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Frustrated

Welcome to MeetAnOstoMate
16,492 Members
Posted: Sun Jul 16, 2017 12:12 pm

I have a colostomy with a very large hernia around it.  I was referred to a hernia specialist in Toronto as its being problematic and may require surgery.  However, i have a rare neurological disorder and cant talk.  I use my tablet to type and in the appointment the dr didnt even look at it and shoved it aside.  He was so rude and insensitive and now im waiting for a referral to another doctor.  All i feel like i do is wait and leak and wait and leak.  Ive been avoiding a lot of social things because im afraid ill leak and because of my voice.  This is no life and i cant understand my life.

Posted: Sun Jul 16, 2017 3:44 pm

I am so sorry to hear about your treatment by that doctor. Unfortunately, many doctors do suffer from a "God" complex, thinking "if only that patient would just shut up and do what I tell them!" This is no way for him to act, and this is no way for you to live. Deep breath, clean slate, let's look at your problems one by one.

First, do you leak a lot right now? A little or a lot? Have you tried different products? Many places will send you free samples, so you can try different products to see which ones work best for you. There are lots of products which can help with a leak issue. One of the best I have found is Aqua Seal by Costa Medical. This waterproof thin membrane goes on over the appliance, but beneath the pouch, and extends beyond the limits of the faceplate. If you have any breakthroughs, it can contain them easily until you can change your appliance.

Do you have contact with a local ostomy nurse or ostomy support group? You can probably find very caring, very knowledgeable people there who can help and support you in this time of your need. Remember, whether physical or psychological, YOUR NEEDS ARE REAL, and you have as much right as ANYBODY ELSE to competent, caring treatment, which you did NOT get from your first doctor.

You might try to carry a piece of paper with a message written in LARGE letters: "I can not speak, but I have things to say and questions to ask. Please look at the tablet." If they will not, walk out and woek to find another practitioner, whether it be doctor, nurse, or other. You have a RIGHT TO ASK QUESTIONS AND BE HEARD, even if that is through a tablet rather than your voice.

Try to be more social, even though you want to shrink back. It will help enormously with your outlook on life, and your feelings about yourself. Push through this, even if you don't want to. Making contacts, especially with an ostomy support group if you can find one locally, might lead to referrals to a better physician than the jerk who saw you first.

Lastly, here on the board, WE CARE ABOUT YOU! Please follow up and let us know how you are doing.

Posted: Sun Jul 16, 2017 11:39 pm

Hi. I too have a large hernia at my stoma.  I wear a hernia belt - Nu-Form support belt with a belt ring to pull the pouch through, & this has been a great help.  I use the two piece closed bag.  I wash with ivory soap, rinse & dry. Then I cover my stoma with gauze, sprinkle all the area with stomahesive powder lightly & brush off with a soft cosmetic brush. Next i spray over powder with a light coating of Cavilon  no sting barrier film.  Let this dry, & repeat powder & spray.  This holds the wafer quite well.  Also there is pink tape available to hold the edges if they loosen.  I found this technique on you tube.  My surgeon said they would not operate unless there was no way to keep the appliance on.  I hope you can find someone to help you.  There are so many choices.

 

 

 

 

Posted: Mon Jul 17, 2017 12:42 pm

Ive tried everything sigh my et nurse examined in february...she retired in may and i havent connected with her replacement.  Im part of a support group.  We're on hiatus during the summer but ive been in regular contact.  This morning she suggested seeing if the stoma needs remeasured.  Et nurse said hernia belt wouldnt help since when i lie down hernia is still quit large.  Mostly i think that multiple issues in life are happening all at once and i feel a bit lost and uncertain.

Posted: Mon Jul 17, 2017 9:07 pm

Thank GOODNESS i have comected with the new ET nurse.  It was only difficult because i cant phone and was able to get in touch with her via my surgeon (who she works along side of thankfully)  Since ww havent met she asked me to come in for an assessment.  That makes me feel a million times better!

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