Stoma hernia causing pouch issues and weight loss

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2656
chestnut
Oct 23, 2018 2:29 am

Had my colostomy almost a year ago (abcessed diverticuli). Have since developed a hernia under the stoma and wear a NuHope hernia belt all the time except for sleep and showering. My problem is the stoma now sticks out so far (was once a cute button) that it lays flush against my pouch. Any output at all sticks to the bag, gumming up and creating a real mess. My insurance will only cover so many supplies and changing daily because of this is not an option. So, I have been afraid to eat much of anything and now have reverted to my discharge weight (100 lbs). Now even a small plate discourages my appetite. I am wondering if I am losing weight because of a calorie deficit or if the hernia is messing with my digestion. My surgeon was not very concerned when the hernia developed, but now made an appointment with him and my stoma nurse for a re-evaluation. This is scary ground, as has been the whole journey. Do things ever just settle down? Any thoughts appreciated. -Lorelei

Bill
Oct 23, 2018 5:25 am

Hello Lorelei. I am sorry to hear of the problems you are having with your stoma and appetite issues. There are many possible explanations for these things and having a medical opinion on them is a good first step.  None of the things you describe (including the scariness) are at all unusual in the stoma world and different people have come up with their own solutions. I see you have a COLOSTOMY so I will share with you the fact that all the problems with the mess you describe could be resolved if you could irrigate. It's not for everyone but those who are succesful at it have found a new freedom from almost all the things you describe. In essence, we flush out our system in one go, then we are free from output for 1-2 days at a time.  Therefore, there is no problem with pancaking in appliances. Indeed, there is no need to wear the bag-like appliances anymore.

The irrigation procedure is relatively straightforward and usually takes far less time than messing about with 'pouches/bags' during the day. I would suggest that it is well worth looking into, as it might also allow you to get back to eating normally without fear of complications. 

Best wishes

Bill 

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Puppyluv56
Oct 23, 2018 5:59 pm

Lorelei,

So sorry for your constant issue. I am only 6 months in from surgery but found I felt tied down to the house due to leaks and all that come with a colostomy! I started irrigating in August and it is definitely a newfound freedom. I have not graduated to a cap yet and continue to wear a two-piece appliance but only change it every 6 days. I am trying to train my colon to go every other day which was normal in pre-ostomy life. It is liberating and I have not had one leak since starting! You can also rinse out the pouches if needed on in-between days. Bill is so right! You may want to talk to your MD/Ostomy Nurse about it. They will be glad to help you and do it for you the first time. You can watch many different YouTube videos showing you how as well! Good luck!

Puppyluv

chestnut
Oct 24, 2018 2:35 am

Thank you both. I will definitely talk to my surgeon on Friday. You guys all rock! So helpful.

Puppyluv56
Oct 24, 2018 2:10 pm

You are welcome, keep us posted!

 

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Gaostomyguy
Oct 31, 2018 12:19 am

Just had parastomal hernia operation last Wednesday. I ended up lifting too much when I had my surgery last year prior to recovering properly. I lifted something causing a hernia in the left side underneath the stoma, causing a large bulge. The surgeon was able to get my stomach back to being flat looking again on both sides. I'm hoping this is the last surgery I'm going to have for quite a while. I want to resume my life and get back into the gym, just take it easy for a period of time. Don't lift anything over 20 pounds, my doctor said.