IT'S ABOUT DANG TIME!
Yesterday was finally the appointment with the UCI surgeon, the third and final surgeon in-network, who was mysteriously never mentioned until I wanted to go out of network to see the SD guy. HMMMM.
We went into the appt with a little trepidation. Even though we felt like something good would come from this, we still were nervous he would be a jerk (I mean we have a bad track record here.)
My mom, the hubs and I arrived at the appt around 1:30. We didn't have much to say, just waiting. We finally got into a room around 2:15, and from the nurse that took us back things were great. The staff was friendly, but knowledgeable, funny yet professional. All good signs.
About 45 minutes later the surgeon's fellow came in to do the preliminary overview with me. She apologized that they were running so behind and then looked right at me and said, "I've looked over your records, they are quite extensive, but why don't you tell me in your own words what's going on." And when I gave her the whole story, she actually listened to every word, without butting in (pun intended.) She even told us a story of how she had a bad stomach flu last summer and she had one day of incontinence and it was the worst day and she said she couldn't imagine living like that for a year and a half!
She left the room to brief the surgeon and said they'd be back in soon. The three of us just looked at each other, kind of in shock. Was this all too good to be true.
But no it wasn't. The fellow came back in with the surgeon and the process was much the same. The surgeon was so easy to talk to, he was friendly but you could tell he was "the man." He took every word I said seriously, believed me and never questioned what I was telling him. Agreed, after looking at my records that this was a bad situation and no way to live.
Then the best part happened, he started going through our options, in a very clear and easy to understand way. First thing he said once we discussed that an ostomy was likely my only option was, have you heard of a continent ostomy? I said, do you do them and he said no. So I told him about going to see the SD guy in two weeks and he was so supportive of that. I really couldn't believe it. I told him that the insurance was saying it was an elective procedure, he said it's all in the wording and if nobody in-network does them, and it doesn't sound like they do, they have to let you go out of network! *Head spinning already at this point.*
We then discussed a traditional ileostomy and he said it would be better functioning the second time around if this is what I chose. He would remove my j-pouch but probably wouldn't have to close the sphincter since it wouldn't be connected to anything. He said I could always do a traditional ileostomy first and then if I didn't like it go to a k-pouch or vice versa. He was big on leaving options open for me to see what worked best for me.
Then another amazing thing happened, he said, "You've talked about a lot of options and I can tell you've done your research but you haven't said anything about sacral nerve stimulation."
I said, "Well I brought that up to two doctors and they said that wasn't an option."
He then said, "Well it's only approved in the US for urinary incontinence, but it has shown some very positive results for fecal incontinence as well. It won't totally solve your problem but it may help give you some relief, even if it's just in the interim. FDA approval doesn't have to be the end all to get something approved." He said, "It's widely used in Europe (of course they are so far ahead of us in these ways.) I want you to go and see a colleague of mine here who does this, I'll tell her that you are fecally incontinent with some urinary incontinence, wink wink. That way it should hopefully get approved through your insurance."
He then had to do a quick exam and for the first time a doctor actually asked me if that was ok?! He said to tell him if it was too uncomfortable and he would stop and he was SO gentle.
He did comment that he wasn't quite sure how this could have happened. That I had a stapled pouch, which is supposed to be the way to prevent sphincter damage and the only thing he can think may have happened is that my original surgeon stapled through the sphincter. Of course he wasn't accusing anyone of anything, just speculating. We still found it very interesting.
Can you believe all this. Well I sure couldn't. When they stepped back out of the room, I almost started crying because I felt so confused. I just looked at my mom and my husband and I could see the relief on their faces. We just had a very productive, information and hopeful doctors appointment, only two years in the making. Holy stinkin' cow!
So to recap:
- I do have options, he wants me to see SD guy and then he said to call him back when/if I'm ready to move forward with him. Or if I need a letter for my insurance to support my need for the k-pouch that he would write it.
- Their office is actually going to put the referral through for me to see the Sacral Nerve specialist. The surgeon's nurse came in and said she'd take care of it and would call me when she had the approval, but that she didn't think it would be a problem. She also gave us the contact info for the Sacral Nerve specialist so when I am approved, I can just call and make my appointment. I don't have to do anything!!!!!
- They all listened to me, took me seriously and didn't think I was crazy.
The three of us left the appointment feeling more hopeful than we have in we can't remember how long. It's unfortunate that we couldn't have seen this guy a long time ago, but we can't change that now. But for the first time we actually can possibly see a light at the end of this long, dark tunnel. Now on to SD guy on the 25th and then hopefully we'll be able to make the decision that is right for me. Hallelujah, Amen to that!
One more thing I can say, is that after these last four weeks of feeling worse than I have in a long time is that I will do WHATEVER it takes to get better. We still have a long road ahead, full of hard choices, but I will do it. I need to feel well again, live my life and be the best I can be. I'm so thankful that my mom and the hubby were there with me yesterday and with me all the time to support me. Thanks to everyone who has stood by me, cried with me, loved me and wished me well everyday!
** Side note: As far as the bladder infection, raging pouchitis (severe, chronic, acute according to my GI) and the partial obstruction, I do think that slowly things are improving. I'm so exhausted and need lots of rest still, but I think the meds may actually be kicking in. Keep your fingers crossed!**