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Hello my fellow j pouchers!! Life has been giving me lemons and let's just say I am sick of lemonade!! I made one year of j poaching on September 27 this year and things have gotten better but I am still suffering!! I am 29 with 3 kids and  Lord knows I just want my life back. After 3 years of pain, suffering, surgeries, ostomies, incontinence, sleepless nights etc etc who wouldnt!!?? I dk if I'm just not giving it enough time or it's not working for me. My colorectal doctor told me that normally after a year things would be as normal as they were going to get bit if what I'm going through now is normal I'm not sure I'm able to live with it!! My only other option I'm told is going permanently to an ostomy�� I definitely don't want that. I have been having really horrible episode the last week of butt burn, bleeding, incontinence and straining to empty. I have been experiencing the incontinence daily but the butt burn and bleeding had stopped before now. Just when I thought maybe things were getting better a year and a few weeks out it's started again!! I am almost convinced this will be my life but I don't want it to be. Now to make things worse I've been kicked off my insurance due to me finally after 2 years of waiting got approved for disability..but couldn't get all my back pay because of little small odd jobs I tried working in between waiting on disability to keep my kids fed and utilities and rent paid..they took out that money over two years and it just so happened to add up to what my back pay was so bam!! Nothing except my monthly of 1,066 dollars in which my rent of $875 and utilities and groceries takes the rest and some! I am so stressed!! Sorry for venting but anyway no I have Medicare which only covers 80% and I have to pay 376 a month for out my check automatically and another $15 for part D which hardly covers any of the expensive medications I have to take. To top everything I can no longer afford to see my colorectal surgeon which is considered a specialist because Its $200 co pay every visit so now I'm suffering from pain that I can't even get prescriptions for because I have no doctor and no other surgeon will take me because I've had all my surgeries with my surgeon..i know I'm all over the place and I'm super worried and stressed out..i was on oxycontin, Xanax, valium, lomotil, Percocet, Prozac, hyosycamine and as you all probably know stopping those cold turkey is a really hard thing to do but for about a month now I've not had any of these and between withdrawals and pain and having to constantly use the bathroom it's been real!! I dk what to do I am going crazy somebody please help!! I've tried getting in with other doctors to help but nobody wants to help a 29 yr old on several narcotics doctors just see a red flag automatically they don't think we'll maybe with all she has endured she really needs help. I live in Louisiana and this has to be the worst state ever to try and get help anybody know or think if I relocated I'd have a better chance..im up for that option!!

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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.

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.

 

 

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