IamA 25 Year Old Woman With a Feeding Tube. I Have Been Pretty Much Food Free Since August. I Am Strictly on Tube Feeds and Am "Fed" AMA!

How has it affected your day-to-day life since you've had it?

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Did this with a supra pubic catheter, can confirm, don't snag wires coming out of you on things. Accidentally a word

yep. No snagging wires.

Oh god the imagery of it being yanked out...

I've had nightmares of it before.... :/

I just wanted to bring up how awful that tube feed smells... Is the peptamen infused with a Kangaroo pump? Do you have to check residuals? If so, how often?

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It does smell exactly like barf. Might I add, you have an inspirational attitude. And I hope you get to safely enjoy burritos 6-8 months from now..

I'll probably be on like baby food in 6-8months but thank you so much :-).

This is probably a super dumb question, and I'm likely too late, but I'm curious -- do you still have bowel movements?

LoL! I still do, I gotta admit I'm more constipated that not which isn't fun because it causes pressure against the tube/skin and causes a bit of pain.

Your edit says you're Schizoaffective, do you have any issues with losing touch with reality?

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God disassociation and hallucinations suck so much ass. I'm sorry you're dealing with this.

You mentioned elsewhere that you'd been going through CBT and I don't know if they suggested this to you but it seriously helped me. When I'm having a panic attack or being dissaciative I grab my stuffed animal or my cats (something real to hold on to, I feel oddly disconnected from touch when hallucinating so it's a way to reinforce reality.), and plan the next day, it helps reinforce routine which has been the biggest help to the people around me and myself who suffer with mental illnesses and keeps me sane. Just the act of acknowledging I'm having a fuzzy moment and then doing something about it by noting everything I need to do (but it isn't to important if i can't)

Dunno if it'll help but y'never know!

CBT has changed my life. I'm well versed in it and huge supporter of it. :-).

Of what consistancy is your poop? I need to know for.....science...yeah science.....

of course science.... or just a creepy fetish? I'll tell you anyway its pretty loose....

Is it possible to have any alcoholic drinks while you have it in?

None in fact even before the tube alcohol was a one way ticket to the ER for pancreatitis. I don't drink.

Just a question regarding being Schizoaffective, hope it's okay with you.

Do you ever feel like everything is unreal? And overwhelming? I've felt like that quite a lot the past months. A bit concerned about it, but excersise and being with people helps me to cope with it.

I have to be with people all the time too! Not just for my physical illness. I'm moving in with a friend soon so yah that is a thing. I would recommend you check out /r/schizoaffective - its a great group of people and we have an awesome wiki /r/schizoaffective/wiki/index/ that I pretty much created that could help you because the wiki isn't just for people with schizoaffective.

Since you said that maintaining the feeding tube is "like a full time job", does the amount of maintenance prevent you from gaining employment, going to school, or other time consuming activities outside the home?

Also, are you allowed to exercise or exert yourself physically? Obviously something like running probably wouldn't be the best choice with the backpack, but how about weightlifting or other things where you can relatively stay in one spot? Would exercise affect your caloric intake needs and mess things up? Do you need to be careful of how much physical activity you have per day?

I just finished up at UCLA this past December. I literally dragged myself to class with a feeding tube just to finish. I rocked a 7th year at school because of the illness. Right now I'm taking a gap year since I never had one and am focusing on getting better vs. working. I am able to exercise I just have to plan it carefully and I've noticed when I do exercise I'm more hungry so I might increase the rate of food to help soothe that beast.

How is it that coffee and tea don't upset your SOD? I know evidence points to high caffeine drinks causing spasms of the sphincter of oddi.

Have you found that opioids cause spasms, such as when you use methadone?

Have you found secondary gains from your feeding tube from the schizoaffective disorder standpoint?

Any difficulty with dysphagia at times?

Happy cake day!!

I don't drink a ton of coffee/tea maybe 1-3cups per day. So its not enough to cause spasms but enough to keep me satiated.

Have you found that opioids cause spasms, such as when you use methadone?

Yes and that is why I'm withdrawing/going off these medications.

Have you found secondary gains from your feeding tube from the schizoaffective disorder standpoint?

I'm not sure what you mean by this exactly but my schizoaffective has been "in check" so to speak since being sick.

Any difficulty with dysphagia at times?

None thank goodness!

Happy cake day!!

Thank you... I think I'm rocking it today with this AMA!

I have Crohns (albeit quite mild) and I've been hospitalised a few times, I've never had a feeding tube but I've had extensive IVs and I totally understand the idea of not feeling hungry, it's very bizarre!

My question to you is, short of a cure, what improvements would you make to your feeding system? It looks like those food packs would make perfect cartridges for a more streamlined method.

The only thing that is going to make it better is putting in the low profile tube which I get in July. So yah. :-).

What's with all the sex questions reddit!? Sheesh

Thanks for doing this AMA, I've really enjoyed reading about your journey. Good luck with everything.

Hahaha because? All reddit thinks about is cats and sex? hehe :-) Thank you so much!

Please forgive me if this sounds rude, bc I absolutely do not mean it that way, but if you aren't eating food, have you noticed any weight loss?

Overall the trend is weight loss but, I have gained weight at certain intervals and you are not rude at all :-).

What do you miss the most? Taste Wise? Food Wise?

I miss sushi and anything with cheese..... and alcohol - I miss Margaritas.

I had to sleep with a boot for plantar fasciitis for a couple of weeks. I tore it off every night usually without knowing.

What would happen if you tore it out by accident?

Also I saw you said you have a nice rack? This wouldn't be a deal breaker. ;)

If it got torn or yanked out it'd be straight to the ER for emergency surgery. I'm pretty sure it'd hurt like hell too if that happened too because it goes through my abdominal wall etc.

Also I saw you said you have a nice rack? This wouldn't be a deal breaker. ;)

Are you asking me out =P

Perhaps, but I've been around long enough to know

hahaha

Could you eat Soylent?

No. Just simply put I cannot really take anything by mouth except for Coffee, Tea and Water. I always hated the idea of Soylent - like why would anyone voluntarily just "get fed." and survive on that alone... having been through this I can see people on Soylent really missing food the way I do...

do you have boy friend if do you have sex with him ?

No. I do not.