quote:

considering other options for the long term...

Entocort is a short term rather than long term option. I took it for 7 months, which was a few months too long. It does help. At the 5 month mark I developed very bad side effects due to my immune system being compromised.

I am now off Entocort and on my lowest dosage of antibiotics in 18 years. The long term solution is to quit sugars and carbs. I do have in my diet complex carbs from nutritious foods like legumes and Edamame. Processed food is crap that should not be put in your body. But the bottom line is that bacterial overgrowth is at the root of pouchitis and you thwart the bacterial overgrowth partly with antibiotics and partly by stopping ingestion of the foods that tend to fuel bacterial overgrowth like carbs and sugars.

If you go on Entocort it will help but do not stay on it too long. It is an immunosuppressant drug and you may experience consequences.

thanks for the info.

try using entocort in enema form. my pharmacist makes it specially for me and i take it every other night rectally so that it generally has only a local effect. This also helps to avoid suppressing the entire body's immune system.

I'm on entocort...was wondering what are the consequences? I have cuffitis, an ulcer right on the suture line of my pouch and cuff, and a fissure, and having spasms really bad. No luck with anything yet..currently taking canasa..entocort, and azulfidine. Any suggestions from anyone?

I have been on Entocort for almost 2 years. Dr.Shen said its safe to be on long term.

If your issues are confined to the pouch and/or cuff, there are Entocort enemas that will keep it confined to a small area if you are concerned about systemic absorption. The risk is much lower than prednisone because it is rapidly metabolized by the liver after absorption, but still is a risk. Obviously, some people are more sensitive to it than others.

Jan

I think in my case the coupling of the Entocort with antibiotics produced a peculiar sensitivity and susceptibility to skin infections and growths. I was hit, simultaneously, with benign growths (hemangiomas and a lentigo), yeast infections and warts on my hands, legs and groin area. These things do not happen when your immune system is working normally. In fact, if you get multiple warts it is a sign that something is off in your immune system. I had these issues occasionally in the past with cipro and especially if I stayed on it too long, but the coupling of Entocort and chronic antibiotics, in my case, created a toxic stew of skin problems. All of these have cleared up since going off Entocort and I am now on reduced dosages of antibiotics.

So Dr. Shen may be right that Entocort alone is safe long term. In my case, coupled with antibiotics, it provoked what my dermatologist called "the most virulent outbreak of warts I have seen in 30 years of practicting dermatology."

He also said he had never seen a patient heal faster than I did or tolerate the pain of cryotherapy better than I did. I believe that when you really, really want something the hell off of your body, pain is irrelevant - just a state of mind overcome by the strength of the desire to defeat the viral infection.

Both my dermatologist and GI felt the Entocort was the problem but they differed on how quick my wean off should be. I ultimately decided the issue for them with the maximum permitted fast wean. I believe that the fast wean is what healed everything, or gave the appearance of fast healing to my dermatologist. Using Muprocin, a topical antibiotic ointment, also helped in my mind.

2 years ago I started rotating antibiotics AND Entocort for chronic pouchitis. The Entocort WAS helpful, but each time I tried to wean off, the pouchitis would eventually come back before I could get off it completely.I have been on some ammount of Entocort for 18 months now.

3 months ago I started Immuran (I had UC 30 years ago, so had never used this drug before), because even on max doses of antibiotics and Entocort, I was barely managing. It has done wonders for me. I am still on Entocort, but begining weaning off now.

Entocort is a steroid in pill form, but it doesn't release until it nears the end of the small bowel, so it beleived to have a much less systemic effect than prednisone.

I am on Entocort and Tindamax every day. Tindamax for my sinus