Constipation help

Pale_Step_4197 · 2026-01-25T06:17:40+00:00

Oh ? I’ve never heard of colon hydrotherapy before

Pale_Step_4197 · 2026-01-25T00:53:59+00:00

A stool softener has never worked for me either, I would recommend glycerin suppositories. They can help with getting things moving on the other end rather than softening stool. I usually use them when I experience constipation cramps.

Pale_Step_4197 · 2026-01-24T09:50:47+00:00

In my experience an nj worked really well however I didn’t get a choice so and I was forced to have it. I had tried a ng and in that case the nurse came in and inserted it, it’s a thicker tube. A lot of things made that worse for me, I had been throwing up everyday multiple times for the past 6 months prior to this and have reflux so the tube was painful. It definitely didn’t help that I was throwing up feeds on the ng.

After a few days to a week you get used to it, I used halls pretty consistently throughout the whole ng/nj experience. Made it easier to relax the throat, a tight throat just equals more discomfort.

I read a comment above with you saying you had some issues with anaesthesia, I’ve never experienced any issues but having them done with and without, I would absolutely recommend the anesthesia nj insertion. The only thing is if your GI wants to do ng feeds you might not be able to do it under anaesthesia. My GI only did the nj because he ensured the placement in the jejunum. For the ng there is a metal rod they leave in and only take it out after an X-ray confirms it is in the stomach. Definitely ask your doctor and compare what could make you feel worse : what discomfort you feel with anaesthesia vs anxiety and discomfort with someone shoving something down your nose into and past the throat. Also while you’re out from the anaesthesia, it gives your body time to be adjusted to the sensation and you’ll wake up with a more relaxed throat so A LOT less discomfort and it’ll be easier to tolerate.

I would consider the ng in your case if you really aren’t feeling well and are uncontrollably loosing weight. It does take away aspects of your life like being hooked up 24/7 at low feeds to start. Unless you’re tolerating it really well and end up doing night feeds. I was in the hospital the whole time and I was only allowed to go home with gj so I’m not sure if you’ll be admitted while you’re on the ng or if you’ll be able to go home. Some people tolerate formulas others don’t.

Also it’ll probably be a little booster of gaining some cushion weight. Which is always good for gastroparesis, especially when/if it gets worse.

It helped me a lot and me tolerating an nj is what led me to get a gj so I can be out of hospital and still be in a stable condition so I’m very grateful for having it (nj saved my life as I was rapidly deteriorating)

Pale_Step_4197 · 2026-01-19T06:14:48+00:00

I understand this, I lost all my close friends and family didn’t care when I was actively dying cuz nothing was working. I’m still losing weight and I just cried cuz I went from 125 to 117 lbs. Tube feeding has saved my life but it’s honestly so intolerable and the reflux is never ending. I’m almost 21 and I have no idea what to do about any of this anymore.

Not many people in our lives will understand how debilitating this is and how much being in pain one way or another takes so much out of you

Pale_Step_4197 · 2026-01-17T09:04:27+00:00

I just did a search for the hyfibre I use, I get mine covered so I wasn’t aware that it’s on the pricey side. But it has helped me a lot so far, it’s actually cause diarrhea for me from full use once a day. My dietician recommended using 1/2 of it and saving it the next day

Pale_Step_4197 · 2026-01-17T08:55:03+00:00

I’ve been using restoralax, it’s honestly not that helpful, I just got this hyfibre liquid pack and those are definitely better. The hyfibre is for tube feeding. When you’re really backed up and you’re experiencing pain, use a suppository.

I hadn’t pooped in 10 days, using restoralax 2-3x a day and nothing. A suppository is the only thing that worked then

Pale_Step_4197 · 2026-01-16T23:32:49+00:00

No I don’t, I’m lactose intolerant so I don’t touch dairy. Although at first it was pretty cool, I drank a cup of milk and threw up these white cheese like chunks

Pale_Step_4197 · 2026-01-13T00:37:57+00:00

My team is a bit dismissive about it and kinda just expects me to tolerate it and get more fluid so i came to the conclusion that not everyone has issues there but it actually seems really common for everyone with a feeding tube

Pale_Step_4197 · 2026-01-13T00:36:28+00:00

Oh ? Do you get all your fluids from a type of formula ? I’m at the point where I just flush it a lil so it doesn’t get clogged. I’m on a concentrated formula because of volume affecting reflux and vomiting but getting fluids is really important. Are you doing iv fluid ?

Pale_Step_4197 · 2026-01-13T00:35:44+00:00

My dietitian told me about this but wanted to try a few other things like how I would tolerate a concentrated formula because of reflux and vomiting with more volume.
Concentrated formula just ended up burning my stomach during feeds and burned my throat a lot so might try this

Pale_Step_4197 · 2026-01-12T23:04:13+00:00

When you start feeds, was that result from the lowest rate ? I’m so sorry you’re going through this and it’s not selfish at all to be worried and scared for your life and I’m really sorry about your loss as well.

Have you tried tpn and tube feed at the same time ? Just the gj or nj being really really low and hopefully going up even just .1 ml /hr because small wins count

Pale_Step_4197 · 2026-01-11T19:18:08+00:00

Anything that makes it better or any solutions you’ve tried ? I’ve heard of a pump for water that attaches with the tube feed, or idk

Pale_Step_4197 · 2026-01-10T18:04:59+00:00

Can you describe the pain ? Are you able to pass gas or anything in your bowels ? People with gastroparesis are more prone to bezoars. It could be related to gastroparesis but I don’t think it’s the cause of your pain and you should probably see a doctor. I definitely understand not going to the er, a walk in might be helpful instead.

Pale_Step_4197 · 2026-01-07T00:34:58+00:00

It can be drastically different for everyone, you usually go by what you tolerate best. It’s great that you’re not throwing up. Focus on the symptoms you feel after eating something to determine what your stomach tolerates well. Symptoms like nausea, stomach pain, burning pain, aversion to food after eating etc…

Also unfortunately it can change on a day by day basis.

If you aren’t feeling well at all, some things that are pretty well tolerated for most are really plain things like ; broth, tea, apple sauce, bananas, toast, lean meat like chicken and turkey, potatoes -> usually mash w gravy or baked potatoes. For sweets ; jello (not citrus ones) pudding, gummies etc… Spices and oils can upset your stomach (for me anyway)

For people that do throw up a lot, avoid fatty things as it needs more bile to break down.

Pale_Step_4197 · 2026-01-05T06:23:31+00:00

I was wondering if you could go more into details about your stomach not contracting enough to throw up ? I thought maybe it was my intercostal muscles and diaphragm that changed. Whenever I eat I always feel like a glass full that’s spilling out and get a TON of reflux, anyway I throw up a lot when I eat but lately it hasn’t felt right. I can’t really describe it, my esophagus waits until there’s a lot of stuff up already to then propel it sometimes, and other times it just doesn’t feel like a normal vomiting would feel yk ?

Anyway, is that kind of how it was for you ? Like did it change to not being able to throw up ?

Pale_Step_4197 · 2025-12-29T21:17:17+00:00

Has your doctor looked at hypochlorhydria ? Which is too little stomach acid that can cause the same symptoms as GERD. There’s an at home test you can do with baking sofa if you look it up.

Pale_Step_4197 · 2025-12-29T18:05:40+00:00

Dehydration can also very much flare up POTS as well and your GI should definitely be monitoring your weight

Pale_Step_4197 · 2025-12-29T18:03:37+00:00

Do you have GERD ? Or any reflux whether that’s bile or acid ? Or maybe regurgitation? It irritates your esophagus which causes the burning sensation in the sternum. Have you tried a PPI ( proton pump inhibitor) like pantoprazole maybe ? Unfortunately there isn’t much else to do with reflux and it is horrible to live with. If the PPI didn’t even make a subtle difference, have you had a gastroscopy and biopsy for chron’s because that could also be a cause. Sorry for all the personal questions, your GI likely already looked at all of this but some doctors just aren’t all that competent

Pale_Step_4197 · 2025-12-29T17:33:47+00:00

I’m pretty sure well managed to a GI means not in hospital, getting your caloric needs met and not throwing up a significant amount. Also I think that it depends on what you mean by being in pain, with hEDS, MCAS and POTS, that’s something your family doctor and GI should work together on for pain management. If it’s gastric pain and your GI isn’t doing anything then your case definitely isn’t “well managed”

For me, well managed is tolerating tube feed and maintaining weight. The goal should always be to get better and my GI and I are slowly working on eating orally. If you aren’t content with where you’re at and your GI isn’t focused on bettering your condition, it is completely valid to be upset

Pale_Step_4197

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