quote:

Chuckus - how long after chemo until things get back to "normal"? I have completed 8 of my 12 treatments with a temp ileo. Wondering how soon I will feel be ready for takedown?

Actually, I had takedown right smack in the middle of my Chemo. I had about half of them prior and half of them afterward.

After takedown, I was given a 3 week hiatus until we resumed Chemo's!

Anywho.....back to your question. It took about 2 or 3 months before I got to where I had a "normal" BM (normal now...) and things weren't so thick. I know, TMI.

Actually, they like to keep you near cynnycal so that IF you do have a complication, your not in some far off land who's never heard of ~ let alone seen someone with our condition(s).

My doctor was hesitant when we went to Jamaica for our Honeymoon in October 2005 ~ which was less than a year after takedown and far from a year out from Chemo. But, I just went and that was that. I gambled!

"Cynnical",
I have not been on this site for some time, and smiled as I realized that we were at the CC about ths same time. Sorry to hear that your visit was not more productive. I usually set aside 5-6 hours of my time for a visit with Dr. Fazzio, (not unusual to wait 3+ hours for 10-15 minutes of Dr. Fazzio's time). Since I have a 6 hour drive it is normally a two day affair. While I am not happy about this situation, I have no choice, as yet. So, I guess you could say, I feel your pain
Joe

Rebecca,

I have been following your progress for awhile now and I don't say much, but I did want to add to your thread.

First of all, I'm glad that it seems like you are progressing and that some things are starting to go good for you. It's great that you were able to have K pouch and that you are looking at your very last chemo treatment. I hope that the trend continues and that the K will be much easier to handle after chemo is done.

Now, I wanted to comment on the busy schedule of Fazio. From everything that I have read and heard, he is a very skilled surgeon and well rounded man. And, he's very much in demand. But, I also have to wonder how his hectic schedule and trying to pack in as many patients as he can might become a problem in certain situations. While many people might not think it is a big deal to always wait for a token consult, it does seem like Fazio's schedule interfered dramatically with what you wanted out of the consult. You didn't seem to get much of his time and I wonder if that was because he was rushing things to catch up. Most of you may not think much of this waiting stuff, but it really does bother me. And I would be quite upset if I came in from a big distance and had to wait half the day and miss my return flight only to get a consult without my questions answered or addressed. I'm sure that the administration and scheduling geniouses out there are making the most efficient use of Fazio's time - but it seems like there is always room for improvement.

Anyways.......

Rick

Rick
In some ways I agree with you about scheduling. I've walked out of doctors' offices after waiting too long.

I was in Cleveland for an appt with Fazio yesterday. I noticed that there was a sign in the waiting area that said "If you have waited more that 1/2 hour for your appt please notify the desk"
I thought "then what!"
My husband said we were in bizarro world in the clinic yesterday. We arrived 1/2 hour early and he took us right in b/c he was trying to get to a meeting on time. I will say that he answered all my questions. I don't know how the rest of his day went. I was very lucky.

On the other hand....when I went for the appt when he took the 24/7 catheter out it turned out to be a much longer appt than scheduled. My incision had opened in one spot since surgery and the night before the appt another spot looked like trouble. So he had to do a 'little' procedure that took much longer than expected and I'm sure pushed his appts off. I apologize to everyone

It's hard to know what to expect when you go there...but I wouldn't go anywhere else.
and again I agree that even though he was called out , he could have done better answering her questions.

I haven't said much either about your post, but what bothers me the most, is that Dr. Fazio did not do the scope. I have done my share of waiting for my surgeon, and I don't like it, but he's worth the wait. But, once I have waited, he does not rush me, and I have his complete attention until I am done. Unfortunately these surgeons only have office hours one or two times a week, and the rest of their week is spent in the OR. Also, I find my surgeon and Dr. Fazio travel alot, I guess it goes with the territory. It's not a great situation, but sometimes we have to wait. I just wish he took a look at your pouch first hand. And, I think if I were you, I would insist on that the next time. Just my opinion....

janna

Leslie, sorry we missed you. Hope your flight home went well.

We had an appointment with Fazio scheduled for 2pm and we were right about on time. That being said, he scoped me and took his time explaining things to me and answering every question my wife and I could come up with. So he may have run late for others. My bad. Anyway, I dont think its the wait that would suck but the not having the answer you were looking for. When you try and get the best, you just assume there is going to be a wait. Sort of when you are trying to get a reservation at a nice restraunt.

Mike S

I have to speak up for the Cleveland Clinic here, emergencies do happen and it looks like Dr. Fazio had an emergency. I am sure there are other doctors qualified to scope and take barium x-rays and biopsies. Dr. Fazio will get the results. We don't want to "only" count on 1 doctor at the Cleveland Clinic, their are other very qualified doctors taught by Dr. Fazio. If this was an issue to see only Dr. Fazio, you should have stated you would wait or want an appointment the next day. Emergencies are always going to take top priority over a doctor appointment. Sorry...I guess I understand even though I understand Rebecca's being upset; but you have to remember, there could have been a life theatening situation and be thankful...the emergency wasn't you or one of us that needed the immediate attention of Dr. Fazio. Just a thought. I guess next time space out your flight for an overnight stay, so this doesn't happen again.

Also, if a technician or doctor is having trouble getting in an instrument for scoping or the catheter for barium......I do it myself or I say, "Would you like me to put it in?"
My Kock Pouch is "Gold", I will speak up if they have trouble or don't seem to be having an easy time with the scope.

When I go to the Mayo Clinic, I'm there for like 2 or 3 days for appointments, tests and results. At the Mayo Clinic, the doctor even asked me if he could put my catheter in? Of course, I already had it in; so I let him try. I am the "Boss" of my Kock Pouch even at the Mayo Clinic or an area GI appointment....lol. No one knows my entry way to my Kock Pouch like I do, and I will not let anyone touch me if they don't know what they are doing. I am such a pleasant patient....lol. I'm the expert, and I let them know it!!!!!

New Motto......Protect Your Pouch!!!! Say "No" if the technician or doctor that sees you doesn't know what the hell their doing. Insert the instrument yourself or walk out the door. Can you tell my pouch is like "Royalty"? My pouch is going to last my lifetime and I protect it.

This message has been edited. Last edited by: Jasmine,

no no no, i wasn't really mad at the waiting...i was just irked that he didn't do the scope, but at the time the other doc was gonna do the scope, i didn't even know if Fazio was gonna make it back to see me or not.
So my thinking was, well, in case he doesn't get back here in time, at least I'll have seen the inside of my pouch (honestly, i was eager to see it myself, not that i didn't think another doc couldn't have seen something wrong if there was something. but i was more curious than anything)

and i know that it was an emergency that made me wait. I joked about it to Gina (as in "how DARE someone have an emergency when i'm here. hahaha.")
but yes, i thought to myself, if it were me that was having a dire emergency, i'd for damn sure want Fazio coming in to save the day. So it wasn't so much that. *it was more my mom freakin out about our flight.

Actually, when i was sitting in the lobby the second time, after eating, i just opened the door to the rooms (all you guys know, the door they come out of to call your name). I just waited til someone came out, and then walked myself right back there and kinda stood in the hall so someone (almost immediately) asked was i lost. Then i went into my whole spiel that i was missing my appt, they told me to leave and come back and now i'm back and wanted to make sure they KNEW i was there. Turned out Gina was on some sorta break. so i was glad i went back there myself.

After the appt. i was chatting with Gina while she typed up some notes and we were joking about how much more good natured i was about the hold ups than some other patients that day.

And while scheduling my next appt. in may, I did say "well, should i try and get the first appt. in the morning? that way there's less chance of runnign behind" and both her and my mom (who's a nurse and works with lots of top doctors) simultaneously said "nah. that really won't work" Gina said "oh he usually starts out the day about 2 hours late. from thigns he has to catch up on before seeing patients"
So i took the afternoon appt.

Oh, and Kaboom, my last chemo treatment is now OOOOVVVERRRRRR!!!!! ended last saturday. now i'm just letting the side effects wear off, and looking forward to a nice normally functioning pouch soon.

I think all your points are very valid though. Hey, we live and we learn. I won't ever NOT go to cleveland clinic since, as my mom said, they saved my life. Dr. Fazio's worth the wait. I guess i'll just know for next time to demand answers to the more nagging questions before he rushes out
*and yes, they do travel alot, i think he was outta town last week, and i still hven't gotten an answer to my email about traveling restrictions. but tis okay. Gina tried to answer for him.