As others have already said, have a discussion with the doctor as well as the speech pathologist and hear both sides. Also include any other professionals who were involved in the issue that led to the jtube.
My husband has had a PEG tube since 2016 due to swallowing issues related to Parkinson's. I was advised by a good friend to never remove it. Her husband had one and once he was eating comfortably, he insisted on having his removed. Sometime later he was back in the hospital for another issue and was unable to swallow his Parkinson's medicines. He was too weak to undergo the procedure to reinsert the tube. Had the tube still been in place he would have been more comfortable without needing IV drugs to sedate him.
My husband is able to eat a modified soft diet and probably would be fine without the tube. I continue to use it for his medicines and one meal a day because it helps assure he is getting better nutrition and hydration. This way, should he have a separate issue requiring hospitalization we don't have to worry about struggle to eat or receive all of his medication. As long as I flush it once or twice a day, he doesn't have to use it at all.
Another issue is when the tube of another friend's husband fell out, the providers refused to put it back in. The reason was in his Living Will he made several years ago he signed he did not want a feeding tube and it had never been updated. They had it for a few years and he was not in an active dying situation even though he was now in Hospice. This meant she had to manually prepare all his food and hand feed him for months taking an hour for each meal rather than 15 minutes. Check the wording on your Living Will. I made sure ours says what we prefer but our agent has the ability to use their best judgement. If his comes out, I want to be sure my hands are never tied in making the best decision.
I totally agree that when a patient is actively dying, a feeding tube should not be used even if it is already in place... because the body is shutting down and food/water only adds to the discomfort when it can not be digested properly. However, in both cases the patients were not to that stage yet.
Note: Feeding tubes often deteriorate and often fall out after about a year, but can be replaced very easily if done soon after it comes out! It is only after it is left out too long that it has to be reinserted surgically.
Removing a J-tube is a very simple procedure that needs to be done by a physician or nurse practitioner. It is perfectly safe for it to be removed, just have to follow the correct steps.
Ditto to asking your medical folks. But wanted to say congrats on being able to get all your calories by mouth and keeping the weight on! So happy for you!! I have read that once you are getting at least 3/4 of calories by mouth and supplement with Boost or nutrition drink you can consider having it removed.
If you feel confident in your swallow I would definitely have the conversation with your doctor, GI, and/or dietician.
My mom is having a tough time transitioning back from tube to food. May I ask did you experience any nausea when going back to food by mouth? My mom has. She reduced from 4 to 3x per day by formula and we are working toward 2x but it's been hard. She especially got used to taking her medicine via tube. I've been encouraging her to eat even if only a little bit sporadically throughout the day to keep the hunger trigger and swallow reflexes going. Any tips for a smooth transition? I don't want to rush her but don't want her to get "stuck" either.
Then again, my dad is now recovering from spine surgery so focus has shifted to that AND they are involuntarily moving at the same time (water damage from frozen pipes...)
If you haven't used this for three months I am surprised this issue wasn't taken up with your doctor. We cannot know your medical condition with all of its individual idiosyncrasies, so this is a question only you and your doctor can decided together. It sounds as though you are doing well. I am happy to hear that and wish you luck.
My husband has had a PEG tube since 2016 due to swallowing issues related to Parkinson's. I was advised by a good friend to never remove it. Her husband had one and once he was eating comfortably, he insisted on having his removed. Sometime later he was back in the hospital for another issue and was unable to swallow his Parkinson's medicines. He was too weak to undergo the procedure to reinsert the tube. Had the tube still been in place he would have been more comfortable without needing IV drugs to sedate him.
My husband is able to eat a modified soft diet and probably would be fine without the tube. I continue to use it for his medicines and one meal a day because it helps assure he is getting better nutrition and hydration. This way, should he have a separate issue requiring hospitalization we don't have to worry about struggle to eat or receive all of his medication. As long as I flush it once or twice a day, he doesn't have to use it at all.
Another issue is when the tube of another friend's husband fell out, the providers refused to put it back in. The reason was in his Living Will he made several years ago he signed he did not want a feeding tube and it had never been updated. They had it for a few years and he was not in an active dying situation even though he was now in Hospice. This meant she had to manually prepare all his food and hand feed him for months taking an hour for each meal rather than 15 minutes. Check the wording on your Living Will. I made sure ours says what we prefer but our agent has the ability to use their best judgement. If his comes out, I want to be sure my hands are never tied in making the best decision.
I totally agree that when a patient is actively dying, a feeding tube should not be used even if it is already in place... because the body is shutting down and food/water only adds to the discomfort when it can not be digested properly. However, in both cases the patients were not to that stage yet.
Note: Feeding tubes often deteriorate and often fall out after about a year, but can be replaced very easily if done soon after it comes out! It is only after it is left out too long that it has to be reinserted surgically.
If you feel confident in your swallow I would definitely have the conversation with your doctor, GI, and/or dietician.
My mom is having a tough time transitioning back from tube to food. May I ask did you experience any nausea when going back to food by mouth? My mom has. She reduced from 4 to 3x per day by formula and we are working toward 2x but it's been hard. She especially got used to taking her medicine via tube. I've been encouraging her to eat even if only a little bit sporadically throughout the day to keep the hunger trigger and swallow reflexes going. Any tips for a smooth transition? I don't want to rush her but don't want her to get "stuck" either.
Then again, my dad is now recovering from spine surgery so focus has shifted to that AND they are involuntarily moving at the same time (water damage from frozen pipes...)
Again, congratulations!!