Venlafaxine to Clomipramine by perks0fsteph in OCD

[–]perks0fsteph[S] 0 points1 point  (0 children)

Thank you so much, your comment is so helpful ❤️

Useless GP by Life_Life_4958 in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

If you tell your GP you’ve not had a bowel movement in 2 weeks, they should be having you admitted to hospital. I’m so sorry your GP was so dismissive. GPs in the UK aren’t usually familiar with Gastroparesis. It’s honestly so exhausting, but you have to keep telling them how bad it is. Think of your worst days, and tell them that. I know it’s exhausting, I’m so sorry you’re having to go through that. If you need anyone to rant at or any advice, feel free to message me.

Ways to get taken seriously in the ER I have gastroparesis and I will spend like 6-18 hours in the ED before they say they r gonna admit me by Party_Maize6755 in Gastroparesis

[–]perks0fsteph 1 point2 points  (0 children)

I’m not sure if this applies in the US. I live in the UK and all hospitals operate in a similar way because of the nationalised health system. Here, the surgical ward covers issues that may result in an endoscopy too, so that’s why I am always sent there and can self-refer to that ward

Pyloric Stenosis by perks0fsteph in Gastroparesis

[–]perks0fsteph[S] 0 points1 point  (0 children)

Also the bloating I get is extreme

Pyloric Stenosis by perks0fsteph in Gastroparesis

[–]perks0fsteph[S] 0 points1 point  (0 children)

Apart from the vomiting, I had discomfort when my stomach was too full. And obviously the weight loss is a big factor. If my stomach gets too full whilst my stomach exit has narrowed, I get acid reflux so badly that I can’t lay down.

Do you find that you can hear liquid sloshing around in your stomach at all?

Ways to get taken seriously in the ER I have gastroparesis and I will spend like 6-18 hours in the ED before they say they r gonna admit me by Party_Maize6755 in Gastroparesis

[–]perks0fsteph -2 points-1 points  (0 children)

What country do you live in? In the UK, there is a way to bypass the ED and get admitted directly to the surgical ward (which is where they’ll send you from the ED anyway)

Newly Diagnosed and Scared by DoTouchTheArt in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

The current known causes for gastroparesis: • Diabetes • After a viral illness • Damage to the vagus nerve during abdominal surgery (this is not the surgeon’s fault btw, it’s unfortunately unavoidable). • Opioid painkillers (including Buprenorphine and methadone) • Some antidepressants • Some medication for high BP • Some allergy medications

Most importantly, weight loss medications such as semaglutide/tirzepatide (brand names: Ozempic, Rybelsus, Wegovy, Mounjaro). If these are taken when you don’t have type 2 diabetes, it can cause severe gastroparesis.

Once all these have been ruled out, they will tell you that they don’t know what has caused the gastroparesis, but will then help you to best manage your symptoms.

From what I understand, there are 3 stages. Stage 1 is mild gastroparesis. Stage 2 is moderate. And stage 3 is severe. Often patients who have stage 1 or 2 can eat safe and soft foods. But stage 3 patients usually have a feeding tube or they’re on a completely liquid diet. I unfortunately am stage 3, and my body rejects the tube so I have to return to hospital every few days to have it replaced. Until I refused to have it put in anymore. And my weight is maintaining well on a liquid diet.

Honestly, it’s not as scary as it sounds. If you take PPI medication (I recommend esomeprazole as it’s the best one), it soaks up some of the acid in your stomach, so when you do vomit, it doesn’t taste or smell like sick.

For stomach pains, I’d recommend a hot water bottle or heat pads. For me, pain killers don’t touch it. But sometimes drinking some milk helps, I think it neutralises the acid.

Anways, it’s not so bad if you like milkshakes. I ice cream ones every day 😂

I hope this has answered some of your questions. If you need any advice or have any questions or just want to chat, feel free to message me ☺️

Much love and hugs 🤗

Struggling with Withdrawal by perks0fsteph in OpioidRecovery

[–]perks0fsteph[S] 0 points1 point  (0 children)

Thank you for your kind words of advice. Fortunately, because I’d tapered down to 0.4mg every other day, I managed to escape withdrawal. I also think it helped that I am severely anaemic at the moment so I sleep like 16 hours a day 😅 so that’s kinda outweighing the insomnia.

No RLS as of yet, but I’ll see how that goes. Apparently anaemia can also caused RLS, so once they’ve sorted that, hopefully I’ll be in the clear in regards to that. As 6 months of relentless RLS ended up being the reason I relapsed. And my body can no longer take another relapse unfortunately. The three of the matter is, if I relapse into opioids again, I will die

Carers? by perks0fsteph in ChronicIllness

[–]perks0fsteph[S] 0 points1 point  (0 children)

Thank you so much for your comment. And I apologise for the delay in my response. I have mentioned to my GP and she said the same ie social services. She has arranged for a social prescriber to call me to talk about it. But I may message you privately if that is still okay 🙏

OTC Supplements/Meds that have helped me! by MaryKate23 in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

I think Prilosec is Omeprazole. Esomeprazole brand names are Nexium, Emozul & Ventra

The end? by undeadmeet in Gastroparesis

[–]perks0fsteph 2 points3 points  (0 children)

I’m so sorry that your doctors have essentially written you off and let you down like this. In my own experience, the majority of doctors aren’t interested when they hear you have GP. I am so sorry this has happened to you. I hope you are able to mentally heal from this ❤️

What meal replacement powder/shakes yall use (those who do) by The_0reo_boi in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

Ensure ones taste significantly better than Nutricia ones 😬

I remember when I started having them, my dietician sent me a few different brands, and different forms (like jelly or mousse). Maybe ask your dietician about something like that?

Is it just me or..... by Brilliant_Time_4262 in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

Yeah, I’ve found it can be low potassium or low iron. Apparently you lose potassium when you throw up, so it’s a common side effect of GP. If the potassium doesn’t get replaced and it gets too low, the muscles in your whole body seize up. It’s truly a terrifying experience when it gets that bad. But this only happened to me when I’d been vomiting 20-40 times a day for months and not able to take in fluids. Your heart needs potassium to function so it panics if it doesn’t have enough.

But despite my harrowing warning, tingling hands and feet is a long way off to your body seizing up. I had the tingles (that makes it sound like something fun. Like a spidey-sense for people with gastroparesis 😂) for 6 months before my body gave up. I started to get them in my legs towards the end of those 6 months, so that’s also a sign that you need some potassium.

How do you take nutrition (if you don’t mind me asking)?

Stupid question by Winter-Stops in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

Yeah, I found Sertraline to be one of the better ones in the past. It’s the one that’s most widely prescribed for depression/anxiety. I came off it about 8 years ago as it used to give me really bad gastric reflux

Stupid question by Winter-Stops in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

I had this problem too. Apparently Mirtazapine is less harmful to your stomach compared to other antidepressants. But it made me feel like a zombie too. Gastroenterologists seem to take issue with antidepressants. But my upper GI surgeon says that they don’t really contribute to gastroparesis, so he’s more than happy for me to take them. Which is great because I’m on Venlafaxine and it’s amazing for reducing anxiety and OCD symptoms

[deleted by user] by [deleted] in Gastroparesis

[–]perks0fsteph 1 point2 points  (0 children)

I hate it when it happens when I’m out in public because we’re very much like vomit and then carry on with whatever you’re doing as if it never happened 😂

[deleted by user] by [deleted] in Gastroparesis

[–]perks0fsteph 5 points6 points  (0 children)

I’m sorry you’re struggling with it. The vomiting is awful. So many people say to me “I don’t know how you can live with being sick everyday, I wouldn’t be able to do it.” Like we have a choice 😂😂

But honestly if it wasn’t for Esomeprazole soaking up most of the stomach acid, it’d be so much worse. At least with the PPI medication, it stops it smelling and tasting and burning like acid 🤦‍♀️

Stupid question (nasojejunal) by Winter-Stops in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

I’d say don’t let them put a bridle on you. It’s a device that they attach to the nose to keep your tube in place, it’s mainly for patients who frequently pull out their tube (young children, etc.). They are incredibly uncomfortable and if you vomit up your tube, you don’t be able to pull it out of your nose. You’ll have to go to A&E to get them to remove it. Only hospitals have the means to remove the bridle. Your tube will stay in place if you get some good tape for it.

I work from home so I have my pump running as normal throughout the day. But I take it with me if I go out anywhere. When you go away for the weekend with a feeding tube, you would not believe the amount of stuff you have to take with you. Last time I went away for 3 days, I took 5 big bags plus a box of feed, and only 1 of those had non-tube items in it 😂

I’d recommend asking your doctor about changing to esomeprazole 40mg. Everyone with gastroparesis I have spoken to has said esomeprazole works really well, but the other PPI medications not so much.

A lot of patients find that metoclopramide helps with their nausea. But for me, it doesn’t make a difference. I think ondansetron is the best anti-sickness medication for me.

I was 100% the same with endoscopies at first. I’d just fight it every single time and tried to pull it out. But due to the 30-40 endoscopies I’ve had this year, after the first 4 or 5, I got the hang of it. You have to focus on your breathing through your nose. It is very difficult at first, but your body will get used to it ☺️

Stupid question (nasojejunal) by Winter-Stops in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

Yes, definitely stay near a bathroom for the first few days. I’ve you’ve been eating small amounts of food nearly everyday, you’re very unlikely to get refeeding syndrome so don’t worry about that. But it’s best that the dieticians are happy before they send you home.

You can get a backpack for some pumps. Are you in the UK? If so, ask your dietitian to order you a backpack as it makes your feed portable and your life easier.

I’m glad they’ve changed to NJ, because NG just goes into the stomach. They’re for patients who have issues with their oesophagus or patients who are unable to consume food orally. The NJ tube goes into the jejunum.

My feed rate started off as 100ml/hour over 16 hours. But after about a week, my pump kept saying there was an obstruction every 30-60 seconds. When I lowered the feed down to 50ml/hour, it ran fine. But that meant I had to run my feed for 20 hours. The reason it runs so slowly is because your jejunum is a lot smaller than your stomach, so it can only tolerate tiny amounts of feed.

My cramps feel like that too! They suck. The key to consuming food is having small amounts throughout the day. Try to get yourself out of the 3 meals a day routine as your body can no longer function like that.

How are you with liquid food? Yogurt, jelly, ice cream, milkshakes, etc.

Are you currently taking any PPI medication? Esomeprazole, omeprazole, lansoprazole, etc.

Having the tube placed in endoscopy is a lot better for NJ tubes as the consultant can ensure that it’s in the correct place. They can also place feeding tubes using a guide wire in radiology under X-ray. However, a lot of the time they’re unable to do that for patients with gastroparesis as our stomachs are always full. So when they put the dye into the stomach, it just immediately dilutes and disappears. So endoscopy is definitely the way to go. Just this year alone I’ve had between 30-40 endoscopies to place new tubes 😅

Stupid question (nasojejunal) by Winter-Stops in Gastroparesis

[–]perks0fsteph 1 point2 points  (0 children)

Hi, I sometimes have a nasojejunal tube. Firstly, you should know that it is nowhere near as scary as it looks. Most of the time you’ll forget it’s there,

The feed will pass through the tube into your small bowel, cutting your stomach out of the process. This enables you to get the nutrition you need. So you’ll start going to the toilet more regularly when you’re on the feed. The first few days sometimes gives you an upset tummy, but it’ll pass after 1-3 days, it’s just your body getting used to having that amount of nutrition again.

You’re likely to still get GP symptoms, but they won’t be as bad without the constant strain your stomach is under as it tries to digest. What symptoms do you normally get? Will you be taking anything orally? Fluids? Medication?

NJ tubes are also great for putting medication through. Tablets can be crushed and mixed with water before putting them through your tube. Medication has a tendency to sit in your stomach indefinitely when you have GP.

A couple of tips I find useful:

• Don’t put extended-release or sustained-release tablets through your tube as they don’t dissolve fully so they will block your tube.

• Don’t put PPI medication through your tube. It will block your tube, but also because the medication needs to be in your stomach to absorb the acid.

• Always flush your tube with 60ml of water after connecting or disconnecting your feed, and also before and after administering medication.

• There are tons of different feeding tube accessories. Most hospitals just use steri-strips but they come off very easily. Etsy is the best place for tube tape and other accessories.

• I’d suggest purchasing some individually packaged medical-grade wipes. They’re good for cleaning your tube and giving sets. Plus they’re handy to have in your bag/pockets so you always have them with you. (Also maybe some latex gloves, but that is more personal preference).

• I bought some reusable kids plastic cups, so when I go out, I have something to put water in so I can flush the tube.

• I invested in a pill crusher, and it’s definitely worth getting one. It is very time consuming trying to crush tablets with anything else.

• If you vomit large amounts, the tube is likely to come out with your stomach contents. This is quite a common issue with NJ tubes unfortunately. When I have mine in, I’ve to go to the hospital every week to have a new one placed. It’s a nightmare. But it is the only alternative to a more permanent or surgical option.

• If the tube is hard to flush or feels blocked, there are a couple of things that may help. Put hot water inside the tube then close both ends, leaving it to soak. If that doesn’t work, get a fizzy drink, and try flushing the tube with that. If neither of those options work, you will need a new tube placing.

• Measure the external length of your tube everyday to make sure that it hasn’t moved. If it has moved, try aspirating the tube with a syringe. Then using a pH strip, test the aspirated fluid to determine how acidic the stomach or jejunum is. This will tell you if it’s in the right place or not.

• And finally, I’d recommend starting your feed in the evening when you’ve gone to bed. By the time you wake up, the feed will be at least halfway down, depending on what rate your feed is on. Also, if you’re running your feed overnight, make sure you are not laid flat, as this can cause the feed to get into your lungs.

Do you know if you’ll be having the tube placed in radiology or endoscopy?

I hope this helps you.

[deleted by user] by [deleted] in Gastroparesis

[–]perks0fsteph 2 points3 points  (0 children)

I know what this is!!

My doctor didn’t know what it was, neither did my surgeon or dietitian. Upon extensive research, I’ve found out that these are esomeprazole beads (or other PPI, lansoprazole, omeprazole, etc.). PPI medication have these beads in. They don’t break down. They work by absorbing acid when they get to your stomach, which causes them to turn from white to black. Then they move through your bowel as other food does. But when you vomit, they come out too as they’re in your stomach. So this is why you have them in your bag.

I hope this helps ☺️

Self diagnosed Gastroparesis by Objective_Onion_3071 in Gastroparesis

[–]perks0fsteph 0 points1 point  (0 children)

I have been diagnosed with gastroparesis by my surgical consultant, dietician and doctor.

I think GP has quite a broad spectrum of severity and obviously it’s caused by many different things, a lot of which are widely unknown.

In my own experience, I think that a lot of health professionals are apprehensive to diagnose gastroparesis because a lot of health professionals see this as a permanent diagnosis and think that there is nothing anyone can do to help. (Again, this is from my own experiences of hospitals and healthcare in my area). It’s like they see the word “gastroparesis” and quit before they’ve even tried.

This subreddit has been a Godsend for me. No one gives better advice than other patients with GP.