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My sister--a new ostomate

dls
Posted by dls, on Wed Apr 24, 2019 11:31 am

On March 4, my brother-in law found my sister in her day room. She did not recognize him and was clearly ill.  At hospital, she was found to have a fever of 104F, a ruptured diverculi (sp?)--seriously ill,  Emergency surgery saved her life, but she awoke with a colostomy.

She wil be coming home tomorrow, April 25, a long time since March 4.

She is lost. Unike my situation, cancer, I had months to study, meet with people and learn everything I could. I expected to have a stoma when I awoke from surgery, I even knew where it would be located.

My sister has had none of this.  Total surprise and not a happy one.  Her husband is wonderful, she couldn't ask for a better man.  He's learning right along with her but they are not getting good advice and my sister does not have an assigned ostomy nurse as I did so she getting sketchy info at best and questionable advice as well.

Back story later,

I really need everyone's help, especially those who acquired their stoma unexpectedly.  We've been talking a bit, my sister is still too ill and her husband is constanly running around getting things for her and her homecoming.  He's exhausted.

What do I say to her?  After 17 months of Stomy, it is difficult to tell her that, once learned, this is no big deal, and learning all the new procedures and trying out all the new products will take your mind off things allowing you to settle down and gain acceptance.  She doesn't believe me.  

My only is sister is five years my senior, both our parents are dead.  Although she has a fantastic marriage and great husband, she is afraid, angry and not getting the kind of support they both need.  I'm mortified.

Many reading this have been through it.  Please reply with all and any ideas, esp. those that worked for you.  My sister is in a bad place right now and an attitude change will make all the difference.  She needs me and I want to give her the best support I can.  help...

Reply by Angelicamarie, on Wed Apr 24, 2019 12:11 pm

Dls... It’s frightening period,  to wake up with a pouch. The wonderful part is you love her and she loves you. You have went through it, no matter who talks to her, the acceptance has to come from her. It’s new and of course she’s scared, her life will be different. Talk from your heart.. it may seem like she’s not listening  but she will hear you. If I can help, let me know. 

Angel

 

Reply by Kitran, on Wed Apr 24, 2019 1:41 pm

Got mine last Sept. not as bad as I thought it would be

would be. Never felt better than I do now .

Reply by OrlandoNewbie, on Wed Apr 24, 2019 2:49 pm

Bless her, I can understand her feelings.  I felt rough for a few days until it developed into intense pain and fever.  My partner pretty much dragged me to the ER where they discovered burst intenstines due to diverticulitis; the surgeon said I had about 70% more infection throughout my system than he had ever seen before. My partner saved my life, as I was completely out of it and unaware of the passage of time.  Of course, I, too, woke up with a colostomy.

Between the fever, the sickness, the op, and pain meds, I can't say I remember much...and what I do remember is confused with some hallucinations.  The following months were surreal, two weeks in ICU, a month of recovery at home, back to work, back into the hospital for a reversal, another incident in hospital that resulted in a iliostomy, more recovery, finally a reversal of the iliosotmy, more recovery...and now back to my new "normal".

During all this, there was always something to be done; PT, learning to take care of my stoma, dealing with travel, getting back to work.  But as I tried to return to a routine, I found myself uninterested in most things, constantly tired, and without motivation.  In a word, depressed.  Doing a little online research, I discovered that depression after major surgery is common.  Anasthesia is essentially a controled, reversible coma; much like a reboot when they wake you up and it can cause some synapses in the brain to not refire in the same way for a while.  Add to that the invasion to the body of surgery which is traumatizing, both physically and mentally. Then there's the pain and discomfort, a lack of mobility, and increased dependency on others.  Quite a cocktail of issues to deal with!

Having a bit of your internal organs hanging out your side and having to deal with a bag full of excrement is bound to make anyone question their body image and self esteem.  Even in the hospital, my partner would help me to the toilet; when I came home, he would empty my bag (he did draw the line at dealing with my surgical wounds, but I was fortunate to have a home wound nurse).  One day early on, I just blurted out, "we're never going to have sex again, are we!"  It took me months to even cuddle with him again, and that lack of touch when it has been so much a part of your life had to have contributed to my feelings of despair.  Of course she's in a bad place, she's vulnerable, scared, and probably wonders (as we all have) if this will change people's attitudes toward her.  And how she regards herself.

I approached it like an alcoholic: one day at a time.  I will say that finding out that depression was to be expected improved my mental health as I learned it wasn't entirely my failing.  It was also a great help to admit to my son and my partner that I felt depressed, so I could put my energies into overcoming it rather than hiding it with a brave face.  Encourage her to talk and let her talk; everything doesn't have to relate to what you (or I) went through as her situation is unique.

You don't say what kind of insurance she has, or if she has insurance.  With all that's on your sister and her husband's plate right now, perhaps you could call her insurance company and see if there's some home nursing included.  Both times, my wound nurse helped and taught me about stoma care.  Perhaps you could research services that would be able to offer an ostomy nurse, even if it's just an hour a week to help them with progress.

You could also order a range of samples in her name, to find out what products are most comfortable and efective for her.  That way, you also get lots of sets of instructions to learn more.  Ordering and aquiring supplies was stressful in the early days, fearful that I would run out!  It's a worry you can bear for them.

Is her coloctomy reversible?  That also impacts one's attitude toward it --- for better or worse.

I'll be a year since my emergency surgery on June 4; what a long, strange trip it's been!

And your sister is still at the beginning.  Listen to her.

Love to you and wishes for the very best of luck along the way.

 

 

 

Reply by OrlandoNewbie, on Wed Apr 24, 2019 2:55 pm

Ah, one other consequence of major surgery I wish someone would have mentioned earlier --- I lost at least a third of my hair.  When I asked my surgeon about it, he suggested taking biotin (OTC vitamin).  It has helped immeasurably.  The hair loss didn't start for a month or so after the op, and I only wish I would have known sooner as it was yet another way my self-image was diminished.  

Watch for the signs of hair loss with your sister!

Past Member
Reply by Past Member, on Thu Apr 25, 2019 5:00 am

I'm so sorry to hear about your sister.  I know how very hard it is on her to adjust. She'll make it through, though...just like you did.   She has one thing that is very positive and valuable beyond measure to help her through this ordeal,  that you didn't have.    She has you.    

dls
Reply by dls, on Thu Apr 25, 2019 8:18 am

Thank you.

Reply by Puppyluv56, on Thu Apr 25, 2019 9:38 am

Donna,

wow! I am so sorry to hear this and I know what you must be going through as well! Thank goodness she has you! Maybe you can talk her into joining this site to see that we all have accepted our Ostomy, not always an easy path but eventually we get there. Does she live near you? I know your healthcare is the best so hoping she can hook up with some of your providers to get the medical support she needs! 

Praying for you both and hubby! 

Reply by tcramsey1947, on Thu Apr 25, 2019 10:11 pm

mine was of my chosing and I'm very happy with my ostomy. 

Reply by Mrs.A, on Wed May 01, 2019 4:08 pm

I too am sorry to hear about your sister. Sometimes no matter what is said to us whether we have experience or not, it's going to take time for her to adjust and learn how to accept what life has handed her and her husband. You can say all the right things, show her how you've learned to move on but she needs time. Guide her as she asks for assistance. Being there when they need you isn't always easy but it's all I think you can do besides pray. If you believe in prayer use it for all of you, God will make a way.

Reply by Puppyluv56, on Wed May 08, 2019 2:19 pm

Hey Donna,

How is  your sister getting along? I hope by this time she has accepted his and is trying to move forward! 

Keep us posted! 

Candy

dls
Reply by dls, on Wed May 08, 2019 4:24 pm

I really don't know. First of all,thank you to all for your good advice and lengthly explanations.  I called my sister the day she came home..well, long story, short-good bye and don't bother me.  This is too bad, my sister's husband hates me..he's there and I'm not and he really does take wonderfual care of her.  However, he does not have an ostomy nor is he brilliant, curious or competent. He's a loser who really, really hates me.  With my husband dead and my mother gone, I'm his last target.  My sister will not accept her situation until she has more control and choice in the entire situation--access to new products, groups and info.

As to my sister on this site, HA.  She and her husband are complete Luddites.  My sister has a circa 1996 computer that she uses as a typewiter.  She has never saved anything to a 'floopy disc' or CD. They don't own a CD or DVD player.  Neither of them can log into the Internet. My sister does have a cell phone which she uses for one purpose only--to make and receive phonecalls.

When she needs me she'll call, and  I'll help anyway can.

 

I'm as confused as all of you. I should havew known better, given my brother in law, the original Jerk.

Reply by Little Red, on Wed May 08, 2019 4:47 pm

 Oh My  so sorry you and your sister are not closer,  I know what you are going thru  I thank every day I have more than one sister,  one and I are close but I am in Il and she is in Arizona.     I also had ememgency surgery because of a rupture and infectrion,  I went to a CT scan  woke up in ICU with a colostomy,   was in Rehab for 8 weeks,   But thanks to my Primary Care Dr;s RN  she put me in touch with a support group at a local hospital that has 5 ET RN's   Thank god for them,  all I have to do is pick up the phone,  and I found this group  and they are the greatest.   Your sister  is living her own life ,  and her husband may be a jerk  but she is the one that chose him nd has to live with him.  All you can do it to love her and be there if and when she sees the light and  needs you.  So You take care of you  .  You are number one.

 

Reply by OstomySister, on Thu May 16, 2019 10:14 am

My brother had his emergency surgery last year end of March. We we’re told that he has an obstruction and needed the surgery done immediately. They explained what an ostomy was and provided us with information but they said there’s no guarantee he was gonna get one until surgery was performed. When he woke up he was devastated he has an ileostomy, on top of that, the diagnoses of small bowel cancer wasn’t good either. It’s been a year now 7 operations later and he still feels depressed about his ostomies. Now he has 2, an ileostomy and a non-functioning colostomy. I’ve been his support since day one, I’ve changed all his pouches for him. Until now he has not accepted the ostomy fully. We’ve hired therapist to help him out but like everyone says, the acceptance has to come from him. All you can do is help and be there for them when they ask. I’ve encouraged him to also chat with his friends constantly on the phone on Facebook. I’ve contacted his friends to encourage him and gave them information what an ostomy was.  

I hope everything goes well for you and your sister. 

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