CLose to Remission??

justwrong

Regular Member

Joined : Feb 2007

Posts : 230

Posted 3/10/2010 10:03 AM (GMT -7)

Hi All..
Feel free to post in, and thanks for reading!

I had a hospital appointment yesterday, which was scheduled around 6 months ago. Basically when I left I felt sooo down, I was told the only options left for me where Remicide or Humira, failing those then my only option is surgery. I have always been reluctant to have the surgery. I would like to fight this disease and get into remission again. I was in remission for almost a year then it all went wrong after a flu jab! - That trouble free year was great.. I felt like a new person, personally I'm not sure If I'm a strong enough person to have the surgery/pouch and or bag..

OK.. I felt down, but the past few weeks things have improved for me.. I was told to stop the predinsoline (as I was on them for over a year) which was good getting off those. Basically every time I was tapering down I seem to get a VERY large mouth abcess (5 times in total).. and then I had to stop and take an antibiotic, this went on for roughly the whole year.. pred = abcess = Stop the Pred, & take an antibiotic (To clear the mouth abcess) try the pred again etc . It was a messy process. I think that since I came of the prednisoline, Ive had no abcess which means I dont need an antibiotic. Things have certainly calmed down on the western front (Or rear..lol) Albeit I am also taking pentasa and sometime predfoam & for the past few weeks I I have also been taking probiotics (You guys seem to think they made a difference. - Last few months things were bad, toilet 10-20times a day, this month 5-10 times a day!.. Today for example I have only been to the toilet 3 times, once for BM and twice for gas & mucus - Both very little at each time. - It seems to be getting better, could things just improve If I continue as I am? - Excuse my ignorance, Ive only been in remission once and that was because of the IV therapy.
Is there anything I could try to kick things along a little more?.. Ive cut out alcohol to see if things improve, I try eating healthier (Although neither of these seem to previously have any imapct on my UC).

Take care, and thanks for reading my post.

Male, 29yrs old -
Diagnosed with UC 2004, untreated for 5 years before diagnosed/treatment started.
Meds.. Azithiropine (Enuram) 125mg per day, Asacol 400mg x2/3 times a day..VSL#3 (09/02/10)
Hospitalised in 2007 for one week & Hopefully the last!! - IV Therapy

Red_34

Forum Moderator

Joined : Apr 2004

Posts : 23578

Posted 3/10/2010 1:11 PM (GMT -7)

So you're not using the prefoam on a daily basis? If not, you might want to try every night until the rest of the symptoms go away. It sounds like you are definately doing better but you're quite not there.

@--->--SHERRY--<---@

Moderator for Allergies/Asthma and Co-moderator for UC

~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)

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quincy

Elite Member

Joined : May 2003

Posts : 31469

Posted 3/10/2010 2:40 PM (GMT -7)

You're moving in a positive direction and improving. I also agree to be using the predfoam nightly.

Have you not tried Rowasa as of yet? If you can, maybe that's another good option for you rather than using a steroid.

How many Pentasa are you on?

It's great that you were able to get off the pred and that your mouth sores haven't shown up this time. All good stuff!

It's not a fast process to feel well....

What probiotics are you on at this time? You might want to eventually consider a fibre supplement.

Kudos on stopping the alcohol.

quincy

justwrong

Regular Member

Joined : Feb 2007

Posts : 230

Posted 3/10/2010 3:02 PM (GMT -7)

Thanks for the replies..
I have been on pentasa supposotries nightly every night for about 3 weeks and predfoam every other night (not together). I think u recommended this to quincy..
Tonight there has been NO blood! The urgency is still there tho.
I'm on 1 x vsl#3 per day.

Fibre supplement?.. any suggestions?..
Thanks

songlady

Veteran Member

Joined : Aug 2009

Posts : 3730

Posted 3/10/2010 3:07 PM (GMT -7)

I would try increasing the VSL. I saw a huge difference for the better when I went from one VSL a day to one VSL DS (double strength) per day.
Glad things have been improving for you!

Age 54. Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills/day, cortenemas, Rowasa
Metamucil - 2 doses/day since '86, and psyllium seed powder
VSL#3DS, Multivitamin, Calcium and D, Flax Seed Oil
melatonin
homemade yogurt each day
Ryzolt for arthritis pain
Son, 16, dx pancolitis 2007, in remission

quincy

Elite Member

Joined : May 2003

Posts : 31469

Posted 3/10/2010 3:15 PM (GMT -7)

Oh, pentasa supps..I thought oral.....you should take the foam nightly and the supps during the day for a while anyway.

You should also be on an oral 5ASA...are you not still on Asacol?

I use Metamucil fibre capsules. Started with one per meal and have gone up to 6 with meals twice a day.

q

justwrong

Regular Member

Joined : Feb 2007

Posts : 230

Posted 3/11/2010 2:01 AM (GMT -7)

Cheers! - I think I will take a trip to the local health store and see if I can get my hands on any fibre capsules. - Anything is worth a try.
And yes Im still on Asacol 2 x Tablets (400mg) x 3 times a day.
I didnt realise there were pentasa oral! - Maybe I should give these a try at some stage?!.. And there was that Doc telling me we have run out of options and it looks like surgery - There IS other meds that I havent tried! - Before giving up, and having bits of me removed..

Im running low on the VSL - I will order more online and try doubling up..
THANKS again!!

All the best

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