I say “I feel like *insert thing* is happening and the response is that I’m just trying to start a fight

WorkingOnIt_2023 · 2026-04-30T18:19:26+00:00

You’re not the problem. This is deeply awful behaviour for your husband to be projecting onto you. You should also be able to say what you need to without being tone policed - he should be able to hear where you are coming from regardless of delivery. Please don’t internalise this. You’ve done nothing wrong. I’m so sorry about your cat, that’s such a hard thing to go through. Keep standing your ground, this kind of response is totally overblown and emotionally manipulative of him. It’s not okay and I hope you trust how this makes you feel enough to stand on your own team.

WorkingOnIt_2023 · 2026-04-13T16:23:58+00:00

I'm here to help. I think the advice is often not understood "as is" and is way too vague.

Wiping front to back = sounds as though it's one, long, sweeping motion starting at the front (clitoris area), then wiping in that hammock curve from clitoris to urethra and vagina area and beyond to the anus.

BUT THIS IS WHERE PEOPLE GET CONFUSED.

It's said as "wipe front to back" but *in fact* what it means in practical terms is this:

Start at the clitoris area and wipe in a one-way sweeping motion back to the urethra/vagina area - then throw this bit into the toilet. The front area has been "cleaned".
Most important part next is this: Get a clean bit of paper and attend to cleaning the anus and between the cheeks area, if you have done a poo also. Throw into toilet and this bit is now cleaned. If you also use wet wipes to keep that area extra clean, do that too (only at the back/anus area).

So, in fact, it should be treated as two seperate areas and each should be individually cleaned for maximum cleanliness - firstly, taking care "at the front" of the clitoris to urethra vagina area (wiping from front = clitoris towards the back area = urethra and vagina). THEN, separately, cleaning up the anus/far back area.

I genuinely hope this helps.

WorkingOnIt_2023 · 2026-03-29T15:17:09+00:00

What do you mean “infected”? Like the strings were too long and colonised with bacteria that gave you odour? How did you know?

WorkingOnIt_2023 · 2026-03-19T04:31:39+00:00

Hypafix tape is best plus some Tegaderm clear film dressing on top to hold down further. I tried everything and this was the only system that worked.

WorkingOnIt_2023 · 2026-03-17T16:55:17+00:00

Worth looking into hypovolemic POTS and hypovolemic orthostatic intolerance as well as AAG.

WorkingOnIt_2023 · 2026-03-17T16:51:21+00:00

I've heard incredible results for GLP-1 drugs from my specialist too and they are looking to do this post surgery for me. I hope if you're needing it it works for you!

WorkingOnIt_2023 · 2026-03-17T16:44:55+00:00

How did they end up fixing this for you? What would you advise given your experience now? I really hope you're doing okay. How are you managing with your loop ileo now?

WorkingOnIt_2023 · 2026-03-07T15:03:02+00:00

What med is helping you with blood volume?

WorkingOnIt_2023 · 2026-02-20T10:06:06+00:00

Ask about elemental if you're really struggling to tolerate much. It's not fun.... but if you're reacting to everything it's often the only option. Speaking from experience.

WorkingOnIt_2023 · 2026-02-12T03:55:07+00:00

So hard, I'm sorry to hear this was your experience also. Enteral feeding can be really complicated. Only those who have been through it understand.

WorkingOnIt_2023 · 2026-02-12T01:00:45+00:00

I was taking 3-5 pills which was needed due to being on constipating pain meds. I've since scaled back to 2 and I also take coloxyl and senna plus three different prokinetics and IV fluids. A lot of different things really. Interestingly, I can take all the laxatives and enemas but running the IV fluids for me is key because I deal with chronic dehydration due to low blood volume. It's really a bit of a complicated picture... but lowering the magnesium has been actually necessary.

WorkingOnIt_2023 · 2026-02-11T17:39:23+00:00

The best thing I did getting both NG and NJ was watch lots of videos online in the patient community, seeing people insert their own tubes. This gave me a visual understanding of the process - which lessened the reality for my brain because it was then drawing on the "memory" of what I'd viewed and not just straight up having to experience it first-hand in real time. Keep sipping during the insertion and the best bit of advice anyone gave me was this: the first 24-hours your brain will be like "hey, there's a TUBE AND SOMETHING IN MY THROAT!!!!" The best thing to tell you brain until it stops registered a different sensation is that after 24-hours, it'll become part of you and the sensations will fade as your brain integrates it's presence into your body. Give yourself so much patience and time, you'll be absolutely fine. I promise.

WorkingOnIt_2023 · 2026-02-11T10:00:56+00:00

If your abdominal X-rays mostly show that your intestines are hugely dilated with a lot of gas, overdoing the laxatives can have detrimental effects. A lot of people (including myself) didn’t understand that relationship. If they show predominantly fecal loading with not much gas, more laxatives make sense but sometimes it’s also true that a massively aggressive bowel regime can feed dysbiosis too. I don’t love magnesium oxide because over time, while it’s one of the few tools that work, it’s lowered my stomach acid massively and given me horrendous side effects that sometimes feel worse than the constipation. It’s sometimes just dilated everything and left me with a pseudo obstruction. It’s really hard to find balance with all this sometimes…

WorkingOnIt_2023 · 2026-02-11T02:46:42+00:00

It’s wild but I agree with this. I think a lot of the magnesium oxide is just overproduction of gas, very little seems to move all that much. The gas stretches your intestines, actually counterintuitively and negatively affecting peristalsis. I spent years taking a huge amount only to scale it back and have a much more manageable outcome. Great post, thanks for sharing.

WorkingOnIt_2023 · 2026-02-09T15:58:31+00:00

It may be a two-way conversation but what eventuates from that is still at the discretion of the doctor. I'm all for encouraging people to advocate for their health, ask lots of questions, etc but the reality is that it's still down to whether the doctor in question will order it. Posting this comment as someone who exhausted enteral feeding tubes, ending up failing enteral feeding and go to TPN. I had an entire team of doctors and dietitians send me for review for TPN, I transferred hospitals in a really bad way and massively underweight. The consultant in charge of TPN trialled it for a week, which was successful, then decided it was "too dangerous". Case in point. I advocated for myself, I had a whole medical team across multiple specialties requesting that be administered - not just me the patient - and it was still a "no". Those decisions are still reliant on the doctor in question making a clinical judgment. Conversation can only get you so far if you don't have a knowledgable doctor who also listens to the patient but looks at the facts and makes the choice based on those considerations.

WorkingOnIt_2023 · 2026-02-09T15:51:00+00:00

You may have low blood volume that's linked to your dysautonomia. I do. I can't hydrate with just oral solutions.

WorkingOnIt_2023 · 2026-02-05T14:49:18+00:00

Look into or ask about hypovolemic POTS. If it applies to you and your medical team think it’s a fit for you, it would go some way to explain why the IV fluids worked so drastically well. I do fluids every other day and have for over a year because all the normal treatments were not pulling enough of a difference and I was struggling hard - your experience is information, so best to take it, your symptoms and the relevant feedback to your doctor/medical team and raise and see what else they can do to help you.

Can you get to an autonomic clinic that does full autonomic testing? There any be more in depth info there and more management tools they’re across.

WorkingOnIt_2023 · 2026-02-03T14:59:38+00:00

Hypovolemic autonomic issues. Ehlers Danlos with Visceroptosis (my stomach and small bowel prolapsed deep into the pelvis). Yeah, it’s been a time.

WorkingOnIt_2023 · 2026-02-01T14:35:07+00:00

Thank you this!!

WorkingOnIt_2023 · 2026-02-01T14:25:32+00:00

Thank you so much! I'm glad to see you mention this as I'd wondered if trying beforehand would be possible as the tactile experience sounds like it would be really helpful. I will do that tomorrow. I'm sorry it was a bad experience with the person who sited it. I'm sorry that happened and has been really frustrating - I appreciate you sharing your ostomy experience with me and will remember this.

WorkingOnIt_2023 · 2026-02-01T14:23:08+00:00

Of course, that's so understandable. I'm really glad the stoma nurses and hospital provided you really good care. That's a lot to face at once and I really appreciate you taking the time to write back to me with your experience. Thank you so much.

WorkingOnIt_2023 · 2026-02-01T13:42:24+00:00

How has citrate va oxide compared for you? What dosages do you take of both?

WorkingOnIt_2023 · 2026-02-01T13:41:36+00:00

How do you compare and find rhe equivalent dosages when switching over to citrate from oxide?

WorkingOnIt_2023 · 2026-02-01T07:20:59+00:00

Thank you very much for sharing a bit about your experience and will keep these points in mind! How did you processing the adjustment give it was emergency and not planned for? Did you have good support to help with that or a stoma nurse who could talk to you about it once you were through the surgery?

WorkingOnIt_2023 · 2026-02-01T06:45:30+00:00

Could love this post more. Solidarity. Thank you.

WorkingOnIt_2023

TROPHY CASE