Community Forum

Most threads include responses from others taking biologics and other medications, but not so many threads relating to people on simpler 5-ASA or no medications living with this disease. I found other online forums for this but wanted to get a response here. Has anyone been in remission for quite some time or not taking meds? I am looking to hear from those who are minimally impacted by Crohns or UC just to maybe provide some hope for others for a good place to get to!

Reply posted for aaronfreemanr.

Ihav e had UC for 2 years now. Or I should say 2 years since my flare up. We have it our entire lives.
I had a severe case, in hospital for 7 days on 60ml corticosteroids /day for 7 days. Doc weaned me off pred too fast, had to get on budesonide 3mg/day for 3 months while I tapered off the pred. Now I keep an emergency kit of bud, and lomotil for diarhea. I also take 125 mg fluconazole every other day. It took me about 18 months to feel normal. I now look and feel normal. There is no preventive for a flare up. Baylor U med school completed a study concluding there is no prevention. So dont waiste your time on diets. Antiimflammatories do nothing as well. Inflamation occurs because of a flare up. INflamation does not cause a flare up.

 Reply posted for indialogue.

Hello. I read your testimony and i understand what you feel. Ive had uc for 23 years. I experienced remission and not remission. I was 24 when diagnosed i took the asacol for at least 10 years then the disease kicked up again ..struggled some but found remission again till i was n my early 40s sadly it flared more then not. Many people i know who have this are in remission with less invasive medicine so hang n there. Myself im on entyvio and had remission for 1 year then i had 2 bad flares as the uc is active just n my rectum strange cs its only there compared to previous years were it was higher n the colon. Im just now coming off a flare. Im hoping i stay well one day at a time. Doctor has no answers cs everyone reacts differently to treatment. Diet and no stress are very important i believe. Keep taking what u r if u can if ur flares r mild itl b ok. Beware of steroids cs they are harmful to your bones. Calcium is good to take. There are many anti inflammatory properties in aloe ...boswella..tumeric...probiotics...organic organic apple cider vinegar. Talk too ur doctor its important to have a good relationship with them. Keep a food diary . For over 20 years i been gettn through it i keep accepting it and i maybe headed for a clinical study if i flare again cs its damaging my rectum no were else and theirs no recection in that area. I maybe a candidate for 4 week entyvio infusions cs i dont respond to anything else. I also heard of older people getting remission in their 50s also. Take care i wish u the best

 Reply posted for aaronfreemanr.

I was diagnosed with UC when I was 15.  Over the years I was primarily on Prednisone, which was horrible.  Eventually, I had surgery, which was the best thing I ever did.  I opted for the Koch Pouch option, which has worked well for me.  I did have one long period of remission in my 20s.  Looking back on it,  I attribute this to my use of marijuana at the time.  I stopped using marijuana  when I went back to college at 30.  That's when my UC returned with a vengeance (didn't make the connection at that time).  Since my surgery 30 years ago, I have struggled off-and-on with "pouchitis," a common inflammation that occurs with these surgeries.  Since marijuana is legal in my state, I decided to try it again.  I have not had a bout with pouchitis for about 3 years now.  Don't expect doctors to recommend  or approve it as there is little research due to the legal restrictions (so stupid).  I'm 65 now and definitely not a "stoner."  But I will say I KNOW it helped me.  It has also helped about 4 friends of mine who have suffered with IBD, UC, or Chron's.  You may want to consider it.

 Reply posted for aaronfreemanr.

Thank you for this post, I was also wondering the same. I am newly diagnosed. My first flare-up that I had in September was a mixture of diverticulitis as well as colitis. My second flare-up two weeks ago was colitis of the ascending and proximal transverse colon. I have to go see a GI this week in hopes of figuring out the specific type of colitis. The most meds I have been on are Cipro and Flagyl (antibiotics) for 10 days per flare-up. I am beginning to wonder if I will eventually have to be on daily meds. I do not feel like I need daily meds at all, but judging from the forums, it may eventually be a possibility.  

I was diagnosed with UC in 1985, when I was 13. I have had some bad stretches for sure. In my early thirties, I almost could not function. I had lost 50 pounds, had a painful abscess for several months, went to the bathroom 10+ times per day, and had almost no control. For some reason, I slowly started getting better, and for the last 8 years or so I have managed it with only Lialda. I have had almost no symptoms during this time. I have a Colonoscopy every three years now, since I have had UC for so long, and the doctor always sees some very mild inflamed areas. But for some reason it has stayed in check. Before this long period, I never went more than 6 months without a flare up. 

I take a very large dose of high quality fish oil, and a daily dose of Vitamin D. I have also started eating a much healthier diet, much of which I obtained from a book called "Inflamation Nation", by Dr. Floyd Chilton, and from a physician named Dr Joel Furhman. I think those things help, but I can't say for sure.

So there is some hope!