Help!

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Lovethatgrey
Posts: 2
Joined: 2021-07-25 21:15:28

Help!

Post by Lovethatgrey »

Hello everyone,

My name is Karen. My husband David and I live in Houston TX. David has an ostomy and could sure use some advice.

In 2008 my husband was diagnosed with ulcerative colitis and In January 2018 he had his colon and rectum removed and now wears a bag. He's had many complications with the J Pouch not healing sufficiently so it could never be hooked up. Recently, he is having issues at the connection site where his stoma attaches to his skin. This area leaks bodily fluids (not poop) causing the adhesive on his appliance to let go sometimes within hours after a new appliance has ben put on. He has gone to see his surgeon about this but seems like he is not interested in helping him because he is told to see an ostomy nurse. When he has seen an ostomy for this issue they recommend seeing his surgeon. He's even gone to a different surgeon who promptly told him to go back to the surgeon that did his surgery. I feel so bad for him. I feel helpless that I cannot do more to help him. Any advice would be appreciated.

Can anyone recommend an ostomy nurse in my area? My zip code is 77095. Thank you.
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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Help!

Post by To Dream a Dream »

Hello & welcome to our Discussion Board. Yes, it can be very frustrating when dealing with ostomy issues especially during a pandemic. Here is a link to the UOAA official website for their support group finder: https://www.ostomy.org/support-group-finder/ that may prove of help.
Did your surgeon's office provide an actual referral to an ostomy nurse? If not, I'd call them & insist that they do. A WOCRN has had specialized training & more experience with hands on ostomy care.
Please don't despair as there is an entire industry out there dedicated to the research & manufacture of ostomy supplies that would be specialized to fit your needs. This link may help also: https://www.ostomy.org/search_gcse/
Again thank you for joining us.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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lolapergola
Posts: 500
Joined: 2009-01-01 12:45:09

Re: Help!

Post by lolapergola »

Hi Karen ,manufacturer Coloplast , make Sensura Mio pouches that come in all shapes and sizes .They can advise about best fit for any shaped stoma .Hi Tape is a pink body friendly tape that you can put round the bag to help keep it on . These are just 2 simple tips which may help .Dream has given you good advice above - the stoma suppliers want your business and will put themselves out to help you find the best appliance for your husband . I don't know anything about the leakage behind your husbands problem but finding a pouch that fits would take the stress off while you can sort things out .
keep in touch
Lola.x
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ron in mich.
Posts: 1520
Joined: 2005-10-18 11:56:17

Re: Help!

Post by ron in mich. »

Hi K aren if we knew his routine for putting on a pouch and wafer maybe we could refine it some so that he gets a better seal, also maybe the products he is using isnt as compatible for his skin or size of the stoma, also it would be better if he was on here describing what he does himself.
Lovethatgrey
Posts: 2
Joined: 2021-07-25 21:15:28

Re: Help!

Post by Lovethatgrey »

Hi everyone,
A lot has happened since my last post. As I mentioned above, my husband was diagnosed with ulcerative colitis in 2008 and in January 2018 he had his colon and rectum. For 3 years he was not sufficiently healed to have the takedown surgery until last month (Dec 2021). On December 27 he finally had his takedown surgery. He was released from the hospital Dec 30.

Now we have all new set of questions/concerns as it relates to his takedown journey. I will most likely start a new thread.

Thank you
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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Help!

Post by To Dream a Dream »

Hi Karen: Thank you for posting & letting us know. Understanding that this is a difficult time, I am thinking of you both.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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