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Doctors and their egos - an update of my day
Nov 11, 2009 06:11PM
- 15 comments
For those of you who don't know, I am an ulcerative colitis survivor who had my colon perforate 16 years ago and then had a J-pouch (rectum sewed out of my small bowel) created and my entire large bowel removed. A huge success! Just recently I started being treated for Lupus. My rheumatologist is in Toronto (I live about 1.5 hours away) and was alarmed at my iron deficient anemia and sent a letter to my GP last April telling him to arrange for a complete GI work up to ensure I was not bleeding internally - a letter I did not know about. My GP chose to ignore it and a couple of times mentioned his concern for my anemia - no offer of tests or even a suggestion of iron pills.
Well the anemia got worse and I started complaining. I had to ask him to test my stools for blood (negative). I started iron pills on my own .I started getting pains and bloating in my intestines (no diarrhea). My GP kept insisting it had something to do with my pouch and put me on heavy duty antibiotics. No change. He talked about getting me into my surgeon at Mt. Sinai but all he did was talk. In the summer I was talking to my rheumatologist who asked in an exhasperated tone as to what is going on with the GI work up he indicated needed doing? He couldn't treat me any further until he could rule out internal bleeding. I got a copy of the letter and went back to my GP. He reluctantly ordered a HIDA scan (negative) and agreed to arranging a referral to the surgeon to get the GI work up done.
The local gastro doc he tried has never responded in all these months. I did get an appointment with my surgeon at Mt. Sinai for today (a 3 month wait). I was sent info on bowel prep and did my fasting/clear fluids yesterday and today. Not easy for someone who is hypoglycemic. My husband took a paid day off work to take me to Toronto for the test.
We got there for the 1:00 appointment. The nurse took me to a room which I knew was not used for procedures. I mentioned that I was having an edoscopy and pouch scope done with sedation today. She said they didn't have that planned and asked if I had done the prep which I said yes. She had me undress and said she'd talk to the doctor. I sat in that room half naked and freezing for an hour and a half until the nurse came back, told me to dress and moved me to the procedure room.
The doctor came in and we discussed my issues. She pointed out that I'd put on some weight since she'd last seen me and we chuckled over that being a result of being healthy due to her surgery. She went ahead and gave me the pouch scope (I screamed) without sedation and announced it healthy. She said she'd write a note to my rheumatologist and GP and advise them that they could arrange the endoscopy locally. Apparently that was beneath her being a colorectal surgeon and all!
I am so mad! I now have to wait probably a few more months to get this done! And today the intestinal issues were acutally bothering me. I was worried that since they coincide with my Lupus flares that it wouldn't be active when I had it checked out but no luck having that done today. Man am I frustrated. I just want someone to tell me I'm not bleeding internally and let me know if this is related to Lupus and treat me for it. I am good at dealing with things when I know what it is but get very scared of the unknown.
After my appointment went for a lousy hamburg and fries I was so hungry. Took over 2 and half hours to get home from Toronto in rush hour. Got wine and chips and dip. Tonight I am self medicating...
Well the anemia got worse and I started complaining. I had to ask him to test my stools for blood (negative). I started iron pills on my own .I started getting pains and bloating in my intestines (no diarrhea). My GP kept insisting it had something to do with my pouch and put me on heavy duty antibiotics. No change. He talked about getting me into my surgeon at Mt. Sinai but all he did was talk. In the summer I was talking to my rheumatologist who asked in an exhasperated tone as to what is going on with the GI work up he indicated needed doing? He couldn't treat me any further until he could rule out internal bleeding. I got a copy of the letter and went back to my GP. He reluctantly ordered a HIDA scan (negative) and agreed to arranging a referral to the surgeon to get the GI work up done.
The local gastro doc he tried has never responded in all these months. I did get an appointment with my surgeon at Mt. Sinai for today (a 3 month wait). I was sent info on bowel prep and did my fasting/clear fluids yesterday and today. Not easy for someone who is hypoglycemic. My husband took a paid day off work to take me to Toronto for the test.
We got there for the 1:00 appointment. The nurse took me to a room which I knew was not used for procedures. I mentioned that I was having an edoscopy and pouch scope done with sedation today. She said they didn't have that planned and asked if I had done the prep which I said yes. She had me undress and said she'd talk to the doctor. I sat in that room half naked and freezing for an hour and a half until the nurse came back, told me to dress and moved me to the procedure room.
The doctor came in and we discussed my issues. She pointed out that I'd put on some weight since she'd last seen me and we chuckled over that being a result of being healthy due to her surgery. She went ahead and gave me the pouch scope (I screamed) without sedation and announced it healthy. She said she'd write a note to my rheumatologist and GP and advise them that they could arrange the endoscopy locally. Apparently that was beneath her being a colorectal surgeon and all!
I am so mad! I now have to wait probably a few more months to get this done! And today the intestinal issues were acutally bothering me. I was worried that since they coincide with my Lupus flares that it wouldn't be active when I had it checked out but no luck having that done today. Man am I frustrated. I just want someone to tell me I'm not bleeding internally and let me know if this is related to Lupus and treat me for it. I am good at dealing with things when I know what it is but get very scared of the unknown.
After my appointment went for a lousy hamburg and fries I was so hungry. Took over 2 and half hours to get home from Toronto in rush hour. Got wine and chips and dip. Tonight I am self medicating...
I think self medicating is a fine plan after the day you had. I was off work today and made some Cocoa Krispie bars with strawberry marshmallows. I'd send you some if I could! What a complete (*&^ your surgeon is! I can't believe you went through the prep for THAT! I suppose the good thing is at least someone else will be doing the endoscopy, even though it won't be for another while. I'm sorry you feel like you have no more answers than you did. Your local GI isn't responding, but do you think it might be a good time to call them and just ask for the work-up? I know it's a long wait period for you, but I'm not so sure I would trust the procedure from today since she seemed to be in a hurry so much that she didn't even sedate you!
Enjoy your self medicating, and then sleep on it. Maybe you'll have more clarity on what to do after a good nights' sleep.
Take care,
Gail
Enjoy your self medicating, and then sleep on it. Maybe you'll have more clarity on what to do after a good nights' sleep.
Take care,
Gail
You are so much more patient than I am. Recently I had to sit around waiting for 40 minutes at the doctor's office and got angry enough that I walked out. Of course that was just for a pap and a discussion about my heart. You had so far to travel that you were their prisoner. Your GI doc sounds so proud of herself and yet she scoped you without meds. I would have done more than scream. I don't usually say bad words but she would have heard a few from me.
I hope you get the next appt. fairly soon for the upper GI. At least you won't have to do bowel prep, just fasting. There doesn't seem to be any bleeding in your GI track or the test would have shown something. I can't imagine why you're so anemic. Any idea what else causes that?
Self medicate with whatever works. For me it's either chocolate or if I'm really down, I fix mashed potatoes. Sounds boring but it's my comfort food - all warm and squishy and buttery.
Sleep well tonight and keep us posted.
Lots of hugs, irene
I hope you get the next appt. fairly soon for the upper GI. At least you won't have to do bowel prep, just fasting. There doesn't seem to be any bleeding in your GI track or the test would have shown something. I can't imagine why you're so anemic. Any idea what else causes that?
Self medicate with whatever works. For me it's either chocolate or if I'm really down, I fix mashed potatoes. Sounds boring but it's my comfort food - all warm and squishy and buttery.
Sleep well tonight and keep us posted.
Lots of hugs, irene
Gail, those bars sound so good! I didn't have my own local GI (guy I used to have retired and my care has been under my surgeon in Toronto) so my GP needs to do a referral to one of the locals. Here you can't see a specialist without the referral. I've kept my temper in tact with my GP and time for him to know what is really on my mind. He owes me.
Mashed potatoes are a comfort food for me too Irene. I personally feel that my anemia is due to my extremely heavy and getting closer together periods. My doctors need to rule out everything else before assuming that it is. I am more worried about the pain and swelling in my intestines and that I could have vasculitis there. I'm not keen on any more surgery in that area should it result in an emergency. Otherwise, the Lupus has been getting under control and I'm doing so much better. Yes, I felt like a hostage and was quite humiliated today. I'm very angry.
Mashed potatoes are a comfort food for me too Irene. I personally feel that my anemia is due to my extremely heavy and getting closer together periods. My doctors need to rule out everything else before assuming that it is. I am more worried about the pain and swelling in my intestines and that I could have vasculitis there. I'm not keen on any more surgery in that area should it result in an emergency. Otherwise, the Lupus has been getting under control and I'm doing so much better. Yes, I felt like a hostage and was quite humiliated today. I'm very angry.
Oh Trudie, I'm so sorry this happened to you today! I didn't realize or see this journal until you commented on mine. I'm so sorry about all of this! How unfair. I would be upset too! I sure hope you get that endoscopy done soon. Wine sounds good to me, too, after a rough week for me. I think I'll join you! *Hugs and blessings*
April
April
Trudie .. so sorry for your day yesterday. After doing that prep, I had better get the whole 9 yards or I would be screaming. Having lived in Canada for 7 years, I realize the referral business. Luckily, I was there when I was pregnant with my twins (30 years ago), so a referral to an OB/GYN was not a problem. Sometimes I'd see my GP and OB in same day. Things have changed, I fear. My friend just had a hysterectomy done with the DaVinci (robotic) and her anemia issues have disappeared. Good luck .. will keep you in my prayers.
Judy
Judy
Hi Trudie i hope everything works out well for you after all the awful things you have had to endure ,what a wonderful lady you are having time to give advice to others with all the problems you have yourself Thankyou and GodBless Shharizad
I wish I could say what I really would want to.. just one word I have that is a mild version.... i d i o t s... Sorry you had to endure such treatment.
Trudie,
I'm so sorry. I think you already know what I would do. Go to all those stupid doctors and give them a rectal exam with your foot no medication and see how they like it and don't forget your GP. What were they thinking scoping without medication. Then go home, poor yourself a DiSaronno on the rocks and giant piece of cake, your choice of flavors. I'll probably join you on my end with the DiSaronno. That remineds me, I'm almost out. I need to get some to make my fudge. It requires a 1/4 cup. Well, really only an 1/8 of a cup, I drink the rest. I'm here if you want to talk or scream or something.
Love your drinking bud. Lisa
I'm so sorry. I think you already know what I would do. Go to all those stupid doctors and give them a rectal exam with your foot no medication and see how they like it and don't forget your GP. What were they thinking scoping without medication. Then go home, poor yourself a DiSaronno on the rocks and giant piece of cake, your choice of flavors. I'll probably join you on my end with the DiSaronno. That remineds me, I'm almost out. I need to get some to make my fudge. It requires a 1/4 cup. Well, really only an 1/8 of a cup, I drink the rest. I'm here if you want to talk or scream or something.
Love your drinking bud. Lisa
Trudie, so sorry of your ongoing problem. I don't know why the drs seem to be so lacking in care of patients. It is about insurance now. Not the patients. ANd that is funny, because the patients are the ones that pay for the insurance.
this is indicitive of our healthcare to come. And even worse for seniors. I don't understand why people don't want to believe that.
this is indicitive of our healthcare to come. And even worse for seniors. I don't understand why people don't want to believe that.
I am in Canada so it is not about insurance here. The wait is due to not having enough specialists and therefore long waits and not being able to go elsewhere once you get a doctor and having doctors with too big off egos to put the patient first.
I just happened to notice your journal. Wow. You sure have been put through the mill. I'm running into the same sort of lack of communication with my mother's care. She IS bleeding in her small intestine and may need a resection. She's been transfused with 2 to 3 units of blood every couple of weeks since late March.
Since your stool tests showed no sign of blood, you aren't bleeding internally so I don't understand why they put you through that awful scope. I doubt oral iron will do you much good for the anemia. You may not have enough intestine left to fully absorb it, and if you're seriously low, you need more of it and faster than pills can provide. If you can stand seeing another doctor, I hope you'll consult with a hemotologist. They can give you an IV iron infusion that will last you quite a long time, as well as look into any other odd blood issues that may be going on.
Best of luck to you, and hang in there! :-)
Since your stool tests showed no sign of blood, you aren't bleeding internally so I don't understand why they put you through that awful scope. I doubt oral iron will do you much good for the anemia. You may not have enough intestine left to fully absorb it, and if you're seriously low, you need more of it and faster than pills can provide. If you can stand seeing another doctor, I hope you'll consult with a hemotologist. They can give you an IV iron infusion that will last you quite a long time, as well as look into any other odd blood issues that may be going on.
Best of luck to you, and hang in there! :-)
I've been there. The cold wait in the waiting room. The egotistic doctors. I had a doctor tell me once they overbook because they know you'll wait. UUUGGGG!
Love and Prayers Trudie, you have both from me.
Love and Prayers Trudie, you have both from me.
oh, my Trudie, I just read this journal. I am appalled that your doctor would do that without sedation, that is inhumane and how did they not know you were there for the endoscopy and also, why aren't they doing a colonoscopy or did you have that recently? I can't remember. Sheesh! I am beyond upset with your doctors. There is no call for this and for the long wait you have had on everything. Let me know what your next step is. You did all that for nothing, shame on them!!!
I am with Lisa, DiSaronno on the rocks, yummy! Forget the cake, have that for breakfast tomorrow!!! I want to scream for you!!
Just got home from my day with the gastro doc. Will post a journal entry as soon as I can. Did not go well either. I hate doctors!
Love you!
Colleen
I am with Lisa, DiSaronno on the rocks, yummy! Forget the cake, have that for breakfast tomorrow!!! I want to scream for you!!
Just got home from my day with the gastro doc. Will post a journal entry as soon as I can. Did not go well either. I hate doctors!
Love you!
Colleen
I can't have a colonoscopy since I don't have a large bowel so they use a different scope and just go in a few inches to check my pouch. That is all she did. I lucked out today. I called my GP's office and got to talk to the nice nurse (they also have a mean nurse and a stupid one) and felt so good for her to commiserate with me. Just got a call back with an appointment with a local gastro to discuss my situation and my GP says for me to come in and talk to him. Whew!
Hey TrudieC;
Sorry to hear you had such a bad day. You must have passed by my apt on your way into Toronto.
I know all the good specialist are down there. My GP gave me the number of a psyciatrist that is suppose to be one of the best, but of course he is downtown, and I hate driving anywhere outside of my comfort zone.
Sorry to hear that you had such a hard time at Mt Sinai, I always found it to be a good hospital, but I agree that some of the best surgeons and Dr's are prima donna's, and yes, doing referrals etc is for their staff not them.
If you were bleeding inside it would show in your stool, at least that is what I found when I have stomach issues. I have had 4 colonoscopy's so I can relate to the prep etc. and it is no fun, especially when they poke and prode you.
Well have a good evening but take it easy because you have just put grease in your stomach (hamburger), and if you drink, it is going to aggrevate the symptoms, but then you wont know until tomorrow. LOL.
Sorry to hear you had such a bad day. You must have passed by my apt on your way into Toronto.
I know all the good specialist are down there. My GP gave me the number of a psyciatrist that is suppose to be one of the best, but of course he is downtown, and I hate driving anywhere outside of my comfort zone.
Sorry to hear that you had such a hard time at Mt Sinai, I always found it to be a good hospital, but I agree that some of the best surgeons and Dr's are prima donna's, and yes, doing referrals etc is for their staff not them.
If you were bleeding inside it would show in your stool, at least that is what I found when I have stomach issues. I have had 4 colonoscopy's so I can relate to the prep etc. and it is no fun, especially when they poke and prode you.
Well have a good evening but take it easy because you have just put grease in your stomach (hamburger), and if you drink, it is going to aggrevate the symptoms, but then you wont know until tomorrow. LOL.
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