the DR. mentioned at my daughters last visit that in the future he might change out her G-J tube to just a G and then put in a J only tube. he thinks MAYBE if it's put in lower down the intestines, the pain will be better and maybethe rate. Anyone tried this?
thanks tricia
Hi Tricia
Due to severe dysmotility syndrome I had a PEG-J put in in 2004. This worked fairly well and I put on four stones! However, because the Jejunal extension tube had to be so thin (in order to be fed through the G tube) it blocked on a fairly regular basis. This meant having to wait for the next available endoscopy appointment. My tube blocked the Saturday before Christmas last year and I had two weeks of losing weight, getting dehydrated and feeling rough. Each tube replacement meant a hefty sedation for me and my Mum having to take two days off work to look after me post sedation.
Four weeks ago I had a separate PEJ put in. This means I can use the PEG tube for draining excess acid (but it isn't quite as good as I hoped at draining after I've had something to eat or drink). As the J tube is wider I have been able to increase the rate I feed at by 40% which means I now get a few hours off my pump every day.
Eventually the short J tube that was put in will be replaced by a non-balloon button. This is what I have in my PEG and it is really comfortable and much more discreet.
Although I had to be opened up to put the tube in (they tried endoscopicly and laproscopicly but these didn't work) the pain wasn't as bad as I feared and I'm pretty much back to 'normal'. (Being reviewed by the pain clinic helped control this.)
I would highly recommend doing this, it has made a massive difference to my life.
Let me know if you would like to know anything else.
GREAT THANK YOU SO MUCH FOR THE INFO. YESTERDAY HE PUT IN A LINE FOR TPN, SO RIGHT NOW WE ARE TRYING THIS. BUT I AM SO HAPPY TO SEE YOUR RESPONSE, BECAUSE IT'S REALLY NICE TO KNOW IT HELPS. I AM AFRAID ALSO OF THEM CUTTING INTO HER AGAIN, AND THE HEALING PROCESS. BUT IF IT'S A BETTER LONG TERM SOLUTION.....
THANKS AGAIN!
TRICIA
Dear Tricia,
I do not have any personal experience with a g-j tube, but I have had a good experience with having a separate j-tube and g-tube which were placed at different times with a laparoscopic procedure. When I first had my j-tube I was able to get up to a pretty high rate of about 100 mL or so per hour. It was also so helpful to be able to drain the stomach so as to prevent vomiting. They both helped me to complete my undergraduate degree and get my bachelor's. Unfortunately, my bowels soon gave out on me, but before this, the tubes helped to regain some of the weight I had lost due to gastroparesis. I do not remember ever having trouble with a clogged tube except when with certain medications that did not dissolve as well as most in water.
I have also been on TPN, and I am currently back on TPN to help me gain some weight along with eating orally. I hope that if this is the best option for your daughter that it will help her to get the nutrition and energy she needs to be better able to do what she loves. I will keep you both in my prayers.
Bobbiejo
thanks for the prayers and info. as you can imagine, she's not to happy with another tube. i pray this helps her. did TPN help get rid of some of the nauseousness?
thanks tricia
Dear Tricia,
I did not really notice that the TPN helped with my nausea. Even when I was first on TPN for 24/7 and was not eating by mouth, I had trouble with nausea which having a g-tube helped some by allowing me to drain the stomach. Even though I was not using the stomach, bile and acids could still build up and need emptying. I do not think that the TPN worsened my nausea though. However, I have noticed this time since I have gone on TPN for only 12 hours a day while also eating, I have had more trouble with diarrhea. However, each person reacts differently.
I hope that your daughter is feeling better and that you both are having a good weekend together. Many hugs.
Bobbiejo
Bobbiejo,
bummer i was praying it would help with neaseaness! thanks agin for the info
tricia
I had a GJ tube you are referring to. The J -tube migrated into my stomach the first week an they replaced it in the endo lab. Then 4 weeks later it clogged and had to be replaced again. The third it happend I just had them pull the J tube and stuck with the G-tube. I was never able to tolerate the feeds. My symptoms did improve and I was able to maintain (actually gained) my weight. So I had the Peg tube removed Feb 8. Well I just got out of the hospital this week and had to go back on tpn. At least I got to eat Easter dinner and I surely enjoyed the real food for a bit, but all good things must come to an end.
Personally, it will be a long time before I get talked into another feeding tube. I am in the process of getting approval for the gastric pace maker - keeping my fingers crossed. Right now the hold up is that I need a recent gastric emptying scan, but can't tolerate the eggs or oatmeal to do the test. i can barely tolerate the sips of liquid throughout the day.
Good luck to you and your daughter!
Beth
thanks Beth
now that she's on TPN, it seems so much better...she can just stop the j feeds if she needs too
thanks for your feed back
tricia
Hi, sorry to hear of all the problems and pleased to hear the TPN is helping and things are settling again now.
Chris
www,mypeggypeg.blogpsot.com
I have a J tube and a G tube. They are two separate tubes because I got the J tube first. I just had the g tube inserted in August of this year.
I currently can only run my rate at 40. So I am on enteral feedings 24 hours a day. I used to run my rate at 75 so I could feed only at night. But for some reason I now have slow motility in the intestines. Sometimes the formula feels like it has gotten stuck and I have to unhook for a couple of hours to give the formula time to go through. My GI doctor is thinking maybe the balloon is the cause of some of this. I am waiting on a mic-key button to arrive. He thinks that might help with this.
I do get pain at the J tube site daily. I struggle with intestinal spasms as well. It gets so bad sometimes that it will draw the tube in. My GI doctor is not sure what is causing that.
Please understand that everyones experience is different and what might work for someone might not work for someone else.
thanks song2hymn
sounds similair that my daughter can only run feeds at 40 in the J. So maybe it wouldn't matterif she got a J at a different sight.
Looks like we'll stick to TPN, at least till she can get thoses feeds up
thanks tricia
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