How do you know what you can and can't have?

Reading all these threads; I notice something very different between myself and everyone else...

Everyone seems to know what works for them and what doesn't. Food, meds, probiotics...how are you all so in tune with your bodies? I'm 31 years old, I would think by now if I had definite triggers I would know them...
I have no idea what caused my initial blood to start. Since it's gotten worse, I don't know if it's meds aggravating it, outside factors, etc. I just know I'm worse. I have never noticed a single food group making me feel better or worse. Even when I was paleo I didn't notice much difference, I just liked eating healthier. I can't definitively say that mesamsaline made me worse, or if it's the prednisone. I know yesterday was my first day in two weeks without antibiotics and today I'm feeling better...but it's also the day after my period has ended.

So....my advice I seek is how can I make myself get better, know what MAKES me better when I'm not keen enough with my body to tell the difference?

This is also my first flare, been progressively worse since dx in March 2015. Also for some reason my signature won't update in my posts eventhough I've gone in and changed it multiple times....

How do you know what you can and can't have? The answer is trial-and-error. You've only been at this since March 2015, many of us have had uc for years, a decade and have tried many, many things. Try one treatment, wait for a response and then keep it if you improve, otherwise discontinue and try something else. There are so many treatments it is easy to get lost in the forest.

A food diary is a good place to start. Diet modifications and supplements don't help everyone (myself included), some swear by it. Try it and see.

Some of us know right away. Some of us have investigated things for months or even years to find out, and some of us never know. The best advice I can give you is don't assume anything, such as don't assume healthier foods are better for your UC than a burger and fries. Don't assume because something is anti-inflammatory that it will be good for your UC, etc.

It took me a couple of years to figure my case out, and a lot of that was with brain frying research. In my case I was kind of lucky because I discovered that several different things, all seemingly unrelated, made me much worse after ingesting. They were orange juice, most fruits, pizza, anything with cheddar cheese (other cheeses didn't bother me at all), and the probiotic Florastor. After a lot of extremely brain frying, headachey research, I discovered there was only one thing common to all - histamine. Many UC'rs are low on the digestive enzyme DAO, which helps metabolize dietary histamines. So, now I either eat a low histamine diet or take DAO to counteract the ingested histamine and I have been doing much better.

Another thing I did was to get my stool sample analyzed by American Gut. Ubiome also does this. Doctors don't do this. This gave me a further clue as to what was wrong with me and led to more brain frying, headachey research. I discovered that my system was overloaded with Firmicutes and had close to zero Bacteriodetes and through my research I discovered Grape seed extract, which supposedly normalizes those ratios out.

I truly believe that most people who want to get better have to doctor themselves because the doctors don't do any doctoring to find the solutions. All they do is prescribe bandaids. If one bandaid doesn't work then they prescribe another bandaid. I'm not against meds, in fact I take some, but doctors just don't put any time in to try figuring out the root cause or a solution to the root cause because their books tell them there is no known cause and no known cure, so they don't even try investigating.

Everyone is different so what works in one often doesn't work in another so I am going to throw some things out there which might or might not be of benefit to you:

1. Have you tried VSL#3? Florastor has made some of us worse, including me.

2. Why were you taking antibiotics? Did you have C-Diff? Antibiotics make most of us (not all of us) worse but if you do have C-Diff they are mandatory. C-Diff is notoriously hard to get rid of so if you did have it don't assume it is gone. It's almost impossible to work on getting your UC better before completely getting rid of the C-Diff first. Antibiotics have also been highly suspected of causing UC in the first place. I'm pretty sure they caused my UC. Doctors really shouldn't ever put anyone (especially UC'rs) on antibiotics unless they have a known bacteria that will respond to a particular antibiotic.

3. Oral and rectal mesalamines are usually very safe and effective but some people can be intolerant to them and it makes them worse. Have you never taken any oral mesalamines? If not you should, unless you are intolerant to mesalamine.

Thank you, especially Gary for the great explanation. To answer a few of your questions:
1. I have not tried VSL#3. I have only heard about it via this forum. I am currently on florastor, which I was put on by the doctor a week after starting the antibiotics (so I've been on it about a week). I have yet to know if it's helped, the only thing I had noticed about it is that the first few days on the antibiotics my diarrhea had NO smell. Day after florastor I STANK! Now that I'm back off the biotics, odor is more normal. Yesterday I added Garden of Life Colon Care.

2. I still have no idea why she put me on antibiotics, she added them without seeing me and after I went to the ER. I was unable to provide a stool sample at the ER and sent home. I was first given a week course. At a follow up she told me to continue for another week. It was midweek of the second week that I finally asked for a C. diff test (since the odor was so bad I was nervous), it came back negative.

3. I don't believe I have been given any oral mesamsaline. I've pretty much been on prednisone and Canasa suppositories since this started. I did a short dose of uceris which didn't help. And a week ago was put on rowasa enemas. The pred is the only oral med for treating this I'm on (I'm taking stuff for nausea and spasms).

4. Another thing to note, and I'm about to call them and inquire as to why...is that the office called me yesterday to tell me they want to schedule me for remicade. I think that seems a little drastic, would you all know of a reason as to why she would jump to that?

You really need to post a new thread on this to get better results.

It's easy to get false negatives for C-Diff, especially when they tested for it after you had already started the antibiotics. I suspect your doctor was afraid you caught C-Diff from the hospital and put you on these paricular antibiotics as a precautionary measure. Smart decision if you do have C-Diff. Probably a bad decision if you don't. You dtill gould have C-Diff, even though your test was negative.

Keep a diary of your intake and your symptoms. (I put mine in an Excel spreadsheet.) If you notice that you have increased number of stools or increased blood or pain, every time after you eat, say, tacos, you can assume something in the tacos is bothering you. It will take time to narrow this down, because this is a fickle disease and you can't draw any conclusions from one time. Things can get better or worse for no apparent reason, even when you know your patterns well. That's just the nature of UC.
For me, I know that diet has no effect on my UC. Highly spiced foods may cause me to have burning stools, but not more. Expensive probiotics didn't help me a bit, so now I take Align. It is available everywhere and inexpensive, but every time I stop taking it I know it's still helping me. I am intolerant to mesalamine, but balsalazide does relieve my symptoms a bit. Even with steroids I was never able to reach remission until I went on Remicade. Everyone is different, the only way to learn what works for you is through trial and error.

Hi there,

I have to agree with ipoop that it is trial and error!
However UC being the confusing disease that it is sometimes plays tricks with you.
What I mean is that something that I know I should avoid I sometimes eat just for the hell of it,
and nothing occurs!
So how confusing is this!
I suppose it depends on how your immune system is functioning on the day that you eat a certain
food.

Living in provincial China the health service is very poor and the local hospitals can only really provide
mesalazine or prednisolone.
The mesalazine never works with me and the pred. I will only take if things get real bad as it has so many
nasty side affects.
Therefore in the main I only use Chinese medicine(TCM) and diet to control my illness.

Something I always avoid is sugar in its many forms and prefer to use fruit to add sweetness wherever
possible.
No spice, or very rich food, and I keep my animal fat consumption as low as possible.

This said I still have problems with occasional mucus and small shows of blood, but nothing much.

One other theory I have is about Vit.C in the form of high dose supplements.

Usually you will read on the container, 'Boosts Yor Immune Sytem' or something similar!

Well my theory is that you need to be careful taking too much Vit. C as boosting a damaged
immune system is (in my opinion) not a good idea.
You are simply supercharging something that is damaging your body.

Think about it!


Regards

Another thing I would like to add, which I think someone else kind of touched on, is that there are many variables involved, including a possible cumulative effect. There have been a few times when I ate something which gave me an almost immediate reaction but then the very next day I would purposely eat the exact same thing and was surprised to find out that I had a better day than normal. Very confusing. Also, this disease is like a snowball rolling down hill because when your colon is damaged there can be many things which bother you but when treatments begin healing your colon you can often eat some things you couldn't eat before. I think there are many who eliminate foods due to one bad reaction or continue eliminating foods that might not bother them anymore because their colon's have healed. It's easy to get caught up in the mentality that a certain food is a trigger food when it might not technically be a trigger food at all - just a food that bothers you when your colon is not healed.

Hi,

Isn't that always the way!
When a doctor wants a sample you are all dried up, not a drop is available!
Flyingjen sorry to read about the 10-15X trips to the bathroom!
Thank God I nly need to go 3-4X and usually it only contains a little mucus
and a tiny drop of blood here and there.
Could you tell me exactly what ' garden of life colon health probiotic ' is?
Can it be purchased without seeing a doctor?

If it can I may try to buy some on-line and give it a try!

Regards