When you start a flare does your sense of smell change? It's a significant change for me. This is at least the second time my sense of smell has changed during a big flare. It precedes the taking of...
Doctor is switching me back to pred. 40 mgs. This is a nightmare. Matt...
How long did it take for Uceris to really kick in for you? I'm on day 3 and still struggling. (I don't expect miracles but if things don't start to settle by Monday afternoon, I'm screwed.) I'm going...
Thanks, All... Doc called in Uceris. I'll start taking in the am as I took one Pred this afternoon as I saw some blood in the toilet. Of course, 5 minutes later I get an email saying he had called in...
Curious, do you take the immodium per the instructions on the box? I've always heard that immodium could be questionable for us... no? Thanks, Matt...
I tried the SCD years ago and it put me in the hospital. Different strokes... Glad to hear it's working for you, though! the only thing that worked for me in the spinach and sunflower seed butter...
It's the stress for sure. It's been coming on since I made the decision to switch jobs. I'll look into the uceris. I'm really trying to hold out for this upcoming trial that begins in a few weeks...
Okay, I've been doing pretty well the last few years doing my own thing. I'm on no meds as I ran the gamut and nothing worked for me. 4 or 5 years ago it looked like surgery was inevitable but I was...
I make a smoothie for every day of the week. While it may not cure UC, I has kept the surgeons away. I am no longer on any UC meds - they all failed me anyhow... That was 4 years ago. Do some...
Sure but as with any home remedy, your mileage may vary... I use a vitamix with the largest container to make 3 smoothies at a time. I use a large handful of Spinach Mangosteen juice Flax seed oil...
I take tylenol and make sure that I don't miss a smoothie in the am. I also eat Sunflower butter every night especially if my gut becomes involved. So far, I've been able to overcome the flares I've...
I'm not too far off from you in that none of the meds worked for me except prednisone. And we agree about how evil that can be. The diets didn't work for me either so this smoothie thing has been a...
I've tried every major UC drug with very little success. From Asacol to Remicade, they either give me bad side effects or proved to be ineffective. I was on Prednisone for years and, while it reduced...
As we all know, Ulcerative Colitis doesn't just attack the colon. Often the secondary symptoms - joint pain, vision issues, etc...-are just as debilitating as the first. There are days where I would...
Colitiscombatant, When Remicade and Humira failed, I was left with few options. I had tried the SCD which left me at 135 lbs - down from 170lbs - and in the hospital. The surgeons started circling...
Scarecrow, what was the supplement that helped? Do you see a Chinese naturopath?...
Biopsies have always been UC and never crohns but since the pattern is inconsistent, they call it indeterminate colitis. He says that the small intestine is unaffected at this point but would want to...
balenogt91, it took about 6 weeks for it to really kick in. I had given up until the labs came back and my inflammation numbers were down. It worked for about 5 months before falling flat. Good luck....
Thanks, guys. I'm flat out terrified of surgery. The Clinical trial is the "easy" choice because the ramifications or a drug are often time not immediate. The down side is that I could be giving...
Title says it all. I post about once every 6 months when the latest medication the docs prescribe to me fails - otherwise, I just lurk. Alas, here we are again. Humira has stopped being effective for...
Christine, If you don't mind me asking, how severe were your flares before surgery? I've only ever had 3 flares (this one included). Granted the one a year ago lasted a very long time and put me in...
Eva Lou, I just returned from the doc's office. He's upping the Humira to once a week instead of every two weeks and putting me on 40mgs of Prednisone. I told him I would only stay on it for two...
Yeah, I know but it's hard to keep that rational part of the brain in play when you are staring at the prospect of potentially ruining the rest of your natural born life. I do have to say that even...
Thanks, Fruitgirl. I've been to jpouch.org. It's pretty terrifying over there. I've consulted with a well known surgeon in my area but it's still a "crap shoot" (literally). Matt...
Just wondering if you were in Southern California. It's tough to get anything done properly out here especially when it comes to doctors. I still haven't found a GI I like and trust. My big fear...
Yeah, Marianne. I just wonder when it will become necessity. I'd hate to be putting it off if eventually I will end up having to have it done. Where are you located? Who did your surgery?...
Eva Lou, I've been using the melamine enemas for about 4 days with little result. The reason I'm so far down the road with the meds is that my previous docs decided that I didn't tolerate the ASAs...
If you had asked me two weeks ago, I would have said the same thing......
Yeah Remicade did nothing for me. I was "ready" to have surgery and the last hope was Humira. I met with a surgeon, etc... It just sucks because I had a really good 3-4 months. If I'm told surgery is...
Thanks. It's just tough going from two years of absolute misery to finding something that works. It's not that 5x a day is a lot, I just see where I may be headed. Couple that with the knowledge that...
As a last ditch Hail Mary before surgery, the doc put me on Humira in January. Just as I had resigned myself to surgery, it started to work. For months, I was the best I've been in years. Only one...
Nothing worked for me until I started Humira. Since I was led down the Remicade path, I figured I might as well give Humira a shot (pun intended). I was on Remicade for over 6 months before we...
Yeah, be careful on SCD. It was the straw that broke the camels back and landed me in the ER. I lost 30 lbs in a month and my symptoms went through the roof. BEWARE! Matt...
Let me guess, you live in Southern California and the nurse draws her eyebrows on with a pencil... I just can not find a doctor who gives a crap in this town. Not to mention, I just got a bill from...
Kingcrapper, I'm was in the same position as you. Remicade stopped working - actually, I'm not sure it ever did as it may have been the Prednisone. So I was switched to Humira a few weeks ago. No...
You cant be serious. You really drank it? Was Joe Rogan there egging you on?...
I have two healthy kids at home who I would use as donors....
As far as I know there are few if any GI's that are willing to do it through colonoscopy for UC. If you know of any in the US, I'd love to know!...
Thinking about trying Fecal Transplantation at home but the fact that my colitis extends to my right side makes me wonder if it will be a futile attempt as the enema probably won't reach that far...
Yeah, I've taken supplements, drank gallons of Aloe, eaten my fair share of yogurt, tried the diets, etc, etc... and none of it seems to work for me. The SC diet put me in the hospital so the...
I've been in a flare for two years. I was hospitalized last July with a fever, I was down 30lbs in a month from the SCD and was having 8-10 bloody bowel movements a day. I was on my 3rd Remicade...
Insofla, I'm inclined to agree and reluctant to have more Remicade. I'm still waiting for the doctors to talk to me. Will be interested to see how this goes....
Looks like a double dose of Remicde is coming my was this afternoon. I tried to discuss alternative options but those fall on deaf ears. I'm concerned about more Remicade as I think it could be the...
I've had a "flare" for six months now. I was diagnosed with UC 6 years ago with few minor flares since. At the end of last year, I was diagnosed with c diff and my minor UC was now patchy throughout...
Thanks guys. At cedars now. Admitted to the ER following a high Remicade fever. 102.8. The upside is I met my new GI a week early. Stay tuned....
Thanks for the help! I'm determined to find a good doctor. KiWi44, surprise, surprise, I'm the West Valley (West Hills to be exact). Where were you? I'd love specific names if you've got'em. PM me if...
Seriously. I've now been to 3 different doctors and each have been total douchbags. This latest guy takes the cake. Sorry for the colorful language but sometimes it's the only way to accurately...
Never heard of LDN but I'll read up THANKS!!! Do you need a Dr's prescription? I've been tested for C Diff 3 times now but I'm skeptical about the testing. The people I turn the "samples" into seem...
I've lurked here before and never posted but have appreciated the info from the posters. So, thanks! I'm 39 and have had a mild case of UC for about 6 years. I was never on meds (per the doctor who...