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Posted 2/10/2017 2:07 AM (GMT 0)
I see a surgeon on 02/15/2017 to discuss having my J-Pouch disconnected, which will result in a permanent ileostomy. I've had chronic pouchitis and c-diff. I have been diagnosed with c-diff 14 times in the 3 years that I have had the j-pouch. I was told it is rare that someone would get c-diff with a j-pouch and even more rare to get c-diff with an ileostomy. Has anyone else had this problem with their j-pouch? If so, did you have to have the anus and sphincter muscles removed as well as the j-pouch or did they just disconnect the j-pouch and create an ilestomy? Next, has anyone with an ileostomy had problems with c-diff? My worry is that I will have the j-pouch removed but still develop c-diff. Antibiotics fail to stop the c-diff and fecal transplant only stopped it for a few months.
Posted 2/10/2017 2:26 PM (GMT 0)
I'm sorry for your ongoing issues; I think a permanent ostomy is a great idea for you. It is not uncommon for a jpoucher to get cdiff, but 14 times, egads!!

Every surgeon has a preference for terminating a jpouch; some leave it in; some take it out. The anus can be left untouched, or it can be sewn closed. You need to ask your surgeon what he/she recommends in your particular case.

Sue
Posted 2/10/2017 8:32 PM (GMT 0)
I've had c.diff twice with my j-pouch. What meds have you tried for it? Dificid is supposed to be very effective. If you were treating the pouchitis with antibiotics then this could be the cause of the c.diff.

Have you tried a FMT? Personally I'd be willing to try that before going for another surgery; I am all surgeried out. 4 surgeries in 3.5 years.

I have found good success with biologicals treating my chronic pouchitis, Stelara is working well for me. I like it much better than the antibiotics which I hated.

Just some suggestions to try if you haven't thought about them yet.
Posted 2/10/2017 9:10 PM (GMT 0)
There is only one antibiotic left that I haven't tried and it is $4000 for 20 pills. I did try FMT and was good for 3 months, but slowly the pouchitis came back as well as c-diff. It is thought the pouchitis is a result of the c-diff. I'm hoping this is the last surgery for me as well. I have adrenal insufficiency, so the chronic pouchitis and c-diff keeps putting me into an adrenal crisis. I go to the emergency room about every week or I give myself a dexamethasone injection, which allows me to make it about 2 weeks before returning to ER. I see you had hip replacement as a result of prednisone, which is another one of my fears. I am having to stay at high levels of prednisone and all the injections of dexamethasone are taking their toll on my body. I'm ready to hear what the surgeon has to say Wednesday, if I can make it that long without being hospitalized locally first. Urgh! What a mess! I thought when I got the j-pouch my days of constant hospitalizations was over.
Posted 2/10/2017 10:10 PM (GMT 0)
From what I know c diff can happen with an ileostomy but it is a lot less common. however if you are in a cycle of cdiff and pouchitis it seems the ostomy would help that cycle. So maybe if you got cdiff again after the ostomy you could resolve it easier without having to worry about pouchitis.

I have only seen one person post about it before.

It will be interesting to see what the surgeon says. I know the patient I'm thinking of their GI told them it couldn't happen without a colon same as someone without a colon doesn't need probiotics. Wrong and wrong!
Posted 2/11/2017 4:13 PM (GMT 0)
Cupcake,

That is what I am hoping, that with a ostomy the c-diff would be easier to manage. I was happy with my ostomy, I had lots of energy, so I am hoping I go back to feeling as good as I did with the ostomy. Plus, I was almost off the steroids when I got sick this last time. Hoping with the ostomy I can finally taper off.

Thanks everyone for your responses smile
Posted 2/11/2017 11:10 PM (GMT 0)
Qsam6,

I'm not trying to talk you out of it because it's likely the right decision to have your pouch removed, just be aware that it is a BIG surgery and will take some time to recover from.

The deficid has a patient assistant program if your insurance won't cover the med.

I'm trying everything to keep my pouch, I don't want anymore surgeries, I'm exhausted.
Posted 2/11/2017 11:28 PM (GMT 0)
Thanks ks1905,

I have a lot of appointments at the Mayo Clinic in Rochester Wednesday with GI doc, surgeon, and a pouchoscopy, so hoping they come up with some ideas that doesn't involve removing the j-pouch. However, I'm not optimistic. On the last pouchoscopy they saw what the GI doc referred to as a "cuff", which if I recall correctly she said it could be growing the c-diff or it could be active UC from the cuff. I'm hoping maybe the surgeon will have some ideas, like removing the cuff.
Posted 2/12/2017 12:05 AM (GMT 0)
A much smaller surgery is a disconnect and then going on a biological for a few months to get you stable before a reconnection. alleycat on Jpouch.org did that, she's had great results since then.

You may just be kicking the can down the road with that approach but it could give you additional time to decide on a permanent option.

Good luck.
Posted 2/18/2017 1:37 AM (GMT 0)
Recurrent pouchitis treatment with antibiotics is the cause of the c.diff. No more pouchitis means no more antibiotics equals no more C-diff .
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