I don't want any more tests!

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StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/4/2008 11:55 PM (GMT -6)   
I've been away from the forum for a couple of months, laying low, adjusting to my newest stoma Stella (as in Stellar, but female and sassy). We definitely have a love/hate relationship. Now my gyn *i have a colostomy due to reproductive issues* is asking when I plan to start trying for a child and my colorectal surgeon has me scheduled for 5 or 6 different tests to see if they can figure out why my rectum doesn't work. I have to self-catheter to urinate, though I am getting more sensation so there is confirmed nerve damage at play.

I don't want to take these tests. REally, i don't. Anal mnenometry, defetogram (they fill your butt with day-glo paste, sit you on a port-o-potty and take x-rays!). My butt doesn't work, period. I had an ileostomy, it was reversed, i struggled through 90 days without an ostomy, stopped eating and had an emergency colostomy for Christmas 07. Is it unreasonable for me to ask for the tests to be delayed for a couple of months while I adjust some more to a. returning to work b. weighing my reproductive options (of all things) c. rebuild my physical strength d. rebuild my mental and emotional resources...?

My surgeons are so gung-ho. "let's fix camille!" I am quite weary of being fixed. Each surgery (6 major, one minor for 2007) takes a tremendous emotional toll on me and re-entering the world is also complicated. I just feel as though more is being thrown at me than I care to deal with/am able to deal with. I'm starting to have problems getting to sleep and I don't want to wake up until well-past noon. I'm not depressed or listless, I'm just ambivalent about the medical stuff right now.

I guess I can call my dad and tell him we're getting started again. I'd just rather not do it until June or something like that. Summertime when it's fun to be outside and the sunlight warms away the cold of the x-ray lab. Am I bordering crazy on this, how do I tell my docs and is this unreasonable?

thanks!

smurf

lbw
Regular Member


Date Joined Apr 2007
Total Posts : 24
   Posted 3/5/2008 1:22 AM (GMT -6)   

Hi StomaGrrl'

I'm sorry you have had to through all this. I know what you mean about "gung-ho" surgeons, just about every surgeon I have met is like that. They seem to just want to slice and dice every chance they get. It seems to me like they are trying to prove something among themselves by trying to "fix" things when they really have no idea. They forget that we are human beings with feelings and emotions and surgery is not easy physically or emotionally nor are all those horrible tests. Most really don't have any empathy.

Just remember it is your body and they cannot make you do anything you don't want to do. If you don't want to do the tests or you want to put them off a few months maybe you can take your dad with you for support so you wont feel so pressured when you tell them. They probably won't try to bully you into things if someone is with you. Hope this helps.

Luke


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/5/2008 1:47 AM (GMT -6)   
Camille,
I agree with Luke. It's your body, and they can't make you do anything that you aren't ready to do. If these tests are to find out why your rectum doesn't work, and you have a colostomy, then these tests can wait.

I would call your doctor's office and tell them that you want to cancel the tests for now, but will re-schedule at a time that is better for you. I've done that before, and it works. Keep in mind that they work for you and have to obey your wishes.

Good luck!
:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 3/5/2008 10:13 AM (GMT -6)   
I know that feeling all too well! First and foremost, this is your body and nobody can force you to do anything you're not comfortable with. Don't be afraid to speak up. We have to be our best advocates.

My surgeon wanted me to go for the manomatry testing in September and I've probably called and cancelled 2-3 times. The way he talked, it seemed like he wanted me to get the testing and then schedule the reversal ASAP just to get it done and over with. But I'm just not ready to walk back into that stuff yet. I want to enjoy my life and not be stuck in the bathroom all day, every day for a year. Too much time has been lost already, I don't want to lose anymore. I've already made the decision to add on to our family before a reversal, so I'm in no hurry to find out if I'm even a candidate. As far as I'm concerned, I'll follow through with the testing when I'm physically and emotionally ready to walk down that road.

StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/5/2008 10:33 AM (GMT -6)   
Thanks guys! Ash83 I really appreciate your input (it's especially heartening because you're weighing one of the options i'm contemplating at this point, though I appreciate everyone taking the time to respond to me). I know I can carry a child with the colostomy and I'm very happy with my quality of life with an ostomy - it's 150% better than anything I've had for the past 15 years. I enjoyed the whole "medical vacation for a year" thing but I don't see it being viable for another whole year right now. maybe when i turn 30. :)

Guys, my fiancee is a surgeon so I felt kind of bad for giving the impression that my surgeons are frothing at the mouth to cut me up. They genuinely want to see me fully recovered but there is a gap between what is fully recovered in my opinion and what is fully recovered in their opinion. The standard is always Normal body function paired with excellent health. It is difficult for them to accept less and, honestly, I wouldn't want a surgeon who was content to shoot for less. Someone has as a tag (and i can't recall who) that they have excellent health after struggling with crohns for 10 years. I'm super content to have excellent health. For the first time EVER I didn't get the flu when everyone around me was dropping like flies. It was amazing. I've never had normal organ function as an adult, so the ostomy isn't weird for me.

I think I will take everyone's advice and call my colorectacl doctor and explain how I feel. He's a straightforward guy and we've had a year of building rapport. He knows I'm dismayed by the idea of the tests but he would be able to tell me if time is really of the essence at this point or if I can hang out a while longer.

Does anyone else have a double-barrel colostomy? Mine is and he says he did it that way so he could take it down in the office instead of taking me back to the O.R. Just wondering.

Thanks a million guys. I needed to hear "you're not crazy for wanting to wait." Now I feel stronger to talk to my doctor and not get anal anything for a while. LOL.

camille
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)

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