procitis problem not going after 2 yrs

Hi all

Im a 41 year old male 5' 10" (66 kg) living in UK

I have had procitis since 2004 when i had my first flare up spend 2wks in hospital

I was prescribed on asacol and prednisolne foam enema and the problem stopped.

I then had a mild flare up in 2006 which lasted for about a month and then went.

I then had a mild flare up in 2008 which lastes about 2 months which i managed to control without meds (just fasting)

My latest flare up started in Aug 2010 and has never gone away i have been taking asacol pills (400mg) twice a day prednisolne tablets 10 mg a day and pred foam enema once a day and its never helped.

Although the pred tablets i only took for 2 months
My hospital GP who i see twice a year just keeps saying 'keep taking your meds' but im getting a little tired as its not improving my problem.

Also i found out that the steriods (oral and the enema) thin the skin as well as bones and i noticed this about a week ago on my face (red veins are seen as the skin is thinning) so i have stopped taking the steriods for good striaght away as i dont want that.

I have tryed using the asacol enema but that does not work and makes the flare up worst

I have since stopped all meds and just sticking to a strict diet of just soup and sugar free orange juice dilute in water

I have had a endoscopy in 2004 and 2006. The 2006 one was ok and it hadnt spread, i had 2 more during my flare up in feb 2011 and july 2011 and although it was quite infamation but it was the same.

A couple of myths about proctitus puzzle me, the sexually transmitted and the fact that you can get it through stress.

Well im 41 still a virgin ( waiting for mrs right still) very financially able no morgage jag xkr in the garage good job so no stress worries but i have this problem

The problem i think started as i loved hot pepper sauces and tobasco sauce i used to eat load of the sauce put it on anything and what its done is striped the lining of the bowel away thats how i got this problem i have since given up eating the pepper sauces but i do love the curry now and again so the damage is done


I start work at 9 but have to get up at 6 as i seem to spend quite a bit of time on the loo with blood and mucus problems even at work it starts up with a stomach pain and then i need to go with blood and mucus coming out but if i dont eat i get this space of about 5 hrs where i have no problems but it back to the same next day

So here i am today fasting 66kg in weight ive just brought some ZINC,ALOE VERA TABLETS and PROBIOTIC ACIDOPHILUS 3 BILLION

If that doesnt work than the next step is to get the bowel removed completely and walk about with a bag which i dont want but have no choice :-(
Just hope this helps

god this takes ages to write on a samsung galaxy tab

Post Edited (zack36) : 7/14/2012 11:19:27 AM (GMT-6)

     Proctitis was my problem.  I don't think it is sexually transmitted.  At least I never heard it was.  Stress...yeah...while it does not cause IBD, it can worsen the symptoms.

     Ask your doctor about switching you from Asacol to Colazal.  That was my maintenance drug for ten years.  While it did not cure my disease, it did keep the ulcerations confined to the rectum, I can bet on that.  Proctitis is really stubborn to treat.  Instead of foam, which did nothing for me, try the Cort enemas or Rowasa or Canasa suppositories.  Keep to a low residue diet while flaring.  Never EVER stop taking prednisone cold turkey.  My friend, who suffered from Crohn's for years did that and she developed Addison's Disease.  She is now deceased, so you sure don't want that problem.

     I had surgery in 2010 because the meds failed me but others are having success with different meds and probiotics.  What works for one usually does not work for others.  This disease is hit and miss.

yeah stopping the steroid abruptly without gradually tapering will actually make you feel worse and can increase symptoms ...

I'm having Proctitis problems too!

Currently on a lquid diet using absorb plus shakes and taking 1mg Budesonide suppositories

www.absorbplus.com

Trying a little experiment and syringed oregano oil into my rectum to be follow by a probiotics retention enema 2 hours later. So far my butt is on fire! Heard oregano oil is a good anti-inflammatory and kills infections as well. I've used it for sinus infection instead of antibiotic and had success.

It's a stubborn area and I was getting sick as a dog because of it. At least the shakes helped with the nausea and rectal pain...no stool no pain!

Your Asacol is barely a maintenance dose, I take 800mg 4x a day and weigh 120lbs.
Your diet may be causing problems, Check the label of your "sugar free" Orange juice,
You might be surprised to find aspartame or the likes, which is poison to us UCers.

Carlie

Ben wanting to try FMT..but where to find a doner is the issue. I don't live close to any family members and my hubby has IBS! Too bad there's not a doner list somewhere?

Gee now if I could afford that! Would love a trip to Australia! The problem is finding doners around here locally unless his list is that broad!

Try going gluten free. You will know within a week if that helps. I had very stubborn, lingering proctitis and only could get rid of it when I finally gave in and tried gluten free. In just a few days I stopped seeing blood.

Peace - how do you use the oregano oil? i have heard good things about it and my mil gave me some but I am unsure exactly how to use it!