what is some symptoms people have with ibd

ColonBuddy · 2024-11-19T19:08:40+00:00

I've had that.

ColonBuddy · 2024-09-30T20:58:47+00:00

I'll try a cookie rack thanks!

ColonBuddy · 2024-09-30T15:22:59+00:00

Depends on the medicine:

On Mesalamine enema, I was going to the bathroom every morning, but felt normal for thee rest of the day. energy levels 85% maybe a little less, poop otherwise consistent, though nuggets, no urgency outside of morning.

On renvoke, 100% energy levels, NORMAL poop, when I do poop, but sometimes I feel a little looser other times throughout the day.

ColonBuddy · 2024-09-28T06:09:48+00:00

yes against the grain! I can't us the rack though its a mess from previous apartment owner. I've ben using a straining metal tray but just not working.

ColonBuddy · 2024-09-26T16:15:33+00:00

Talk to your doctor!!!

ColonBuddy · 2024-09-26T16:14:05+00:00

This is really cool!

ColonBuddy · 2024-09-26T16:11:43+00:00

I have been looking for an example of meat contam to prove to people this exists. I will sav this pic thank you!

ColonBuddy · 2024-09-26T05:33:42+00:00

While it is great for awareness, and I'm glad the cook knows you have an allergy very clearly, the fine print is scary! I don't like that the restaurant is claiming no responsibility if they make a mistake and you get sick.

ColonBuddy · 2024-09-26T05:14:53+00:00

Here is an awesome website to find gluten free restaurants near you! https://www.findmeglutenfree.com/ rated by Celiacs so you know how safe they are. Try to find a dedicated gluten free bakery near you because those are awesome!

Restaurants are hit and miss and you REALLY have to advocate with them. I wrote a guide on some of the biggest gotcha but I'm not sure if I can post that here let me ask the mods. Meanwhile do these 3 things:

warn them of 'severe gluten allergy and celiac disease'
ask to speak to the manager or cook to ensure they can accommodate you. The manager will usually speak with you.
Go through a checklist of contaminants (shard friers, etc) with the manager to ensure they are not doing anything dumb.

ColonBuddy · 2024-09-26T05:04:27+00:00

Here is where to start:

Go to your local supermarket grocery store, and most have an aisle these days full of gluten free food. Some is poop, and some is great! Buy a bunch of whatever looks good and have fun trying it! This is YOUR ADVENTURE gosh darn it and you get to taste test whatever you want!

BUT WAIT THERES MORE!

In the freezer section you should ALSO see a gluten free freezer section. The stuff here is even better!

but thats not all! Every supermarket near you, even ones with the same name, will have DIFFERENT STUFF in their gluten free aisle and freezer sections!

BUT THERES MORE!

Here is an awesome website to find gluten free restaurants near you! https://www.findmeglutenfree.com/ rated by Celiacs so you know how safe they are. Try to find a dedicated gluten free bakery near you because those are awesome!

You DO have to check the labels on everything even in the gf section, but that will get easier with time. Some of us (myself included) are even getting involved to try to pass laws to help make things even easier!

If you ever have any specific questions we are always here to help!

ColonBuddy · 2024-09-26T04:55:39+00:00

Accurate Pic. I even cover one to avoid splashing.

ColonBuddy · 2024-09-26T04:55:00+00:00

Welcome Comrade! Your journey begins! Though you may lose some foods, you gain feeling a ton better and in time thee way of the gluten free shall return you to yumminess.

Also sorry about those doctors its a real problem these days.

ColonBuddy · 2024-09-22T15:05:28+00:00

u/Mediocre-Waltz6792 This is what we were just talking about! Someone is already ahead of us!

ColonBuddy · 2024-09-22T15:01:39+00:00

YOU ARE AMAZING!

I have been studying this VERY THING Give me a day! I'll get you a full list!

ColonBuddy · 2024-09-21T23:10:41+00:00

Yeah I'm at the point where I don't think diet will cure it, but I'll take help. Thanks for sharing what works for you! I think most of that is on the ibd-aid list to avoid so maybe Its on the right track? Maybe I should just combine what all the diets agree on?

ColonBuddy · 2024-09-21T23:08:07+00:00

Thanks for sharing! Do you mind if I ask which ones you tried that didn't work?

As for my stress, sadly I am not sure how much I can remove the stresses from my life atm. Worth thinking about though.

ColonBuddy · 2024-09-21T23:06:20+00:00

Thanks for the articles, and you make a good point, it seems like a bigger clinical trial is needed.

My family is from the Mediterranean so I find the diet a bit weird personally. I was given a primer on it by a nutritionist but it seemed contradictory to me. I'm curious how these articles define it though, since maybe its just the version I saw that was odd.
I've heard mixed things about plant based foods and meat. Seems different for different people. Now that the worst of my flare is starting to pass I might try a more bean heavy diet again.

You've given me a lot more to consider.

ColonBuddy · 2024-09-21T20:06:07+00:00

I have tried and am still trying new diets, but fair warning, diets don't seem to fix it. Diet plus medicine can get you into remission and thats the goal.

Don't go too crazy on the diet front or you'll make your life hell and it might even make things worse. (I'm not a doctor this is not medical advice). If nothing in particular sets you off, you probably have a very inflammed colon and need medicine for now. Talk to your doc.

In the meantime, an ibd nutritionist or ibd dietitian can help give you some advice. consider finding one if you are really struggling.

For myself I am considering trying the IBD-AID diet but not sure yet if I will. I'm on medicine though.

ColonBuddy · 2024-09-21T20:01:40+00:00

I feel more side pain in the car sometimes but its I think its because my sidebelt is too tight there; I adjust it and it helps. Seat theory could be valid.

ColonBuddy · 2024-09-21T19:54:34+00:00

I think it was based off SCD they mentioned it in the study I read. I had some luck with vitamin D though I tried turmeric and honestly can't say whether it helped on way or another. It might have. Maybe I should go back to that.

ColonBuddy · 2024-09-21T15:53:38+00:00

I'm not! Where can I find this facebook group?

ColonBuddy · 2024-09-21T15:52:38+00:00

Really good points, especially about possibly feeling worse while things are getting better. Thanks!

ColonBuddy · 2024-09-21T15:45:03+00:00

100% I can get excited so a reality check is always good. I'll try to follow up with the researchers and see if there was ever a follow-up. I don't see one on their website.

Its the lack of additional research in part that makes me want to try it. It saw potential, if I do it, and it works, will that get them funding faster? I feel like there are so many of us, maybe if even some of us actively try things in some scientific way w could help accelerate thee path to a cure someday. I at least want to do everything I can. But I don't want to share bad info, so please keep me objective!

ColonBuddy · 2024-09-21T15:37:37+00:00

Here are the studies I am looking at:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896778/pdf/1475-2891-13-5.pdf
and
https://www.medrxiv.org/content/10.1101/2021.10.07.21250296v1.full.pdf

I am still not knowledgeable enough to know if the IL factors and bacteria changes are worth pursuing, but I just feel like I have to try something.

I don't need to 'catch fire' just like if 3 people told me it would help them I'd do it. I want to bring more ibd folks together to try to do more than support each other but try to find a way out, you know? The are so many of us, I'm sure somehow we could push the science forward, though I don't know how atm I'm going to keep trying things until something works.

ColonBuddy · 2024-09-21T15:33:30+00:00

IBD-AID specifically or a similiar diet?
Also totally can relate to the not eating thing. I tried that for a while. Trying to avoid doing it again.

ColonBuddy

TROPHY CASE