Saw the GI today. He altered the TPN and lowered it and added sandostatin, increased lipids and cut way back on dextrose. Seems blood work was all good. Was not familiar with k pouch or the gravity bag. Perplexed by Ohio decisions.Script for tincture of opium and lomotil.
He was very nice and hopefully Chris will not have to be on TPN for 1-2 months as stated.
We saw a few friendly faces there who were full of hugs for Chris and said how well he looked since they saw him 2 years ago all doped up after j pouch excision and at 108lbs. He was 124 today.

Chris is still having high output, waited all day yesterday for call from Dr in Ohio for some direction. No call.Maybe today?
The sandostatin really thickens the output but also seems to let everything sit in the pouch all night.Day time still high and fluid like.

So what is the overall 24 hour output now?

Jan

Running about 2000 in 24 hrs, was 1650 in hospital before TPN, and still no calls back from anyone, not even the GI in Weston!

The latest visit in St Pete has resulted in another 5 weeks on gravity, if healing does not occur and chris is unable to intubate when we return for education, he will have a temp ileo or possibility perm ileo depending on what happens in the OR. Liquid lomotil has been started and pepcid, Dr Shore was kind enough to actually sit down and take time explaining what no one had before. Fran, spent time with Chris going over diet restrictions, not to say he heard or wants to hear or will listen, he is his own worst enemy.
I just want peace and calm and an end to this roller coater ride we have been on for 4 years.
If only Chris would listen to someone.

Does Chris come onto this site at all? I'm wondering if talking to some people his age and/or similar circumstances would help. God forbid any of us would listen to our parents!!! I hope he can make peace with whatever the end result will be, whether it's just a temp ileo or a permanent one.

NO. Chris does not want to talk to anyone. He has spoken to a few members personally on the phone and chooses not to do that again either.
STUBBORN!KNOW IT ALL. JUST TIRED OF HEARING AND TALKING.

I kind of suspected that would be the answer! It definitely sounds like he's in a great deal of denial about what's going on, which is pretty normal. Especially while he's in the midst of all of this, it may just be too much for him to process at one time. I think our minds utilize this to protect us at times when it would all be just too overwhelming. Sometimes asking for help is viewed as "giving in to the disease", which is something that none of us want to do! I do hope that with time, Chris will be a bit more open to asking for help if needed. I'm pretty stubborn myself, and probably put my poor mother through what you're going through now. At least you can use the site to vent when needed!

Holly,
How long did Chris actually have the Ileostomy, wearing the external pouch ? If his mind is made up to "do his own thing" and not follow the rules, this may be the outcome he is headed for. Having a Kock Pouch or BCIR means you have to take care of yourself and think about it's care. The external pouch, although not as "invisible" does not have as many restrictions once you get the right system.

I fully understand. Chris had a temp ostomy when his colon was removed for 6 months. Had continual problems with skin matters, he has very sensitve skin and skin allergies always has. His second ostomy when j pouch was removed he had for a year, he did better but only with the knowledge it was for a year as dr told him that's when he would do the k pouch.
I know he may be headed there and everyone has said that.

I think that some people become fixated with "beating the disease" or restoring themselves to their pre-illness state, which is completely unrealistic and a set-up for failure. To really be happy in the long run, you have to accept the shortcomings of your best situation and work around them. To deny them and fight them, you never get that "peace" that we all want.

I don't see it as giving up, but as being reasonable. It is much easier to focus on what you can do than what you cannot do.

What is it they say?...Youth is wasted on the young!!

Jan

I agree with you 100%. I accepted my j pouch and what issues came with it from day 1. I always looked at it as I am no longer ill, no more bleeding, no more prednisone, no more blood transfusions, no more pain and suffering, no cancer risk and if runny stool or occasional butt burn or days with more frequency, that's a minor inconvenience for all the good healthy years I have been blessed with.
The cup is half full where I sit.

Hi guys,
All my heart goes out to you both. I am living through the same thing right now.
Just had my 7th surgery on a k pouch in 7 years and my new valve just slipped again last night. Major complication because I live in Paris France and the surgeries take place in Toronto Canada!!!
My husband can't take it much longer. I am looking at an emergency flight out to Toronto but my surgeon in away until the 15th of aug.
Hang in ther.
Cry a litlle, scream a lot but please don't give up the good fight!
I'll die trying but I will not give up!
Sharon

When I look back to this fiasco a year ago I am still amazed that 2,672 of my friends here were keeping up with us through the ordeal and all of you pulling for Chris, he sure has come a long way in a year. My rave says it all.
I just had to re read this to put in perspective what transpired. I was a mess then!

Thanks Janice. I know you weren't around back then. It was harrowing. I have a j pouch so it was all I could do to keep myself in tact being away and stressed for so much time.
Thanks for the kind words.