My Ulcerative Colitis - In remission for 2.5 years

Hello everyone

This is my first time posting on this forum. I used to read through this forum when I had bad colitis hoping I would find a cure. I will put my experience here in the hope that it will help somebody.

My symptoms first started in 2005 with some diarrhoea and constipation that I just put down to an irritable bowel. By about 2006 I began to see blood in my stool and experience some pain inside my lower back. I know people often complain of abdominal pain but I never experienced this. The pain was always located inside the colon. I was worried about the blood so saw a gp. He examined and said I had internal piles and prescribed some suppositories. They worked for a while but then the blood came back a few weeks later. My GP arranged for a colonoscopy and I had it done. The doctor said they could not see a lot from the colonoscopy but they took care of a pile that they had found.

I was ok for a few weeks again but then the blood came back. The pain was never too bad but there was often blood and diarrhoea. I tried to change my diet and eat different things but nothing worked. I was getting really worried about seeing blood all the time so went back to see my gp. My gp was away and I saw a different doctor this time. He did an exam and took a stool sample. He asked my about my diet and suggested I was not having enough fibre. I left and planned my new fibre rich diet. Big mistake!

A few weeks later the pain started to get a lot worse and lots more blood and bowel movements. One Sunday I had spent the morning on the toilet in the worst pain of my life. It felt like my whole colon had been badly burned. I went straight to hospital. After a couple of days there without food and lots of drugs I was called for a colonoscopy. The doctor came to talk to me the following day and said I had severe UC. After 10 days in hospital I was feeling a lot better and was discharged with my prescription of pentasa and imuran and a 2-month reducing supply of steroids. This was early 2008.

about 2 months later I was feeling good and there was no symptoms. For the next two years my symptoms were on and off. I would always have to go back on the steroids to stop the bleeding. I never felt that the imuran and pentasa were working for me and I was convinced my diet had cuased the Colitis.

In early 2010 I moved to Canada. I had brought a brought a six month supply of my prescription with me. I decided that I would try lots of new foods to see if they would help reduce my disease symptoms. Over the course of the first six months my symptoms reduced to 0 and I stopped taking my meds. I have not had any UC symptoms in over 2 years.

When deciding what new foods to try I tried to find foods that have good anti-inflammatory properties. In early 2010 I added ginger, lots of seafood especially salmon, more broccoli, green tea, sweet potatoes, curry and spices and aloe vera drinks to my diet.

I also cut a lot of fibre from my diet along with pork, larger and protein shakes.

Before I moved country I had a very high protein diet with lots of meat, bread and dairy. I was very active and used to go to the gym almost every night followed by protein shakes and creatine. I believe this diet is to blame for my colitis. I find that due to a busier work life since I moved I am no longer as physically active as before and this has helped.

I think the major foods that have helped me stay in remission are ginger, aloe vera juice drink with pulp, and substituting fish for meat a couple of times a week.

I think if anybody with a very high protien diet is suffering with UC they could try some of the changes I made.

Has anybody been in remmision from this for over 2.5 years and have it come back?

I am glad you are in remission! yay!

I had a 10 year remission and a 5 year remission, druing those times i did nothing special (not even meds!)

I am in a 4 year flare up and have tried every diet mod and almost every alternative treatment with no luck!  this disease makes no sense.  :(

now on a 4 week quick taper of pred and imuran and i seem to be turning  the corner......

 

   This disease is sooooo unpredictable.  Like you, when I thought I was not getting enough fiber in my diet when symptoms first appeared.  At the suggestion of a GI doctor (whom I only saw once and that was enough), I took Fibercon .  OMG....BIG MISTAKE....all H*** broke loose.  I wound up in the hospital for two weeks and that is when they discovered I had UP (proctitis).  I was placed on Prednisone ...first time I ever took it....and Asacol.  My condition improved after about two months and I enjoyed a two year remission.  That was in 1998.  Well, I flared in 2000 and my doctor switched me from Asacol to Colazal along with the prednisone again.  Another two year remission.  In 2002, flared once more and now the doctor put me on 6MP.  Long story short.  I had to have surgery in 2010..total colectomy with end ileostomy.  Done with the disease!

daveycrocket said...
I added ginger, lots of seafood especially salmon, more broccoli, green tea, sweet potatoes, curry and spices and aloe vera drinks to my diet.

Salmon and Curry well well well. I use turmeric every day, that is my medicine. I eat salmon and filet mignon. Spinach helps too. I used vegetable protein now Pure Green Protein. I also boil up eggs and eat 2 every morning and Greek yogurt.

Remission will be 2 years at the end of summer but end of summer is when I flare so I stopped taking doxycycline for a massive wasp attack that caused my arm to swell up. I am aggravating my remission with D-Stunner a terrific preworkout stimulant drink unfortuntately they put creatine monohydrate in there which is not necessary. Making gains in the gym so taking it for now, body fat low, belong to 3 gyms and doing daily cardio running around lake, biking and rollerblading.

I was in a 2 year remission and just starting a flare in May.

I had four years of remission from my UC and now I am in flare for UP ... *sigh* this go around is different and I am noticing that what I eat has more bearing NOW with the proctitis than it did with the colitis ... weird.

Thanks to InSoFla's posts, I added the aminos threonine and glutamine in addition to digestive enzymes which are GREATLY helping me cope. I have discovered too that the less sugar I have, the better I get so I am having to tweak my diet once again and start using more stevia and less sugar for things. Also have greatly reduced gluten products, I feel marginally better.

I think it is possible to control it with diet, but it may take a long time. Like a minimum a year. Marianne, when you were on the diet, was it strick? (like gluten free, little carbs, dairy free) and was it for a year.

Also, I  think there are people that respond fast to dietary change. UC might be individual but it can't be THAT individual. My opinion is we got UC because of something we put in our mouth. It has to be.

Regardless, strick diets aren't for everyone, quality of life will suffer if diet is not your thing.

The longest I've had remission is 2 years, followed by a terrible flare.
It seems when I'm in remission, I feel totally healthy, but my UC has demonstrated many times that it's always there lurking, waiting to strike at any time. That part of UC really sucks, hard to plan job, trips, etc

Interesting. Another link from Creatine (body building/sports supplement) to Colitis. I believe it exacerbates/triggers inflamation in some people, including me on a couple of historic occasions.

Great to hear you're doing well on Diet mod. I'm making some progress with Diet mod alone but it is not positive all the time and am probably going to try LDN in a couple of weeks to get that next step of healing/relief.