I'm so happy that your test results are good; hopefully you'll be having surgery before you know it. I'm sorry about
your embarrassing moments, but just jot them down for your book....you certainly could write one!!
Oh my gosh, what is going on with the forum?? I’ve been dying to get feedback on my appointment yesterday and it’s not available!! Am I the only one going crazy??? LOL
Anyway, I got back from the Dr yesterday, and I am so upset. I waited almost 2 hours to see him, which isn't that unusual, but when he came in he asked how I was doing, what problems was I having, then said that he saw I tried biofeedback, etc.... I tried to explain about
how the only problem I have is that the stool just sits in my rectum and causes alot of pain and pressure, and he sort of interrupted and said "well, we knew this could be an issue" and that the colon was definitely the largest issue, but once that was gone it had the possibility of
opening up all other issues. We had discussed this all before surgery, so I agreed he had told me this.
He examined me and did a scope, said small intestine, connection, etc. Looked good. Then he did a rectal exam, and said I have a rectocele, but before doing surgery on that (STARR procedure) he wants to do another defogram and another sitz marker test. He thinks I may have small bowel as well as stomach motility issues. The visit was going well so far..sort of.
I got the feeling from the beginning of the visit that he felt like I was blaming him....nothing he said specifically, and I certainly don't blame him at all for my problems, but he said "well, you're better than before surgery, don't you think"? and "we knew you could have other issues". I told him that of course I understood surgery wasn't a guarantee, but that as far as being better than before surgery, in some ways I am, but others I'm not sure. I explained that at least now enemas, prune juice and grape juice work and that they never had before, but now I have this constant rectal pain and pressure if I don't have a bm after every meal, and most nights I spend 2-3 hours trying to get comfortable by waiting for the juice or enemas to work, whereas before surgery I only took laxatives every 4 to 5 days and the other days at least I wasn't in the bathroom all night. I think that is what upset him.
At one point in the appt, I can’t remember exactly when, he said something like “so do you want a stoma?, we’re running out of options here”. I said I really didn’t except as a last resort, and asked again about
the rectocele. I can’t remember what he said at that point.
Anyway, he asked how this rectal pain affected my day to day life, and I got a little weepy and said that it affects it alot, and that we were actually supposed to be going on a cruise in a couple weeks, but cancelled, He said "Why would you cancel?" and I said "well, I don’t want to go on a cruise and not be able to eat...." I was going to continue on to say "like I want to eat on a cruise without spending every night in my stateroom trying to go to the bathroom", but he interrupted me and said that me saying I couldn't eat was a sign of an eating disorder and that he could do all the surgery in the world and if I had an eating disorder nothing would work long term. What the heck? An EATING disorder? I love to eat!! I'm not losing weight, I'm not fat, but certainly not skinny...if I hadn't been so surprised it would have been funny. Anyone who knows me knows I do not have an eating disorder!! I was so angry that I started crying and he went on saying that whenever someone says they can't eat because of pain it's a red flag for eating issues and surgery may never help me and could actually make me worse. Then he said that he had patients with terminal cancer who lived their life as well as they could and basically implied that I had a bad attitude as well as an eating disorder.
I told him that if being afraid to eat because of the terrible pain I had after a meal without a bm meant I had an eating disorder, then maybe I did have one, but I've never in my life considered myself as having an eating disorder, and no one else has ever mentioned that either. I was so ticked at myself for crying, but I was furious and when I get angry I get emotional. I also told him that I didn’t have this problem before surgery. I had other problems, but the rectal pain was something I’d never experienced before. He said “of course not, before your colectomy the stool never made it to your rectum”.
I was shocked. I have always been a very positive, upbeat person and unless I'm talking to you all, or to my husband who knows how horrible I feel sometimes, no one around me has a clue how uncomfortable I am. For the most part I try to live as normal a life as possible, but going on a cruise right now isn’t something I want to try. For anyone who has been on a cruise, the food is amazing, you tend to eat all the time, and then party all night. I just can’t do that right now, so why waste the money?
I think after I told him that this pain was something new since surgery, he back tracked a little and said that of course the tests indicated that I had severe colon inertia, and that's why he did the colectomy, and he wasn't trying to make light of my problem and he knew it was a very serious problem (and said, “look how big your file is, of course I take this seriously", ) but I just quit listening. I was still so upset I just wanted to get out of there.
Now I'm scheduled to start taking the capsules for the sitz marker test on saturday and have xrays next Thursday. I am dreading that, because I can't use enemas at all. He said I could still drink grape or prune juice, but I’m really nervous about
not using enemas. Two weeks later I'll have the defogram.
I'm considering writing the Dr. an email. I couldn't say half of what I wanted in the office because I was so shocked and upset...what do you think? I'm still in shock, but I just feel like he totally misunderstands this rectal pain, regardless of what he says. I totally understand I don't have terminal colon cancer like some patients and I never could compare my problems to anyone who does have that, but on the other hand, he is my Dr. and I would think he'd want to know the issues I'm having, unless he just thinks he did the colectomy and his job is over. What I wanted to tell him is that since I don’t talk about
this to family or friends (other than you wonderful friends here), I thought his office was the best place to be honest. If he doesn’t want to hear it, maybe I need to find a Dr. who does.
I’ve already called and asked for copies of all of my records. I had planned to get them all anyway, but this just gave me the push to do it. I had planned to go to the Cleveland Clinic in Weston, FL. Before going to the surgeon I currently go to. I’m wondering if I should just make an appointment and try to get in to see someone there. It’s about
a 4 hour trip for me, which is what made the decide to use my current surgeon; he’s just one hour away. Also, I did quite a bit of research on my current surgeon and he has an excellent record...even if he is a jerk! Before this happened, I liked him well enough. I was never crazy about
him, but I thought he was very competent and honest with me about
everything, so I was ok with him. My husband liked him. It’s funny though, because I’ve said a couple times I wasn’t sure if I liked him or not at first....and then my husband said he thought he was good...so much for my husband’s opinion from now on!!
Sorry this is so long, just wanted to share and see what you all think I should do. I'd love to just walk away from him at this point, but I really don’t know if I want to start over with another Dr. I'm just not sure what to do.
Post Edited (Janiepain) : 10/2/2009 9:55:25 PM (GMT-6)