I've been told the same.

I was first diagnosed with UC and had to have my colon removed 10 years later and although still under my Consultant and regular scopes, I've never been prescibed medication to control my UC; nothing whatsoever, other than Imodium, which was to slow the output of my stoma.  

Before the removal of my colon, it was always suggested I opt for surgery rather than it be an emergency and once my colon is removed, that's it your cured.

As for the removal of my colon, an emergency it was.

Since my takedown, I've been discharged from the care of my original Consultantbbecause I no longer have UC.

I've also been discharged from the Hospital and Surgical Team that created my J pouch.

Therefore, I'm cured..... Yeah ?

Yes and no. There are "extraintestinal" manifestations of UC that can occur, such as enteropathic arthritis and a bunch of others. In that sense the disease didn't go away with the surgery, but its favorite target is gone.

UC is an autoimmune disease. We have that all our lives. 

There are a host of things besides uc that are associated with autoimmune disease.  I know. I have bad other stuff associated with the autoimmune thing. We don't get rid of the disease. We.... as said..... Remove the part most affected by it. 

I have Celiac Disease now. Probably always had it.  Never showed up until my colon was gone.  Dermatitis herpetiformis.  And it sucks. Of course they can't pin it on Celiac Disease. But it's like uc and Chrons. Same. But different.  

Oh well. It's not as bad as uc. But it sure is annoying. 

R. 

Yes I have cuffitis. To me it's UC in the cuff ( the little bit of tissue left behind to connect the pouch to the rectum. So I agree with the others above. Well always have it unless we get it removed and go to a bag.

Halo52208 posted:

Yes I have cuffitis. To me it's UC in the cuff ( the little bit of tissue left behind to connect the pouch to the rectum. So I agree with the others above. Well always have it unless we get it removed and go to a bag.

This is exactly what I was warned about before I got the pouch and why it may not work for me. Exactly. Because my uc was mainly within the few few inches of my colon. And that the uc would show up in what they left in. And it did.  But I had to try it. Didn't work. Had it removed. 

R. 

Thanks everyone for your replies, does make it a bit clearer, I think lol!!!!!

It seems there are extra things going on even if the target colon is gone, ah well

such is life!!!!

Que sera sera

Heather

I was returned to the illeostomy in February as had another blockage, twisted bowel, also had many emergency adhesion ops, everything was fine for 22 years and then wham, lots of problems. This time the pouch would not reconnect so have the illeostomy, still trying to get used to it again, have an end illeo this time not loop.

Have numb tingling feet, doc said low B12, this has been on and off for years, had 3 shots and now its high, but have to keep a check on it. Also had quite alot of Flagyl lately and heard this can cause it too. Has anyone else had this problem.

Doc wants me to take anti-depressants, but the side effects are endless and horrific so I thought I'd try acupunture on Wednesday, see what happens.

Has anyone else had this problem? Thanks for help

Heather

Hever,

I have perpherial neuropathy in my feet and no longer take flagyl as it made my feet feel worse. I also am getting B12 shots and supplements but that didn't cause my PN. Mine is bad and I use a cane

As for antidepressants.  I take them and expect will always need them. The colon helps manufacturer serotonin and other brain needs. That is why the gut is called the second brain. You might want to resesrch this.  Others here have no problems with this but then some of us do. I believe it is not the sole reason I am treated for depression but a contributing factor.

Hi TE Marie, thanks for your reply.  Yes it sounds like Serotonin and maybe other brain needs could be involved,  I'll do some research on it. Bit worried about this PN problem as my grandson nearly 2,  has had cancer for the last year, in his abdomen, a massive tumour, in remission now, but his treatment has included plenty of Flaygl, as he constantly has c. diff,  reflux meds, Vincristine a chemo drug, all of which can cause PN, of course he is too young to tell his mum, still its a worry on top of everything else, now my daughter has a Desmoid Tumour, thankfully benign, but I do wonder if there is any genetic factor in all of this, UC is in the family, and my specialist has questioned her about this and FAP, she is currently consulting a geneticist.

Thanks again

Heather

HEVER,

I am sorry your grandson and family are going through all of this  Flagyl is what got rid of my c.diff, after 8 months off and on, in my j-pouch. Many here use it without the PN side effect for pouchitis. I don't know the percent that have this complication. I wonder if he is too young for a fecal transplant for his c.diff.

Hi and thanks for your reply, he is actually being considered right now for a fecal transplant. My daughter is really keen for this as he has had countless doses of Flagyl and some other really nasty antibiotic, I cant remember the name of it, but special permission was required for him to have it, it never worked, he still has c. diff. He saw his gastrologist today, his oncologist is also keen and been pushing for it, he has a scope soon, I think its a sigmoidoscopy as too small for colonoscopy.

I think all the stress has definitely made my symptoms worse but he has been thru so much for a baby. He should be having fun not be in a cancer ward.

Anyway here's hoping the fecal transplant is a success

Had acupunture today and 2 more sessions to go so heres hoping it helps

Heather

Que sera sera