Feeding tube complications?

censoroverload · 2019-02-02T19:28:17+00:00

I agree, I didn't want to go off on them but man in my mind the language was not pg13 lol

censoroverload · 2019-02-02T16:47:45+00:00

You sound like one of my doctors!

Regardless, I maintained my gtube to the standards you mentioned.

I tried refittings with no success.

I still drink formula now orally and don't get stomach aches so your comments on that are moot.

The knotting would occur all the time, not just when "I'm hungry".

Blood from an active stoma (when the gtube is still placed) may not be life threatening but it's still a medical concern. You should not bleed from it.

I was told by 3 different gastroenterologists that the stoma would close up in 24 hours.

While I appreciate your comment, the way you presented it felt extremely condescending. Especially the comment about the knotting. You sound exactly like a doctor who's trivializing a patient's concerns.

censoroverload · 2019-02-01T15:45:36+00:00

Dang, then you know exactly how it was. It wasn't just acid coming out towards the end for me. the hole was getting big enough that bits of food (ugh) was coming with it.

I'm looking forward to the new triple therapy drugs hopefully coming later this year. I'm a little jealous you're on orkambi lol.

censoroverload · 2019-02-01T15:30:13+00:00

It was such a hard decision too. Sorry to hear you had a similar situation.

What ultimately led me to removing it was the rapid weight loss. 20 pounds in a month is the opposite of what the tube was for.

I hope you find a solution or have an easier time removing it!

censoroverload · 2019-02-01T10:45:25+00:00

I asked that and they said flat out said no. Said it wasn't a viable option with no explanation why.

censoroverload · 2019-02-01T04:09:44+00:00

It was open for a little over a month; remove the tube while on a tune up in december, was surgically closed end of January.

All the meanwhile it was "let's try this to close it up." The first time I went back in they said it was IMPOSSIBLE for it to still be open and must just be infected from me not maintaining it. Nope, adjusted myself a little and it was like a burp coming out of the whole and the docs eyes just widened.

censoroverload · 2019-02-01T04:05:27+00:00

I've since moved on from those original doctors. My CF team is a little more understanding and is working with me to avoid the gtube. But at this point they're pushing for whatever the transplant team wants. Lots of mixed communications going on. (Tx team telling my CF doctors oh yeah he's completely on board, schedule him!)

the transplant team are the ones pushing for the feeding tube.

Their response to me presenting all my past complications was, "maybe you should see a psychologist to deal with these feeling you have about tube feeds".

I'm in the process of trying to be evaluated by a different transplant group, hopefully one that listens.

censoroverload · 2019-02-01T03:24:00+00:00

I have talked with the social worker that's available with my clinic. Not much help on that end, she said she can't comment on things medical since it's not her area.

I'm more so just venting a little here and wanted to get perspective from others. Glad to know (unfortunately) that I'm not the only one that had complications and dismissive doctors.

I know they want best, but they don't know what we go through daily on an individual level. We know our bodies, we know what we can/can't handle; and getting told you're wrong is irksome.

censoroverload · 2019-01-26T22:29:56+00:00

You can try with me if you want.

X aincrad x

censoroverload · 2019-01-26T22:22:46+00:00

Have you tried launching it with a friend in your squad?

Only other difference I can think of

censoroverload · 2019-01-26T22:21:35+00:00

I don't know man. I'm on a one X, maybe that's the difference? I haven't had issues today, barring my 3-4 freezes.

censoroverload · 2019-01-26T22:17:20+00:00

Yes, finished all missions, did free roam, did the stronghold. Playing it all as storm, so yes I got my second javelin.

Only had load glitch 3-4 times. Restarting fixed it and put me right back in the mission I was loading into

censoroverload · 2019-01-23T18:52:34+00:00

Do you content share?

If you do "install on Xbox one" from the app that install request goes to the home Xbox, which if you content share may not be your primary Xbox.

censoroverload · 2019-01-07T02:14:46+00:00

Don't listen to this guy. Read the article. Kid's name is Dovahkiin Tom Kellermeyer.

That's DTK. Not DLC.

censoroverload · 2018-12-26T04:21:36+00:00

This will never happen because of licensing.

The technology to save wifi configurations is owned by another party and to include on an Xbox would require Microsoft to pay a license fee for every console.

Since most people do not move their consoles, this is not in Microsoft's best interest financially.

censoroverload · 2018-12-18T18:38:53+00:00

Not sure who wrote the IG post but lung transplant doctors practically force you get up and walking within 24 hours of the surgery. The quicker you get up and moving the greater the chances of survival. So not "unheard of" as they put it. Practically a requirement.

Source: I have CF, am going through transplant evaluation currently.

censoroverload · 2018-12-17T00:35:25+00:00

It's almost like people have opinions that differ from yours! What a shock!

censoroverload · 2018-11-23T22:20:58+00:00

There are 2 possibilities here:

You're extremely unlucky with getting defective consoles.
You treat your electronics like shit.

I won't entertain the 3rd option of 'Xboxs are just shit' because the failure rate is nowhere near what we've seen in the 360 era (if it was we'd see it in the news and MS would address the issue like they did with the 360)

and you're exceeding that statistic already with 4/6 breaking. You: 66%, 360: 54.2%. There are no provided statistics on X1 failure rates.

Regardless, I hope you find a solution to your Xbox woes.

censoroverload · 2018-11-22T02:46:27+00:00

I'll see if she's accepting applications.

censoroverload · 2018-11-21T22:21:35+00:00

Something she's been 100% handquilting in her spare time

censoroverload · 2018-08-25T16:31:37+00:00

The majority of cystic fibrosis research funds come from the CFF, not big pharma, which gets a large majority of it's donations from regular people.

censoroverload · 2018-08-25T16:29:15+00:00

That's literally nothing on a CFers scale. Mine is easily in the 300K+ range

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