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SqueakyandLiza
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February 6, 2020 8:18 pm  

One year ago today, I was at a follow up with my surgeon's assistant and it was a culmination of the preceding 10+ months, starting with what I thought was a stomach bug, which eventually led to an ambulance ride and the emergency removal of my colon and a wound which will not heal.  Other than being alive and the outpouring of love from family and friends, there was not much positive from that time leading up to my appt on Feb 6, 2019.  At this appt, Tim (the surgeon's assistant), while removing my vacuum pump wound dressing to check my wound, made some comment about my ostomy being permanent.  That was the first time anyone had told me that, and it was very upsetting to me.

Today I have been reflecting on my life, since that day, and thought I would share some of the highs and lows of this last year.  Some I have already shared here, and others I have not been ready to share.

A year ago, I still had the wound pump, so was unable to leave the city where I live.  Over Easter weekend, we had a visit from our very good friends, who we usually visit in Boise, where they live.  Then my mom and her boyfriend came up the next night for a visit.  Since my mom had suffered a stroke in November, it was especially nice to see her and spend some time with her.

In May, we met with the surgeon, and he gave me some hope that I could still possibly be reconnected, and he also decided that maybe the wound pump was keeping the wound from healing, due to some tunneling under the wound, so he had the wound pump removed.  After 11 months of hauling that thing around the house, that was very welcome.  With the removal of the wound pump, came cessation of home health care and freedom.  My husband and I spent a couple days on the Oregon coast, which is my favorite place!!

In June, I became active on this forum, which was definitely a high point in my year.  I watched a lot of videos and started receiving support from the people here.  And I have developed some very good friendships here too.

A year ago, I was working from home.  In June, I returned to work at the office, which was a challenge, but at the same time felt like an accomplishment.  Then in September, I was informed that my job was being transitioned to the Boise Headquarters, so I was unemployed as of October 4th.  

In November my best friend's husband died, so we spent almost a week in California for the service and to be with my friend. 

Also in November I spent a night in the ER with a Crohn's flare up.  While there I had a CT scan, which lead to my primary care doc to order an ultrasound, which lead to an abdominal MRI.  As it turns out, I will need to have a hysterectomy.  Fortunately though, it seems that it can wait until the next surgery, whatever it may be (even if just repairing my huge hernia.)

In August there was another scope done of my rectal stump, revealing significant Crohn's, leading my surgeon to say that the only way to get my wound to heal is to remove the rectal stump.  Since that seems extreme, I have scheduled an appointment for a second opinion.  That appt is April 2nd.

We were able to spend the holidays in Portland with family this year, thanks to no longer having the wound pump, so that was a high.  Then a couple days after Christmas, I got a call that my dad has been diagnosed with stage 4 brain cancer, so that has been the lowest of the lows.  I was down there last weekend and spent some time with him.  

Though I still have an open wound, I am much healthier that I have been, so my husband who has been going a little stir-crazy the last 20+ months has started planning things for us.  We have tickets to 5 different concerts in 5 different cities ranging from March to September.  And we have our annual April trip to the beach scheduled.

I am anxious about my second opinion appt and of course my dad's health, but I wanted to thank you guys here, and especially Eric, for creating this website.  You have all helped me so much over the time I've been part of this group.


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LLNorth
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February 6, 2020 8:41 pm  

Quite a year, Liza. I am so sorry about your dad’s illness - my prayers for him, for you and all your family. I admire you for your endurance and your attitude, and your grace. Like you, I am really thankful to have found VeganOstomy and the lovely, supportive and understanding (and so often funny!) people here.  LL


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john68
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February 7, 2020 6:35 am  

Liza the ostomy journey can be the end of illness for many and unfortunately the start of trouble and treatment for others. I have always found in life every situation has a conclusion. Family friends and a surport network play a big part 👍


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sjlovestosing
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February 7, 2020 8:22 am  

Hi Liza,

What a year you have had. I am so sorry to hear about both your mother's stroke and your father's cancer. I certainly will pray for them and you as well. Your positive attitude is one of your strong points - though I do understand when it looks like your troubles seem to have no end in sight. Keep hanging in there. You are not alone in your battle. 

God bless,

Stella


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VeganOstomy
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February 7, 2020 9:53 am  

Thank you for sharing that. You've had many lows and some highs, but I can only hope that you are a stronger person now than when this all started. 

Thank you for allowing us to be part of your journey. 

 


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LK
 LK
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February 7, 2020 2:40 pm  

Liza...Way to go! I have vowed to keep track of my experiences with this side  of the  malabsorption thing in order to look back and hopefully see my accomplishments too. I have  enjoyed reading your sometimes trials and huge steps of accomplishments. Thank you for sharing this with us and for taking a positive  role I  going forward  and encouraging others here too! 

Keep up the good work!!!

Linda


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SqueakyandLiza
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February 7, 2020 4:06 pm  
Posted by: @llholiday

I admire you for your endurance and your attitude, and your grace. 

LL, that was one of the nicest compliments I have ever received. Thank you so much!


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SqueakyandLiza
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February 7, 2020 4:13 pm  
Posted by: @veganostomy

Thank you for sharing that. You've had many lows and some highs, but I can only hope that you are a stronger person now than when this all started. 

Thank you for allowing us to be part of your journey. 

 

Eric, 

Thank you for providing me with the means to allow all of you to be part of my journey. 

I think I am a stronger person now, in no small part, due to the support from the people here and all the information you have shared to help me, and hundreds of other ostomates, learn to live life with an ostomy. 

I don’t know if you imagined, when you started this website, how many people you would impact; and how many lives you would change for the better. Thank you so much, Eric! 

PS: One if the concerts we are going to this year is Barenaked Ladies!!!  My favorite! It would be the one I am most looking forward to, but Bon Jovi is a bucket list item, so it’s a tie. 🤣


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glenn.giroir
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February 9, 2020 12:23 am  

It can be a real challenge to live with a chronic illness.  I admire you guys so much for fighting the fight with such courage positive attitude.  You are all inspirations to me.  I hadn't given much thought to my disease until my surgery, but now it is nice to have support.  hang in there, and I hope all goes well.

 


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Tony
 Tony
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February 13, 2020 7:42 pm  

Liza,

I count you among the many whose perseverance simultaneously eclipses and galvanizes my own. I'm sure I'm not alone in finding your positive attitude inspiring and your sense of humor uplifting. Thank you for making us part of your trials and victories. ⏳


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SqueakyandLiza
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February 13, 2020 9:26 pm  
Posted by: @ileostony

Liza,

I count you among the many whose perseverance simultaneously eclipses and galvanizes my own. I'm sure I'm not alone in finding your positive attitude inspiring and your sense of humor uplifting. Thank you for making us part of your trials and victories. ⏳

Thank you so much, Tony.  That is very nice of you to say!!  I try to stay positive, but I was feeling like I've been falling short lately.  In many situations, I feel like you can either laugh or cry, so I try to laugh whenever possible.  

I was hoping this trip around the sun might start out a little better, but the day after I wrote this update, I slipped and fell in the shower.  I both cried and laughed at myself that day.  But after the initial shock (and some very sore knees), I picked myself up, dried myself off, and logged on to Amazon to order some anti-skid sticker things for the tub.  Even though it was a fluke and the chance of it happening again are slim, why not pad the odds?  🤣

Thanks for all the nice comments here.  I appreciate all the support. 😀👍


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LK
 LK
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February 14, 2020 5:47 am  

Liza...OUCH!!!  Good move ordering the stickers!  Make sure you put them on. 

I too enjoy your sense of humor and use of emojis! 😁 keep up the great  attitude and thanks for the chuckles! 

Linda


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SqueakyandLiza
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March 1, 2020 12:49 am  

My dad was moved from the hospital into a house today and started hospice care. I have been in Portland for about 6 of the last 9 days but I have to go home tomorrow. The whole thing is just heartbreaking. 


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ChrisandBagpus
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March 1, 2020 5:57 am  

Liza

You are an amazing person keep strong.

All I can say is you will alternate through moments of happiness, joy, funny, angry, sad, bitter etc. let them be. Your friends who don't know what to do in the circumstance - ask them to do something it will help them as much as you.

In life only two things are certain its how we journey from the one to the other that signifies to the world who are- love and blessing to you.


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SqueakyandLiza
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March 1, 2020 9:52 am  

Thanks Chris,

I have actually been struggling with sharing this news with my friends. I have told a handful of people and all you guys here, but it doesn’t seem like the thing you just post on Facebook or something. I’m sure I’ll figure it all out. 😕

Thanks again for your kind response, Chris. 


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john68
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March 1, 2020 10:26 am  

Hi Liza it’s a heart breaking situation and especially with a parent. Chris has given some great advice. And the best 


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LLNorth
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March 1, 2020 12:46 pm  

Thinking of you, Liza, holding you in my heart.


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SqueakyandLiza
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March 9, 2020 1:11 am  

Hi to my supportive ostomates. I just wanted to share that my sweet daddy passed away Monday morning at about 2am, less than 48 hours after entering the hospice home. 

We had the celebration of his life last night, which turned out to be really nice. 

It has been a rough week, emotionally and physically. I had a headache that wouldn’t go away all week and off and on chills. My husband texted his mom, a retired nurse to see if these could be due to grief. She told him that with everything I’ve gone through over the last 21 months, I’ve probably worn out my coping mechanisms and it could totally be attributed to my grief. (So this post is sort of ostomy related).

This is one of my favorite pictures of me and my dad, from when I was in college. 

1583730708-F5EFA8F4-8655-431F-B063-6BFCA79EA668.jpeg

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john68
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March 9, 2020 8:23 am  

Liza that’s very sad news, my deepest sympathies. I can tell by the photo you have a lot of happy memories to treasure ❤️🙏


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SqueakyandLiza
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March 9, 2020 9:17 am  

@john68

Thank you, John. And you are right, so many memories. 🙂

 


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