late summer and midwinter. I don't if that's because those are stressful times in my job or what....(I work part-time.) I've continued Asacol, have sometimes used Canasa suppositories and Rowasa enemas with varied results, but what has always really helped me is Cortenemas.
My Doc has spoken to me for years about trying 6MP, but I've not wanted to go there. However, this past year the inflammation has been in the transverse, so my trusty Cortenemas (my husband and I call them "Charlie") have not worked as well. My doc ended up leaving the country suddenly and I was on the Cortenemas for months. Tapered down after 3 months and flared again due to travel - and am just now down to one per week, but things aren't perfect in there.
Four months ago I started VSL, and it's not a miracle but it seems to have helped some.....Last week I bought Ultimate Flora Critical Care and I thought things were going great until today (though maybe it was something I ate...? I'll see how tomorrow is.....)

What a great group, I'm happy to be part of it!

I take:
Asacol -16 pills a day
Metamucil - 2 doses a day
Calcium and D (for my bones)
Multivitamin (just for good measure)
Cortenemas, hopefully not for long
Canasa suppositories on the other nights
Wondering if Flax Seed Oil would do any good...?

Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 8/13/2009 5:47 PM (GMT -6)   
Well, I take Imuran (azathioprine) and it's worked for me. I have left sided UC and it's apparently moderate/severe. It took a couple months for it to kick in, but I'm doing excellent compared to the state I was in this time last year. It's painful to even think about.

I did do probiotics for a while there, but they made things way worse for me, so I had to stop. =[

Do you not want to take the 6 MP because of the class of drug it's in? I was scared...but I didn't want to live like how I was. I didn't know what else to do, and I wasn't going to be able to make time for any infusions of anything.
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
2 Lialda/day.
Vitamins - Caltrate+D, iron, A, B12,
Flintstone Complete+iron, and aloe vera pills/juice.
At least I'm off the Entocort. =]


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/13/2009 6:03 PM (GMT -6)   
Hi and welcome! I can't comment too much on the 6MP because I haven't been on it. I didn't know you could go up to 16 Asacol/day!
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/13/2009 6:04 PM (GMT -6)   
Oh, I forgot...have you ever used oral prednisone? You might consider that to get into remission before trying the 6MP.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3694
   Posted 8/13/2009 7:56 PM (GMT -6)   
Yes, I was on oral prednisone for almost 2 years - gained a bunch of weight, got stretch marks, had the mood swings, etc - I would like to avoid that if I could.
Asacol - 16 pills a day
Metamucil - 2 doses
VSL#3, Ultimate Flora Critical Care
Canasa
Cortenemas (not for much longer I hope!)


Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 8/13/2009 8:04 PM (GMT -6)   
Have you tried Entocort? I was on that steroid for a while. It worked great and it doesn't give the nasty side effects like Pred.
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
2 Lialda/day.
Vitamins - Caltrate+D, iron, A, B12,
Flintstone Complete+iron, and aloe vera pills/juice.
At least I'm off the Entocort. =]


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3694
   Posted 8/13/2009 8:10 PM (GMT -6)   
I've just recently learned about it and I am so excited there's an oral steroid with less side effects! There are so many more things available now than when I was first diagnosed!
I start with a new GI in 2 weeks and expect I'll have my annual scoping (it'll actually be my 26th, argh) in the next month or so - so we'll see! I'm hoping the probiotics, etc. will clear me up by then. I'm ever the optimist, which sure helps in this illness!
Asacol - 16 pills a day
Metamucil - 2 doses
VSL#3, Ultimate Flora Critical Care
Canasa
Cortenemas (not for much longer I hope!)


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/13/2009 8:12 PM (GMT -6)   
I'm on Imuran too and it's helped so much! I was previously on 9 pills of asacol a day and had to go on pred a few times, now at 125mg of imuran I'm alright for the most part (problems are being caused in my bowel by unrelated meds).
 
Also, the flaxseed, I thought I read somewhere that you'd need three times the amount of flaxseed than you would fish oil to get the same benefit. I may be remembering wrong. But I am taking fish oil. Also, I started taking turmeric and had a noticable change for the better =)


19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

Post Edited (ElephantPipe) : 8/13/2009 7:15:53 PM (GMT-6)


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3694
   Posted 8/13/2009 8:13 PM (GMT -6)   
Laura - Yes, I'm nervous because of the immune modulating thing. I'm nervous about germs anyway, and I work with the public a lot and kids a lot. But, if this doesn't clear up, I may just have to try it - as you said, it's better than living in a flare-state! It's just taken me awhile to get my head around the whole thing.
Asacol - 16 pills a day
Metamucil - 2 doses
VSL#3, Ultimate Flora Critical Care
Canasa
Cortenemas (not for much longer I hope!)


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/13/2009 8:17 PM (GMT -6)   
Oh and I thought I'd add, although imuran suppresses your immune system (as does 6mp I believe?), I only seem to get the normal colds and things that other people do. When I'm around sick people I start taking my vitamin c and it helps me avoid getting sick a lot. So if you end up going on imuran instead of 6mp (as I can't speak for 6mp) just keep your hands washed and watch out! =)
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 8/13/2009 8:31 PM (GMT -6)   
Hi songlady! Welcome to HealingWell!

I was nervous about starting Imuran a few years ago. I ended up doing lots of research and finally decided to go for it! I have found that I actually get sick LESS often or for a shorter duration than others because my guts (the main defense in your body besides your skin) were functioning better. I do also make sure to wash my hands very well and stay clear of people who are sick.

My doctor monitors my blood work - which I have done every three months - for any abnormalities. I feel that I am better looked after than many "well" people.

I also like probiotics and do best on Culturelle or Florastor. My doc mentioned taking them about a year ago and I was able to say "I've been taking them for a long time."

I hope you find something to get you into remission! Good luck with the new GI :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  remission
Lialda 4 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: August 19
Last Prednisone dose:  7/15/08  (Hooray!  I made it a year!)
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


TLB37
Regular Member


Date Joined Dec 2008
Total Posts : 79
   Posted 8/13/2009 8:57 PM (GMT -6)   
Hi and welcome i have been on it for a good 3 years it has helped me as well . I have not been sick anymore on it as i was before i started taking it .
    Female 37
 
   20 years of Ulcerative Colitis
 
  meds,  2 Lialda, 3 Azathioprine, 1 Celebrex, Cymbalta, Mirtazapine,
               TLB ( :


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/13/2009 11:28 PM (GMT -6)   
Hi songlady,

Cortifoam is the only rectal med that does anything for me and many GI's over my 18 yrs of having IBD have reassured me that it's perfectly fine to take long term when necessary (I've been on it for as long as a yr before tapering off of it with no issues), because very little actually goes into the blood stream compared to taking oral pred, there are virtually little to no side effects using the cortisteroid foam (I've never had a single side effect when using it).

Just thought I'd also mention that probiotics can also be beneficial, there are many many threads about probiotics here, you should go through some of them and see what others are saying about them.

Great that you take fibre supplements daily, I have been for the last 5ish yrs as recommended by my GI (best advice I've ever gotten from a GI actually).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3694
   Posted 8/16/2009 3:05 PM (GMT -6)   
Thanks, everyone! I'm so glad to be part of the discussion!
Asacol - 16 pills a day
Metamucil - 2 doses
VSL#3, Ultimate Flora Critical Care
Canasa
Cortenemas (not for much longer I hope!)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/17/2009 1:01 PM (GMT -6)   
Your history sounds like mine!

I was tired of it, did some looking online and found this site...and learned about Remicade.
I am doing fabulously on Remicade. I am around the public a lot too (I work in a place that has as many tourists as professionals) and so far am fine. I am not around kids that much.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


BEQ
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 8/24/2009 10:46 AM (GMT -6)   
I'm 54 now and diagnosed with uc in my early teens. The disease waxed and waned over the years and no medication seemed to work just right. Imuran worked for me for about a year. Do your research. It is a very powerful medication with many potential serious side effects. Made the decision to go for the j-pouch in Sept. '08 and so far no regrets. Had temp ileo for 3 months.No biggie!I got used to it pretty quickly and decided that I could handle it even if it was to become permanant for some reason.
Still adjusting to j-pouch. Several trips to the bathroom daily but excellent control,no blood and starting to enjoy life again. A couple instances of pouchitis but again, no biggie. Now just taking probiotics.
I'm sure you've been told many times that the only cure is removal. Once you settle in with that reality it's esy to make the decision to go for the j-pouch. Good luck to you.  Jeff
Jeff

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