First, I want to thank everyone for your feedback from my earlier post. It is very much appreciated!

I returned last week from the Cleveland Clinic for various tests and doctor visits, including w/Dr. Fazio. I am doing somewhat better, but still continue to swing from pain/nausea in my lower gut area and frequent need to empty to feeling quite well with "only" 6-7 empties/day. How I feel can change within the day. Only correlation I find is that if the pouch empties fully, I do "better". Easier said than done as I think I have tried all the tricks I am aware to empty the pouch, other than standing on my head. Interesting...I have nearly returned to my "fighting weight" and exercise, (often thru pain/nausea) regularly, though do not yet work.

The "Gastric Emptying Study" indicated my stomach digests normal, though a bit slow...not considered an issue. Dr. Shen, a GI who works closely with Dr. Fazio scoped my stomach - all appeared fine, and pouch, which as usual, looked great. The CT-Scan and a Pouch Contrast study showed no issues. I am slightly anemic and quite iron deficient. Hematologist,(an appt I requested), put me on iron for 3 months - saying I am either losing blood or have not properly recovered from my multiple surgeries, and "we need to find out what is going on". (More on that later).

Bottom Line: I was having a very bad several days when I saw Dr. Fazio, and my response to his "how ya doin" was to share how I felt -"I hate this pouch". Dr. Fazzio suggests surgery - either exploratory, (cut me open) with the goal to find and fix the pouch, and if problem not found or he is not very sure of a solid fix then go to the illeostomy. Or, just return straight to the illeostomy. Though no decision yet, I am seriously considering returning to the illeostomy, and for convenience, may have a local surgeon, who did my original illeostomy, do the surgery. However, Dr. Fazio also agreed that waiting another 2-3 months may be worth finding if there is more improvement. Financial, (I am not working) and my health struggles will likely force the decision within that time period.

For those who have read this far, I do have some questions and am open to thoughts/advice. Anyone have any thoughts about the surgery, especially returning to the illeostomy? My only concern with the illeostomy is a "short gut". Dr. Fazio did use my j-pouch to build the "k", told me after that surgery that I have "plenty of small intestine", and my stool is nearly always thick. However, he did share that it was important to save as much intestine as possible to avoid this scenario. My main decision may actually be "who" does the surgery, as I have 3 surgeons, 2 nearby, I am comfortable with, though Dr. Fazio is the only one who could correct the k-pouch issues.

Sorry about the long post. Thank you to all again for your thoughts and suggestions! Joe

Hi Joe
I'm glad you went to CC to have everything checked out. It's hard I'm sure to still have questions up in the air.

Having had a Kock for many years, then an end ileo I didn't ask for, I was happy to get back to the Kock. Is there something to indicate to Dr. Fazio that there could be an improvement in the next two/three months? Is he totally stumped with all tests showing all functions good (except the iron)?

re the short gut; when I consulted him about the second Kock (the first had been totally removed), his response was "my concern isn't that you have enough gut for a second pouch. My concern is that if the second pouch has to come out will you then have enough gut. We don't want to make you an intestinal cripple" So I had a second and I am fine. He will not put you in harm's way.

I would stay with Fazio for surgery in the hopes that he sees something in the Kock that can be revised so that you are happy.

and what are your ?s

Leslie

Joe I am sorry you are struggling so much as life with my continent pouch (BCIR) has been great. I admit I have not read all your posts in detail but wanted to just say I am thinking of you and welcome any emails at momboys@hotmail.com.

Hey Joe,

I am sorry to hear that you are still going through so much, but relieved that you at least don't have gastroparesis to deal with as well. You will get to the bottom of this. As for whether or not to try to save the pouch or go to an ileo., I can only tell you that you will know the right choice when the time comes. I know that sounds cryptic, but its true. Something you hear from the docs or a way you feel one morning will make your decision easier and it will feel "right" from there. At least it did for me.

Best wishes,

Les