Trouble With Colostomy

Hi - My mother is dying of stage 4 colon cancer.  She is now under the care of hospice at our home.  We're a little confused with some issues happening with her colostomy.  Here is a little history.  She had her second surgery for a bowel blockage mid June at which time she was given a colostomy.   Things seem to be going along fine until 9 days ago when the colostomy quit putting out at all.  She since then is vomiting on a daily basis and sometimes several times a day.  It usually has a very bad odor (stool) and generally comes out in a projectile fashion.  In the last two days we have had a couple of vomits that have no odor or a medicine like odor, it is not near as dark and she is having to struggle a little more to get it out.  My questions is has anyone else experienced this and if so could it be a sign that the colostomy might be trying to work again or that the blockage might be working itself free.  Any information would be greatly appreciated.

Amy 

 

I know that when someone is in hospice care, rules are different about what care you can receive. Lifesaving measures are withheld if the person is in the final stages of their life. Whether this problem with the colostomy qualifies for that, I don't know. It sounds like your mother has a blockage.  I know that a friend of my daughter's had a colostomy in June, and then recently had a blockage where nothing came out and he was throwing up. After being sick for two days, he was re-admitted to the hospital to have surgery to  clear up the blockage, and he is now back home again. Nine days sounds like a long time to wait.  Have you talked to your doctor? And what do the hospice caregivers say about the situation?  

 

On 7/16/2008 louiseg wrote:

I know that when someone is in hospice care, rules are different about what care you can receive. Lifesaving measures are withheld if the person is in the final stages of their life. Whether this problem with the colostomy qualifies for that, I don't know. It sounds like your mother has a blockage.  I know that a friend of my daughter's had a colostomy in June, and then recently had a blockage where nothing came out and he was throwing up. After being sick for two days, he was re-admitted to the hospital to have surgery to  clear up the blockage, and he is now back home again. Nine days sounds like a long time to wait.  Have you talked to your doctor? And what do the hospice caregivers say about the situation?  

Thank you for your quick response.  Your right when their in hospice you pretty much commit to not going to the hospital.  My mom is at the point where surgery wouldn't be an option any way.  When they did the colostomy we knew that it would be a very short time before she would have another blockage.  While in doing the last surgery her whole abdominal and pelvic area were full of cancer.  We were just hoping for a miracle.

I am so sorry about your mother. My mom just died in February only 3 weeks after being diagnosed with lung cancer. We felt so helpless. Now my husband is beginning his second year battling colon cancer. I often go on the NPR blog at http://www.npr.org/blogs/mycancer/ written by Leroy Sievers about his struggle with colon cancer that has spread. Sadly, after battling for several years, he seems to be losing the fight. His thoughts, and the many comments by his loyal followers have helped me through some difficult times. You might want to check it out.

Hi Amy,

I would question the Hospice people as to whether hospitalization for this problem might actually be considered palliative (comfort) care rather than an attempt to save her life. It really does sound like she has a blockage, and from what you say, that is to be expected, but to make no attempt  to keep her from suffering because of the blockage is inhumane on the part of medical personnel.  Surely in the hospital they could relieve her symptoms without doing further surgery - decompression of the bowel with a Miller-Abbott tube would clear stool that isn't being passed and stop the vomiting.  Administration of parenteral nutrition and lipids  would result in very little if any production of stool, while at the same time keeping her hydrated and supplied with vital nutrients. I see no reason why the Hospice staff shouldn't be able to help you manage this kind of therapy once she comes back home - if they can't, find out if you can get visits from a home health nurse in addition to the Hospice staff.

I am a firm believer in the principles of Hospice, but they are like any other health care organization - their policies aren't infallible.  If you don't get any where with the Hospice people, I definitely would go around them and contact your mom's doctor yourself.  A patient or the primary caregiver has the right to do that, regardless of whom is in the home helping with care.  If the doctor agrees to look at providing more aggressive palliation and Hospice puts up a fuss, you're gonna have to go with what you think is best for your mom.  She probably is eligible for home health care, or in light of the situation, if she has insurance, the insurance company may be willing to work with you to find alternatives other than Hospice.

I don't know what kind of answers you're going to get, but if you want to see your mom spend her days with more dignity and less suffering, checking it out certainly is worth the risk of being told no.

I wish your mom the best that her health can be, and I hope that you and your family will remember to take good care of yourselves as well as her.

Sincerely, Tre

Hello Tre,

Thank you so much for taking the time to reply with such great concern for my family and our situation.  We find this site and the kind people who respond most up lifting. We agree with you whole heartedly on how inhumane it is to watch her suffer and not be able to do a thing for her except make her as comfortable and let her know were all here (6 children) and love her dearly.  I want to give you the history of my mom so you know why we have had to make the decisions we made.

My mom went in for emergency surgery April of 07 at which time they removed a tumor the size of an orange with mets to the ovaries, uterus, pelvic area and lots of little seeds on the back of the small bowel.  She recovered from surgery and immediately started aggressive chemo.  After a year of chemo you can only imagine what kind of shape she was in, very weak, tired and sick.  Her pain had gotten so bad that we checked her into the hospital.  It was there they discovered she had another bowel blockage and had to do emergency surgery (that was mid June).  When they opened her up she was filled with cancer, they were lucky they could pull enough bowel out to create a stoma, they told us it wouldn't be long before the bowels got blocked again.  We didn't have her home from the hospital but about three weeks when the stoma stopped working.  Thats when the vomiting started.  We thought about doing the NG tube because Hospice said they could do it bedside but my mom very strongly refused (she had NG tubes twice before and said she would NEVER do it again).  She said she would rather throw-up.  We stopped the TPN because it wasn't changing the nutrition number and we just felt it was prolonging things and feeding the cancer.  We were with the Home Health Care and just about a week ago we switched to Hospice which fortunately for us it was the same organization so we got to keep the sames nurses and the aids.  They really have been wonderful and said they would do anything we asked of them, they also said we could go to the hospital if thats what we felt we should do.  After the last hosital stay my mom said she never wanted to go back.

Boy sorry that was so long.  I just wanted to give more details because I know how helpful it might be for someone else to read if they are dealing with the same issues.  I know we always had lots of questions and just wished we could have talked to someone whose case was similar.

Thanks again Tre and please if you have anything else to add we would welcome your suggestions.

Amy

 

I am VERY sorry to hear about your mother, I hope that she didn't have to suffer and that the end was peaceful for her.  I will keep you in my prayers for your battle ahead with your husband.  I responded to an email from Tre that I hope you might find helpful if your husbands situation becomes worse.  My family just lost our dad to what was ultimately colon cancer this past August (17 month battle in and out of hospital) and now we are taking care of my mom so if you ever need to talk or would like to know more about my moms case please don't hesitate to send me an email.  I know we were always looking for someone who had a similar situation as my mom.  Thank you for the website I will be certain to check it out.