Living Nightmare: Ulcerative Colitis....waiting for the light

I'm 30 years old and I was diagnosed with ulcerative colitis a little over a year ago and it's been a scary roller coaster ride since. My symptoms became noticeable when I was pregnant in 2011 and worsened after my son was born.

I'm truly thankful for the healing well forum because I've learned so much from all the posts. I've definitely been a sponge-trying to absorb enough information that I can. It's mind boggling how this disease effects so many people in so many different ways and that really sucks!!!!

Since being diagnosed, I really haven't gone into remission longer than a month. I went gluten free 6 months ago...I am borderline celiac. The gluten free didn't seem to help my gut much, but it did seem to help with other things ( tiredness, headaches). I've researched all the fad diets (paleo, restrictive starches, etc., etc.)

Enough rambling. Here is my diet now. Any suggestions on what I might need to do or is it inevitable that I must get on predinsone to get where I need to be.

I drink slippery elm on occasion because in one word: Gag!
I usually eat healthy, but I'm trying to cut out processed gluten free foods and sugars. I eat limited dairy (cheese and yogurt). I eat meat, eggs, poultry, fresh or foam veggies. I try to eat beans, but beans seem to tear me up! I recently started taking Theralac, but after 5 days, I had the worst flare up of this year. Odd...needless to say, no more Theralac. I take Vitamin D3 (1,000 iu- maybe I need to up that dose), I take Biotin, I take Flaxseed oil on occasion, and I just ordered Some WholeFood vitamins. I've cut out gluten, coffee, carbonated drinks, beer....pretty much everything I Love! Very disheartening to see it never ends and always takes more away from you.


Uceris seems to help, but its like putting a baindaid on it. After bing off Uceris, my otitis usually comes back with a vengence (blood, diarrhea, about 10 urgent, move out of my way poopies a day, and the lovely, excruciating abdominal pain.

I don't react well to Rowesa, Colozlal, or Asacol. I just started back on Uceris and hydrocortisone enemas. I see a new GI in 2 weeks.

So, after all this rambling (hoping I didn't lose my reader )

Am I doomed to try prednisone to truly go into remission. Plus, I know I need to try another probiotic too.

Any thoughts or encouraging words are appreciated! Taking one day at a time. Colitis is my forever shadow.




Ash
Looking for the light at the end of my colitis tunnel!

Predisone is not the end of the world. It is so stupid how everyone on this board is so opposed to it. It works and can get you into remission. Just have a plan to get off it eventually.

Also, Remicade is great. Got me healthy for 2 years so you can possibly try that. Lots of options. Worse case is you have the surgery which is also not the end of the world.

sa - you're are right - it is one day at a time - but you will see the light - hang in there

Sorry, "stupid" was the wrong choice of words. Its just that you use Pred is not an awful drug and I think a lot of people treat it like a boogy man. Used with another drug to keep you in remission is a great idea and should not be avoided

If I were you I would try an immunosuppressant (6mp, imuran, aza) if the 5ASA's (asacol, rowasa, etc) aren't enough for you. I'd much rather be on 6mp than pred forever -- much less dangerous.

The diet mods don't work for all people, so I wouldn't expect any magic there.

Since prednisone will not keep you in remission once it's stopped you do need some sort of maintenance therapy that works. Sometimes diet can be that therapy but often times you need the meds. It is very important that once you find this maintenace therapy that works you need to do it forever, no matter how long you have been in remission or how long you have felt good. If you are succesful at this for 30 years and then get cocky and quit because you have been in remission for thirty years it will come back and bite you in the butt and often future flares get harder and harder to treat, requiring higher doses of meds or worse and worse meds. The goal is to do whatever you have to do to never have another flare, ever.

SweetAsh said...
Does anyone know when these particular drugs are supposed to actually help and work? It just seemed ironic at the time when I stopped taking them, my symptoms subdued some....

Some individuals are more sensitive to mesalamine than others. You might want to give them a try while you are taking prednisone to give them time to work. They can take a couple of weeks to a month or more to notice an effect. It would be great if you could take both an oral form of mesalamine and an enema form since some pills have a harder time making it to the bottom of the colon and there is where a lot of the urgency, etc comes from.

There are a few other oral mesalamine products that you could ask your doctor about as well to see if they make a difference. If not, then 6-MP or Imuran might be your next best shot as taking a maintenance med.

When you first get UC, things are crazy. Eventually, you'll be managing this correctly and find what works. Diet restrictions or changes help you while you are flaring, to make you digestion during a flare easier, but in my opinion, they don't eliminate flares, they are not preventative.

I've tried every diet change and supplement in the book. Nothing works like good old maintenance meds. But I've stayed with many diet changes because of other benefits.

Green smoothies, liquifying fruits and vegetables, has been great for my digestion, for example. I've been gluten free, thinking that's anti-inflammatory but it seemed to help all inflammation except my colon.

The trouble with prednisone in my opinion is that it makes me feel very nervous and it's hard to think clearly or sleep.
That being said, it can save you're ass in a bad flare like I am having right now. It's a strange and unsettling experience being on pred for me and it's very weird knowing that you can't get off this drug easily and you cannot stay on it!
Pred is a drug from probably the 1920's, you mean to tell me with all the research going on they haven't come up with a suitable, less harsh substitute??

gotta agree with NCOT. prednisone is a pointless drug to take. gave me a TON of problems and took nothing away. If there had been a give and take, then okay, but it was ALL give.

iPoop said...
Lol pred is the boogeyman here I swear. Pred has a purpose, as BeatUC said, and it pulled me out of a terrible flare as well. I also was able to regain all of the weight I lost during my flare thanks in-part to pred turning up my appetite. Gotta learn to stop worrying and just love the pred here people, can I get a some cheers here for pred: Bricka bracka, firecracker, sis boom bah! pred, pred, rah rah rah!!

What I think of this post is actually moddable.

Yeah, Pred pulled me out of a severe, life-threatening flare-up and enabled me to regain weight too. You really wanna know the end of this story?

I had a colectomy in Feb this year and am stuck with a permanent stoma (not a j-pouch candidate).

iPoop said...
Lol pred is the boogeyman here I swear. Pred has a purpose, as BeatUC said, and it pulled me out of a terrible flare as well. I also was able to regain all of the weight I lost during my flare thanks in-part to pred turning up my appetite. Gotta learn to stop worrying and just love the pred here people, can I get a some cheers here for pred: Bricka bracka, firecracker, sis boom bah! pred, pred, rah rah rah!!

Yeah, OK, post this again when you're off the pred completely (assuming your signature is up to date).

I'm 26 and I have bone loss in my ****ing spine. Pred's "purpose" for me was to control my symptoms enough for me to hang on to a worthless colon in a living hell while trying every drug under the sun, then end up needing a three stage j-pouch process with two MAJOR surgeries (instead of one) because of being on pred for too long.

I'm not even particularly bitter about any of this, but the "boogeyman" attitude is warranted and your post is ridiculous.