Struggling after my reversal operation

Annabelle41415
Annabelle41415 Member Posts: 6,742 Member
edited March 2014 in Colorectal Cancer #1
Sorry I haven't been more active on the board lately, and I'm hoping that all of you had a wonderful Thanksgiving with family and friends.

I have not had a real great experience with this reversal. I am going to the bathroom 20-25 times in about 2 hours, something that I knew could happen but was hoping it didn't. I am so raw down there that it hurts just to have a bowel movement. However, since last Tuesday, I have been having blood in my stool and on the TP and this is scaring me. I talked with the nurse on Wednesday and since I was just to see the surgeon on Tuesday (24th) she thought it was from being raw, but the last couple days have proven that not to be the case.

I have been so weak from constant bowel movements and it drains me because it is happening at night and I'm up for hours. I sit on the toilet and cry because it hurts so bad and because I see so much blood. I know I just had a scope and CT scan last month and another flex scope when I had my surgery on the 9th. I'm just hoping that all this blood is caused from the constant bowel movements and also hoping that it slows down some.

I would appreciate your thoughts and prayers that all is ok. My home health care nurse called the doctor on Friday but of course, they weren't there so she left a message with his nurse to call me Monday so that I can be seen on Tuesday.

I will let you know what I find out, if and when, I go in on Tuesday. I'm hoping they do a scope just to see where the blood is coming from.

Kim
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Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Im very sorry that your having so much trouble.....
    Here is hoping that it gets easier for you. I did some steroid suppositories that killed the pain and also healed it back there super fast. That was after I had a handful of cashews during radiation week 4...Keeping you in my prayers for fast healing and a simple answer for it.......{{{{{{hugs}}}}}}}}.....Buzzard
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #3
    Oh Kim!
    I'm so sorry to hear this. I'll be praying for you tonight.

    Diane
  • dorookie
    dorookie Member Posts: 1,731 Member
    #4
    That sucks
    I am so sorry to hear you are going through this and I sure hope you get in to see your doc soon. Please keep us posted and I will be praying for you.

    God Bless
    Beth
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #5
    dorookie said:

    That sucks
    I am so sorry to hear you are going through this and I sure hope you get in to see your doc soon. Please keep us posted and I will be praying for you.

    God Bless
    Beth

    Kim
    Hey I amso sorry to hear that you are in such pain....I wish I could do something for you..If you don't hear from the doc keep calling till you get him..There has got to be something that can be done for you...Good luck and my prayers are with you as always.....JULIE
  • Lawlak
    Lawlak Member Posts: 21
    #6
    Kim,
    I had a reversal about
    Kim,

    I had a reversal about four years ago and had the same experience that you are having. I thought it was never going to end. It got a little better over a few weeks but was really about a month before it was even close to normal. I also had some blood and it scared me pretty bad but it was just local bleeding from the rawness. I tried everything and the only thing that really helped was time and hot baths. I know it is very discouraging but it will pass!

    Tony
  • AceSFO
    AceSFO Member Posts: 229
    #7
    oh no
    Oh, Kim,
    I'm so sorry to hear that this is happening. I don't know what I can say aside from letting you know that I'll be praying for you and hoping it all gets resolved quickly.

    warmly,
    Adrian
  • lesvanb
    lesvanb Member Posts: 905
    #8
    Sending healing thoughts for you Kim
    I'm so sorry that you're going through this Kim. About the only thing that worked for me for rawness with so many bowel movements was sitz baths. Can you take immodium or lomotil? Thanks for keeping us posted and I hope you get relief soon.

    Leslie
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #9
    lesvanb said:

    Sending healing thoughts for you Kim
    I'm so sorry that you're going through this Kim. About the only thing that worked for me for rawness with so many bowel movements was sitz baths. Can you take immodium or lomotil? Thanks for keeping us posted and I hope you get relief soon.

    Leslie

    hi
    kim i was hoping you would not be hit hard with this.i only had my little friend the bag for 5 weeks and it took a long time for things to start working again,my surgen told me to take fibercon to bulk up my stool.finally after 9 months i am feeling a little better and now dont even have to wear a pad for fear of accidents,it does get better but i am worried about the blood,i still get sore and sometimes have a little blood from going so much and i know what you mean about being scared.we all have to find our new normal but it does take time,hang in there girl i know you can do it....Godbless....johnnybegood
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #10
    blood
    Hi Kim,

    I'm sorry to hear you're having such a bad time. A comment on the blood- you obviously should let your onc know what's going on, but I have actually been having a lot of blood lately myself. I didn't even have colon surgery, so I was really worried that the blood meant a local recurrence in the rectum. I then had a colonoscopy 6 weeks ago (which was good news- absolutely clean with no polyps or anything), but the GI Dr. who was doing it said he saw some damage from the radiation I've had along with some internal hemmorhoids & that my bleeding must be from the hemmorhoids and the radiation damage. Anytime I have diarrhea (which has been a lot from the Folfiri), I also get some bleeding. I was relieved to have the scope so they could see what was going on & let me know it was nothing serious. Hopefully you can get a scope done so you can know what the situation is. I'll pray that it's just because of having to "go" so often. I'll also pray hard that it starts to settle down soon. That's really a lot of going to the bathroom & I know it must be awful. I'd use the suppositories as well as the sitz baths like others have recommended.
    Are you on prescription meds for the diarrhea? Sounds like you need something stronger, if you are- definitely ask your onc about getting meds to control how many times you go.

    Take care dearheart-

    Hugs,
    Lisa
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #11
    Kim
    My dear Kim,
    I am so sorry to hear you are so uncomfortable and in so much pain. I am praying for you for some rest and some healing. I hope the doc can alleviate your concerns and help with the pain.

    Aloha,
    Kathleen
  • robinvan
    robinvan Member Posts: 1,012
    #12
    So Sorry
    Kim, So sorry to hear you are suffering so much. This was hoped to be time of renewed bowel function and health!
    Is there any topical pain relief to be had? A medicated cream, salve, or ointment with a local anesthetic in it? You should definitely follow up with your doctors.
    Sending healing thoughts and prayers.
    Rob; in Vancouver
  • VickiCO
    VickiCO Member Posts: 917
    #13
    Dear Kim...
    I am so sorry you are experiencing this. I do know what it is like. I was where you are for nearly 9 months, unless I took enough drugs to completely block me up - creating its own problems. As to the blood, I had it also. For me it was the radiation damage, which was too severe to continue like this, so I opted for a permanent ostomy. It's only been a couple of weeks (Nov 11) but I know I made the right decision for me.

    I pray that you get the relief you deserve, and that things get better quickly.

    Many hugs...Vicki
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #14
    lots of baths
    Kim,

    I have been where you are now. It was awful. What helped me some was lots of tub baths and vaseline. I would even get up during the night and take a bath. My bottom was so raw it hurt to sit. I was on pain meds. I tried all sorts of ointments and decided that vaseline worked best. I would clean down there with just water after each trip to the bathroom and then just use vaseline. It helped alot.

    Unfortunately for me, it never got much better. I ended up with a colostomy 18 mos. later. I have alot of radiation damage.

    I also had the bleeding from the radiation damage. I had radiation colitis.

    Give it time, for most people it does get better.

    Hang in there.

    Email me if you want.

    Maureen
  • pluckey
    pluckey Member Posts: 484 Member
    #15
    Ostomy Association Board
    lots of people post about their post-reversal scenarios and tips for managing.

    Kim, I hope you get relief soon, I know how painful and exausting this can be

    ((HUGS)) Peggy
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #16
    pluckey said:

    Ostomy Association Board
    lots of people post about their post-reversal scenarios and tips for managing.

    Kim, I hope you get relief soon, I know how painful and exausting this can be

    ((HUGS)) Peggy

    Kim
    I am sorry you are having problems but i hope you feel better soon.

    michelle
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #17
    You are in my prayers,get
    You are in my prayers,get well soon!
  • tiny one
    tiny one Member Posts: 465 Member
    #18
    saying prayers
    I remember sitting in the tub and sobbing after my reversal, I was hurting so bad. For me my reversal was harder than anything I've ever been thru. Saying prayers for you to get relief fast.
  • Shayenne
    Shayenne Member Posts: 2,342
    #19
    tiny one said:

    saying prayers
    I remember sitting in the tub and sobbing after my reversal, I was hurting so bad. For me my reversal was harder than anything I've ever been thru. Saying prayers for you to get relief fast.

    You Poor Thing!!
    I just want to give you big hugs Kim, and tell you not to give up, don't let this get you down, it takes time for the body to heal, and alot of time to retrain bowels, and urine! You can do this, I know you're a strong woman, and I would ask the onc for any kind of help with the rawness, I would try the baths and all, but don't give up yet, it's rough on your body having any kind of surgery, you got alot of good thoughts about what my help, and even that ostomy site may also help you, I know people have it bad for awhile, and sometimes, things do get worse before they get better.

    Just look forward down the road at how happy you will be in awhile, once you get through this, and don't look back. Take it one day at a time.

    Hugsss!
    ~Donna
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #20
    I hope you feel better soon!

    I hope you feel better soon!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #21
    So Sorry, Kim
    I'm so sorry that you are in this kind of pain - I went through that for several years - yes, years, before things calmed down for me - of course that will not be the same for you - I'm an unusual case.

    Radiation does much damage to the intestine - and anytime that you mess with "the plumbing" there are going to be issues - it takes time for the bowel to re-train to what's been done with it - either temps or permanent or back to re-hook ups. The bowel does not like to be messed with and lets us all know it when it has been.

    When the pain is unbearable, I would go sit in a hot bath - a hot bath. For some reason, very hot water will NEUTRAL out the pain. The hot water hits those anal tissues and the pain sorts of cancels out - about 15 minutes should do it at a time. Anusol creme spread liberally in the affected area will also help - it is a creme that does not burn and is kind of soothing.

    Bleeding is always unnerving, and is a possible result of the surgery itself. I understand being up at all hours of the night and having to go throught that, while everybody sleeps...our road is never an easy one and is very hard to understand - even for us going through it.

    Anyway, my road was 2-3 years of complications and all the things that you described - I thought I'd never see the end of it and questioned everything, but eventually around the 3rd and 4th year, things got better FOR ME - not you, you will be quicker than this...I did not have a temp or permanent ostomy, I went the hard way and paid for it. But I'm just letting you know that I still had the problems that many of you go through with these procedures.

    I am praying for you and hoping for some relief and recovery to beg9in - one day you will be posting and this will be all behind you. (I'm sorry, no pun intended) :)

    We're not Semi;Colons for nothing are we?

    Do take care and thanks for sharing your story - I do hope your pain eases up and goes away very soon.

    -Craig

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