FINALLY A DIAGNOSIS

• By chewy1
• Posted July 19, 2008 at 4:47 pm

LQ,
I can't offer you any advice on the pacemaker or g tubes because I have not had to have either one but there are a lot of people on this site who can help you with those.
I did want to tell you that I'm thinking of you and Shea. I'm sorry that things didn't work out after having prepared yourselves mentally for the placement of the tube. But, hopefully the pacemaker will make a big difference for her and she won't have to have the g-tube for long.
I hope they are able to just get her right in for the surgery too so you don't have that wait hanging over your head.
Please keep us posted on what happens. I'll keep her in my prayers.
Judy

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• By JenD
• Posted July 20, 2008 at 11:48 am

Hi LQ,

I have gastroparesis and small bowel dysmotility and have a g-tube and j-tube. I'm not sure why they would put in a g-tube without a j-tube. The g-tube is used for draining the stomach when it is not working and would be useless for feeding or medications when her symptoms of gastroparesis are that bad. If I take meds they just sit in my stomach and often do not get absorbed properly. The j-tube is a tube into the small intestine that bypasses the stomach to be used for feeding and medications. There is also a G/J-tube that goes into the stomach and has one tube with a split and an extension down into the jejunum for feedings.

Having the G-tube to vent has been a lifesaver for me. It is so much better than vomiting and you can hook it up to a bag to just drain the stomach when you are feeling really sick. If her small bowel is involved then the j-tube may not work well for feedings...this is what happened to me and I am now on parenteral nutrition.

I have another friend who I met at the Oley conference who has EDS and both gastroparesis and small bowel dysmotility. It seems to be a common problem with this disease.

Regarding the pacer...I have heard mixed results from several patients who have had the surgery. Some patients say it helps enough to keep eating while others say it doesn't help enough to be worth it and even get it removed. I don't qualify because of my anatomy (intestines are wrapped around my stomach). It is just too much of a risk of damage to my intestines and with bowel involvement it might not help anyway.

With EDS the bowel may be involved as well. Does she have constiipation? I would probably try nasojejunal feedings first just to see if a j-tube might be an option. You can always try for the pacer too and hope for the best, but if the bowel is involved the pacer might not be the best option. You should definitely consider seeing an EDS expert who is familiar with motility problems before deciding on which surgery to do.

I hope this is helpful. Feel free to message me if you have questions about my tubes or anything else. There are others here with pacers, so hopefully they can answer some questions for you too.

-Jen

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• By Novagrad
• Posted July 20, 2008 at 12:14 pm

I also have the gastroparesis from autonomic neuropathy. I have had bacterial overgrowth as well from food just sitting in my stomach for days. They can't put in just a g-tube - they would also have to do a j-tube. I have a j-tube due to the gastroparesis. I also have colonic dysmotility and require frequent enemas. I went to the Mayo Clinic to confirm my diagnosis. They were great. Let me know if there is anything I can do to help!

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• By Adance
• Posted July 20, 2008 at 3:11 pm

LQ,

I have a pacemaker, and I am so much better now than I was before. I just got my pacer at the end of May 08. I will tell you I vomited multiple times a day and was on a clear liquid diet before surgery, most of the time I didn't even keep the liquids down until after my surgery. Since the day after my pacer was placed...I quit vomiting! You should read my journal posting on "Gastric Pacemaker" most everyone that is on this site and who have one contributed to that discussion it may help you.
Best of luck,
Alicia :D

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• By LQ
• Posted July 20, 2008 at 9:21 pm

Thank you for your reply regarding my daughter. I think we are bring sent home tomorrow with IV nutrition until we can get a better diagnosis from a specialists in Gastroparesis. I am not sure how the IV feeding will work but we will do fine with them. She can still eat what she feels like but doesn't feel like very often. Just snick snacking.

Thanks for your help
LaQuita

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• By Novagrad
• Posted July 21, 2008 at 11:36 am

The feeding tube is better than having IV nutrition if you can do it. I, for one, almost died from the IV nutrition because I went into septic shock. I'm always getting infections and often require IV antibiotics, but as soon as we can, we take the PICC line out because I've had so many infections with PICC lines. My j-tube keeps getting infected, which baffles my doctors, but I'm not always as sick as I am when the PICC line gets infected. Good luck and keep us posted!

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• By NancyL
• Posted July 22, 2008 at 11:13 am

Hi LQ,
I can not give you advice on pace makers or tubes. I do however know what it is to have food stay in the stomach for long periods of times. High fiber food tends to stay in my stomach for more then a day. I was told by my GI doctor after many tests that I had almost zero motility in my intestines. She said that it was a side affect of the surgery I had gone through that caused a type of paralysis. I find that I do best when sticking to a liquid diet with the least amount of fiber possible. I use protien powder in fruit juice, lots of Slim fast and yogurt. I am lucky and can eat ice cream and chocolate without problems to. Flax seed oil capsules, Miralax and senocot tablets keep my body working as well as it can these days. When I cheat or skip the Miralax, flax and senocot I suffer for a day or up to a week. Then I am good for awhile until the memory fades or the cravings take over. Hardest things for me to stay away from is breads, crakers and cookies. They do not cause as much pain as meat and vegetables but they do not move through my system either. I wish you the best of luck finding what works for Shea.
-Nancy

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• By michdey
• Posted July 26, 2008 at 9:13 pm

Hi LQ,

Sorry to hear about the troubles your daughter is experiencing but it sounds like she has some good docs that are taking her symptoms seriously and acting accordingly. I have the tube in now for nightly feedings and also my meds. I have had it in now for several months and so far so good. I was scheduled to have the gastric pacemaker put in last week but ended up with a bacterial infection and therefore the surgery was cancelled. It is now rescheduled for 8/29 in Vermont (I live in NY) and they will leave the feeding tube in as well. The surgeon estimated that I could get the feeding tube taken out within six months after the pacemaker placement as long as everything is going well so I was happy to hear that. At one point, the doctors were not sure if I would ever be able to be without the feeding tube since TPN is not an option for me due to frequent life-threatening central line infections. My kidneys have failed twice now due to being septic and after awhile, your body's organs just start failing due to scarring and excessive infections. Anyway, I hope things start to improve for your daughter. Like I said, it sounds like she has some good doctors watching over her and with this disease that is unfortunately sometimes half the battle! Take care.

Michelle

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• By michdey
• Posted July 26, 2008 at 9:29 pm

Novagrad,

I was just reading your reply to LQ and we have alot in common as far as infections go. As a matter of fact, I just got home from the hospital yesterday due to being septic. The scary thing is that the doctors don't know the source of the bacteria this time. I have a G-J tube in but they tested the drainage around it and said it was negative and I don't have a central line in right now so they were baffled. I have had four ports and four different PICC lines and they have all become infected. I almost died from septic shock on two different occasions--one time I was in a coma on a ventilator for a week while my organs slowly shut down--they even had to shock my heart to get it to come back. Both times I required emergency blood transfusions and they thought I may have suffered some brain damage because my temperature went as high as 107. They can not figure out why I get so many infections--life-threatening infections at that. I am a diabetic and have Lupus so both those diseases affect my immune system but still they say that getting infected every time is just not normal. Have your doctors figured out why you get so many infections? Do they have you on anything to boost your immune system or prevent infections? I was on a prophalactic antibiotic after my first episode of septic shock for about five months but then I got another infection and it was resistant to alot of antibiotics so that scared them into not doing that anymore. Now, before I go in and have any kind of surgical or dental procedure I have to visit my infectious disease doctor and be cleared of any active infections. Sorry about the questions--I am just curious if you may have heard of something that we have not tried yet. I am having a gastric pacemaker placed in about a month and I am extremely worried about infection but my surgeon assures me that I should be okay with it. Well, take care and thanks for reading this!

Michelle

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• By Novagrad
• Posted July 27, 2008 at 12:34 pm

Hi Michelle:

I'm in a similar boat. They don't know why I keep getting infected. My j-tube keeps getting infected and it is infected again. The antibiotics clear the infection for a little while but never for that long. As soon as I'm off the antibiotics, it starts up again. I've had 7 PICC lines and most have become infected, so they don't want to do the TPN. I also always get hepatitis and pancreatitis from the TPN when I'm on it. I also had a high temp (106.2) and almost died of septic shock last fall. The thing they don't understand is how this j-tube sometimes causes blood infections. They think it wears down the muscle layer and gets into the blood stream. I also have bad spine problems but I can't have any epidural injections because of the risk of infection and they don't want me to have surgery right now because of the risk of infection as well as the fact that I don't handle surgery very well. So, I'm on long-term pain medication instead. Good luck with the pacemaker!

Mimi

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• By sandyb
• Posted September 28, 2008 at 10:42 am

Hi Lo,
I will be happy to answer any questions you have if I can. I also have gastroparisis. Mine is related to a neurological disorder called Dystonia. You are on my friend list. Feel free to write.

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• By KarenWilliams
• Posted September 29, 2008 at 5:31 am

I also have dysmotiltiy due to autonomic neuropathy. My stomach is affected really badly (not emptying, lots of pain and bloating) and my intestines are also affected.
I have a PEG and a PEJ. The PEG is for draining and venting my stomach. I've heard some people attach a drainage bag over night and they feel much better for it. My PEJ is for feeding and medication. Because I can put the medication directly into my Jejunum (and it's not being held up in my stomach and being 'over' digested so it becomes ineffective) I can manage the constipation fairly well.
I've never had TPN but know of peoplewho have; while a PEJ or PEGJ isn't something I would chose to live with, it is less of a risk than a central line. I still get infections, but they can often be treated at home or with a short hospital stay.
I know people who are on TPN and now live fairly 'normal' lives; one guy ran the London marathon! So don't be afraid of TPN, but I would recommend that you try a PEGJ or PEJ first.
Good luck.

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