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Hi recently I have had surgery and have had to have a stoma bag fitted for the next 3 to 4 months.
Posted: Posted May 24th by Anonymous British Man

This is very horrible. It is partly because of Crohn's Disease.

It is very horrible emptying the bag and changing the bag. Having to use loads of latex gloves, etc. Not being to eat as much as I normally eat. Not being able to maintain weight or gain weight like I could before. I hope I can survive these 3 to 4 months. Then put on weight afterwards.

Then I will be able to play some games in the future I look forward to like the new South Park game and Red Dead Redemption 2 and more.

I don't know why this had to happen to me out of all people. I had a fully independent life before.

Every 30 minutes someone in the UK is diagnosed with Crohn’s Disease or Ulcerative Colitis – the two main forms of Inflammatory Bowel Disease (IBD)

A lot of children in the UK are getting Crohn's Disease. What is causing this?

What is the cause of Crohn's Disease and how can we stop people getting it?



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There are 8 Replies

You're not alone with problems related to your stoma. I also have this problem but a different cause for thiis than what you have. I have Neurofibromatosis type 2 which consists of tumors that grow all over the central nervous system all over the brain and alone. Well around four and a half years ago I had to have tumors removed from my c spine and during the surgery the swallowing nerve got damage and butchered, so when I woke up I wasn't able and still not able to swallow (albeit I had a larygnetomy surgery to separate my airway from my esophagus so I can drink now but I still can't eat anything). I am connected to a feeding tube all day everyday for the rest of my terminal life, and am on a liquor diet. I live with my parents because I am not physically able to take care of myself. They have to use a suction machine device to suck out all of the mucus from my stoma everyone nought and suction out anytime it gets congested. I wear a larynx tube inscribed from a hole that my ENT made during the laryngectomy surgery to place it over. I have to use the suction device constantly to suck out my saliva that I constantly drool because I can't swallow it orally because my swallowing nerves and muscles are damaged. I do take anti-throat secretion medicine but that often doesn't work and didn't yesterday in fact, I was drooling all afternoon long, so I had to take medical marijuana to make everything stay in control and make my body relaxed. The saliva is coming out right now even, so I'll have to try and take more meds to try and make it stop.

I'm sorry you vave this problem too. It REALLY sucks (or CANT literally suck because I can't swallow my saliva orally). I'll ask my nurse if she can help you related to your problems that you have been having related to this. I'm given nursecare 24/7 because my parents have busy lives and can't watch me every second of the day which I need to be supervised because I have so much going wrong for me and I can't do anything for myself now, not even gaming either atm because my index fingers had tumors removed from them and that damage the nerves too (currently texting this from my iPhone 7 because I can use my thumbs fine and don't have to use my index fingers like I have to on the computer keyboard). I really want to play the new zeldq gqme. Watching my friends playing it the game has so much to it and counter attacking looks like a real challenge.

Edited May 24th by weid man
weid man
 

[Img]http://i65.tinypic.com/b54bw9.jpg[/img] is what I wear over my stoma daily which has to get cleaned out before I go to bed every night and whenever it gets congested with mucus.

Posted May 24th by weid man
weid man
 

Made a mistake on the imae link.


Posted May 24th by weid man
weid man
 

Sorry to hear about your problems. I have all my sympathy for you. I wish for you to have happiness in your life and enjoy the good things there is about life.

Watching videos on youtube can help cheer me up.



Posted May 24th by Anonymous British Man
Anonymous British Man
 

Thank you! I hope that your body recovers and that your stoma can fix itself asap. My nurse arrives here next hour, so I'll have her respond here and telll you how to solve the problems related to your stoma.

Posted May 24th by weid man
weid man
 

My muse just arrived and I showed her your post and she's says "I am not sure I can tell him anything different than what he is doing. It sounds like he is getting adjusted to having a g- tube and is expressing the discomfort from that. Sometimes the best we can do is listen and empathize which did well in your response."


Also I forgot to mention in myaboce rwplies that I also have problems with waeifht gain, because I'm on a liquid diet. Everyday I have to shit out all of the nutrition that I absorb via the g tube, and it's very difficult to gah any weight. I weigh only 120 pounds and I'm 5'10" tall.

Edited May 24th by weid man
weid man
 

I've been drooling all morning long and I can't stop this from happening, even with the meds that I've been taking. I hate this shit that we have to put up with. I can't swallow my own saliva. I got injection shots to my stoma/throat to try and block and stop he saliva from coming up a few weeks ago and now can't have any more for the next four months. I'm screwed with this shit because I was a dumbass and chose not to try following liquids/nutrition and exercises immediately after I had my laryngtecpmy surgery and I waited two years and now I have to put up with all of this shit. Moral of the story, DO your swallowing exercises even if you don't give a shit, because if you don't then you will lose your ability to swallow your saliva and you'll drool constantly and need to have lots of medicine to try and make it stop, along with injection shots to your stoma from your doctor.

Edited May 24th by weid man
weid man
 

Do you drool uncontrollably as a result from your stoma problems? Are you able to swallow your saliva? I'm not able to swallow mine, and I need to do my swallow exercises but I looks like th samqge hws been done to my esophagus.

Posted May 29th by weid man
weid man
 
Reply to: Hi recently I have had surgery and have had to have a stoma bag fitted for the next 3 to 4 months.

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