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Joined: 2 months ago
Posts: 1
September 4, 2020 9:43 am  

Hello Everyone! I have been looking around the site for weeks trying to get an idea of this new frontier we have been thrown in with my 83 yr old Mother. She has been independent, living alone, able to care for all her needs until August 24th. A simple gallstone removal turned into a bowel nick, removal of the dead colon, and a Ostomy. Sadly in the days to follow, we have not been introduced to an Ostomy nurse, given any education on care, and now she is being released from Rehab this weekend. Yes! This has been a complete nightmare. What we have learned we learned from this site as well as many Youtube videos! We are still struggling with how to care for the Ostomy and finding a home health agency that knows is ending empty-handed. We are also faced with severe malnutrition due to lack of absorption of valuable nutrients. We need vitamins and extra ways to get energy. We have been doing Boost and will do protein shakes.  Any ideas will be welcome ya'll!!! 

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Joined: 3 years ago
Posts: 1626
September 4, 2020 10:33 am  

Hi Daughterbrown, Welcome to the forum. I am sorry to hear how your Mother come to have her ostomy. Eric has a very comprehensive list of information that really you will not find together any where. The ostomy product companies are very helpful and will send samples plus they sometimes have an ostomy nurse helpline to discuss issues. Plus they can have access to delivery services etc. High energy drinks are a big help in replacing lost nutrients and fluids. As your Mum recovers she will be able too include more into her diet. Post any questions as folks here are only to willing to help and no one judges. Best wishes 👍

ileostomy 31st August 1994 for Crohns

LK, sjlovestosing, VeganOstomy and 1 people liked
Joined: 1 year ago
Posts: 628
September 4, 2020 10:45 am  

Hi DaughterBrown,

I’m sorry your mother hasn’t had access to a stoma nurse. They are such a great resource for a new ostomate in teaching about ostomy care and often providing some samples. The ostomy companies all provide samples too. 

Like your mother, I too was extremely malnourished when I got my stoma. To supplement my diet, I was drinking 2 Boosts a day with 20g of protein each. It took some time, but I finally got my levels to a good spot. 

With vitamins, I noticed some coming out of my stoma, so I went to chewable when I can find them. 

Your mom is lucky to have you helping her with this adjustment. It is a long and sometimes emotional road she is on. Especially if the stoma isn’t something she planned on. This website has been amazing for me and I hope you find help here too. 

Ileostomy 6/18/2018
“May your day be bright and your bag be light.”

LK and sjlovestosing liked
Joined: 7 years ago
Posts: 3006
September 4, 2020 2:03 pm  

Welcome to the forums, DaughterBrown!

I'm sorry that your mother has not been able to see a stoma nurse, yet. I'm not sure where you live, but telenursing may be an option, especially now that COVID has pretty much forced healthcare providers to switch to telehealth.

Malnutrition is no joke, especially if the problem is compounded by GI complications. If you have access to a registered dietitian who understands GI matters, then this would be a good thing to look into. 

Meal replacement shakes can be a great way to not only boost her nutrition, but it also gives her a "low risk" food option that is not likely to cause blockages or other stoma complications. 

Hopefully when her nutrition stabilizes she can return to a diet that's more like what she's been used to. 

Best of luck! And please feel free to post a new topic with any questions you have. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~

LK and sjlovestosing liked
Joined: 3 years ago
Posts: 456
September 4, 2020 3:31 pm  

Hello Daughter Brown,

Like the others, I  am sorry to hear of the difficulties you and your mother are going through. You will find a great deal of useful info here. Eric is  very knowledgeable and there are other ostomates who have been where you mother is right now. Don'tbe overwhelmed by it all. Take one step at a time, and remember, there are no dumb questions. This is new to both of you, and the more you ask, the more we as a community of ostomates, will do our best to help and support you both.

God bless and guide you,


LK liked
Joined: 3 months ago
Posts: 4
September 6, 2020 4:31 pm  

Hi DaughterBrown,

Welcome to the Forums.  I'm sorry that we had to meet like this but you have found a great group of people to help (I'm relatively new too).  I don't know where you're located but since you haven't had any success with your hospital/provider, you may want to reach out to:

1)  United Ostomy Associations of America, Inc. ( they may have a chapter near you that can get you in touch with an ostomy nurse or some of the other resources you need.   

2)  Gilda's Club - They deal with cancer patients, but they may have someone on staff that deals with ostomies or can lead you in the right direction. 

Don't ignore the fact that this is a life-changing event for both of you.  A close friend, Pastor or church member could be good just to vent and encourage.  We'll be here too!

Praying for Peace, Endurance and Healing,



A work in progress...
Colostomy - May 8, 2020 due to Cancer