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Struggling after my reversal operation

Annabelle41415
Annabelle41415 Member Posts: 6,712 **
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

Comments

  • Buzzard
    Buzzard Member Posts: 3,043
    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
    Oh Kim!
    I'm so sorry to hear this. I'll be praying for you tonight.

    Diane
  • dorookie
    dorookie Member Posts: 1,731
    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
    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
    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
    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
    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
    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
    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
    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
    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
    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
    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
    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
    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
    You are in my prayers,get
    You are in my prayers,get well soon!
  • tiny one
    tiny one Member Posts: 465
    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
    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
    I hope you feel better soon!

    I hope you feel better soon!
  • Sundanceh
    Sundanceh Member Posts: 4,392
    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
  • GOOFYLADIE
    GOOFYLADIE Member Posts: 232
    Hi Kim
    I am so sorry you are having so much trouble. Do they have you on bland food. This with soft semi solid food helps. I am on Lialda for ulcerative colitis. I think probably a sulfa drug like mezlasalmine I am sure I spelled it wrong It will slow down the number of time you have to go to the bathroom also adding benefiber will stop this. Along with Lomotil I know alot of you think taking fiber will make you go to the bathroom. But when you are running to the bathroom metamucil and benefiber actually add bulk to stop the runs; sorry for lack of a better word.

    Sometimes when I was on chemo and couldn't seem get off the toilet the doctor would tell my husband to bring me in I was probably dehydrated etc... it was a two hour drive. I never had an accident ever. We never stopped so, maybe forcing yourself in a car for a short ride around the block or store to change atmosphere and worry. Might be a needed medicine. Worry can mess with a whole lot of our system. Just because we THINK SOMETHING isn't right. It might be worth a try. I just wanted to share what helped me. Because I would spend 3 days on the toilet but be able to drive 2 hours to the doctors no problem. I guess I felt secure knowing help was on the way, and not so scared with the doctor going to be right beside me!! Lots of love , Goofyladie (Cass)
  • scouty
    scouty Member Posts: 1,965
    Try to hang in there Kim
    I was where you are almost 4 years ago when I had my colostomy taken down. It was so bad, I wore ultra thick absorbing Depends. They had to be really baggy so they didn't hurt my incision or my burning bum so you can imagine the sweats and pants I wore with them! It took what seemed like forever for me to ID foods that set me off (some still do and I still get that red blood)but it did get better. The foot I had removed was was on the "lower end" of my colon and I was told that it takes time for everything to sync back up with absorbion so I tried to be really patient. I don't like to take any kind of meds so I just tried to learn how to handle/manage it instead of it managing me.

    I did think about getting a permanent colostomy but told myself to give it 6 months, then after 6 months and things were a little better I went for another 6 months. Then it seemed much better and here I am 4 years out of surgery and am glad I was patient.

    That all said, it was tough. Unless you've had a bag you don't understand how "easy" it does make some things. After 2 1/2 years with my bag, my spincter definitely had to get re-educated.

    The blood you are seeing is probably bright red and is from you raw bum, but it is good you are getting it checked out. Let me know if I can help. I will go back and read what some of my triggers foods were if you're interested.

    Lisa P.

    PS. You have been thru so much and I know you are sick and tired of being sick and tired but hang in there, it will get better.
  • jillpls
    jillpls Member Posts: 238
    powder helped me
    Hi I went through the same issues. I'd lay in the warm bath and that helped a lot. Then I would use baby powder made with 100% cornstarch. This would help a lot. I also used a squirt bottle to rinse myself instead of wiping. Then I would pat dry and load up on the powder. ONce the bleeding subsided, I use a cream that had the highest amount of zinc to protect my skin. Calomoseptine was good but not when there are open wounds. It would sting then. I also used immodium but be careful with it. Good luck and Trust God to help you make the right decisions.
    God less
    Jill
  • khl8
    khl8 Member Posts: 807
    Kim I am new to this
    Kim,
    I am new to this site, but I just had my takedown in September. I had the same problems, the constant going to the bathroom, if it gets too bad and it is like diareah, try immodium. I now only go about every 3 days and then on the third day, I go alot. It still gets sore, but I am using bath wipes to clean myself and that helps alot. It keeps the skin from getting raw. And of course you have to relax, I know it is hard to do, but you have to try. This will help.
    Kathy
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Thank you all
    I want to thank you all for your responses. The nurse called me today and doctor wants to see me first thing in the morning (Tuesday). I'm not sure what he plans on doing, but I'm glad he didn't want me go to emergency like the nurse suggested - it's not bleeding when I don't go to the bathroom.

    I can't take a bath right now due to the open wound. I am going to ask about a sitz bath tomorrow, but nurse on Friday said she would wait and ask the doctor because neither she or I know what was down "down there."

    I will let you know how it goes tomorrow.

    Hugs! Kim
  • PamPam2
    PamPam2 Member Posts: 370

    Thank you all
    I want to thank you all for your responses. The nurse called me today and doctor wants to see me first thing in the morning (Tuesday). I'm not sure what he plans on doing, but I'm glad he didn't want me go to emergency like the nurse suggested - it's not bleeding when I don't go to the bathroom.

    I can't take a bath right now due to the open wound. I am going to ask about a sitz bath tomorrow, but nurse on Friday said she would wait and ask the doctor because neither she or I know what was down "down there."

    I will let you know how it goes tomorrow.

    Hugs! Kim

    help
    Hi Kim
    One thing that helped me a lot, and still does when needed, a cream called proctozone HC, it is prescription so maybe your doctor can get you some tomorrow. I suffered a long time as you are doing, took countless hot baths, tried sitz baths, used over the counter creams and tucks before I got the proctozone from the doctor. I also had to give up pepper, and hot-spicy foods, what burns going in will burn coming out. Another thing that helped was as others said, adding fiber, I use milled flax seed, you can get it in the baking isle at wall mart, or health food stores, a tablespoon a day works, can put it in yogart,on cereal, on salad, bake with it, I just put it in water and drink/chew it down, it has a good flavor. I am four years out from my reversal, it took a long time to get where I am now, and I continue to be careful what I eat, take my fiber, avoid hot spices, and take a stool softener daily. Hope you get some relief soon.
    Pam
  • tiny one
    tiny one Member Posts: 465
    PamPam2 said:

    help
    Hi Kim
    One thing that helped me a lot, and still does when needed, a cream called proctozone HC, it is prescription so maybe your doctor can get you some tomorrow. I suffered a long time as you are doing, took countless hot baths, tried sitz baths, used over the counter creams and tucks before I got the proctozone from the doctor. I also had to give up pepper, and hot-spicy foods, what burns going in will burn coming out. Another thing that helped was as others said, adding fiber, I use milled flax seed, you can get it in the baking isle at wall mart, or health food stores, a tablespoon a day works, can put it in yogart,on cereal, on salad, bake with it, I just put it in water and drink/chew it down, it has a good flavor. I am four years out from my reversal, it took a long time to get where I am now, and I continue to be careful what I eat, take my fiber, avoid hot spices, and take a stool softener daily. Hope you get some relief soon.
    Pam

    sore tushy
    My oncologist prescribed that cream for me, you would've thought my surgeon would've. It is wonderful, it has a numbing effect. It's hard to heal the area when you go so frequent. Alot of my problem was from the radiation I had. For those of you just having your reversal, it has taken me almost 2 years to see improvement. Kim good luck today. Hope you get some good pain relief.
  • lizzydavis
    lizzydavis Member Posts: 893
    tiny one said:

    sore tushy
    My oncologist prescribed that cream for me, you would've thought my surgeon would've. It is wonderful, it has a numbing effect. It's hard to heal the area when you go so frequent. Alot of my problem was from the radiation I had. For those of you just having your reversal, it has taken me almost 2 years to see improvement. Kim good luck today. Hope you get some good pain relief.

    Hi Kim,
    Hi Kim. I have not gone through what you are going through. My colorectal surgeon did suggest the baby cream - Desitin for soreness and the brat diet after my colon resection. Bananas, rice, applesauce and toast. I hope you feel better soon.

    Hugs,
    Lizzy
  • lmliess
    lmliess Member Posts: 329

    Hi Kim,
    Hi Kim. I have not gone through what you are going through. My colorectal surgeon did suggest the baby cream - Desitin for soreness and the brat diet after my colon resection. Bananas, rice, applesauce and toast. I hope you feel better soon.

    Hugs,
    Lizzy

    Hello
    I will keep you in my prayers. But just remember all that you have been through already. You have just a little more and you are strong and you can do it!