pouch options

I know I just posted a little bit ago but I'm trying to do research for our upcoming Cleveland Clinic visit. I'm looking into all of the various pouches -J K BCIR - I'm not fully understanding the J pouch. Do you go to the bathroom normally or is it an appliance that you wear on your abdomen and drain? I'm not sure what an ileostomy is or a colostomy. I'm trying to be as prepared as possible so as to minimize our time there and be able to ask intelligent questions. This is all very scary for my son and his young wife and I'm trying to help alleviate as much stress as possible. Thanks for your help!!

I'm 24, I have an ileostomy but plan to have two more surgeries to get what's called a J-pouch.
I can honestly say it's the best decision I have ever made. A lot of comes down to frame of mind. If you go into it thinking it's going to be terrible you're just going to make things worse.

I didn't go out, barely ate, was tired all the time due to getting up all night going to the toilet, fear of going out etc.. I'm sure your son knows. 3 months since I had surgery, I eat what I want, I drink what I want, no getting up during the night, no stomach cramps, no pain.

So Ileostomy is what you have when your large colon has been removed (Large colon is what UC affects)
It's an opening on your abodomen with a bit of your small bowel pulled through. A bag is put over it which collects the waste. You then empty it when ever you like really.

A J-pouch is an internal pouch made from the end of your small bowel, it's then connected back up to your backside.
Every has a different experience but according to my surgeon 5-8 bowel movements a day is normal. I have spoke to people that go 3-4 and some much more.

There are risks with all surgeries, one that concerned me because I'm a guy is that they work close to penis nerves. It's rare but it does happen that some end up with fertility issues & erectile problems. Some people, male & female, freeze eggs/sperm just in case.

Surgery is done in either 2 of 3 steps.

3 step
1: Remove large colon and you have an ileostomy
2: They create the pouch on the end of your small bowel and you have a loop ileostomy. The pouch goes back inside to heal
3: Pouch has healed enough and is connected to your anus

2 step
Same as 3 but step 1 & 2 are done at the same time


I'm by no means an expert, just what I found out when I looked into all this myself

Post Edited (imBen) : 7/17/2017 7:48:00 AM (GMT-6)

Really, nothing other than a colon can allow you to go once a day. Any other surgical option will have you emptying 4x+ a day. People who go 4x are pretty rare too. Most probably go 6-8x. If frequency is your main concern, definitely don't have surgery. I personally didn't want to be in my 30s in diapers and unable to be independent or go to work. I'd rather go 6 or 8x a day than worry about going in my pants everyday.

• Ileostomy is an external pouch from the small intestine (you have no control of when it is active, but you empty when you want, it can be fairly active anytime - especially when you eat).
  
• Colostomy is an external pouch from the colon - not an option for UCers (but you could go 1 or 2x a day with this, it's just not when you want, you have no control, it drops into a bag, consistency is like normal stool)
  
• KPouch and BCIR are rare. I've maybe seen one member here who had it in many years. It's basically the same as a jpouch but you use a catheter to empty into a toilet (from your abdomen) instead of eliminating from your butt.
  
• jpouch you have no external pouch, but like the others, you go more often
  

Whether you have an internal pouch created, or an external, you no longer have the colon. The colon absorbs liquid and compresses the stool. It sounds like maybe you prefer diapers over going more often & if that's the case, surgery is not for you. That's a question you have to ask yourself. For me, diapers were not how I wanted to live my life & i knew that from day 1. I pretty much felt like the moment I put on a diaper, I would have surgery. I never got to that point, but when I ran out of medical options, it was the only thing left and I wasn't going to live like that, but it's a personal choice.

It's not just about the amount of times he'll go. I'm assuming currently he can't hold it at all, with a jpouch you can hold it a while if you need to. Not comfortable but doable.

As NSSG said, if he gets surgery, any kind of colon surgery, he'll go more often. There is no other possibility. If you're hoping to find out that there's a surgical option that will have him going once a day, then you're wasting a 5 hours drive to CC.

ucmom22 said...
Thank you, notsosicklygirl, for your explanation. My son hasn't ever even come close to using a diaper and I know that wouldn't be something he would do. His colon is inflamed but other than going 8-10 times per day, that is his only problem. He hasn't had blood since his diagnosis 11 years ago. He never has cramping or pain of any kind. That's why I'm not so much in favor of the J pouch - he'll be going just as frequently in all likelihood. That's why I wondered about the other pouch options. I assume that he'll feel more energetic overall once all the inflammation is removed via the colon so that alone might be a reason to have the surgery - plus who knows what damage all of the medications have done to him over the years. Thanks for your input...I appreciate your time.

If his only symptom is 8-10x a day, I am not sure surgery would provide him too much relief (but I will tell you I don't think I've ever heard of anyone going 8-10x a day and only having frequency as a symptom). Some people end up going 8x a day or so after surgery. The difference is, after surgery for most people, is that we were dealing with urgency and only had about 2 seconds to get to the toilet, and now we can hold it for hours. We are also off the drugs, done with the expenses involved, and are no longer stuck going to doctors frequently & we can eat anything we want again. I had tons of symptoms, from frequency upward of 20x a day, to blood loss, awful cramping, inability to hold it, tenesmus, waking up in the middle of the night with urgent movements, eating like a bird, repeated trips... I felt terrible from the drugs too. That said, a lot of people think they will have surgery and end up feeling like they are a child again after so far as energy level goes, and for me, I didn't have increased energy after surgery. I am about the same. Best of luck. You should really get him to do his own research. If he was interested in surgery, he would likely look around himself.

It all stinks.

A life with UC, expensive drugs, doctors, worried about diet, accidents, going frequently, missing work, potential hospitalizations, lowered career potential, unpredictability, inability to commit to anything, starving yourself, missing out on spending time with your family...

A life with a pouch, going more often, having to go through surgery, the expense of surgery, no guarantee of a good result, having to have a temp ostomy, noisy BMs...

But, I'd rather have surgery than live with severe debilitating UC symptoms for the rest of my life - if those are the only options. Of course we would all like to take a pill and live 100% normally - and if that pill didn't require a prescription & a large expense, that would be fantastic. Even better if it had no side effects, but that's never the case.