P..E.G Feeding/Tube Feeding

Posted , 4 users are following.

Hi! I could really do with some help guys! I'm new to here so not sure if this is the place for it. Im looking for people who are currently fed via a peg direct into the stomach or something similar?

The reason for this is my sister is disabled to cut the story short recently she has been given a feeding peg as her stomach muscles have collapse and unable to hold food. She is nil by mouth completely. She isn't able to eat ANYTHING as when she does it makes her really poorly.

However, she is still gets cravings and temptation of eating/wanting food. My sister says she isn't hungry as the food peg puts 'liquid food' direct into her intestines/tummy giving her the nutrients she needs and the feeling of feeling full. Its the craving and temptation of food she is massively struggling with and its starting to effect her mentally to the point she doesn't want to leave her house because everywhere she goes there is temptation of food around her - she has tried all sorts to help keep her cravings at bay for example blending food, custard, soups, hard boiled sweets, ice cream etc but anything going down her throat makes her very ill as she shouldn't be consuming anything other than water.

We have been to dieticians, doctors etc but no one seems to help or understand! I just thought maybe if there was someone out there in the same situation as her that she can talk too and share tips/advice it could help? or even a forum/chat group anyone knows of in the UK she can talk to people and get this feeling normalised!

Thank you for taking time reading this post! Please help us 😦

1 like, 6 replies

6 Replies

  • Posted

    She could ask her doctor to refer her for some counseling or therapy to help her with techniques to accept the problems she has and take her mind off normal food. In the mesntime, distraction techniques can help such as a hobby or light exercise.

  • Posted

    Hi Emily

    I have had a PEG in the past when I couldn't eat at all and am now semi-tube fed with a PEJ tube (goes into my bowel as opposed to my stomach). Please reassure your sister that what she is feeling is completely normal. When I first came home from hospital with mine, I literally wanted to kill my partner for cooking bacon when I craved it so much! And I craved the most extraordinary things - satsumas, tuna, dry toast - things that were never at the top of my list pre-surgery. I then remember cooking Christmas dinner four months later for the entire family and then spending the afternoon sobbing with the unjustice of it all.

    Long story short, my gastroenterologist referred me for CBT counselling which I personally found really useful. It deals with your thoughts which in turn affect your behaviours. It wasn't an instant thing but I am now able to watch people eat without crying. In this instance, time IS a great healer and it's something she will adapt to.

    It's lovely that you are so supportive - it's what she needs right now!! I would suggest either getting a book on CBT or, more preferably, see if she can get some counselling.

    Best of luck

    Debbie x

  • Posted

    Aw bless you Debbie! Im glad you've got the help you needed! Can you clarify what CBT counselling is? what does the CBT stand for? (not sure if this is a thick question). I cant even imagine how you and my sister must feel 😦 been nill by mouth i bet its awful!! i struggle on a diet stopping eating bad foods never mind not being able to eat anything at all! Also, was there anything at all you was able to stomach eating through your mouth we could try? x

  • Posted

    Thank you for your comment. Im going to give the counselling thing a go so how that works out, also im going to sit down with my sister tonight and see what hobbies she likes. Exercise wouldn’t be any good as she is severely disabled and shes rapidly losing weight so i wouldn’t want to encourage that x

  • Posted

    I want to tell you how much of a wonderful sister you are!! Tube feeding is like a life support system. But we ALL have red flags and sirens in our minds that go off from the trauma prior to the tube installation. I earned the right to have mine removed temporarily and the sirens and flags came back. I also used to make homemade feeding tube formulas....but I also kept trying to eat by mouth even though it was not possible and was only an illusion of eating. I took in homeless people and fed them to help me psychologically and saw nutritionist etc...Her feelings are perfectly normal and correct. When I went to work I would see signs...fast food everywhere..I would goto all you can eats and repeat for hours. We call it binge eating when you eat or drink and then repeat. The REAL problem is that those like me aspirate the food and liquids back into their lungs then get infections that become lung cancer. When I was told by 3 doctors in one weekend I was about to pass away. I finally stopped trying to eat and drink by mouth. I beat cancer and moved on to the next stage for my disease and forced the removal of my tube. I have achalasia, got my heller myotomy surgery but have end stage sigmoid esophageus and unable to drink liquids properly. The red flags she has in her mind are water for me now and I am slowly dying again due to dehydration affects on body and heart. I think she is a HERO for fighting and recognizing she is no longer human. I am finally seeing psychiatrist to help alleviate the suffering...but I do NOT like their meds or affects. The newest one has made me completely shut down..stop eating,drinking,or wanting to live. But I am told they have to go through many meds to find the one that works for me. This is the first time I have ever seen others with my symptoms and heard others have red flags and sirens in their heads saying EAT YOUR DYING!!! And I have met no one else who knows how to survive a full aspirate. I think she is very smart and correct by staying in and not watching commercials etc...until she can get to the eye of the hurricane. I am very strong minded and was able to reach a point of blocking out the desires and do NOT see stores or others eating and drinking. But their are days when I am weak...even though I can eat now..it is NOT perfect and I aspirate 3-4 times a month trying to be human. I recommend she see psychiatrist..feed food to animals or homeless and even try to eat and drink a little knowing it is on rental. So long as she is not endangering her life. The vommitting might be worse for her stomach muscles though. But if she can find happiness watching others...then she can focus on her next stage. Their is also a famous U.K. writer who wrote some books called The Achalasia Diaries. It made me cry and break down but relate to the problems we suffer. Femi Martin is her name and very friendly..she just got married to another patient with Achalasia and the leader on overcoming the issues. My most favorite trick when doing peg feeding was I liked my formula ice cold and vanilla flavor. I would taste a little..then pour it in and it simulated the act. Feel free to send me a private message if would like to stay in contact. The ONLY reason for going on is to help teach doctors and help others. She is now a super human being and part of the cyborg future. Just this month a doctor has chosen to become a tube person too and live eternally in a computer but kept alive by tubes. I have had all the tubes too..not fun. God Bless you and her..her pain and suffering could help others in the future!! Stay STRONG!!

    • Posted

      You don't need to go through a list of anti anxiety meds to find one that suits you. You have a choice to refuse them if they are causing you more problems. When the side effects outweigh the benefits, this suggests it is time to try a different approach such as meditation or relaxation therapy which can give you all the mental health benefits you need without the side effects. I get very anxious, but I very much prefer to live with it and tolerate it as part of me. Doctors only tell you you need drugs because they want you on them. They work with the drug companies and are making money out of your suffering. You are not being told the truth about these medications.

      The side effects you are having are serious and they are not doing their job of calming you down if they make you feel you don't want to live and are putting you off taking nutrients. They are making your mental state worse which they often do. Be very firm with your doctor and emphasize that you don't like their meds or their effects and you want to come off them and try natural approaches to dealing with mental distress. You do not have to do everything your doctor tell you to do. Doctors discourage natural remedies even if it benefits the patients more because it doesn't benefit them

      Since so many of them are toxic for you, this suggests that these drugs are not the route you should be taking If I get side effects from a medication, I stop them immediately and throw them out. My doctor, who I initially trusted, tried to get me on anti depressants for neuralgia. I had to be very firm with him and battle through all the lies he was telling about there being no side effects and that stories of bad reactions were merely people being negative. I saw a very manipulative side of my doctor that day.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.