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Tube Feeding?

Discussion in 'Gastrointestinal and Urinary' started by lgibson2017, Mar 20, 2017.

  1. lgibson2017

    lgibson2017

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    Hey, guys, so I have a question with a bit of backstory:

    I've had IBS since long before my ME started, but it obviously got much, MUCH worse when the ME started up. I've had my motility tested and it supposedly was normal but I have a lot of signs of very slow motility... It's not this bad all the time, but for at LEAST a few months out of every year I am nearly unable to eat or drink, constantly nauseous and vomiting, bowel disturbances, etc. My last bout had me drop nearly 30 or 40 pounds, and I was a healthy weight to begin with.

    I've been tossing around the idea of possible intermittent tube feeding for years, since back when I had horrible, horrible food allergies (I've since grown out of them), but sometimes the idea of not having to stress about food and being able to just relax and not be in so much pain and discomfort is appealing. I think being on a mild, bland, liquid diet would help me a lot but I can't choke down shakes or protein bars or anything.

    Would it be possible to voluntarily have a gastrostomy tube placed but only use it when I'm really bad off? And how would I go about presenting that to a doctor when I'm a healthy weight and I usually don't lose *that* much weight? I mean I maintain my weight, sure, but I'm miserable and my quality of life is null.

    I should also add that I have a history of, when my ME flares really badly, total GI system shutdown. I mean my bowels stop moving, I can't hold even water down, all of it. Would a g-tube help me? I'm afraid I'm just being dramatic for "wanting" a tube, but it's not the tube that I want, it's the ability to not be in so much pain and discomfort...but I'm afraid a doctor would just call me crazy and send me out the door.

    Are voluntary g tubes a thing? How much does it cost to have a g-tube and keep it up? Is this even a remotely good idea in the first place???

    Thanks,

    Lauren
     
  2. daisybell

    daisybell Senior Member

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    Can you get a referral to see a dietitian? It would need to be one who deals with tube feeding so they could discuss everything with you...
    I think that would be my first move - get some more facts and a good dietetic assessment.
     
  3. lgibson2017

    lgibson2017

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    Ok I have an analogy: think of a water heater.

    A water heater isn't necessarily essential for life, but it does make your life a whole lot more comfortable, right? And, I mean, it's expensive and requires maintenance but many would agree that it's worth it, right? Well, for me, tube feeding isn't a matter of life or death, but I think it would greatly improve my quality of life and I think it would be effective enough to be worth trying.

    So do I fight for hot water or suffer through cold showers? If I put it that way, the choice is clear, but obviously it's a little more gray than that...I don't know. I'm gonna try to get an appointment with a new GI doctor and bring it up and just see how it goes.

    I'd try to drink the drink/formula, but I have an 8x10 of that working out with my taste buds and gag reflex
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I cannot see that having a tube would make any difference to the problems you describe. It makes no difference whether you fill your stomach by normal swallowing or by tube. If your gut objects you will feel nauseous just the same. If there is a specific problem with swallowing that is a different matter.

    A gastrostomy is a major procedure with major long terms complication risks.
     
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  5. kangaSue

    kangaSue Senior Member

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    The problem with emptying studies is that your stomach emptying rate can vary by the hour, let alone day by day. It would only be a true reflection of the situation if you had the test done while you were actively experiencing a bad patch.

    Was this a Gastric Emptying Study (radioactive egg meal)? Were you tested for liquids emptying rate as well as solids? I would hazard a guess you weren't because it's rare to evaluate liquid emptying separately but that tends to be worse than solids emptying in ME/CFS according to a small Australian study.
    This can be the case with viral gastroparesis. A similar pattern can occur where there is an autoimmune basis too so I suggest some basic antibody testing (ANA panel at least and GAD 65) as it can have an insidious link to a paraneoplastic syndrome, although that is quite rare.

    Immune dysfunction in gastroparesis is also evident on full thickness biopsy of the stomach. Patients with gastroparesis show increased CD45 immunofluorescence in the myenteric plexus and increased CD68 infiltration in the muscle layers, significant of increased immune cells and macrophages expression, respectively, in the stomach.

    As advised above, a g-tube does not bypass the problems caused by slowed motility, an NJ-tube is the only way around it so the catch 22 is that you need a trial of one of these during an active GI flare to prove that the issue is one of slowed motility if a diagnosis not supported by an emptying study.

    p.s. I know of a number of people who display all the symptoms of gastroparesis but have normal emptying studies.They invariably get diagnosed as Non-ulcer Functional Dyspepsia, one of those bullshit terms to say that the cause is currently unknown.
     
  6. lgibson2017

    lgibson2017

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    I should mention I have a history of gastric and peptic ulcers, including one right at the emptying port of my stomach (the duodenum, I think it's called?).

    I had the gastric emptying thing done (the one with the eggs, as kangaSue said), but I don't believe I've ever been tested for liquids only. I ate eggs, toast, and drank water, and then they tested that.

    I do, as kangaSue said, have every symptom of gastroparesis to a T

    ALSO, my IBS/motility issues/whatever tf this is started after I got Salmonella from raw cookie dough (we believe that's where I got it, at least). It was a really bad infection, should've been hospitalized, etc. etc. and I've had these issues ever since. It feels like my G.I. system just never recovered. I was allergic to dairy, eggs, and mango for years afterwards but the allergies eventually went away.

    As for Jonathan Edwards' argument, that makes a lot of sense. Other than a really sensitive gag reflex, (and I mean REALLY sensitive), I don't have any problems with swallowing.

    I guess I'm just fed up. I've tried probiotics, medications, all SORTS of diets, eliminations, and I still feel like I have a stomach virus every single day and I'm just *tired*. I'm tired of eating and feeling bad. If I could just stop eating, I would. On my really bad days I border on almost an oral aversion because I just get terrified to put anything in my mouth. I don't know if a liquid diet/g-tube would work, I don't know if jejunal feeding would work, but at this point I'd take a f-ing IV because I'm just so tired of feeling so awful. And that's just the stomach part; let's not discuss the constant fluctuations between diarrhea and SEVERE constipation to the point of going to the ER to get blockages fixed. When I'm constipated, it feels like my bowels just stop moving. At my worst, I was taking 8 laxative pills EVERY SINGLE DAY and STILL was producing few to no BMs. I just don't understand and I'm just so DONE.

    I plan on making appointments with an adult GI and a dietician and discuss possibly going on a liquid diet or what would work or whatever I don't know it's just been 8 years and I've tried everything BUT a tube and at this point not ever having to eat sounds pretty damn appealing.


    Thank you for any and all advice,

    Lauren
     
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  7. kangaSue

    kangaSue Senior Member

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    That is exactly how I described my gut symptoms before I was diagnosed with gastroparesis, I've since learned it's a very common analogy in those with gastroparesis. Enterovirus is one of the possible causatives
    https://www.healthrising.org/forums...ble-causative-etiology-of-gastroparesis.4597/
    It's not necessarily a case of fluctuating between the two. Very severe constipation can also cause diarrhea. If stools are hard and are not moving, they cause back up of more watery contents behind them. Eventually the watery contents spill around the sides of the hard constipated stool and cause sudden diarrhea which becomes ongoing but the fecal mass remains in situ.

    Autonomic Neuropathy is another lesser explored cause of constipation, something which can be idiopathic or autoimmune related.
    Something that gets overlooked with GI complaints is abdominal vascular compression issues. Losing weight can make the symptoms worse the more weight you lose and can result in chronic intestinal ischemia. Does eating cause you pain about 30 minutes later? Can't say that I have seen it said to occur as an intermittent thing but get a doctor to listen to your bowel sounds for signs of an epigastric bruit. Having one of these with unintentional weight loss and fear of eating are the classic triad for intestinal ischemia. A Doppler Ultrasound of the mesentery arteries is another non-invasive test to do.
    http://forums.phoenixrising.me/inde...ith-pots-and-childhood-cfs.48793/#post-805637

    There's any number of different ways GI dysfunction can go as far as cause is concerned and can take years to work through it all. Autoimmune conditions are another big field, what antibody testing have you had, if any? You at least need an ANA panel run. There are a number of connective tissue disorders and vasculitis that can be ruled out with an ENA panel and ANCA blood test.
    Try to find one that is a motility specialist, most run of the mill types are fairly useless with anything other than classic text book symptom presentation. I speak from experience and even a motility expert can be a waste of time and effort when you don't fit into their "usual patterns of disease" criteria.
     
  8. lgibson2017

    lgibson2017

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    Update: I caught what seems to be a regular ol' cold on top of my seasonal allergies, and it feels like my GI system has just skidded to a screeching halt.

    I can't get even my favorite, go-to foods down, and I'm probably dehydrated because I can't get much fluids to stay down, either. I'm a bit scared that this virus or whatever is gonna send me into a full-blown flare, but I guess that would be the best time to start experimenting with a liquid diet or a tube or something.

    I'm working on getting an appointment with the GI and I hope it can go quickly before I end up hospitalized like I was with my last flare.
     
  9. kangaSue

    kangaSue Senior Member

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    Do you get recurrent respiratory tract infections along with everything else? If yes, would Common Variable Immune Deficiency (CVID) fit for your symptoms? It can cause a lot of GI issues mimicking gastroparesis and cause episodes where the GI tract seems to shut down.
     
  10. Valentijn

    Valentijn Senior Member

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    I still don't see how a tube would be expected to help with GI problems. A tube typically goes into the stomach. The only thing it's bypassing is the mouth and throat. So unless the problem is solely with chewing or swallowing, it's not going to help.

    And with your motility testing normal, I just don't see it happening. At the very least, you'd need to get a specific problem diagnosed, and the specific location, before a tube would be sensible to even try.
     
  11. PatJ

    PatJ far and free I gaze

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  12. lgibson2017

    lgibson2017

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    I have tried Iberogast....and threw it up every time.

    As for CVID, I *highly* doubt it; I haven't caught a cold in years. Just bad timing :/
     
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  13. kangaSue

    kangaSue Senior Member

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    Depends on the situation. Igibson2017 asks about a G-tube which certainly wouldn't help in this situation nor would a surgical PEG into the stomach however a tube bypassing the stomach by extending into the jejunum (NJ-tube or PEG-J tube) could be a solution.
    Motility testing isn't an exact science and many centers only do a 2 hour emptying study when a four study should be done as there can be a "delayed delay". Also, you can have slightly delayed gastric emptying (which can be interpreted as normal) but can have severe GI symptoms - emptying rate doesn't equal symptom severity. So called "Functional Dyspepsia" can similarly occur with severe symptoms but tends not to have signs of any delayed gastric emptying.

    I haven't gone looking into FD in any depth so don't know if it's something that can wax and wane in severity.
     
  14. PatJ

    PatJ far and free I gaze

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    What about sneaking it into the stomach: take a very small amount (maybe just 1/4 tsp) of Iberogast in your mouth and hold it there for awhile while it mixes with your saliva (and to allow some of the Iberogast to absorb into your body via the oral mucosa) then swallow that tiny amount. Repeat until you've (hopefully) swallowed a full dose.
     
  15. kangaSue

    kangaSue Senior Member

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    Good point. Someone was telling me that they cured their gastroparesis with Iberogast but didn't tolerate it initially so started with just one drop per day for a week then 1 drop twice a day for a week then 1 drop 3 x a day for a week and then continued to add one drop to the total 3 x a day each week until built up to the full dose of 20 drops per time.
     
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  16. lgibson2017

    lgibson2017

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    So I met a very inspirational cancer survivor over the weekend, and she, being in the medical field, got to talking with me about this very topic and she brought up a VERY good point that I'd never thought about before!!

    So I choke on everything. All the time. 9 out of every 10 meals I'm gonna choke on something. And about half the time, I aspirate. I breathe that shit alllllll the way down. Every single time I vomit, without fail, I aspirate. If I'm really nauseous, I cannot be left alone because if I vomit I will aspirate.

    I never thought my choking/aspiration problems were a *problem* I mean, I knew aspiration was dangerous, but I've never gotten aspiration pneumonia so I thought it was just a "me thing" and that was it.

    Yeah turns out aspiration is bad. And I aspirate so much I barely even cough anymore. Like, usually when you choke, obviously, you cough a bunch. Yeah if I choke on something I barely even cough anymore, I'm so used to choking.


    Long story short, she thinks jejunal feeding is not only my best option, but medically necessary as well due to my choking/aspiration problems, especially because I also have reflux and often aspirate in the middle of the night.


    So, yeah. She agreed with the tube idea, just not a g-tube, she said jejunal feeding is what I "need" (I put need in quotes because that's just one person saying I need it, idk if it's actually a life-or-death matter based on aspiration risk)
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    I've been wanting to reply to this thread but did not have a chance. That is horrible that you choke on food 9 times out of 10 and I agree w/you that aspiration is very dangerous. I have never choked on food but reached the point in mid 2015 that I was allergic to all food ingested but water. In my case, the hospital said tube feeding would not work b/c no matter how they got the food in, I would still be allergic to it.

    Your case sounds totally different b/c you are not reacting allergically (unless I am mistaken?) vs. you cannot swallow the food and then it seems like tube feeding would be helpful. (The allergic reactions are not an issue for me at present but was pure hell while they were occurring).

    When do you see the GI doctor? I was also curious if you have been tested for any auto-antibodies that could be weakening your muscles and ability to swallow? For whatever reason, the auto-abs that I have weaken my breathing & diaphragm strength, as well as overall arm strength, but have never affected my ability to chew or swallow. But we are all so different, I would be curious how you would test on a panel for MG or LEMS?
     
  18. lgibson2017

    lgibson2017

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    I see GI on April 24th, which leaves almost a month of wondering how this is gonna go and what I'm gonna do. As for now, I've already lost weight just within the past week.
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    Is there any way to get a sooner appt if you explain the urgency or if a family member or another doctor calls? Also, can you get on a waiting list for cancelations? I know back in 2015, I tried everything to get a sooner initial appt w/my now MCAS doctor (as part of my hospital discharge plan) but it just was not possible. He was booked solid and we tried everything to get a sooner appt but ended up having to wait a full month to get in. But sometimes you luck out and there is a cancelation, etc.
     
  20. lgibson2017

    lgibson2017

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    I'm on the waiting list, hoping there'll be a cancellation somewhere
     
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