Thursday, April 2, 2009

Why?

We just got back from the appointment with the surgeon. He was awesome, but what he had to say was not. The good part was that he already knew all about me from sphincter man so we didn't have a lot of catching up to do and he had a great personality and we could tell he knew his stuff.

But, it took him all of about 10 seconds of just looking between my cheeks to see that, as he said, "my sphincter is wide open." I guess that means there is absolutely no tone and that's why stuff just falls right out. He said we'd have a better idea of the extent of the damage after the anal ultrasound on Monday and the fecal defecography on Tuesday. But he said it doesn't look good. If it had just been damage in one area we would have more treatment options, but from what he could tell the damage is all over. So basically we can try biofeedback (they stick a probe up my butt that projects the tone and I look at screen that shows the stimulation and it may help me visualize and exercise the muscle.) If this doesn't work then it's a permanent ostomy. He said the other surgical option is risky and doesn't have good results.  

As you can imagine this is not the news we were hoping for. I'm very angry, sad and frustrated. I can't even begin to express my anger towards my original surgeon for his mistake and more importantly how he treated me after I continually told him something wasn't right. We will be figuring out who we need to talk to, to make sure all of this is known to my insurance and my health care group.

Of course we don't know for sure yet what's going to happen, next week we'll have the final answers, we are pretty sure we know what the outcome is going to be. It's not fun, it's not easy, it's not what we wanted to even have to deal with. And frankly it's just not fair! I've done everything I was ever asked and more, I've fought so hard to take care of myself and get healthy and I've been beaten down continually along the way, one blow after another. And although there is no answer or really good in asking, I wonder why... why me, why did this go so wrong?

So many things have been taken away from me/us during the aftermath of the surgery that saved my life -- how ironic. We knew there were risks, but it sucks that I'm the one that has to deal with them. My sphincter was most likely accidentally damaged during my first surgery. I have been dealing with this for a year now, with my original surgeon continually telling me, this was normal, this takes time, making me feel like I was a wimp or worse a mental case. He didn't take the time to really investigate all of this, he sent me to a second opinion with someone just as arrogant who wrote me off without a second thought. 

I've also learned in the last few months, that due to my surgery and my subsequent complications coupled with my overall health issues, I can't safely carry a baby, I'm not a good oven (if you know me, you know how devastating this is. And yes there are other options and we have already researched and made some decisions, but it's another long road ahead of us.)

For two years, I've been fighting insurance, and drs and their staff all while living with very little quality of life. I've been keeping my head up and pushing through to get the answers I deserve only to be continually disappointed. And I am now facing an unthinkable future with a permanent ostomy.

Now before anyone even thinks to say to me or my husband, that oh a permanent ostomy is not that bad at least I will be out of pain and get my freedom back, I ask you to NOT say this even if you are thinking it. The hubby and I are very realistic and smart people, we know that people live with ostomys all the time and we know that if that's what we ultimately have to deal with then we will. But you just take five seconds to put yourself in my shoes and see how you would feel about dealing with a bag of crap stuck to the outside of your stomach for the rest of your life. Having to adjust everything you do around your external crap bag -- from what you wear, to where you go, to the extra time and supplies you need to constantly be mindful of. Remember that going to the beach would not be as carefree as throwing on a suit, grabbing a towel and some sunscreen. That skin rashes, creams, adhesive, and a part of your intestine sticking out of your body would all be daily dealings. Now also remember that my first experience with an ostomy was less than stellar so I'm even more reluctant to just accept that and "move on." And not to mention that the surgery would be major, as they would be removing my j-pouch, creating the permanent end ileostomy and giving me a "Barbie Butt" -- sewing up the sphincter. 

Please respect that whatever happens and whatever decisions I have to make regarding all of this, I need to make in my own time, when I'm ready. I have so many "what ifs" going through my mind. I'm missing my dad more than ever and I wish that things weren't the way the are. Both me, the hubby, my mom and my brother would really like to hit something or someone right now. (I'm so thankful for my family!)

I'm still hoping that things won't be as bad as they seem after the test on Monday, but lets also be honest, that's really not the way the cards have been dealt this entire journey. So hopefully the biofeedback will improve things to a point that I can live a better life than I am now or at least prolong the bigger life change that may lay ahead. 

Your continued support, prayers and love for me and the rest of my family is really what we need right now. Allow us the time we need to process. Remember that your advice may be with the best of intentions, but unless you've been in this situation you have no idea what you would do. I'll let you know what happens next week...

9 comments:

John R McCall said...

Love you sweetie , You can have mine if you like,,Its up for the task... it dont work always when I want it to just so you know.
Just to make you laught a little My Allie, But If I could I would .
You will find the way , the you need to go and what ever it is I'm behind you 100 %
JM

Mrs.Newton said...

We are here for you Al...whatever we can do. You are constantly in our thoughts and prayers and your forge-on-spirit and solve-the-problem, attitude are ALWAYS an inspiration. I'm sorry this is happening. IT ISN'T FAIR! And I think we all want to kick someone's butt on your behalf!

Jen Hodson said...

This flat out sucks Al. Always know that I am here for you and your family for what ever you may need. I love you lots!
Jensters

Jenn Ciscel said...

I am so sorry to hear all of this. Like every nite before I go to bed, I will keep you in my prayers & thoughts that there will be time in your life that you don't have to deal with this "crap". I LOVE YOU and I am constantly thinking of you. XOXOXO.

M. said...

My thoughts and heart are with you Allison. You have every right to be angry. Only the strongest and happiest thoughts are being sent your way. muah! Marilee

Kim Vaiana said...

Thank you so much for all the information- we absolutely are sending you all our love. If I could send more- it would be there. I know your mom knows, if you need anything that I or my family can provide- count on it!!It royally is the worst to know that good people suffer, and since you are not just good, but rather 'best there is' from a family of 'bests' you have gotten the brunt of a stupid world.
Please know we are there with you.
Love from all of my family!

Natalia Ritchie said...

Al, the last thing I would do is judge you. I know how hard it is to not only be sick, but also have to deal with how treatments will affect your life. For me at this point oxygen is like that. People tell me all the time that if it helps me I should not care about anything else. But I can't help it I do. People stare at me, I hate that. I am limited to go out for a certain amount of time due to my tank running out....it all sucks. And I really don't like it when people tell me what they would do.
Keep strong and I hope that things get easier for you.

Aim said...

"Why me" is definitely a good question for you to ask...how frustrating this all is...it's beyond comprehension! Not that it will help fix your retarded sphincter or any other of the lame things that are wrong, but you know you have my support- always! Love you Al.

roberta said...

Roberta from the Crohn's support group:
thanks for giving me this link...you know Darren and the gang are with you-I am not given to platitudes nor saying it will be ok so I will follow your situation and keep good thoughts.romey436@verizon.net