Tuesday, April 7, 2009

The Best of the Worst

This is going to be a very long post so bear with me. So as you all know I had two big tests this week. These were basically to test what, if any, tone I have left in my sphincter. I do have to warn you and apologize that the following will probably leave you with visuals you wish you didn't have, but for posterity and for humors sake it has to be done. I will not be offended if you choose not to read, skip to the last paragraph for the summary.

Yesterday's test was the anal ultrasound. It was at the same office I go to for all of my IBD and sphincter related appointments and they are really recognizing me now. This test was conducted by a young woman colo-rectal surgeon, probably 35, and her fellow a young woman about my age. They immediately helped me relax a bit, talking to people with my mind set. So they explained the procedure, rectal exam and then stick the ultrasound probe in to take some pictures -- so glamorous. They were so gentile and kind and talked to me like a real person not an idiot, they felt so bad that my poor bum is so sore and red. They were surprised at how "wide open" my sphincter is. I could hear them trying to discuss what they were seeing without alarming me. 

Once the exam was done, it just took about 10 minutes, they then spent about 40 minutes talking with me about what they saw. They printed out the pics from the ultrasound machine, just like you would get if you were having a baby. So there we sat looking at my "baby" sphincter. They explained that my inner sphincter (apparently this is our involuntary sphincter that holds "stuff" in and then sends the signal that it's time to make your way to the bathroom) is not functioning at all. And my outer sphincter (the one that you can squeeze) although still in a circle form, is weak all around. It was explained that there is no way to fix the inner sphincter and fixing the outer sphincter would only maybe make things marginally better if at all, which in my case may not be enough to improve my quality of life. A sphincteroplasty is usually done on people who's sphincter has been severed due to childbirth or trauma and they can go in and just reattach the two open ends. I asked about an artificial sphincter, and they said it has about a 50% failure rate and the research on how long they last and function isn't good. 

Basically one's sphincter quality is measured on a scale from 0-20, 0 being the best and 20 being the worst. And guess who is the best of the worst...ME. I'm a 20! You all know how I love to be the best at things, it's like that Friends episode when Chandler told Monica that she was the best worst massage giver. Anyway, bottom line is they were going to take the pics and info back to the surgeon I saw last week. I gathered he was their boss and he had talked to them about me earlier in the am. They are going to get back to me, but it looks like we could go with the there is nothing to lose and "try" a sphincteroplasty but it wouldn't fix it and the sphincter would still be open or cut our losses now and move forward to a permanent ostomy of some sort. Both not that attractive of options but we'll see if that changes once they've all put their heads together. 

Now on to today's experience. Get ready to laugh, or at least I hope you do, because quite honestly I can't believe this test actually exists and that somebody thought it up; that I actually had to do this; and that the Dr. I had was as awesome and cute in a British grandpa sort of way as he was.

Today I had the fecal defecography, basically the poop in front of others test. The gist is they insert a thick paste like substance up the bum and then move you to a commode and Xray you why you sit, cough and poop. It was SO fun, ok it was just more uncomfortable mentally, but at this point I had to laugh more than anything! 

When I got there I got into my gown and had to drink 6oz of the lovely Xray Barium, nasty! I waited 30 minutes and then they took me to the Xray room. Due to my "unusual" anatomy, they had me do a regular Xray first to see how my pouch looked and if the barium had made it to the pouch yet. After this Xray is when the cute, 70-something, British dr came in. As soon as he started talking I was immediately at ease, maybe it's because my godfather who I love so much has a very soothing English accent or maybe it was because the Dr reminded me of a jollier version of Len Goodman, the judge on Dancing with the Stars -- who knows but I knew this would make for a good story later! Now get your English accent in your mind and picture this:

British Dr. Man -- "Now dear, due to your special anatomy, I'm a bit leery of putting the paste up your bum. I want to make sure we do this the right way, what do you think about maybe putting some liquid up there, do you think it might stay put. 

Me (boring American voice) -- "No it will surely leak right out."

Dr.: "Oh well that's no good now is it. Ok darling, well we'll just put a little paste in your pouch and go from there, I think that would be the most elegant way to do. Alright then?"

Me: "Ok." Rolling over on my left side and thinking in my head you are too cute and there is nothing elegant about what is about to happen!

Dr. behind the curtain with a little bit of force: "I need a female technician here, now!"

Dr. to the Dr. he was training (I know there is always an entourage during these lovely procedures): "The technician should stand in front of this lovely woman so she doesn't feel so vulnerable." 

He then patted my leg and assured me that the doors were locked and that although the fire Marshall didn't allow a door to the entry to the tech room that the drape was pulled and that everyone was educated on the privacy of this procedure. 

Dr: "Ok dear, don't worry this won't be that bad." He lifts the gowns. "Oh no this is just terrible, your poor bum, well this must be a miserable existence for you then now isn't it. Have you tried Balnaol cream or cetaphil soap, that will really help soothe you."

Me: "No I haven't and yes actually it really is."

Dr.: "We need to help you figure this out, I hate that you have to live this way. Ok going to the digital exam now...oh wow yes the sphincter is wide open." Wow that seems to be the phrase of the week. "Ok we are going to use a real caulking gun to insert the paste because it's about the thickness of toothpaste. And then I know this won't feel good we are going to have to put some of the paste on your crack." Yes he said he needed to put it on my crack and with my butt exposed to everyone, me the technician and the other dr were trying so hard not to laugh. 

Dr: "Ok dear, time to move to the Xray commode. Don't worry if it falls out whilst you are walking we'll just wipe it off and be on with it.:

Now here's where the real humor comes in. I understand that the above was a more of you had to be there type thing but it was the back story. Hang in there the punch line is coming. 

I get up on the commode thing, they raise it up and position the Xray and move the screen so I can see the pictures to. The paste starts slipping out immediately and he reassures me it's ok. Then he tells me to squeeze and I do and you can actually see it squeeze a little bit.

Dr. excitedly: "Well there you go, see that, that's jolly good. You have a little bit of squeeze there. Now turn your head and cough." No I was not getting a prostate exam and yes when coughing stuff came flying out. 

Dr, trying to keep it light and make me more comfortable, in a louder more excited voice still with the full accent. "Ok girl now poop it out. Don't mind us two strange men, just do your thing. Take a big S***. There you go, good job. Push it out."

Snicker, snicker from the peanut gallery me included. Seriously me laughing was making it very hard to complete the "task" at hand. 

Dr.: "Oh come on, I'm just trying to help. It's alright girl you can do it. Looks like you've developed some sort of muscle spasm that inhibits you from evacuating your pouch completely. Probably a mechanism to keep things in since the sphincter is so poor." 

Me, trying to keep it together.: "Ok, I see, thanks."

Dr.: "We are done now dear. When they did the ultrasound yesterday did they say the muscle was severed?"

Me: "No, she said it was still a circle just week."

Dr., looking very stumped hand on chin: "Hmm, well that's not good. Ok, well you get yourself cleaned up, get dressed and go home. Take care of your poor bum, use a hair dryer to dry the area. And I'll spend the next while trying to figure out what to say about all of this. This truly is dreadful and perplexing. Good luck to you darling." Gives me that cute, loving, oh you poor dear look. Shakes my hand and walks away.

Ok so that was way funnier when I was going through it and then when I actually got to say it out loud to my mom and the hubby. I'm afraid it's lost a bit in translation, but I hope you got a least a chuckle, a smile even. Ok, maybe you just winced and felt sick to your stomach...sorry. I have a sick sense of humor, I'm a cops daughter for goodness sake!

All in all, I really felt like I was part of an SNL skit, you know like their "Oops I crapped my pants" sketch? The whole thing, me laying there and then pooping on command, the British old dr, the poor dr just trying to learn and keep a straight/professional face and the lovely woman technician there to help me feel "less" vulnerable. Oh you've got to laugh, can't believe this is my life. 

I have another test this Thursday and then a follow up appt with Sphincter man that afternoon. Hopefully by then, we'll discuss the last two days and know more about our options. What we do know is that there are big decisions to be made and a lot to talk about, research, etc. We are still in shock, can't believe any of this is real. 

We want to thank everyone for their outpouring of support over the last week. Your prayers, anger, love, etc has meant so much. Thank you for understanding all the feelings we are having and what a hard road we have ahead. Without you, making these decisions would be that much harder. 


Jen Hodson said...

You are one funny chick! I was cracking up during the entire post. Hopefully the Balnaol cream or Cetaphil soap helps with the bum. You do have a long hard road ahead of you but you will make the best decision for you. You are amazing Al and you are always in my thoughts and prays! Love ya lots.

Summa G said...

Love your sense of humor! :) You never EVER cease to amaze me. You may have a long, hard road ahead of you, but you have a whole lotta people who will be right with you the entire way (like me)! As always...anything you need...just ask. Love you.

M. said...

I'm probably going to hell for laughing so hard, but you definately have a way of making the experiance real for all of us. Your poor, poor bum. Marilee

J@yeJ said...

Okay..I was totally laughing and when I get my test done...I hope it's just as amuzing! I will let you know all about my story and Dr. British on May 26th...whoooohooo can't wait!Al...just wanting you to know that I am one of your biggest cheerleaders and it going to be a long road but in the end your quality of life is going to be sooo much better! Love you!

todd storch said...

lol, c'mon darling take a sh!t... HAHA. I can't wait to tell Amy about this ;-)