Took a turn for the worse, any tips?

heres what ive been doing this month:
No gluten (gluten intolerant)
No lactose or dairy (1st thing to go!) except for plain greek yogurt or plain kefir
No red meat (i normally dont eat much red meat anyway)
Very restricted sugar-only some honey in yogurt
Very little, if any, processed foods.

I eat mainly yogurt, bananas, chicken, avocado, cooked carrots, some rice the past few days.

I take vitamin shoppe probiotics and b1 (thiamin). I took turmeric for a while, discontinued, then started it again today. I also take an intesanew glucosamine supplement that i did not take today because of the burning feeling-ive been scared to eat/drink anything today. Only had some chicken broth.

It's great that you've been able to manage so well with dietary and lifestyle changes. When you were diagnosed, what did they say about the condition of things? Was it mild and limited to a small area? It sounds like you would probably benefit from taking daily medication but I understand not wanting to do so. I hate taking medication but I know without it, things were go haywire. If you're up every night going to the bathroom multiple times, it sounds like things are pretty active. I think you should go to the doctor and see about getting a scope to see what's going on and take it from there. Maybe enemas would help more than suppositories, that would be a pretty simple change that could go a long way. Otherwise, you could try something oral but then you should really stay on it. If you can tolerate oral Asacol, it's not a bad idea, they say taking it can help prevent colon cancer in people with UC. I have that crazy up and down you describe though, I was doing great a few days ago, then yesterday wasn't so good, now today I am good again. I never know what to expect. I also don't know whether it's worth going on additional medication to treat something when it's only bad some days... Very unpredictable.

Thank you for your reply notsosicklygirl! They said mild-moderate proctitis (or proctosidgmoidosis, cant remember off the top of my head).
I am so reluctant to take oral meds because of my experiences with prednisone and asacol (which put me in the hospital). And yes i feel the same way you do! I dont know if it is worth it to go on more when it is up and down. I will look into enemas-they have really scared me but i know many uc'ers use them.

Hi Gary- the prednisone affected me very severely mentally (and physically, but the mental was more harmful). The next doctor I went to said I never should have been on that high a dose for that amount of time. So if I had to, I would take it again but only for a week at most.
The asacol turned a mild contained flare into a severe pancolitis overnight. I was violently ill and had to be admitted to the ER. I had never been that sick in my life before.

What dosage of pred were you on? Taking pred for one week would be pointless. Even though you can be intolerant to mesalmines and have worse UC symptoms due to it, it is extremely unlikely that even if you had a bad reaction to it that it turned a mild contained flare into a severe pancolitis overnight. More than likely you had pancolitis before the Asacol, had a reaction to the Asacol, and being in the hospital due to that is when they discovered your UC had progressed to pancolitis.

In my opinion you are in a twilight zone kind of area where you are afraid or prejudiced against medical options but don't realize that some of the non-medical options you are doing are actually hurting you instead of helping you. I'm not saying this because I am for medical options and against non-medical options. I do a combination of both. I just think you are kind of a lost soul right now. The mesalamines such as Asacol are one of the safest treatments available with the least side effects but some can't tolerate them. Most of the other drugs, even though they can work, offer more side effects. Some can get better from non-medical options but I think your biggest mistake is in just assuming that by adopting a healthy lifestyle will make you better but the truth may be that some of those things could actually be making you worse. For example, yogurts could be making you worse, most UC'rs can't tolerate carrots, and I am histamine intolerant (some UC'rs are) so eating avocados and bananas would make me worse. Rice is also a very big word. It can mean just about anything. Some rices and some ways of preparing it could be hurting you instead of helping you.

Again, my biggest advice to you is to have a more open mind about medical options (but educate yourself about them instead of just following doctor's orders), don't just assume that because you think a non-medical option is helping you that it is because it might actually be making you worse, and since the Salofalk helped you before it should be at the heart of your treatment plan and should probably never be stopped completely - ever - for the rest of your life.

Also, many UC cases are linked to stress so the more you can control life's stresses the easier you will be able to control your UC. Many have found that certain antidepressants or anxiety meds help.

I can understand your situation at 20 years old. This started for me when I was 15, now I'm 31. Also in NYC, so I know how dangerous the city can be with breaking a good stride in taking care of yourself.

When I was younger I was scared of every medication, but as I got older I realized this was something I had to accept and the medication would make me better. Take some prednsione and remicade, it will help get your life back.

Also, I used to read a ton of horror stories about every drug on the internet before I started taking them, but that is a small fraction of the people out there, thousands of people take these medications for other symptoms and don't have issues.

A diagnosis of UC means that you can have a flare-up at any time. That's why most of us take some kind of maintenance medication to keep the colon under control. We also try to eliminate known food irritants while supplementing essential nutrients like calcium, vitamin D, iron, etc., if/when necessary. It sounds like you've been medically on your own for a good while, after DX outside the U.S. (Salofalk Rx)-- is that true? Do you have health insurance in NYC? If so, find out if you can use it to consult IBD-specialist gastroenterologists at Mt. Sinai Medical Center or Roberts IBD Center/Weill-Cornell. These doctors would surely take into consideration any allergies or adverse drug reactions you've had in the past! If your inflammation is still limited to proctosigmoiditis, you may be able to treat it successfully with Rx retention enemas and then "maintain" by using them less frequently. However, you really need a knowledgeable doctor to assess your condition and help you learn better how to manage it. I understand your anxiety at missing class/work; I went thru that myself until the right doctor helped me to get my turbulent colon back in reasonable order. (Better not to experiment with OTC med.) Best wishes & let us know what you decide to do. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)