Meeting with the surgeon today

[lhawk0730]

Going with mom to meet with her surgeon today to inch forward in the process of getting her ileo reversed. Medicare takes absolutely forever to get appointments it seems. So I'm very much hoping he can give us a very near surgical date today! It's been almost a month since her doctors decided to hold off on chemo to do this reversal. If mom can get in next week, it would be so ideal. My son is leaving tomorrow for a 2 week vacation and I'd love for him to miss the whole experience of grandma (his 2nd mom practically) in the hospital again and my staying there each night. Please say some prayers, swing a chicken, do what you do, that mom gets to move forward in her process of licking this damn thing. Thanks.

[lhawk0730]

And they never bothered to get insurance approval 3 weeks ago when the surgeon first decided on this. He's booked next week then leaves on a 3 week vacation. Oncologist won't reevaluate just starting back on chemo until he knows another surgeon can't perform the procedure, surgical group won't bother trying to switch physicians until she gets medical clearance from her primary (which they never mentioned while we were there 2 hours ago). And they are all acting like I'm trying to rush some silly cosmetic procedure! I would like my mom stitched back together so she can finish chemo and hopefully not wind up dying from this effed up disease!! I hate all this red tape!

[Lee]

So sorry this is happening to you and your mother.

Why does your Mom want the ileo reversal now? Is she still on chemo? Usually they wait until after chemo is finished to do these procedure. Chemo can cause major diarrhea issues.

I hope it gets better for your mother. Yes medical approvals can be a MAJOR hassle.

Best to you and your Mom.

Lee

[MSJC]

I don't understand the rush for the reversal. I'm not trying to be a pain, just asking. Is it giving her problems? Many have gone for pretty long periods before being reconnected.

[lhawk0730]

Mom got really dehydrated, to the point of hospitalization' after both rounds of chemo she's done since surgery. She goes into acute kidney failure with creatine levels into the 3's. The oncologist said he wasn't comfortable continuing chemo until her other doctors figure out the kidneys. Nephrologist says dehydration, plain and simple. Main problem is her doctors don't work together. The oncologist was ok with delaying chemo to reverse, but I don't think he had a 3 month break in mind.

Any suggestions on how I can get this sped up, I'm very open.

MSJC, asking questions is the only way to get the full picture. So no, you weren't being being a pain at all.

[Lee]

So are you saying the ileo is causing the dehydration? Is there any chance she could increase her liquid intake a day or two prior to her infusion. I know I had to because I too got it with major diarrhea after each infusion. I was aware of people who ended up in the ER because of dehydration issues with FOLFOX.

Good luck,

Lee

[lhawk0730]

She drinks as much as possible. If she pushes it, she vomits it back up. I asked about getting IV hydration very few days and got a resounding NO from oncologist. Sigh.

[MSJC]

Lee, I was one of them! Spent my 50th birthday at the er getting fluids, also fluids several times during folfox treatment...me and Oxi don't get along!! Ihawk... from what I know reversal is usually six weeks after last chemo treatment. If I were in your shoes I would be having a serious talk with the oncologist. I would not want to go through chemo newly reconnected, it was rough enough 6 weeks out. The doctors need to get a game plan together, and from what I understand, the oncologist usually leads that party.

[Lee]

Has her Onc talked about possible reduction in doses of the chemo she is taking? If she is having this type of reaction, maybe lowering the chemo dosage might help. I'm concerned your mother could still have major hydration/diarrhea even after this reversal. And not having the ileo could create a host of new problems.

I'm not a Dr, but keeping the ileo seem smart until after she finished chemo. Have not heard of an ileo causing this type of a problem.

Please understand, I have a permanent colostomy. I think I would have been tied to the toilet for days following my FOLFOX infusion if not for my bag.

Lee

[lhawk0730]

Thank you all for your input! From reading the board's experiences, I've tried to suggest keeping the bag until after chemo. All I can think of is mom is not understanding the bathroom issues. I think she underestimates the diarrhea from chemo and what her "new" bathroom experience will be. I think maybe all these delays may be an opportunity to get her to reconsider and push for completing chemo. Her oncologist does NOT lead. He "offers" chemo and is very relaxed about it.

[MSJC]

Oxi made me very sick, onc reduced dose to 75% and it helped a little, along with offering to do whatever was necessary to help get me through the treatments. Your Mom's oncologist has a lot more tools in his shed than he is using to help her, I would find another doctor. Sorry your family is going through all of this, it's tough enough when the doctors are working with you... and it sounds like he is not.

[Lee]

Oxi made me very sick, onc reduced dose to 75% and it helped a little, along with offering to do whatever was necessary to help get me through the treatments. Your Mom's oncologist has a lot more tools in his shed than he is using to help her, I would find another doctor. Sorry your family is going through all of this, it's tough enough when the doctors are working with you... and it sounds like he is not.

Agree! I too was thinking her Onc was not doing enough. If possible, time for a 2nd opinion and maybe a new Onc.

Lee

[cathy123]

So sorry, this all sounds so frustrating. I agree that if it were me I would push to get chemo restarted and deal with the reconnect later rather than delaying things longer. Also, why no IV hydration? I mentioned once that I had a little diarrhea and was having to drink a lot and they instantly offered iv fluids if I wanted them. I turned them down because I didn't feel like getting poked again, but given your Mom's issues don't know why that would not be offered.

[mstults]

Makes me so appreciative of a team that works together.