Wednesday, December 7, 2011

C-Diff

This will be short but I finally can sit up and write a quick blog post, so I will let you all know what is going on.

Thanksgiving evening I took a neupogen shot, which gave me a bad reaction as it often does.  I spent that night in severe agony, feeling like I was delivering a baby out of my spinal canal.  The pain eased up by the next day but I never recovered, I stayed in bed nearly unconscious and sick for two days.  Saturday night, diarrhea started and I checked my temperature: 101.7.  I'm supposed to call my oncologist anytime my fever goes above 100.5 so I called, and they told me I probably had neutropenic fever and to get to the ER and they would call to have me admitted.

I can't possibly describe what I went through from that point on.  Hellish would be an understatment and the worst experience of my life would not.  I didn't have neutropenic fever, I had a SuperBug infection called C-Diff.  (Clostridium difficile)   By the time I got there, I was in a bad way.  I had fulminent c-diff colitis and was septic.   I spent two nightmarish days in ICU with a dysentery-like diarrhea, pain,, and sickness like I've never felt before.  My heart rate was 160 and my blood pressure sky high.   They gave me antibiotics.

The antibiotic started to work, so they moved me to a ward, on IV flagyl and vancomycin.  They told me they thought they would have to take my entire colon out, although I was in such bad shape they didn't want to operate on me, and in looking it up, survival is not good for that operation.

On about Day Four the surgical team decided I'd recovered enough that my colon was safe, and I was so relieved.  But, right at that point is where my recovery stopped.  And, my belly started growing.  On the seventh day they let me out of the hopsital with a prescription for vancomycin and I went home.

I've been home since Friday, and today is Wednesday.  At first, I was overloaded with IV fluids. My legs were swollen from thigh to ankle and they looked like elephant trucks.  My stomach was also very bloated, and I also thought that was from IV fluids.  Made it very hard to breath.  But, now that the IV fluids are gone, my stomach is still horribly distended.  I can do only the most basic self-care; my husband had to take the week off to help me.  I still have diarrhea about 8 times a day and I don't seem to be improving.

My last meal was Thanksgiving - on that date I weighed about 100 pounds.  When I got out of the hospital that first day, after non-stop diarrhea and no food, I weighed 118.  Now I weigh 110.

I saw my Primary Care Physician yesterday and he said that if I wasn't better in 24 hours, he wanted to re-admit me to the hospital.  My vitals are fine but the belly distension is worrisome.  I'm not better but I made an appointment with my oncologist for tomorrow, and I'll see what he says.  I know he'll fight the bowel removal and I want him in charge of my care.  So, between these two doctors, I'll likely be back in the hospital this weekend but hopefully they will have a trick or two up their sleeve to get me into a real recovery.

I have not been able to lift anything heavier than an iPad or iPhone and can't update the blog from those devices.  I tried to give twitter updates and will continue to do that when I can't post.

I know there have been many worried thoughts about me, many prayers sent up, and well-wishes sent my way.

Thank you for that, and keep them up for I'm not out of the woods yet.  All I want now is a nice, simple Christmas with my family without the fear of losing my colon hanging over my head!

49 comments:

  1. Oh, Ann, my heart is breaking for you. Sending prayers and hope.

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  2. Yuck. C. Diff is rough - I remember when my Honey's mom had it while she was fighting cancer. I'm sending warm thoughts your way!

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  3. Ann I am SO sorry to hear all what you've been through - this is awful. Are you sure you want to wait another day to see your onc before going to the hospital?
    Sending hope and energy your way!

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  4. ANN I so hope you get under your onco's care and your body fights this thing and you get to have that nice, simple Christmas with your family. You deserve 100 Christmas's and more!!!

    We are pulling for you and holding you in our thoughts.

    Sending oceans of strength,

    Renn

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  5. Ann, I'm sorry it's been a rough holiday for you but it sounds like you've been through hell and back so make sure you keep your head up! If you've made it this far you can make it through anything. Thoughts and prayers and love sent your way!

    Aaron/Audioscience

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  6. Ann, so sorry to hear you are going through all this...keep fighting, you have made it this far! Thanks for updating us, we were all worried about you...
    Take care and hugs to you and your family,
    Jill

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  7. Yay! You're back! I am so happy to read your post but certainly very terrible about what you've been through and are still going through. But I have confidence that you are going to beat this C-Diff just like everything else. I know you are not out of the woods but at least you are out of the hospital (for now). I will continue to pray for strength for your recovery and will keep checking in on you.

    Good luck, sweetie! You WILL get through this!

    Jen

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  8. You are as tough as they come; all thoughts and prayers are with you and hope for that simple Christmas...

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  9. so sorry you are going through this.....if you do have the misfortune to have to remove your colon...ask them for a jpouch (pelvic pouch)...rather than needing an ostomy you have them fashion a replacement for your colon from your small intestine....I have one and its works beautifully!

    P

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  10. Oh dear, Ann. I'm so sorry to hear this. I was hoping we hadn't heard from you because there was nothing to report. Wishing you the speediest recovery, peace and comfort SOON. Please take care.

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  11. We are all worried about you, Ann, and sending you the best thoughts in hopes that you get through this. I can't offer any advice, but I can say "It sucks that you got cancer". Keep up with the updates when you can, everyone is anxious to hear that you are through the rough times and headed home safely.

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  12. Ann, what a horror you've been going through. I learned a bit about C-Diff a few years ago when my aunt had it. It's one miserable condition. I was stunned when I heard that you were having to deal with this. I am so sorry. I hope that your PCP and your oncologist do have some tricks up their sleeves so that they can get you well and save your colon. And after that, I wish you a peaceful and happy Christmas, with only good health ahead.
    Beesie.

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  13. Ann - I'm so sorry to hear about this. Hang tough sweet lady.

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  14. marie5890 from BCODecember 7, 2011 at 2:41 PM

    Im Marie5890 from BCO, the "not diagnosed but concerned" part of the forum.

    You have been in my deepest of prayers and thoughts since I heard you are in a big battle. Praying for your family and your doctors and other medical personnel who are there to help you.

    God Bless

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  15. Thank you for taking the time to write, I am so sorry to hear about your illness. Hang in there you have been through so much keep fighting!
    Wishing you a happy Christmas! ((((Hugs))))

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  16. Hi Ann,

    You are due for a little good luck. It seems like you have had everything that could go wrong, go wrong. I am hoping that all this is behind you. I know you have lots more to deal with and it is your turn for unexpectedly good results.

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  17. Hi Ann,
    I am sorry you are so sick with this, so many women miss you on breast cancer.org. They really love and care about you. I hope you get better soon, stay tough, you are a tough lady hang in there! You can do it!

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  18. Ann,
    Caryn from bco and San Jose here. All good thoughts and prayers are with you!

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  19. Ugh! This is the suckiest news. I'm glad you have a trusted team to treat you, but I am so, so sorry to hear you had to go through all that pain and another hospital stay. I hope they get it under control again, and soon. Sending lots of good vibes from the Midwest!!

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  20. Sending prayers & hugs your way, Ann.
    Cheers,
    Heather

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  21. Our entire church is praying for your recovery.
    Sending hugs and prayers to you. Stay strong.

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  22. Thank goodness you wrote at last, 2 days since your last twitter and I was worried!

    Good luck over the next few days. I hope you dont have to go back to hospital but if you need to go, then that is the best place to get over the thing that is hindering your recovery. hopefully once they get a handle on that you will be free and clear and able to start getting back to YOUR normal

    Mandy

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  23. AHH! I am sorry to hear you had such a terrible week. My fingers are crossed that they solve this for you and make you more comfortable!

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  24. ANN! You're here! I am so relieved. I
    m sorry you had a bad week, but I am SO GLAD to have a note from you! I was so worried.(((HUG))

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  25. Ann- I am so, so sorry to hear about all of this. It all sounds so terribly painful and frightening. I know you are not a believer, but I am, so I am praying for you. Prayers for healing, strength, peace, and wisdom for the doctors. God bless you and your family.
    Patti

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  26. I'm so sorry you are going through this. I just read about a cure in Scientific America: http://www.scientificamerican.com/article.cfm?id=swapping-germs

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  27. Holy cow Ann! I was just hospitalized for 6 days myself for what they thought was C Diff. Flagyl did nothing & I kept testing negative. (all 4 C Diff tests!) So they tested for ecoli, giardia, and parasites. All negative. Ordered a colonoscopy and made me do the prep for it which was pure torture after already having diarrhea for 11 days. Switched me to Vancomycin and Bacid (a probiotic) and that combo finally turned me around. My blood pressure was 70/40 at one point. I was NEVER as sick as this during all of my chemo. It is scary! You might want to ask about the probiotic/antibiotic combo. My stomach was hugely bloated as well & I gained weight due to all the fluids but it has been 2 weeks tomorrow since I was released and it has gone back to normal and I dropped about 10 pounds. You are in my prayers for a full recovery.

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  28. Ann, from what I have just read, I think that you are actually on the mend or at least going in the right direction towards a mend. It seems as if your body came from the brink of death and near organ failure and had enough power to get you to where you are now, and will have the power to see you to a full recovery. Coming out of what you described is nothing short of a miracle, even though you are not fully out yet, you are getting there slowly. I hope you are able to not lose your colon. Strength for Christmas Ann. I am soo happy to hear from you, was soo worried. You sound down. This is hard! Hang in there Ann! You are tougher than you realize.

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  29. Dani here from BBC programme World Have Your Say.

    We are doing a special programme tonight at a hospice in London - there will be a group of about 8 people who will be discussing the issues of carers and also whether you can prepare for a bereavement.

    Some of our guests will have lost someone very close to them, others will be carers or patients.

    The idea is that we will also talk to other carer/patients around the world.

    Wonder if you could help - want to speak to patient and carer - even if it's not you maybe someone you know? On air between 1pm and 2pm your time.

    Please email dani.sinha@bbc.co.uk

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  30. Very relieved, Ann, to read your post. However, so sorry to hear of this latest challenge. Sending good wishes for better days ahead.

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  31. OH MY GOODNESS what a horrible horrible sounding experience!!!! Totally suckey and craptacular (pun intended... sorry).

    I wish for you a smooth and peaceful Christmas as well. Hopefully, the next few days will provide answers and an effective treatment. I'll be hoping hard for you... with all my might.

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  32. I love your blog, you always make me smile...I shared your letter to the newly diagnosed to a friend. I am praying that you make a recovery and get to have a nice Christmas as home
    Tammy

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  33. Anne, I just want to say that I've been praying for you. I wish that I could be with you to offer substantive help. I'm so glad that you could update us.

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  34. Man, oh, Man! Yikes@! Holy Moly! You've been through such a fright and, well ... hang in there! Know that there are a whole bunch of us sending hopes and wishes and prayers out into the cosmos for you!

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  35. How awful that you have been through such a tough patch. I am and and have been praying that you have a healthy simple Christmas with your family.

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  36. "When you're going through hell, keep going." Winston Churchill
    Will be praying for you, dear one.
    xoxo

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  37. oh, ann - i was so worried about you, and it appears there was reason to be so. i truly believe that you will overcome the latest challenge, and that what has happened is evidence your body has been restoring itself after the major surgery you had - to simplify, your liver had to borrow immune system resources in order to regenerate. so running up against c-diff is proving to be pretty rocky. but you are strong, ann, in determination, mind and spirit. believe. your colon will recover. and you will have the christmas you are wishing for. warm hugs, and thanks so much for posting - now we can send all manner of positive vibes for healing.

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  38. I hope you are better now. I will pray for you.

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  39. Ann, I think of you often and hope that you are beating this C-Diff bug and beginning to feel better. You've always inspired me with your upbeat attitude and helpful advice on BCO (miss seeing you there...)Wishing you improved health for the holidays,
    One of your BCO friends

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  40. Yikes! I'm praying for you and your family, sure hope you will be feeling better soon.

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  41. Ann - I am a huge fan of you and of your website. I love your writing - my favorite is the piece you did on the PET scans. I was chuckling all day after reading that. Anyway, wanted you to know you are in my prayers. That you took time out to update those of us who follow you and care about how you are doing, shows what a big caring heart you have. I hope you are resting and healing.

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  42. Ann, hopes and prayers coming your way. Your illness sounds so hellish; I'm so sorry for all you are going through. I pray you get better soon and that you can spend Christmas feeling better, with your family and friends beside you.

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  43. hey there - it's been a week since your last post.... and i was just thinking about you... so i thought i'd just leave you a quick message. i'm hoping you are feeling stronger... and that treatment is progressing well. what a rough time you've had! i'm rooting for you.... i wish i could give you a big but gentle hug.....

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  44. Ann,
    So sorry for everything you've been going thru. You are a strong person and I know you'll come out of this. Hope you are able to recover and have the nice simple Christmas you so dearly deserve.
    Take care,
    Vonda

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  45. I have been wondering how you're doing and good Lord when I read this post, well, I don't know what to say, except I'm sorry you have had to go through all this. I will keep thinking of you. I hope you are doing better now a week later. Hoping you get that nice simple Christmas and quiet time with family. Sending warm wishes. Update us when you can.

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  46. I was recently diagnosed with Breast Cancer and came across your blog (loved the name of the blog)right after Thanksgiving. Read the older blogs and absolutely loved "Things People Say..." and have shared it with some people to bring awareness and sensitivity to this issue. Your writing is wonderful--true, sincere and some humor to a not so funny matter.
    I am so sorry to hear of your c-diff experience. I will pray that you recover without having to return to the hospital. I look forward to your continuing your blog as it is very inspirational!!!

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  47. Just checking in with you, Ann. I am hoping and praying that you are on the mend. Four days in between Tweets is a little too long. I hope you are doing okay. Stay strong (I know you will!). Hugs,Jen

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  48. Some good ideas here about weight gain for people who struggle with this for medical reasons. I have recently produced a short blog on how I attempted to deal with this:

    http://yeodblog.wordpress.com/2012/01/06/weight-gain-ideas/

    I think this is a much under rated issue we often have to deal with so any ideas on how to manage it are really welcome.

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