Total and utter devastation. And I’m not exaggerating. I’ll give you the whole story but the short version is that I didn’t get the pouch made and I will not be done in November. It seems like I won’t be done ever…I have to have a total for 4 surgeries now, and for once, I’m at a loss of words about this.

Monday was my preop day. All appointments go well, I see my surgeon and his nurse and they in fact comment that I look like I’ve lost weight. Which has been a huge concern for me. I was scared I wouldn’t get this surgery because of my weight so when his nurse told me months ago I would still get it, it would just be harder I have been banking on that.

So I go in Tues for surgery, totally pumped. I’m so ready to get this moving and get on with my life. I dont think I’ve ever been so excited for surgery, but I was. The surgery was supposed to be about 4 hours long, and all I remember was being in recovery. I never remember recovery so that was weird for me. I was there for HOURS. I stopped breathing because of all the pain meds, so they had to lay off so it just got miserable. So I get to my room and I’m still way out of it, and I have no idea how much time has passed but eventually my surgeon’s fellow comes in and just drops the bomb. He told me they couldn’t do they surgery because my small bowel wouldn’t reach. And I just lost it. He said it so matter of fact like, and it all just hit me at one time. I was alone, this guy I don’t know told me this devastating news and then just walked out.

I’m still under huge pain meds so I’m trying really hard to understand whats happening, and then my mom came in and I just couldn’t stop crying because I just knew that this would never be over. So I’ll spare you the details but basically Remzi decided that I still need to lose weight. He said that he will try again in 6 months after I lose a mandatory 30-40lbs. And then months after that he will do the take down. My god that is like 9+ months away, when I was supposed to be done in November. That puts me in surgeries in my first semester of grad school. It puts my in this bag longer for over a year. It puts so much pressure on me to lose this weight because if I don’t, I will be like this forever. This just isn’t how I pictured my life. I want my fucking life back. I’m so tired of living around this disease, and planning around surgeries and how the hell I’m going to pay for all of this. More surgeries means more money. I can’t afford to be alive right now.

You know I was there, I was positive about all this. I was happy in my life, and eager to start the next phase of it. But now its all different. I can’t believe this is happening and that it happened like this. Its so hard to know you have the world rooting for you and to fail. I’m furious with Remzi. I don’t trust him anymore, and that brings up a whole ball of problems there. I now have a 4 step instead of a 2 or 3 step. I’m beyond depressed at this point. I don’t want to eat anything, because all I can think about is losing weight. I just don’t know what to do anymore. I have no reason to get through the end of the year. I have no job, and I could have gotten one if I didn’t have 2 surgeries. Just one, and I could have gotten a job, but now, I cant. I planned grad school instead but now I’ve got surgeries in the middle of that. I’m so tired of surgeons only thinking of the patient….not the person. I really thought he was totally different…but I was wrong. Remzi may be good at what he does, but he doesn’t care how it effects me. Shit, he doesn’t even know my name.

I have pictures for you guys again but I dont feel like moving to go get them. Sorry to be such a downer, I just can’t seem to see the light anymore.

Please leave a comment

  1. Tammy Says:

    Wow, Jackie, I’m so sorry. I can’t believe you had to go through all that and then they couldn’t do the surgery. My heart just goes out to you right now and I don’t even know what to say. I’m going back to CC in a few weeks for #2 of 3 and I haven’t even thought for a second that the surgery might not happen. It already seems like such a long process with the three steps I would be upset too if it was going to take even longer. Would you qualify for financial assistance from the hospital? I saw on one of my bills from there they have the income guidelines. Once again, I’m soooo sorry.

  2. Russ Says:

    Jackie, I am so sorry to hear about your setbacks. It sounds like you’re in a major rough patch right now, but I’m sure you will work your way through it with the love and support of your friends and family. I wish you all the best.

  3. Taylor Says:

    I am sorry that sucks. I can’t imagine how angry I would be. You should just come to KC my surgeon was a rockstar who even called me before my surgery to check on me. My thoughts are with you.

  4. Casey Says:

    I hate that this happened to you. If it makes you feel any better (tho I know it might not), I hate my life, spend all of my money on medical bills, and I have to wear weird clothes to cover the lump of shit on my abdomen. It’s fun to be us.

  5. Linda Says:

    Jackie, I am so very sorry. I pray that things turn around and get better for you soon. It’s so hard to deal with a disease and then have to deal and manage all the medical expenses that go along with it. Keep your chin up girl! It will get better. If you’re looking for a doc to give you a second opinion feel free to contact my doc (Dr. Wayne Ambroze) here in Atlanta. He’s AWESOME! Hang in there!

  6. gmombo Says:

    I have read you all along and hung in there with you, but I’m a mom on the outside looking in trying not to interfere. My son had surgery #2 of 3 at University of Chicago on August 4, 2010. But now it’s time to write.

    YOU HAVE NOT FAILED
    and the world is still rooting for you.

    Your doctors are supposed to be the best in the business, so I don’t know what their deal is with this. I hope you left out information because it is impossible to get my head around what you said they did. You have every right to be furious. Hell, I’m furious for you.

    You will get through this. It will take longer. If it would help, come to U of C for a consult. Don’t stick with someone you’ve lost confidence in. But make him explain himself. Tell him what his fellow did. They treated you like crap and they need to know it.
    Contact CC for financial assistance.

    You can do this and you will. You will get your game back.

  7. Emily Says:

    Jackie…

    This is really shitty. I’m sorry.

    But – from what I can tell, you’re a tough and smart chick (okay, a tough bitch) and you will get through this.

    Emily

  8. Lisbeth Says:

    Jackie, you’re not alone.

    My surgeon had said I was a perfect candidate for takedown, and was planning to do it in two steps, but wouldn’t you know it, he opens me up and my large intestine had developed CANCER that spread to my uterus (so no babies for me, ever.) I now have to go through chemo for 6 monthes and hope to god that I can get healthy enough so my surgeon will reconsider surgery sooner than 3 to 5 years.

    Life sucks at the moment, but hey man, we have our sight, our hearing and our ability to walk. We aren’t stuck in wheelchairs paralyzed from the waist down and we haven’t been terribly burned or maimed, so thats a good thing. Everytime I go for chemo I walk past the BMT patient rooms (Bone marrow transplant) and think of how lucky I am that I’m not stuck behind protective plastic walls. It’s true we’ve been delt a harder hand than most, but it isn’t the hardest. It’s survivable although it doesn’t seem like it at times. Hang in there and know that you have all of our support and that I totally know what your going through. I know your disapointment.

    Lisbeth

  9. Rachelle Says:

    This sucks. I can’t believe your doctor went into your room, dropped the bomb on you when you were alone, then just left. I want to fly out there and kick him right in the balls. What a dick.

    I’m so upset for you.

    I could say hang in there it’s going to be okay (and all that jazz) but I think right now it’s fair for you to just be upset if you want. This isn’t fair, at all. There is nothing okay about dealing with all of this shit at your age.

    You’re one tough chick. Just remember that!

  10. Jackie Says:

    Hi Tammy, Yea I never even fathomed this happening. No one ever talks about it. I guess I shouldn’t be surprised. Anyhoo I did just apply for assistance because not only am I sick im also a broke ass. So lets hope they take some sort of pity on me. Good luck, lets hope you dont join my club. Is Remzi your surgeon?

  11. Jackie Says:

    Thank you. Honestly as lame as it sounds your comments all help. Its just nice to know that even though almost all of you don’t know me, you guys care about me. Sometimes its just nice to know people care.

  12. Jackie Says:

    Hi Taylor. While as much as Id love to give Remzi a kick in the nuts and go to KC, its really not his fault. From what I’ve learned…they can’t predict this, though I don’t understand how. And besides, I’ll let him clean up his own mess at this point.

  13. Jackie Says:

    Casey as bad as it sounds…its nice to know there are still others out there with the crap bag. It seems like everyone is done with their surgeries…and now I have to have mine double time. I just have resolved to live my life in hospital pants and maternity jeans.

  14. Jackie Says:

    This made me cry. Its sad that I feel validated when other people get angry for me, but I spend so much time trying not to wallow, I forget that sometimes you just have to be mad. Thank you, and thank you for being supportive to your son. My parents try so hard, and I let them help so little, and I know thats hard for them but the fact that they jump to help when I ask, means the world to me.

  15. Jackie Says:

    Thanks Emily. I dont feel very tough. I feel like a whiney ahole who just bitches on the internet all day long, but I hope to return to my former bitchy self soon.

  16. Jackie Says:

    Oh Gawd, Lisbeth, just when I think I am the most unlucky person alive, some like you comes along and smacks my shit back into order. I have read your post over and over again, and I dont know how you’ve found me but I’m so glad that you did. I am SO ungodly sorry that, that has happened to you. Holy fuck. Sometimes I get so sad just thinking about the people I’ve met out there that have a to go through these things, and youre right it makes me thankful for what I’ve got even if it does blow. It makes me want to smack every healthy person I know for being able to live life and not think twice. Lisbeth, I don’t pray but fuck I might start for you. Althought I’m pretty sure if you say “pray” and “fuck” in the same sentence your prayers don’t count. Please keep me posted. And if you want my rambles on how adoption is a million times better than birthing anyway, just email me!!!

  17. Jackie Says:

    Rachelle, I love you because youre one of my sickie friends who has some extra bullshit, but doesn’t bitch all the time. Honestly, this makes you great in my book..

  18. Jpouch Life: Stories of Colitis, Crohn’s, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world Says:

    [...] dying its a tad dramatic but I’m not recovery very gracefully. First of all, you should go read about my disaster of a surgery #2. Long story short….I didn’t get it, what I did get was the 6-8 weeks of recovery. Awesome. [...]

  19. Tammy Says:

    Glad you applied for assistance. If you don’t qualify I don’t know who would. My surgeon is Dr. Lavery.

  20. Maryann Says:

    Tammy, My husband just had his first of three. How long did you wait before they decided to proceed with the second surgery? He too had his at CCF
    thanks!!

  21. Rachelle Says:

    I’m only cool because I want you to love me. :)

  22. Tammy Says:

    Maryann, I had my first surgery April 1 and probably could have had the second in late July but we had a lot going on this summer so I pushed it back.

  23. Maryann Says:

    Jackie just wanted to say hang in there!!! Your in my thoughts!! Just wondering how to help my husband in his decision to follow thru with his j pouch surgery. He has had his colon removed and has his ileostomy this was done in july. He has been reading up on the j pouch and is scared from all the horror stories that have happened to people. He is not sure if he wants to take a chance. He is currently “living life again” and is healthy. Has anyone regreted having their ileostomy taken down and j poch placed?
    thanks for any advice
    Maryann

  24. Jackie Says:

    HI Maryann,
    In regards to your husband I have a few thoughts. First of all, most of the stuff you’ll see in forums IS bad stuff. Most of those people are having issues and are searching for answers, and everyone else who is healthy and loving life isn’t sitting on a forum. So you won’t see their stories. I’m sure hes checked out the forum on Jpouch.org. There is a lot of negativity there, but its a great resource for problems. Jpouch.net is a great place for both good and bad stories.

    As for going to the jpouch, and making that choice, I’ve been there. I blogged about it in the past. Heres the thing, I wont sugar coat it. People do regret their decison. They do have so many problems they have to be reversed back to an ileo. BUT…it is rare. Most of the people I know with a jpouch, don’t regret it, even though it causes problems. I can put you and your husband in touch with people who are skating through life and also people who are currently questioning their jpouch.

    Truth is, its a personal decision. BUT if you’re ok with the ileo, and you KNOW you can live your life that way and be happy, what do you have to lose? If you go for the pouch and it fails or whatever, you go back to the ileo and you’re happy. I kinda figure you might as well try. BUT if hes too scared of the complications, recovery, and extra surgeries, tell him to stay where he is, I mean that also doesn’t hurt anything.

  25. Maryann Says:

    Thanks so much for your reply! Good advise. You are right it is a personnal decision that he will have to make. I think he is worried what I think of him keeping his ileo, I told him I didn’t mind. Its kinda nice that we can go out and about and he doesn’thave to worry about where every bathroom is LOL. We did that for so many years!!!!! We visit his gasto DR next week then we will make an appt with his surgeon in cleveland. I keep ya posted. Thanks again. Hope you are well :)
    Maryann

  26. Katie Says:

    Hey Jackie – I’m just getting to this post, and first of all, let me say that your Docs fellow is a DICK! I mean really. Its not like you aren’t going through enough crap, but for him to come in there and talk to you like he did pisses me off. For ONCE, wouldn’t it be nice if we weren’t just an effing number to them, or the source of their new sports car? Maybe if they treated us as a person instead of their cadaver from med school, things would be much better. I don’t think that they realize either what stress does to our bodies too. I don’t have the same thing going on as you, but the pain, the weight, the challenge, the 9000 docs appts, and for me – the biggie – is feeling like I don’t have a purpose anymore. Let me say Jackie – your awesome. you say it like it is, and there is a whole bunch of us that look forward to what you do have to say! We actually understand what you are going through.
    You have come this far, and as frustrating as it is, this is something that is no longer in your control. So give yourself a break – get pissed off, throw something! (always makes me feel better; until I have to clean it up) See if you can get any kind of state assistance for your medical, and also see if your hospital has a “Free Bed Fund” We have that here in CT, and It has really helped me a times!
    By the way – are you eligible for Social Security Disability? At least till all your surgeries are over, and you are ready to go back to work – not because your broke and HAVE to!
    I Haven’t been able to work since March of 06…. Have disability and medicare, and its not a lot, but better than nothing! :)
    Hang in there! (Damn was I chatty or what?? Hahahahaha!!!)

  27. Blood, Poop and Tears – Supporting the Colitis, Crohn's, Ostomy, and J-pouch community one butt joke at a time. » Blog Archive » #HAWMC Day 5 – Ekphrasis Post Says:

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