Tuesday, July 9, 2013

Working With Doctors

I work with a naturo-path, and a slew of natural-med doctors. But I also work with traditional doctors.

Regardless of what kind of doctor I'm working with, I have found that I need to feel empowered in the patient-doctor relationship. Their medical degree is important and valued, but it is also intimidating. I have experienced and lived the IC life, and I have researched and discussed MY IC with many people. My experience should also be seen as important and valued. With that in mind, here's some tips I can offer:

1) For a while there, my doctors and I thought I may have endometriosis, so had an exploratory laparoscopic surgery to see if I did have it. The plan was to clean out old scar tissue that probably developed when I underwent an emergency appendectomy for a burst appendix (later we completely ruled out endometriosis, and we decided that this was not a problem as far as my IC went. But I digress.) Selecting my surgeon (or any doctor for that matter) is a crucial part of my IC healing:
a) First, have patience. I called around, I researched doctors, I cross-checked my 'favorites' with my insurance company to see if they were covered, then once I found 1-2 that fit the 'bill' (ha ha. no pun intended), I began contacting people online who were treated by my surgeon. I tried filtering through the 'bad' reviews to see if they held merit. I even 'met' a lady online from some forum I had to sign up for. She had mentioned his name briefly in a surgery she had, so picked her brain about her experience with him. It was really helpful
b) Then I made my appointments. I saw my potential surgeon 3 times to 'interview' him about my concerns, critera, and questions I'd developed.
c) What do I say to him (and all my doctors) when I first meet them? I tell doctors my IC issues and experiences (read all my previous posts for details on what I mean). I'm respectful but upfront about my 'conditions' for being treated. I tell them that I don't want to just be prescribed meds. I'm open to trying some, but I don't necessarily want to just 'take meds' as a way of 'guessing' to see 'if it will help' (sound familiar anyone?). I want LABS DONE! I want to find out if I have Candida! Hypoluxaria! Leaky Gut! Anything else!? I want to look into something before I blindly take drugs. 
d) When we meet for a follow-up, I bring my pink IC note-journal, and I look through it to go over discussion topics. I like to hear the dr's take on research I've found, anecdotes (stories from other IC patients), and ideas I may have on treatment.
e) I ask if the doctor is willing to read a couple of articles that I think are pertinent to my IC, and then I hand him copies and tell him that I want to have a discussion about these articles at my next appointment. In particular, I bring them a copy of Dr. Fasano's research article (it's mumbo-jumbo to me because I don't speak the language of Medical, but they appreciate it). They usually don't know about this article. I want to have discussions on how we think this may affect my IC.

I had lovely doctors tell me that I know more about my IC than he did. I appreciate their candidness. They're probably right. I DO know more about MY IC than they do . These doctors wanted me to get better, and one in particular suggested that I see a local naturopath treatment center who has had amazing results in treating a myriad of things. Right now, I just don't have the money for this center. This was my response to my doctor in a followup visit. I told him:
"I called the naturopath center, and I can't afford their treatment right now. In the meantime, I have insurance, and I have YOU. Can we still work together on trying to figure out my IC?" He was willing to proceed with our discussions and brainstorming (and lab work). This has been an amazing support in my research about my body and my IC.

A good doctor can help YOU peel back the layers of your IC 'onion'.

Journal Entry...a Surgery Story:

March 2013

I had surgery yesterday to identify potential endometriosis. All went well...NO endometriosis (which is odd because my doctors said that 70% of IC women have endometriosis). Instead they found an abdominal hernia that was created after i had an appendectomy (I guess this happens often...a hernia develops after a surgery due to scar tissue. I just wanted to tell you all my beginning -to-end experience.
5 years ago: If you had caught me discussing a possible health problem, I'd probably be talking about the doctor as if HE was the know-all-be-all. Not any more.

I first researched my doctor like crazy: I really wanted to go to California or New York to get my 'endometriosis' cleaned out by Dr. Cook or Dr. Seckin, who are all internationally renown for endo surgery. But my insurance didn't cover either. That's when I found my doctor, Dr. MacKoul. I don't necessarily endorse him over any other gyno-oncologist, but for me and my situation, Dr. MacKoul was perfect. To find him, I looked up which doctor was a chief surgeon in gyno-oncology. Gyno Oncologists treat women with cancer issues, and they have a better understanding overall about all the organs in the women's pelvic area (colon, bladder, spleen, kidney, etc). A regular gyno or OB/GYN typically does not. A Gyno urologist may or may not...you'd need to figure how good yours is. So I picked my doctor based on the number of awards he has in the area, the fact that he's a chief surgeon, and that he is aware of cutting-edge research and laparoscopic training/tools. Obviously I read reviews bout him, but I read those with a critical eye. If people didn't like his 'bedside manner' I didn't really care about that. That wasn't---to me---as important as good lovely dexterous hands in the operating room.

Then I interviewed him throughout 2 office visits: First I began with the basics. I had him examine me, I told him my troubles (IC/possible endometriosos/heavy bleeding during period, the random shooting pain that shoots up my rectal area ONLY during my period, and ONLY when I'm having some sort of normal bowel movement.) I liked what he said. It was consistent with what other doctors had told me (I went to several to get 'second' and 'third' opinions). I was honest with him and told him that I was trying to pick out my surgeon, and I was there to get his second opinion. One thing he said, that was very interesting, was that I should NOT work with a doctor/surgeon that uses robotics. Hmm...I told him "robotics sounds high-tech and good". He insisted that a robot is a compensation for a surgeon who doesn't know how to do surgery well on his own. Basically, a GREAT and AMAZING surgeon does the work himself.

AT the second office visit: I hit him hard with complex questions I had researched from other medical journals and from feedback from other doctors (Note: Never use Zotdoc or WebMD to get concrete scholarly research. Look beyond those websites and seek your info out from more scholarly sources). I asked him questions like: Do you coagulate endo? Or do you do vaporization to remove it? Can you put my catheder in and out while I'm asleep? He was even willing to just stick it in (after I was asleep) at the beginning of the surgery, empty out the bladder, THEN remove the catheter for the duration of the surgery. He said I didn't need a 'long term cath'. I also asked him what tools he used scissors? Carbon C013 laser? Etc. He 'defended' why he preferred using one over the other. I even asked him if I could have a transvaginal ultrasound to ID if endometriosis was in the ovaries (you can't see this during surgery). He gave the order for me to do that, and I was glad that he allowed me to do it, even though HE didn't think it was a big concern.

Videotape my surgery? I've read that a bad surgeon will instantly shut down your request to have it filmed. A good one will be open to the idea. It's really great if you can get your surgery videotaped because it can help insure the best possible surgery. My doctor was very open and willing to discuss the option of getting the surgery videotaped. He mentioned that it is always a concern to video tape the surgery due to legal reasons (I imagine some people out there love to sue for silly reasons), but that if he found something interesting going on in there, he'd video tape it both for my benefit and for the benefit of his students. I though his response was perfect: He didn't shut down my request to video tape it, he was candid and honest about the legal concerns to him, and he gave me a tentative yes. At that point, I was satisfied that he was both confident in his surgical skills, and that he was a good surgeon.

Day of surgery: Surgery went great. I felt confident with my surgeon, and I knew I was getting the best possible care. The doctor said to me "Well, this is my most informed patient. I commend you for your personal health advocacy." Some doctors feel very threatened by an informed patient, and I LOVE it that he was not.

Hospital: Some hospitals are training hospitals. Those hospitals will have the doctor that you THINK is going to do your surgery come and 'oversee' the surgery while the student does all the work. This often happens with out the patient knowledge. I use the term 'student' loosely. These 'students' are actually real MD doctors who are doing their fellowship...meaning they've completed school, done residency, and now they've opted to do 3-4 more years of hands-on-training so that they can specialize in something like Gyno-Oncology. So they're not a bunch of ding-dong students doing your surgery. But having said that, I still wanted MY hand-picked doctor to do my surgery. The day of the surgery, I looked over my paperwork and saw the statement 'Your doctor ______ will direct the surgery today." To me that was code for 'someone else will do the surgery, and your doctor will pop his head in and check in sometimes. So I brought this up with my doctor before I went into surgery. I showed him what I read and asked, are YOU doing all of the surgery, or are you doing parts, or what? He said that since this was a medical hospital, that is typically what other doctors do. But he was clear that HE always does all his surgeries on his patients. never lets other doctors do anything on his patients. He may allow the student into the room, and talk the student through the process, and the student may even be allowed to do minor things like create the initial incision and hold the little camera while the doctor does the surgery. After I brought this up, he said "Good for you for noticing that, because that does actually happen often in these kinds of hospitals." If you're ever in a similar situation, know that if you specifically request that YOUR DOCTOR does the surgery, you will get that. It's just a matter of making the request.

Results? NO ENDO! But they found that hernia and repaired that. Eeeek! I'm sore today, but I'm glad that I now know that my IC has no connection to Endometriosis.

My point? My point is that we should never go into surgery  blindly trusting that our physician either knows what she/he is doing and that what they are doing is right for your body and your IC. YOU need to be an equal to your doctor.


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