This sounds very hard, Gail. With open enrollment season approaching perhaps you could look into improving your insurance situation. It would be worthwhile to at least see how much of a subsidy you’d be eligible for with ACA insurance (choose a Silver plan for the best subsidies). The next medical steps to try are all pricey, I think (rifaximin or biologic medications). It sounds to me like you just have inadequately treated pouchitis, not nerve or muscle damage.

Thanks Scott.  I am a Canadian. I think that insurance may be for Americans. I am loathe to go on biologics. I have been sick with some sort of chronic bronchitis (non smoker) for 9 months straight now with CT showing enlarged lymph nodes in mediastinum, granuloma, dilated area in bronchioles and more tests to come. Because of this, I am loathe to start an immunosuppressant.

Do you think anyone improves with just bowel rest for a few days ie. liquids only?

You could try Entocort / budesonide to calm down cuffitis. I use it in combination with Cipro and Flagyl for chronic pouchitis. I could go down to one capsule (3 mg) per day, half of it in the morning and the rest in the evening (the normal dose for short term use is 3x3 mg).

Some people here reported that they use antibiotics that are off label for pouchitis, I also found relief from an antibiotic that was meant for skin issues in the past. But I don't know if you want to go that way.

Dear GEB56,

I have also suffered with pouchitis. I feel your pain. I have had success in the past with Xifaxin, but it is expensive. I have also used Canasa suppository and hydrocortisone enemas with some relief. More recently I am taking Budesonide 900mg daily. And so far so good!

Best of luck to you!

@GEB56 posted:

Thanks Scott.  I am a Canadian. I think that insurance may be for Americans. I am loathe to go on biologics. I have been sick with some sort of chronic bronchitis (non smoker) for 9 months straight now with CT showing enlarged lymph nodes in mediastinum, granuloma, dilated area in bronchioles and more tests to come. Because of this, I am loathe to start an immunosuppressant.

Do you think anyone improves with just bowel rest for a few days ie. liquids only?

I’m sorry - I should have checked your location. When you wrote “I have no coverage for anything” it sure sounded like an American problem. I think bowel rest is most likely to be of no lasting benefit, but you probably will poop less while you’re eating less.

Adding a biologic to your chronic bronchitis/mystery problem certainly adds complexity, and complexity does include some risk, but perhaps your pulmonologist (you have one, right?) can offer reassurance (or caution).

Hey Scott.  I wish bowel rest was the be all end all, but wishful thinking won't make it so. I have a pulmonologist. I have several abnormalities on my CT, but no concrete diagnosis yet, which infuriates me.  9 months is a very long time to be short of breath with green guck for hours every morning.  This came on suddenly with no smoking history, although emphysema has been mentioned on a chest xray. I do sports and now my breathing is poor. Inhalers have not worked. I am 65 years young.  It would be easier to deal with just one thing; bowel or lungs.  Sorry. Just venting. 

Gail,

I've been in your shoes....do go read my entry in the skin breakdown section....however for the past 3 years I have enjoyed fairly good results with the biologic Entyvio which i get by infusion every 8 weeks....in additon to Rifaxamin 550x2 as needed! I'ts not perfect and sometimes i'm on rifaxamin too long between infusions which then increases the flare....ideal rifaxamin is 8-10 days and then jump off for another 10 days and start the practice again....i'm on medicare/aarp so they pay 100% for the expensive infusions....but i buy the rifaxamin from canada....talk to your doctor about this treatment! Praying for you and anyone suffering

Thanks Michael. I have no insurance coverage. I looked at the Rifaxamin and see it would cost me over $600/month, so unable to do that.  I currently have some lung issues; not yet diagnosed, but lymph nodes in my chest are enlarged, so I am unwilling to start a biologic/immunosuppressant at this time.  I am having a scope of my pouch Nov 17 so perhaps that will shed more light in exactly what is happening. The Flagyl I am using again now is doing nothing. It worked up until a year ago quite well.  We'll see.  Thanks again.