I wish they'd focus more on the changes of the colon through diet and nutrition and on an individual basis since not diet is a "one size fits all". My problem is I love food and have such an...
I think its bogus too. I'm tired of treating the symptoms tho because they seem to be moving targets....I want to treat the root cause, but wouldn't we all. I know most on here are not in agreement...
I'm wondering if you have developed joint pain/inflammation due to your UC. Could the simponi have masked your joint pain all this time? I notice it is used to treat RA? Just a thought....
I'm sorry you are going through this. I had similar joint pain but mine was caused from the Biologic Remicade. Took about a month after going off it for my body to go back to normal, but that first...
So another dumb question....and you'd think having lived with UC for 17 years, I'd be an expert. LOL. Every time I've ever had a colonoscopy, it has always shown mild activity even without symptoms,...
LOL, I know. So, if all my inflammatory markers are showing normal, had I not had that colonscopy that showed mild inflammation, I would consider myself in remission right now. How 'bout them...
Old Hat, that's the funny thing. They didn't put me on Imuran until October. Up until that point, I was taking Asacol, and they put me on Prednisone during that hospital at the same time they started...
Old hat, thank you! This is the UofM clinic. When admitted to the hospital, they moved me to the GI Wing so I could be treated by their GI clinic. The people treating me now are the same people who...
Thanks, John. So if it's mild right now, I'm hoping lialda, rowasa and imuran will knock out this what's left of this flare. Still have 4 weeks left on prednisone. Fingers crossed. I've come a long...
I'm starting it again tonight - I have a box from last year and with refills. I just wish I could get the name brand and not the generic. UGH!!! I'm also calling in for a 3rd opinion. My original GI...
I was hoping the resultswere posted to my portal so I could post them here, but nothing yet. I will reach out to them on Monday and ask for a copy of the report. The visual during colonoscopy for the...
Is any of it reversible after stopping prednisone? For instance, Remicade caused me to have Drug Induced Lupus, but once I stopped taking it, the Lupus went away and I'm back to normal - well, as...
and I asked if the biopsy came back for the polyp. He said yes, colitis polyp. What the hell is a colitis polyp?...
Colonscopy on Tuesday showed mild active colitis in rectum and sigmoid. Removed polyp, sent out for labs. Everywhere else was clear according to the report they sent home with me after the scope....
Thanks Notsosickly. I am holding my ground and really focusing on a more natural approach in combination with drugs with the least amount of side effects. I'm finally back to weaning off prednisone....
I had to have one because my doctor is pushing me to go on entyvio even tho my FCP and CRP numbers are back to normal and I'm not having any symptoms. I am refusing the entyvio and told him that if...
Jim, you hit the nail on the head. What works for one may not work for another, which is why I always say to never discount anything, take the negatives with a grain of salt, and to try everything...
Thank you for the replies and support. I agree he probably sees flare ups more often than not after weaning off prednisone. I'm hoping for the best. I've usually always had no issues coming off...
I did the raw food diet for almost 2 years. Very hard to sustain but i was able to go off all meds 60 days in and remained symptom free until I slowly started going back to the standard American...
What does remission mean to you? If you have ZERO symptoms but your colonoscopy shows mild active colitis, Would you consider this remission? If I didn't have a colonoscopy showing this, I would have...
32 oz Smoothie every morning - rarely will I deviate. All fruits below or a variation of some. Spinach in every smoothie. Pineapple Mango Bananas Strawberries Blueberries Peaches Lots of spinach...
I'm a huge believer diet plays a significant role in this disease. Unfortunately, my GI doctors do not. Eat what you want they tell me and if it causes me problems to stop eating it. UGH!! They are...
Good question! At the time of diagnosis, I had been taking a lot of antibiotics for recurring UTI's during the previous 6 months and I was on a low protein high carb (high gluten) diet for nearly a...
As you may remember, my FCP number was 75 in October (was coming off prednisone but was on Imuran and Remicade) and 775 in December while I was taking Imuran and Remicade and 690 in February just...
Thanks!! Yep, taking 2 pills a day currently and getting ready to bump that up to 3 a day. And I'm eating a bowl a day of my homemade sauerkraut...lots of natural occurring pro and prebiotics....
I haven't done too much research on surgery. Are there different types of surgery? Does surgery always mean having to wear a bag outside the body? I'm very curious. Thanks!...
UGH! I just started macrobid for a UTI. This is all I need right now. Please keep your fingers crossed that I do not get C-diff or it causes a flare. I just can't deal with one or the other right...
Welcome! I come and go from these boards ... come when flaring, gone during remission. Have had a nice run of remission, but it came to an end. Dealing with it now, think I'm back in remission but...
LOL :turn:...
Thanks, Ipoop! I can't even get Rowasa anymore. They only have generic at all the pharmacies I check, even Cigna Home Delivery can't get it. UGH!!...
I get that and wonder the same. In fact that happened last night. No blood withbthe BM in the morning or for weeks and then all of a sudden when I went last night, no visible blood on the poop, but...
I have an allergy to sulfa, I bet that's why the enemas aren't working for me anymore. Here I thought it was the generic brand that I was getting. Rowasa does come in a sulfa free formula - at least...
Hey curious! I can't find rowasa anymore. It was the only thing that worked. I can get generic, but it doesn't work for me like the real stuff did. I will ask my doc about going back on oral...
Thanks, guys. Makes me feel better. At least I can go there during my next appt with examples of others and ask for a scope before making a huge decision....
1. 1-2 BMs a day, formed. No blood or mucus 2. He's calling me back in a week after my results come in for the calprotectin. If it's still high, I have to have a plan to suggest other than I won't...
bull101 - I know....part of me is being the good catholic italian girl and obeying doctors orders to avoid the guilt he's gonna lay on me when he finds out I'm weening myself. LOL....
cupoftea: he's afraid if I want too much longer and the inflammation gets worse, the meds won't work by time they kick in and I will flare up and won't be able to get it under control and I'll lose...
and wow! 2000 FC result? My doctor is telling me anything over 800 and the Entyvio won't work. [mad face] Glad to see yours went down to 600....
Thanks! No diahrhea or urgency. I'm only going 1 time a day....sometimes two and they are soft but formed. I agree about the prednisone. I love doctors, but geeze! I told them there is no way to know...
Okay, so my highest is at 775 and my doctor is telling me if it gets any higher and I don't start Entyvio NOW, it won't work and I will have to have my colon removed. What the heck?? Here's the...
Asacol stopped working for me after 13 years on it. UC went from mild, to perfectly clear (never would have known I had it according to the doctor), to moderate/severe. Here is the time line: October...
Lol. Ain't that the truth! this is the longest its ever taken for me to get over a flare with meds. When I finally agreed to doing the remicade in August, I was like "ok, let's kick some booty and...
My aren't you kind! Trust me my head spins 1000 miles an hour every day when I have to think about what can I eat what can I not eat shoot did that hurt me the last time, did that not hurt me the...
Where are you located? Are you in the states? If so what pharmacy do you use? And one last question, can you ask your pharmacy what distributor they get the Rowasa from? The people who make it could...
Oh no! I hope not either. Keep us posted....
My **new** Functional Medicine Dr. prescribed LDN for me when I went to him for a more natural approach to treating my UC. Yeah, LDN isn't natural, but the side effects are better than Remicade or...
Thanks! BeautUC, are you doing Rowsa or Generic. Generic has never worked for me, but Rowasa always did. I can't get my hands on it....ANYWHERE!!!...
I'm surprised she didn't send it out for c-diff knowing you had two rounds of antibiotics. hmmm! Here is the probiotic I take. Seems okay. I just recently upped my dose to two a day. A bit gassy but...
too rough for the butt!! LOL. But I gotta hand it to you, you are braver than me for going in after your poop. LOL. Definitely go for soft cooked veggies. Personally, I can't do potatoes anymore. But...
I'm not taking it anymore, but got a letter a few months back stating Cigna is no longer covering it. Anyone else has this issue? I was wondering what was going on. Pure curiosity....