My husband had a complete removal of his colon 30 years ago. He lived life very well with the Koch Pouch. However, a few years ago, there was big stomach/bowel/whatever pain, and scopes and tests revealed a stricture either in the pouch or near it. He underwent surgery to create an ostomy and external bag, supposedly bypassing or at least not using the Koch Pouch. It really has been a nightmare for him (and me), and he has lost too much weight. The Koch Pouch still needs to be flushed, and waste accumulates there weekly. Not much, but some. Now we are faced with extreme "stomach" pain, and the surgeon is saying he could reattach the Koch Pouch as current scopes indicate no problems or blockages. He really is having a problem with weight, and NG tubes have been discussed. I am leery of another surgery, and the term short bowel syndrome I am having a hard time figuring out. Just wonder if anyone else has experience with this. Thanks, Marlene
Sad story, Marlene, for your husband and you.
I feel your pain trying to make an informed decision.
Your husband is 83, a big factor.
He did get 30 years out of his Koch, which to me is amazing.
You said he has an external pouch now while he heals.
The thing I would consider, and it's only from people's experience here with internal pouches that I say this, is they fail. There is a limited wear time having this internal pouch.
Others will chime in, and some will agree while others not.
It is likely he will have more issues, and one right now could be this pain. You have a tough decision to make, but some here probably went through the same thing. Heed their advice.
Sorry to be so grim. Face fact over fiction.
My health dictated I was not a candidate for an internal pouch.
An external probably saved me from complications later in life.
Again, I apologize. I just feel internals are a time bomb for some of us with I.B.D.
Take your time considering options and the advice others offer.
Be well. Be strong. Be informed.
You are on the right track being here, getting answers to help you decide.
Blessings.
MeetAnOstoMate is a remarkable community of 41,452 members.
“I mostly read and still feel like I belong.”
“Doctors took notes; they want others to find this website.”
“From midnight blowouts to big wins, there’s always a hand to hold.”
Hi,
Not blowing my own trumpet or anything, but I was at the healthiest I had ever been prior to getting UC symptoms. I was eating very healthy and exercising 6/7 days. I'd love to know if any lifestyle factors affect UC, but I suppose I'll have to wait until they figure out what causes it.
I've been trying to occupy myself by being in contact with friends often, but some days I am really not in the mood and find it hard to drag my mind away from what ends up being a mountain of thoughts. I suppose it's all part of the learning process and I'm sure it'll happen less with time. This website has been great so far. It's great to be able to write this sort of stuff down and chat with people that understand what's going on. For that, I thank everyone on this website.
Thanks,
Hamish.
If possible, seek out second opinions.
Warrior is correct. Internal pouches eventually fail and cause complications.
At 83, your husband needs to consider the easiest option that will free him from pain and give him the best quality of life.
If you can't get satisfaction from your current medical team, insurance willing, look to other hospitals and medical professionals.
Learn about the physical and emotional benefits of using ostomy accessories.
A second opinion at the Cleveland Clinic would be useful if you can get to them.
Urostomate here, and European rather than American...
When looking into options for my surgery, I came across an internal pouch, and it sounded awesome because for urostomy, it's a continent one, and I thought I would feel... normal?!
But in most European countries, Koch is not considered anymore for urostomies due to issues in the long run, and me being 48 was making the doctors say I'd adjust to the bag in no time.
Just to say... the bag is not so bad :-)
My Ostomy Journey: Ryan | Hollister
Thank you for your advice. Jim has now had the surgery to reconnect the Koch pouch and it is functioning quite well; however, he has not been able to eat and is on strong meds for pain. They are considering exploratory surgery to see where the blockage is or what is causing it. We are back to the same old, same old before surgery, only worse.