Crohn's for 29 years - I'm currently doing very well with mild left side symptoms (a little intermittent blood off and on sometimes days or weeks apart...and othewise good health; knock on wood).
Before I give my background, here's something simple that seems to work for me when I'm starting to get more blood and urgency. It's the upside down enema. The idea is to insert the enemas and then go inverted so that gravity gets the medication further up into the colon. Sounds crazy, but it seems to work and my doc says he can clearly see from my colonoscopies a healthy line of demarcation where the medicine reaches and it's much higher than the normal "lay on your side" technique. He's now recommending it to some of his patients with left side disease.
The necessary ingredients are 1-2 enemas of your choice (Rowasa seems to work best for me) and an inversion table that can be purchased at most sporting goods or back stores. I insert the enemas while laying on the floor, and let things get settled for 3-5 minutes. I then get up and make a quick move onto the inversion table. I then hang upside down for 1-2 minutes, come back to level, and repeat the process 1 or 2 more times.
After this treatment, I find I can walk around the rest of the day and retention of the enemas is not a problem. When I start to have increased symptoms, this method has worked extremely well at calming things back down.
Now the Background:
Diagnosed in 1982
A couple of severe flares in the 80s. These were shut down with 70-80mg of prednisone over 7-8 weeks. I'm lucky since these seemed to give me remissions of 2-3 years.
The 90's were good. I was in remission for about 10 years and only took Asacol. In terms of diet, I don't go crazy but I definitely limit bread, cereals, grains and sugars and try to keep carbs under 100 grams per day.
Then I had a severe flare in 1999 that put me in the hospital. Looking back, I was working too hard over several months and let a minor flare turn into a major flare - my left colon was "hamburger", severe pain with bowel movements caused me to vomit...when the fever and chills kicked in, I got checked into the hospital. We should have caved in and gone to the prednisone earlier. I was in the hosptial for 7 days, and mainlining 135mg prednisone a day. Went home and had 30 days of bowel rest on TPN to allow things to heal up. It was a very depressing return home, wondering what was next and whether I'd recover and be able to work again. I'm fortunate that I did recover, and other than a very scarred colon, I've been doing pretty well since then.
My flares seem to come every couple of years, are treated with predinisone and I've been fortunate that nothing major has developed.
Right now I'd say my symptoms are a 1-2 on a scale of 10. I'm healthy, active and thankful. I haven't taken prednisone in 2 years, and am trying to stay off it. The next major flare my doc wants me to go on Humira, but I'm trying to avoid it if I can. My doc tells me it's amazing I'm not on a TNF inhibitor given what happened 10 years ago.
Here's my approach:
4 Lialda per day (4.8 grams)
4.5 mg Low dose Naltrexone (started July this year and I think it helps, keep you posted on this new treatment)
4 oz. Rowasa enema nightly, even if I don't have symptoms
200% RDA Folic Acid
Very low grain, and no sugar diet, easy on the alcohol (not more than 1-2 drinks)
5 Fish Oil tablets daily, I'm currently experimenting with between 5-10
Exercise - Crossfit (intense) workouts 3-4 days per week
If I see increased blood or urgency, I start doing the upside down enemas
I hope this is helpful. I know everyone's disease and experience's are different. I've been fortunate that my rough times have been limited, and all in all I've been able to successfully manage for almost 30 years...and hopefully many more.
Before I give my background, here's something simple that seems to work for me when I'm starting to get more blood and urgency. It's the upside down enema. The idea is to insert the enemas and then go inverted so that gravity gets the medication further up into the colon. Sounds crazy, but it seems to work and my doc says he can clearly see from my colonoscopies a healthy line of demarcation where the medicine reaches and it's much higher than the normal "lay on your side" technique. He's now recommending it to some of his patients with left side disease.
The necessary ingredients are 1-2 enemas of your choice (Rowasa seems to work best for me) and an inversion table that can be purchased at most sporting goods or back stores. I insert the enemas while laying on the floor, and let things get settled for 3-5 minutes. I then get up and make a quick move onto the inversion table. I then hang upside down for 1-2 minutes, come back to level, and repeat the process 1 or 2 more times.
After this treatment, I find I can walk around the rest of the day and retention of the enemas is not a problem. When I start to have increased symptoms, this method has worked extremely well at calming things back down.
Now the Background:
Diagnosed in 1982
A couple of severe flares in the 80s. These were shut down with 70-80mg of prednisone over 7-8 weeks. I'm lucky since these seemed to give me remissions of 2-3 years.
The 90's were good. I was in remission for about 10 years and only took Asacol. In terms of diet, I don't go crazy but I definitely limit bread, cereals, grains and sugars and try to keep carbs under 100 grams per day.
Then I had a severe flare in 1999 that put me in the hospital. Looking back, I was working too hard over several months and let a minor flare turn into a major flare - my left colon was "hamburger", severe pain with bowel movements caused me to vomit...when the fever and chills kicked in, I got checked into the hospital. We should have caved in and gone to the prednisone earlier. I was in the hosptial for 7 days, and mainlining 135mg prednisone a day. Went home and had 30 days of bowel rest on TPN to allow things to heal up. It was a very depressing return home, wondering what was next and whether I'd recover and be able to work again. I'm fortunate that I did recover, and other than a very scarred colon, I've been doing pretty well since then.
My flares seem to come every couple of years, are treated with predinisone and I've been fortunate that nothing major has developed.
Right now I'd say my symptoms are a 1-2 on a scale of 10. I'm healthy, active and thankful. I haven't taken prednisone in 2 years, and am trying to stay off it. The next major flare my doc wants me to go on Humira, but I'm trying to avoid it if I can. My doc tells me it's amazing I'm not on a TNF inhibitor given what happened 10 years ago.
Here's my approach:
4 Lialda per day (4.8 grams)
4.5 mg Low dose Naltrexone (started July this year and I think it helps, keep you posted on this new treatment)
4 oz. Rowasa enema nightly, even if I don't have symptoms
200% RDA Folic Acid
Very low grain, and no sugar diet, easy on the alcohol (not more than 1-2 drinks)
5 Fish Oil tablets daily, I'm currently experimenting with between 5-10
Exercise - Crossfit (intense) workouts 3-4 days per week
If I see increased blood or urgency, I start doing the upside down enemas
I hope this is helpful. I know everyone's disease and experience's are different. I've been fortunate that my rough times have been limited, and all in all I've been able to successfully manage for almost 30 years...and hopefully many more.
