J pouch after a year!! Still having issues!! 😣😣

I wish I could give you help, but I live in IL and it's not much better up here.  I wish you all the luck.  You sound like a wonderful person and Mother.  You deserve better.

Stress only makes all your physical problems worse. 

Trust me I know. I went through all that what you wrote and gave in to the end ileo after two years with a non functioning j pouch.  It was worse than the uc I had. Way worse. 

But by doing this I'm done. No Dr's. No meds. No pain. No co-pays. Just done. 

Basically I call it my cure. It has cured me.  Now I know you don't want to hear it. But the end ileo was my answer. But I'm also twice your age.   But it's so easy.  I had the dread of having one but I'm over it now.  

All of what you wrote disappears.  It's not what anyone wants.  But it works. 

Richard. 

I think there's a lot to unpack here, Britbrat, but I hope you do better.  Now that you are not taking pain meds (it may not have helped your physical situation with your pouch) I am curious about your diet?  And bleeding, is that from hemorrhoids or other?  If it's hemorrhoids, a friendly diet could help.  I know you are a very busy mom and it has to be very tough.  But mostly I'd want to check to be sure you don't have leakage or fistula or other and that your pouch has integrity as an important start.

Do you have a diagnosis, or at least an idea about what’s wrong? Without that it’s difficult (or impossible) to suggest appropriate treatment.

I'm disabled on medicare too. If your surgeon accepts medicare the co-pay should only be the 20% of the approved medicare amount. I hope someone in the surgeon's office didn't know this. Unless s/he charges $1,000 for an office call and medicare approves that rate then your cost would be 20% or $200. Medicare wouldn't approve that so that's why I think you got bad information. 

Have you applied for medicaid? I don't have personal experience with that but think that covers the 20% medicare doesn't pay.

MisticCobra and I both had to get rid of our j-pouces. I agree with all he said above. Hopefully you have a treatable problem but if you don't a permanent ileostomy is a life saver. The temporary ileo I had was horrible and this perm one is much better.

Im sorry to hear your situation you really have too much to deal with. I had much irritation and pain for a long time after my surgery and what really helps me are probiotics and yeast  fighter supplements when i had severe butt burn hot water with the shower head or hot bath with epsom salts. Im really leveled out now but if i know im gonna drink or have a day where i consume a lot of sugars i start popping those yeast blockers. Idk maybe its just me. I hope you get some relief and if you need meds check into the patient assistance programs that the pharmacuticals all have. 

So sad to hear of your pain. 

In the past 13 months, I had a redo jpouch, long hospital stay due to malabsorption,then an early reversal.

my recovery led to horrid , unrelenting butt burn, diarrhea and weight loss.

I opted for the K pouch! This takes just a little getting used to, but I do so much better than I did on my 3 times with The  Illieostomy, my life is 100 times better!!

It is difficult to find a Dr to do this , but sooo worth it. Mine was done in Cleveland by Dr Dietz . 

I will keep you in my thoughts and hope you get an answer to your pain soon.