Is the permanent ileostomy worth it?

I have permanent ileostomy and I can honestly say it was and is worth it! However, if you a functioning j-pouch, then I say, "if it ain't broke, don't fix it"

@OscarThePouch posted:

Anyone did this and fest like it gave you your life back and got you independent of doctors and meds?

Hi,

I’ve been thinking to come here and ask the same question. For 25 years I’ve been managing my pouch. Overall it’s been great. However, the not good times are exhausting to me as I get older. I wonder if managing an ileostomy would be easier.

I had a temporary for 4-5 months and found it to be awkward to deal with. Is there new and improved equipment out there now? Is the permanent ileostomy easier than a temporary one?

All the best to you!

Yes.

And an end ileo is or can't be.

Shouldn't be compared to a temporary ileo.

Temps are terrible. I had a temp. Terrible experience.

I have an end ileo. I haven't seen a Dr in six years. No meds. Nothing. I feel normal and it's "my cure".

All my issues stopped.

I'm fortunate. And I'm sure there are some who have issues with a permanent. I'm not one of them.

R.

When my J pouch had to be removed, I opted to get a continent ileostomy instead of the bag. I have had a BCIR for 12 years and have had no complications with it. I am able to do any activity that I want and eat almost any food. Most of the time,I am not aware that I have it. I published my story, "Researching my Options" in UOAA.'s magazine, The Phoenix.  You can read this article on the Quality Life Association's web page (www.qla-ostomy.org) under the Ostomy Options and Education tab.  The surgeons who performed the BCIR procedure have retired, but there are a number of surgeons who do a very similar procedure, the K pouch.

Thanks for your feedback. Here's why I ask.

My pouch is in a weird place...I have a fistula leading off the pouch that is closed on one end, which a few times a year causes me some problems. My doctors think poop gets stuck in it and causes intense tailbone pain and sometimes something that feels like an abscess but the abscess has never been caught on an MRI since usually the antibiotics resolve the symptoms by the time I get the imaging appointment done. Pelvic floor therapy has helped me manage it somewhat, but it gets tiring to have this happen. I haven't really yet figured out if there's anything I am doing or not doing that triggers the episodes.

I see a dietitian at my  GI doctor's office. She has recommended a diet to me that doesn't make a lot of sense. I've attached the PDF as images to this post. The main thing that confuses me is that she recommends a Phase 1 diet after one of these episodes to contain no fiber, but meat and dairy are allowed. But, the most recent episode came after several weeks of eating exactly that way. I suspect if I continued it I would feel worse. I need fiber because it keeps stuff moving through the pouch and I don't get the constipation that eventually leads to stuff getting stuck in the fistula. I'm sure I shouldn't eat chunks of raw fruits, veg, leaves, and bean skins, of course, but whole wheat bread, brown rice, cornmeal, oatmeal, etc I definitely need to eat to feel normal. I started consuming beans as pureed lentils and tofu so I am not having to deal with as much roughage. So that might be fine but I am not sure. When I'm on twice a day Cipro and Flagyl right now it makes it so I can kinda eat anything again since the inflammation is down but then that gives me a false sense of what, if anything, I could eat to prevent these episodes in first place. Maybe there's nothing I can do dietary wise. That was certainly true for my UC -- no diet made a difference.

To me, I find it kind of surprising that any dietitian recommends white flour and white rice to anybody, for any reason. It's bad for you. If i ate that way for a long period of time to protect my pouch, my sugar cravings would be out of control because those are high glycemic foods. I used to be more into alternative dietiting stuff but I don't do anything that picky anymore...however, some stuff is scientifically based still, such as white flour and white sugar being generally unhealthy for anyone, IBD or not, colon or not.

All the diet stuff stresses me out so much. Maybe it would be fine if I just lived on twice a day Flagyl and Cipro forever, because that seems to be the direction I am headed toward given that these episodes are happening more frequently now. I'd be nice if I could figure out a way to prevent them but I don't know if there is. So I've been thinking maybe the permanent end ileo is inevitable for me and I need to just not beat around the bush anymore.

FWIW daily Cipro and Flagyl can be just fine for a long time. I’ve been on them for quite a few years. If they do the trick for you then that may be a better choice than surgery. In my case they work just as well once daily as twice a day.

If the troublesome detour from your pouch doesn’t open into another cavity then it would generally be called a sinus rather than a fistula.

Oh yeah I think they do call it a sinus...fistula was when they were wondering if it emptied into something or not. The whole thing has been really difficult to diagnose and took many years before they figured out it was there, even though it was likely there since shortly after the pouch was placed 15 years ago. =/

I'm seeing the dietitian again to sort out the confusion. Maybe food has nothing to do with it.

It’s very possible that food choices have nothing to do with it. Perhaps the neck of the sinus gets a bit inflamed/swollen sometimes, which would create a closed space with crud in it. This could lead to increased inflammation in a painful process that takes a while to resolve. In this scenario keeping pouch inflammation to a minimum might reduce or even eliminate the problem. The antibiotics would be intended to prevent the problem (by reducing pouch inflammation) rather than treat it after it gets miserable.

So my maintenance abx dose for the last several years has been flagyl 500 mg 1/day. But maybe that's not enough now. Before that i had taken a break from antibiotics to try probiotics, but Visbiome didn't work well enough. It did seem to do something more than being totally unmedicated but it didn't keep the inflammation down enough. So you might be right.

Although it begs the question...and I asked my dr this at the beginning of my journey with pouchitis a decade ago...eventually the antibiotics have to stop working. That seems logical to me. Like first I had one episode of pouchitis, which was treated, and I was fine unmedicated for a long time. Then another one happened. Same treatment. Eventually this happened enough where I had to be on antibiotics all the time. Now that dose is possibly not enough anymore. What I thought might happen is in fact happening even though she said she didn't see that happen very often. So maybe I am unlucky, or she was wrong.

So perhaps I can turn the knob up one more time, see how many years that gets me, and then eventually I'll have to do something else. Will it be biologics? Surgery? Hard to say. I'm 44. Can I make it another 40 years on Cipro and Flagyl given my life is that long?

Pouchitis/pouch inflammation isn’t generally an infection, so the dynamics that can lead to antibiotic resistant bacteria don’t seem to operate the same way. Antibiotics can eventually lose effectiveness, but it seems to take a long time. I’ve been on Cipro +/- Flagyl for 17 years, and the combination at a low dose is still working nicely. If they fail I’ll have to look for a biologic, but I’ll deal with that if it happens. I try to focus my attention on what’s working rather than what might go wrong in the future.

@OscarThePouch -

Thanks for posting the attachments.  I'm always on the lookout for references listing foods with soluble fiber. I generally agree with your dietary observations.

Is Rifaximin an option for you?  

If I skip the sugar, white flour and insoluble fiber, but get enough soluble fiber in my diet, and if I don't forget a Rifaxamin 550 TID dose too many days in a row, but do remember to drink enough water, I feel almost normal.  But if I go off track with any of it, (Cake! Cookies!) I am sure to get a prompt reminder from my floppy, prolapsy pouch:  pain, frequency and occasional blood for good measure.  

My temporary ostomy was quite good, so I fear a permanent ostomy less now than before I started down the pouch path. I'd always considered a k-pouch would be my back-up plan.  Now I think I'd go to the permanent ostomy   Could be when I get tired of the dietary restrictions or when insurance no longer covers the Rifaximin or if it stops working.  Time will tell.