Seeking Support and Advice for Life After Ileostomy and Stroke

I woke up with an ileostomy in July of 2021 and learned that it was a life or death decision my mother made while I was in a coma. I went through the painful recovery of a major surgical wound in my belly both mentally and emotionally, as well as months of stoma issues. I spent months in the hospital and rehab learning life again and suffered a stroke during this time. I haven't been able to walk since waking up from a coma. Complications from the stroke and prolonged inability to walk have made life extremely difficult. It's been a challenge to get around this obstacle course with every turn an extreme battle and at times being stumped. I'm the type of person who doesn't take no for an answer and will find a way to make it happen. I'm at that point where I need to reach out for support and help from others who are thriving with this. I'm hoping someone has ideas I haven't learned of. I look forward to learning. Thank you.

Hiya:

You've been through a lot - you have the right attitude. Never take no for an answer - you've got this and we're all here to help!

Hi Besgurl, welcome to the site. I'm so glad you found us. It sounds like you have been through a really hard time and have lots of issues to deal with. There is lots of help and support here, and although we are not professionals, sometimes the experiences of those who are living with a condition are more helpful. We are all here to answer any ostomy-related questions you might have. Don't hesitate to ask anything and there are no dumb questions.

Terry

P.S. My in-laws live in Kailua, lovely place!

Hi Besgurl, I can't imagine going through all of the physical and mental challenges you've faced. I do know that going through something that's not in your control, like your initial surgery (which your mom made with your best interests in mind), can affect you emotionally so much. I think all of us on here are on a spectrum. We all have different experiences but we all ended up with an ostomy of some sort. We've experienced emotional trauma, PTSD, anger, despair, all of it on some level. I hope others can give you the support you need, others who may have gone through something similar to you.

Feel free to ask anything... I found it helps even when all you need to do is vent when most people don't understand what WE go through day to day. I myself went into the hospital in May 2020 for a simple procedure, had complications after. Woke up a week later in a different hospital after being put in a medically induced coma with tubes in my neck and throat. While still recovering after septic shock and kidney failure in August, I needed another surgery and woke up with an ileostomy due to the same reason as you, made by sister to save my life. Then with the stress, I had a mini heart attack and it took months to learn how to walk again and didn't leave the hospital until November of 2020 and caught Covid just before I was released. It's been a long 2.5 years and I now have CKD stage 3 because my kidneys shut down for the second time last February and I just recovered from a fistula in the duct of my pancreas and got rid of my JP drain finally after 6 months. So I can understand the frustration AND a lot of US here can and support each other! If it wasn't for this site, I don't know what I'd do at times.

Words of Encouragement from Ostomy Advocates I Hollister

You are having a very challenging, painful time. Try to find an escape that brings you pleasure. Listen to music you enjoyed in the past that reminds you of happy times, listen to podcasts or talk radio shows, paint or draw, watch TikTok shorts. I enjoy watching children doing funny antics or people dancing. There was even a handsome man on TikTok changing his ostomy bag. The moments when you are enjoying yourself help the body to heal. Many of us have had long periods of illness, very hard days. Take life one day at a time. Read "Kitchen Table Wisdom," a book about faith and healing. Stay

Aww Terry, thank you for replying and your kind words. Such a thrill to hear you have family here, let alone the same town as me. Woohooo! If you're ever here you better give me a heads up. Would love to meet up. Keep in touch and let them know I said aloha.

Wow, Serena, all too familiar. Thank you for sharing. It brings me to tears to finally have others who understand, literally. I really felt hopeless many times during these last two years. If it wasn't for my faith in Christ and my daughter - I wouldn't be chatting with you right now. So thank you for reaching out and being open with your story. I firmly believe nothing is coincidental. I look forward to learning more about the happy and joyous moments in your life. Feel free to keep in touch. Until next time. God bless you!

Thanks, Lori. And so true. I appreciate you reaching out and sharing. I firmly believe we can all help each other in some way - if not with similarities then with the underlying root of it all. To know that there are others who understand the varying challenges on whatever level. Please keep in touch and stay warm.

Feel free to use my info, and you're welcome anytime!

Hello besgurl.
Welcome, and thank you for sharing your story. I am so pleased to see that you have already had some helpful and understanding replies to this post. Life can sometimes turn out to be unexpectedly difficult at times but it looks as if you are facing it with the right sort of attitude to pull you through.

It is understandable that on an ‘ostomy’ site like this, you do not say very much about how the stroke has affected you. Strokes  can have a devastating effect upon people’s lives both physically, socially, and emotionally and, when coupled with coping with a stoma, life could get very complex and difficult indeed. 
I draw attention to this because; at present I am gradually compiling a collection of rhymes for stroke survivors. Hence, if you are inclined to let me know how this aspect of your life affects you and interrelates with coping with your stoma, I would be pleased to try to translate those experiences into rhyme.
I leave you with a sample of the typical, topical sort of rhyme I often compose:
Best wishes

Bill

IMAGINE A STROKE AND STOMA.

To put this rhyme in some context
imagine what in life comes next
if we had a stoma and 
a stroke, to take away one hand. 

I have pondered implications
of this unwelcome situation
because, like many other folk  
I know I’m at-risk of a stroke. 

I’ve seen what strokes have done to folk, 
and I must say it is no joke
to see how hard it is for them
coping with the stroke’s mayhem.

Paralysis of leg and arm 
is often not the only harm
a stroke inflicts on humankind,
for it can also hit the mind. 

Some strokes cause dysphasia,
and some create amnesia
which can be quite significant
for a sick communicant. 

Imagine trying to explain
all that angst and complex pain
accompanying stomas and
getting folk to understand. 

When managing my stoma I 
need both hands and mind as I apply
my bags, or empty them when full,
if I am to be successful. 

Imagine what it might be like
if a major stroke should strike
and we do then not have the skills
 to cater to our multi-ills.

                                         B. Withers 2022

Welcome

Married, where's this handsome man on TikTok changing his bag? Asking for a friend!....

I so agree with your advice. Sometimes we can get so wrapped up in our difficulties that we miss opportunities to engage in things that bring us pleasure. I've been listening to a radio show every morning for the past thirty-seven years that has made me laugh when I didn't think it was possible.

Search for Mr. ColitisCrohns.. nice stomach muscles too.

Welcome,

I am so glad you have your faith and your daughter. I don't even have words for the trials you and Rose have gone through, with strokes, comas, and everything. It is a lot to get over mentally. I find myself still struggling with it at times. I just wanted to say that you are in my prayers and feel free to message any time.

Hi besgurl, you have the right attitude, and as for the Ileostomy you will be changing and replacing it as often as needed and after a time it just becomes second nature. Stay in touch with us and ask whatever you need an answer for.

I like that you mention many of us have been ill for a long time. I'm grateful that I'm better now, not great, but much better.

You've got this and this group will help you in ways you'd never imagine. My husband had a stroke (dominant side affected) in 2005 and an ileostomy last year. He is nearing 80 years old and I do his ostomy care. However, the ostomy nurse in the hospital did show us some videos of individuals doing ostomy care with one hand. We had some crazy issues since the surgery but this group is always ready with suggestions to try and some have really saved us. Good luck to you.