Heading Home Via the Casinos ....

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CrohnieToo
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Date Joined May 2003
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   Posted 4/18/2008 7:09 AM (GMT -7)   
My last appointment is at 11:30 AM today w/the Mayo colorectal surgeon. Then we head home thru Michigan's UP so my neighbor can hit all the casinos there on the way home. Joy, joy! Ah, but I have several good books to read so all is not lost.
 
Don't ask me how in the devil a huge distention of the small bowel has occurred above a high grade partial obstruction w/o my having more symptoms and discomfort than I have had!!!! Its a good thing Dr Tremaine showed me the CTE images or I'd never buy the story!!! There is also another area further down the small intestine that most likely will do well w/just a strictureplasty. No signs of problems at the ICV.
 
Absolutely LOVED the gyn/onco surgeon. Dr Mauriani. Very pleasant, a good listener, seems willing to respect the patient's opinions and decisions. Explains things well. I was surprised that he wasn't considering a full hysterectomy, that he felt removing both ovaries w/their big and little cysts was all that was necessary. Which is FINE by me!!! AND he does do laparoscopy but prefers open abdomen for getting a good look at EVERYTHING which fits my philosophy exactly.
 
If I were willing I could have seen the colorectal surgeon Monday and had the surgery Tuesday. Ha! Yeah, sure. Dr Tremaine still hasn't got me figured out yet obviously. The CTE images convinced me to at least talk to and listen to the colorectal surgeon. But the symptoms still aren't bad enough, I'm still not sick enough and the ovarian cyst is causing no symptoms .... so .... I'm getting my ducks all lined up in a row for when they are needed. Dr Mariani is no 2-4 year Mayo wonder. He's on deck at Mayo for the long haul. I told Dr Tremaine I would only talk to a colorectal surgeon who was on deck at Mayo for the long haul as well so we shall see.
 
I liked the ob/gyn I saw. Dr Cotter. But she will be leaving soon. Her husband is also a doctor at Mayo and he is moving on so she is moving on w/him, of course.
 
I sure do miss the old Rochester, MN tho. The outsiders and chains have taken over the town. There's no such thing as good food at a reasonable price anywhere near the clinic anymore at all. But Mayo itself is still the EPITOME of efficiency, the doctors and staff all a pleasure to see and work with. If you've gotta be sick this is the place to be! And if you aren't sick but still in need of top of the line medical care or diagnosis there's no better place to be.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 4/18/2008 8:13:39 AM (GMT-6)


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 4/18/2008 11:56 AM (GMT -7)   
Hey C2, I'm so glad you had such great appointments! Though not glad to hear about your obstruction. How relieving it is to know that you've got such competent, wonderful docs working on it, though. Now go win a million dollars (and if you could send about a quarter of that to me to cover my loans, I'd appreciate it, thanks very much)!
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Matthew
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Date Joined Oct 2004
Total Posts : 3932
   Posted 4/18/2008 1:25 PM (GMT -7)   
C2,
I hadn't realized you were having such problems. I hope all goes well. Oh, & if I were you, I'd hit those casinos myself! LOL

Matthew

Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 4/19/2008 5:36 PM (GMT -7)   
Glad that you had some doc's you liked. Sorry that you are going through this. Glad to hear you have knowledgeable good docs on your side that helps. I love reading too and would pick a book anyday over the Casinos. Just throw your money out the window while you drive. LOL

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 4/20/2008 10:25 AM (GMT -7)   

Well, I've had time to "digest" the results of my trip to Mayo. I asked for and they gave me a CD of the CT Enterography images. Ahhh, the difference a skilled tech and radiologist makes!!! Or maybe I should say a Crohn's savvy CTE tech and radiologist make.

I dug out the CD w/last year's local CTE, interestingly almost a year to the day from this year's CTE at Mayo. WHAT A DIFFERENCE!

However, the BIG thing was the DISTENTION above that partial obstruction. As always the darn barium or whatever they use for the CTE took its time moving thru so I've had some bloating and discomfort since this CTE until today. Back to normal today. Last night looking at the two CTE image series I almost had myself talked into giving some SERIOUS consideration of scheduling the surgery as soon as I could get up the courage.

D*mn! I HATE going under anesthetic (and sedation too). I just do NOT like not knowing what is going on, having no say in what they do, having to rely on and trust some surgeon to make the decisions. I mean I made it clear I didn't want them touching the ICV area and the surgeon assurred me they don't like to remove 1 mm more than they absolutely HAVE to - and it didn't look they would need to do ANYTHING to the ICV area - BUT - it all depends on the blood supply to the area. If there is insufficient blood supply, even tho the ICV is healthy they would HAVE to resect it. THAT is what convinced me to WAIT, to push my luck and just bide my time until I felt sick enough that surgery was welcome. If I remember correctly he said the odds of that was like 3% or less. But I still don't like those odds.

And truthfully, the way they do surgery now where you just show up at the hospital the morning of surgery ...... I don't think I could do it. My other surgeries I was hospitalized before the surgery and the night before surgery when I panicked and started to walk out they were able to sedate me enough to stay. I mean I actually panicked so much I created quite a scene each time. And I was SICK and in PAIN prior to 2 of the surgeries, the other was an elective. And I was blackmailed into that one. I argued w/the surgeon for a year. He insisted on doing an appendectomy when he did the tubal ligation I wanted. I fought w/him for that solid year before giving in.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/20/2008 4:14 PM (GMT -7)   
Why wouldn't you want your appendix cut out if you are already chopped open? It just makes sense rather than going back in if it acts up later in life.

Now as far as being afraid of sedation, is it possible you could have someone with you with a medical power of attorney and make it clear this person is to be asked to consent to anything you would be asked if you were awake? When I worked corrections I had a girl having knee surgery that was petrified that she would be abused while sedated. I don't really know what happened in her past but she was sure it would happen. After talking with her doctors they had me scrub in and stay there with her until they made the first cut. I stood right outside the door the rest of the time. As soon as they were done I was back in with her. Part of that had to do with her requiring handcuffs when conscious but a lot of it was because of her fears. Maybe your doctor would allow you someone to do the same and that if they have any judgment calls to ask your go to.

As far as panicking, I had a panic attack in the ER after getting Compuzine. I was begging my husband to take out my IV so that we could leave. I hadn't even seen the doctor yet and when he came in I announced that we were leaving and he didn't have to examine me. They figured out my reaction to the compuzine quick and put me out with Ativan and Benadryl. But I guess I made a nice little scene until I was sedated! I did end up going home without X-rays. I would only consent to a blood test lol. I was pretty messed up from the compuzine.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/20/2008 5:02 PM (GMT -7)   
Simple. I subscribe FIRMLY to the "if it ain't broke, don't fit it" mind set. As it turns out its quite likely removing the appendix did "protect" my ICV when I developed Crohn's disease some 5-6 years later as my Crohn's struck first in the mid-ileum, not at the ICV as is so common. I was blessed w/a 20 year remission of Crohn's disease after my resection of 18" that mid-ileum in 1978.

[b]Thank you[/b] for your suggestion of having an "advocate" standing by. But it isn't fear of "abuse", it is totally a lack of trust of the medical profession. And those who would be able to advocate for me would all "cave in" to whatever the doctor decided anyway. To say nothing of the fact that no surgeon is gonna walk outta the operating room to tell the "advocate" we've gotta do x or y which we didn't expect or plan on doing.
 
I've already told this Mayo surgeon that it is "my" ICV and it is "my" choice to risk needing another resection in a year or so if needed for the ICV. Unfortunately, I can understand what he is saying about the blood supply to the area. It makes sense even to me. And despite such a low risk factor for that I am NOT at this point willing to take that risk. My body, my decision. No one to blame but me if I'm wrong. I can live w/that.
 
This surgeon made the mistake of telling me that's he's known so many crohnies who didn't remember or realize what it feels like to NOT be sick they've been sick so long. I KNOW what it feels like to feel "normal". I had a 20 year remission, remember? So far, the symptoms I've been encountering have been mild, intermittent and have not in anyway impacted my life style and activities or the things I want to do and do do.
 
I think part of it is that "they" didn't stop to think that my resection was 30 years ago this past February. It was a side to end resection w/the loop left in, the "Eisenhower surgery". That alone would account for the "distention" when filled w/barium or other "matter". In addition, this CTE I drank the 3 bottles of "barium" or whatever in 15 -20 minute intervals and then the CTE was done. Last year, locally, I had a much longer span between the barium, don't remember that I had to drink that many of them and then had to drink water before leaving home and immediately upon arriving at the imaging facility prior to the CTE. That also would account for less distension on those images than on the current images.
 
I'm still thinking this thru as I'm sure the "smartest" thing to do is to have the surgery now - but I'm not always known for doing the "smartest" thing. I've had 10 good years since they first recommended surgery - and I've not regretted a minute of it ... so ..... we shall see.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 4/20/2008 6:18:53 PM (GMT-6)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/20/2008 5:13 PM (GMT -7)   
Hey CT - looks like you have seriously thought this all out! I hope you didn't think I was implying you were afraid of abuse. I got your lack of mistrust for the medical profession. I was just trying to use an example for a suggestion. I hear you though... besides my husband there is really no one else I would trust to make decisions on my behalf. Who (besides the patient) is going to tell a doctor they don't think something is necessary? Have you ever found a surgeon you do feel you can trust? I can't imagine how scary it must be to not trust the person operating on you. So at this point you are holding off on surgery? I have been holding off on GERD surgery since age 13. Little did they know I probably had crohns. It may end up becoming a necessity at that point but until them I am saying thanks but no thanks.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/20/2008 6:21 PM (GMT -7)   
I didn't for a minute think that you were implying I was worried about "abuse". I understood that that was the situation w/the person you advocated for.
 
I instinctively liked the gyn onco, Dr Mariani. I've found that my instincts are more trust worthy than my "common sense" and it was an instinctive confidence I felt immediately w/him. I was so darn nervous about even agreeing to TALK to a surgeon I babbled like a brook and couldn't shut up. Yet, in no time I felt completely comfortable w/him. That takes care of the ovarian cyst issue. I was hoping I'd run into that same "instinctive" confidence in the colorectal but it didn't happen. I didn't "distrust" or dislike him, I just didn't feel that instinctive "okay" either.
 
Nope. Have NEVER met a doctor, much less a surgeon that I "trusted". Some I have a good level of confidence in but "trust", when it comes to the medical profession? There is no such word as trust in my vocabulary.
 
Yup, I"m holding off on the surgery for now. But not done thinking it thru either. Most likely I'll just continue to rely on the symptoms when to agree to the surgery. Thanks, Fitzy!! Really. I wish you continued good luck w/the GERD. NO ONE knows better than "we" do when "we" are ready for surgery and agreeable to it.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/20/2008 6:32 PM (GMT -7)   
Hey, Sarita, IF I remember to buy a lotto ticket AND IF I win that million, you're welcome to a quarter of it for those student loans and to get you thru university. What the hey, its "found money", easy come, easy go.

And, Matthew, thank you. But ... I can think of lots more fun ways for me to spend money than the casinos. I hate the noise, those machines are irritating and the lights give me kind of a "confused" feeling I don't like.

Hey, Crohn'sNMe, ain't it the truth tho? Burning money at the casinos is just like throwing it out the car window - and at least you get a burst of fresh air w/the car window open whilst tossing the money out! Richard North Patterson's book, "The Race" was really good. And quite timely. A couple of the other books were pretty good reading too, but "The Last Cato" was too slow, too .... just a bit of a "rip-off" on "The DaVinci Code". Grisham's "The Appeal" was good, of course. Haven't read a Grisham novel that wasn't a good to excellent read.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/20/2008 6:43 PM (GMT -7)   
C2 maybe we can hold off our surgeries until Sarita is a surgeon!! Sarita- I'll allow you as many bathroom breaks as you need during my surgery as long as you promise to wash your hands after!
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/20/2008 6:44 PM (GMT -7)   
I'm glad that you are home. I'm sorry that I didn't get in touch with you before you left...it's been crazy....my Grandma died, and U of M believes my oldest has celiac disease....so, we have been taking it one day at a time. We will get together for lunch even if we have to wait until June, when I'm done teaching.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/20/2008 7:25 PM (GMT -7)   
Too true. and full of cig smoke too! Which I am allergic to..
Still, I'd give it a shot. well maybe. I never did the last time I lived in Shreveport, La. though..

Matthew

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/20/2008 7:40 PM (GMT -7)   
Fitzy, you are a stitch! I'm game, tho. Sarita, take your time becoming a surgeon!

So, Matthew, you had your chance whilst in Shreveport and you blew it.

CrohnieMom, darn, I'm sorry to hear about your grandma. And even more sorry to hear that U of M is considering a Celiac Dx for your daughter. That REALLY sucks! Pick on me is one thing, but, dang, pick on my kids ..... Man! You would think we lived states away from each other, wouldn't you, as much trouble as we have getting together for lunch?
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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