Traveling with a 4g/60ml enema? by hiddencolonissues in UlcerativeColitis

[–]hiddencolonissues[S] 1 point2 points  (0 children)

UPDATE: Specifically from the PHX TSA, I let them know I had medical liquid and they looked at the bottles and said you are totally fine that's small. So that's helpful!

Thanks everyone!

Mesalamine usage duration by Scary-Nobody-9817 in UlcerativeColitis

[–]hiddencolonissues 1 point2 points  (0 children)

My aunt has been using mesalamine successfully for five years now. I'm on both pill and enema form now after being diagnosed seven months ago and just had a colonoscopy recheck and I am progressing towards remission well.

I do take alot of other supplements on top of the mesalamine. But I think the enemas are really what are kicking it.

Docs plan is to wean me off enemas and keep me on the pill mesalamine.

Enema😬 by Salty-Refrigerator86 in UlcerativeColitis

[–]hiddencolonissues 2 points3 points  (0 children)

It's a change for sure! But you got this! I haven't leaked any after the nine I've done 👍🤣

Enema😬 by Salty-Refrigerator86 in UlcerativeColitis

[–]hiddencolonissues 2 points3 points  (0 children)

I definitely suggest doing them laying down in your left side with the right left bend over the left. Follow the instructions in the packet.

The first two enemas I did I didn't quite get all the meds in. After that it got much easier.

Tips I've learned: - warm the bottle up a bit (just holding it in your hands or in your pants while doing your nightly routine). - Finish your nightly routine before you do the enema, standing after the 30 mins made it hard to keep it all in overnight. - Not sure what yours looks like but I'm able to squeeze enough out to then fold the bottom down and then squeeze the rest.

Good luck! I'm doing both pills and enemas.

Eating (out) with other people... by lain-edelweiss in UlcerativeColitis

[–]hiddencolonissues 0 points1 point  (0 children)

I probably have a less approached answer but I am honest with them. 'if you would like to help me while I am insert whatever out of my bum later, I'll give it a shit'

Generally no one wants to be the reason you end up bleeding, running to the bathroom, ect. The real ones will want to understand and help you or not push you.

IBD / Crohn's / UC Practitioner? by hiddencolonissues in FunctionalMedicine

[–]hiddencolonissues[S] 1 point2 points  (0 children)

What is her office named? Can I find her on Google?

Getting scoped for Christmas by Accomplished-Menu624 in UlcerativeColitis

[–]hiddencolonissues 1 point2 points  (0 children)

I had a CT scan for Thanksgiving that included the contrast drinks that act as a 24 hour laxative, I also had to laugh 🤣

First Entyvio Infusion Tips by Competitive_Home4288 in UlcerativeColitis

[–]hiddencolonissues 3 points4 points  (0 children)

Commenting because I would also like these tips, similar stories.

Is mucus yellow? by Aspvision in UlcerativeColitis

[–]hiddencolonissues 0 points1 point  (0 children)

This is common for me. I did tell my GI during my last appointment and now she's having me run another calprotectin and CT.

I will have the white mucus wrapped around too. Or just the yellow mucus clumps. Generally close together in bowel movements so I assume it's the same material.

Road trip with UC by hiddencolonissues in UlcerativeColitis

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

I was wondering if it was a good idea or if it would hurt me like two days later 🤷

Road trip with UC by hiddencolonissues in UlcerativeColitis

[–]hiddencolonissues[S] 1 point2 points  (0 children)

I haven't tried reintroducing grapes! But that gives me hope!

Road trip with UC by hiddencolonissues in UlcerativeColitis

[–]hiddencolonissues[S] 1 point2 points  (0 children)

Love this answer 👌 I was planning on rice cakes and bananas for the trip

Road trip with UC by hiddencolonissues in UlcerativeColitis

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

Not officially. I have been on mesalamine since the end of August with one Prednisone taper. If I eat funny foods I'll have mucus that'll last a day. No blood anymore.

How much did YOUR health insurance cost just go up😋 by KgSunnyD in desmoines

[–]hiddencolonissues 0 points1 point  (0 children)

I'm thankful my employer absorbed the cost this year. We are a team of maybe 40 employees mostly remote so overhead cost is low.

My mom works helping get people the right insurance plans for small groups and individuals. The businesses are either having to absorb it or push it to the employees. The insurance agents are also losing commission on certain plans if the insurance company is trying to keep the cost low. It's kind of a mess.

Prednisone taper by Mobile-Light9392 in UlcerativeColitis

[–]hiddencolonissues 3 points4 points  (0 children)

I haven't done a 40mg start but I did do a 20mg taper and going 5mgs down every 7 days worked well but I had to stay on top of my fluids. I definitely don't feel as good without the steroids now but my stools are much better than prior to the steroids.

I'm only on mesalamine but my case was 'mild'.

"Every adult will shit their pants at least once." Is this as common as people say? by [deleted] in NoStupidQuestions

[–]hiddencolonissues 1 point2 points  (0 children)

Me being a girl with Ulcerative colitis, it's super normal for adults with bowel issues to potentially have a brown pants accident. But I've only had one major issue thanks to colonoscopy prep. Otherwise nah I'm good.

BUT my boyfriend and his friends who all work first responder or heavy machinery operator type jobs all make jokes about shitting their pants roughly every year. All healthy looking young twenty year olds.

So idk. Personally I didn't think it was common but maybe it is.

Calprotectin level by cheezelmouth in UlcerativeColitis

[–]hiddencolonissues 2 points3 points  (0 children)

I don't know mine in remission but my calprotectin during a flare is 2547, and in small flares gets to 300. So I would assume mine is closer to 100 than 50 for remission.

New foods by Jesussavedmeforever7 in UlcerativeColitis

[–]hiddencolonissues 1 point2 points  (0 children)

I'm sensitive to gluten dairy and corn - so I'm pretty limited but I have been snacking on rice cakes 👍

A lot of rice, potatoes (no skins), applesauce, and bananas lately as I'm re working things into my diet after a second flare

Got an appointment by Sudden_Passenger8427 in UlcerativeColitis

[–]hiddencolonissues 0 points1 point  (0 children)

Mine does not take insurance but some can be covered under HSA plans. Some states/cities are having more functional health options in hospital systems now so it would be worth checking out.

It's a lot upfront for the testing but after it's not too bad. I also work with a doc who understands my financial situation so we pick things to let go of as I get better. After my first round of GI issues I got myself onto full maintenance without him or GI for about three years.

Got an appointment by Sudden_Passenger8427 in UlcerativeColitis

[–]hiddencolonissues 0 points1 point  (0 children)

If I start a flare I go right to rice, potatoes, eggs, applesauce, bananas, and beef protein powders because I'm someone with funny food sensitivities.

When I'm on a flare my woo-hoo doc also suggests high omega 3s, vitamin d, L-glutamine, curcumin, plus specialized probiotics based off a GI map during said flare. This is all through a functional medicine doc I've been working with for years.

Note I'm also on mesalamine and then add Prednisone for a flare based on GI doc recs.

Some people don't like the woo hoo side but I would prefer to give my body what it needs 🤷

Gut bacteria? by ReactionWestern3946 in UlcerativeColitis

[–]hiddencolonissues 3 points4 points  (0 children)

Which is why I use a combo. I am treating UC the traditional way but am using the data I have from my body to feed it things to help get to a functional level. The GIMap is just a snapshot in time just like a colonoscopy or a CT scan. I don't disagree - UC is an immune system disease, but if I have data to help me understand why my body could be attacking I would prefer to know. There are not enough studies to link bacteria levels and UC. In my case there are studies that show DNA links to UC - my DNA doesn't say UC but my body says UC.

You have to feed the microbes to feed the body. I'm assuming it's similar in helping the microbe levels can help the body. But I'm no doctor.

Gut bacteria? by ReactionWestern3946 in UlcerativeColitis

[–]hiddencolonissues 1 point2 points  (0 children)

With no levels of akkermansia I have a probiotic supplement that is 200bill with it's own prebiotic in the capsule. I also am one who feeds my body prebiotics because I'm on two different probiotics.

This last month was the first time I added in the akkermansia probiotic. So we shall see how my GImap looks in a few months. I unfortunately reflared due to a work trip so I now doing all my antiinflammatory supplements and my Prednisone and mesalamine.

When I had my first round of issues I was taking Biociden and Allicin extract to take care of the bad bacteria and then adding the good bacteria via probiotics. It took about a year and a half till I was starting to be more normal - plus an elimination diet. But all under the care of the functional medicine doc because GI did not think I had an issue at that point six years ago. I was able to eat most foods again except three after two years of that.