• Posted by Flo on November 5, 2010 at 4:46 pm

    i will apologize now for the typos you know drugs and all,Well I made it through the surgery withtwo units of blood, an indiana pouch, and about 100 drains okay maybe not quite 100 (99). i have walked 4 times, chewing gum not pushing the button all the time and still no bowel sounds what up with that :silly: i know wgive it time. supper sore and every educational person in the hospital has been up here dont they know i am on drugs and wont remeber anything. that is all for now time for walk and a nap,

    CatherineH replied 14 years, 2 months ago 9 Members · 18 Replies
  • 18 Replies
  • catherineh's avatar

    catherineh

    Member
    December 14, 2010 at 3:52 am

    Hello Flo… Just thinking about you and wondering how you are feeling now that you’ve been home for a few weeks. I sincerely hope that everything is going well and that your recovery is on track. Check in with us if you have time during this busy time of the year.

    Hugs,
    Catherine


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • Jj803's avatar

    Jj803

    Member
    November 10, 2010 at 10:00 pm

    Hi Flo,

    Good to see your progress and your return to home. I am glad that you took that break on the way back. Since you are still in a relatively early post op period the risk for clots is still there and riding in cars, trains, and planes is best done with some activity on an hourly basis at least. We broke up our ride back from Nville, as well at about the 45 minute mark, just wish I had emptied the leg bag there, but it was just a rest area without facilities so I let the bag continue to fill and it was quite full with at least 500cc by the time I emptied it. Very stupid on my part, but you get to learn so many new things along this path. I hope your pain soon subsides and that your recovery will be very, very boring. Best wishes,

    jj

  • 's avatar

    Guest
    November 10, 2010 at 7:59 pm

    Flo..did they give you more than one drain when you left the hospital? I had an extra as i had to clean out one every day..put a little soap in it and run water through it and hang on a towel rack to dry naturally. I had a long drain and large bag for night time and a shorter one for my leg bag which i wore during the day. You’ve got a lot of mucus in there which might be clogging it up.
    As far as sitting on the toilet and thinking you have to pee that still sometimes happens to me 8 yrs later. Its hysterical..there must be some memory cells in there!! We’ve all done it!! :laugh:
    pat

  • gkline's avatar

    gkline

    Member
    November 10, 2010 at 7:44 pm

    Way to GO….FLO! :cheer: :cheer:

    You are an inspiration to everyone on this site! There are certainly people reading your posts who can find hope in their futures! I, and all who read your posts, are encouraged by your “never Quit” attitude!

    You know this is a team situation. The Dr. is important. But you also give great kudos to your husband(he is going through this just like you) the nurses, your friends, the hospital support staff( I had a special relationship with the cleaning people) and everyone who touched your life in this war.

    Get well! I know you need a Big Cheer! :cheer: :cheer: :cheer:

    Three of them

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • catherineh's avatar

    catherineh

    Member
    November 10, 2010 at 6:48 pm

    Welcome home, Flo. I’m so happy you have reached this milestone. Things from here out should only continue to get better, maybe with some minor bumps in the road, but hopefully they will be few and far between.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • flo's avatar

    flo

    Member
    November 10, 2010 at 6:00 pm

    Well it is 6 days post op and all is going well. yes Sara Anne you really never know how many people truely care about you until something like this happens yes you know you have friends but the ones that stand by you through something like this are your true friends. And yes the Hubby is pretty darn amazing praise be to God on that one cause he and he alone has given Hubby the strength to put up with me for 29 years and still say he likes me. :laugh:

    Went home yesterday, never new how far it was from Nashville to Crofton Ky, okay I new just did not know that 80 miles could seem like an eternity, stopped at a rest area to walk for a few minutes could not stand sitting any longer felt things were backing up knew I would prolong the trip but also knew I had to get out of that car and walk a few minutes. Felt much better for doing so. Got all the drains out except 2 the stoma tube which is clapped off and the malecot cath. So it is vry strange to me to be encouraged to pass gas girls don’t do that so my husband has had a good laugh lately with some of the things I have said about passing gas. I don’t know if I am the only weird one out there but it is like I have to sit on the potty to really be successful (I know TMI)so I find myself sitting on the potty for this purpose but then other times I think my brain has not 100% accepted the fact that I do not have a bladder and I think I have to pee is this totally weird or what? The other thing is how do u ever feel like you have finished your business if u don’t pee I mean they go hand in hand?
    I managed to get about 2 hours of uninterrupted stretches of sleep I felt like my cathwas backing up and sure enough I had to get up and walk to make it drain correctly is that normal? It is so positional I have to lift the tube up put it down lift it up get up walk around and finally get it to work correctly. But really other than the pain and the need to get about 36 good hours of sleep I am good especially since I don’t think the sleep thing will happen for a very long time and the pain will ease up at best with pain meds. Thanks again guys, Flo

  • sara.anne's avatar

    sara.anne

    Member
    November 8, 2010 at 4:05 pm

    You do know, don’t you, why things have been going so well? All of us on the forum are standing right beside you!! :)
    Seriously, congratulations on your progress and your wonderful attitude and on choosing such a wonderful husband!!

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • mmc's avatar

    mmc

    Member
    November 7, 2010 at 11:15 pm

    Flo,

    I’m so proud of you! You are doing absolutely wonderfully and great progress so far. It is something we don’t often mention but have found to be the case a lot of times: Spouses sometimes get even closer than they thought possible. Spouses are going through everything at the same time as we did and they have a whole other set of issues that they are concerned with. Knowing they have our back is great feeling.

    It continues through the healing. I’m sure your husband is pretty darn excited that the surgery was succesful and that you are going to be a couple for many years to come.

    Keep up the great recovery!

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • catherineh's avatar

    catherineh

    Member
    November 7, 2010 at 10:29 pm

    Flo… Thanks for sharing your cute story about your husband and Mom. Having a loving support network makes such a difference in being able to face these challenges head on. I just have to say, you are amazing. I know these last days have been so very physically and emotionally difficult, but you have handled them with courage and grace. My best wishes for continued steady progress in your healing and well-being.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • flo's avatar

    flo

    Member
    November 7, 2010 at 10:18 pm

    Thanks guys for all the comments and I did report it as soon as i saw it the day shift nurse did not log it but i mentioned it to the night shift nurse and she was much more attentive then the day nurse. It does amaze me the night nurse that i had was so wonderful even at 230 this morning when i crashed and burned crying like a baby hurting and just not sure what to do and my husband was so upset because he did not know what to do she was so helpful, kind, patient and seemed generally concerned in getting me comfortable stood there and had me hit my PC pump several times it was too early for a full dose of pain meds and the night nurses split the whole floor between 2 and (she was so very busy i felt bad for her trying to get everyone taken care of but she was not short with anyone) where the day nurses split whole floor between 4. Now today my day nurse is wonderful also

    so here is how the progress is going:

    1. I want to first say my husband has been so wonderful and kind and helpful taking care of me I thank God daily for such a wonderful man in my life. He is also so very funny last night I had a BM and passed gas you would have thought I had accomplished the most amazing feat in the world ran out and told the nurse she said was it a normal BM he was “oh i left it for you to see” :silly: he called my mom I am not sure of the whole conversation but he was laughing like a school girl she was like oh i am so proud of her i knew she could do it that is my baby :woohoo: Anyway back to the subject.

    so I have been up and walking several times a day chewing my gum had a BM and passed gas, started flushing pouch on day 2 post op, started tryed to do as much as i could (well hubby and I)knew we were going to go home doing it changing my bandages on my own was on Ice chips day 2 of post op was put on full liquid day 3, lost my PC pump today :unsure: went to PO pain meds one of the residence said i might get to go home tomorrow but the Doc on call this weekend said more like Tuesday, either way they are really happy with my progress. Dont get me wrong it has been a very rough couple of days by far the hardest thing i have ever done and it is not over yet, lots of healing, learning and adjusting so if you are still here I do want to say thanks for all the advice, support and encouragement. I am so glad i found you all before surgery I beleive the information you have given me has truely aided in my healing. Thank you all. And most importantly i want to thank God for carrying me through this part of my journey and i know he will see me through the rest of the way. Thanks again to everyone, flo

  • mmc's avatar

    mmc

    Member
    November 7, 2010 at 2:33 pm

    Flo,

    Those sounds are a good thing. Surprising how excited the nurses get when you start passing gas! :) Keep up the good work.

    I agree that the likelihood is high on an adhesive being the culprit. I have a problem with some tapes and had a problem with the adhesive they use on nicotine patches. As Pat mentioned, some soaps/cleansers can also be a problem.

    DO report it though!!! You want to avoid whatever is causing the reaction.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • sailorman's avatar

    sailorman

    Member
    November 7, 2010 at 1:28 pm

    The blisters sound like what I’ve had. In my case its SOME tape and one time, the see thru tape-like thing that they put over the IV site. Generally, I’m OK with most of the tape but there is one type that definitely causes blisters on me and it is a semi translucent (not quite see thru) tape with kind of a bumpy or pebbled surface. at my hospital, it seemed to be the favorite of the lab techs who draw blood at like 4 or 5 AM when you aren’t awake enough to notice. Since we figured it out, it was always in the nursing orders when I checked in (thank you hopsital computer) but the lab people don’t see that when they are taking the samples.

    I also had the same blister reaction to the type of butterfly closure that my sureon used to close up my laparscopic gallbladder removal last March.

  • 's avatar

    Guest
    November 7, 2010 at 2:31 am

    Flo..report the blistering to your stoma nurse or doctor. You may need patch testing. You could be reacting to the components of what the temporary bag is made of or even any wipes you may be using. You wouldn’t believe what they put in some of that stuff.
    Here’s a paper written on all possibilities…which are often overlooked.
    http://www.medscape.com/viewarticle/723146_3
    I personally reacted to the bag itself and had to use a stoma powder until i finally got rid of it and my rash cleared up…but no blisters. Oh and i found that i was allergic to the Dial soap they advised to wipe my stoma with after cathing..i did get blisters with that..anything with perfume in it and i break out..so i used some cortisone cream to clear it up and now for 8 yrs have just used plain old water to wipe the stoma after cathing.
    But do report it………
    xxoo Pat

  • catherineh's avatar

    catherineh

    Member
    November 7, 2010 at 2:11 am

    So happy to hear from you so soon. I was thinking about you on Thursday and hoping all was going well. Sounds like your recovery is getting off to a good start, albeit sore and painful. All I got on the first day was a peppermint mouth swab, not even an ice chip, so there was little for the bowels to get excited about but they were working OK in a couple of days. Rumbling seems to be a positive signal. I hope those blisters go away very soon!


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • motomike's avatar

    motomike

    Member
    November 7, 2010 at 12:18 am

    3 cheers for you, Flo. It sound like you are doing real well.


    I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
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