I NEED YOUR HELP IN THE NEXT 15 MINUTES!

suebear said...
Definitely don't underestimate the rectum!!! I had UC limited to my rectum and a spot the size of a quarter took two years off my life. Ultimately I had surgery as no amount of enemas, suppositories, and pills (22+ per day) would put me in remission. It can be a stubborn area to treat.

sue

My U.C. has taken what is probably an unusual course. I was first diagnosed with pancolitis, but each subsequent flare has been concentrated further and further to the left side. If someone had told me when I was first diagnosed that this would be the case, I would have thought that was really good news. I have learned that for me, as the disease became more left sided, it also became more resistant to treatment. True that the symptoms are not as severe in terms of loss of appetite, dehydration and diarrhea, but it is so chronic now.

Now my colitis is limited to the lower rectum, but just won't totally just go away. I get tantalizing close to remission, only to have the rectum inflame and swell again to some degree. How frustrating!!! The rectum is literally soaking in hydrocortisone 24 hours a day (because I am doing 2 colocort enemas/day) and yet is still gets sore and swollen at times. You wonder how that is even physically possible.

Red,

I do wonder about the steroid getting onto the inflamed tissue at the bottom of the rectum and anus because I am able to pass gas after a fairly short time once the enema is in, so i makes me wonder if I am firing it up too high, but you would think gravity would pull it back down once you are on your feet. Having a watery enema sitting right by or literally in your anus (sorry to be so graphic) isn't the best feeling, but you gotta do what you gotta do with this &$^% disease.

Thanks for the reminder about that. I will make sure i soak the lower area by keeping the tip of the bottle lower down. Can the last inch between the rectum and anus get inflamed too? I never considered that.

Hi Red,

I tried your trick last night. I pulled the tip of the bottle through the last part of the swollen rectum while releasing generous amounts, all the way through so that a bit was even on the outside to make sure I didn't miss anything.

This morning was better, although of course one day does not make a trend.

The other thing was I am having horrible hemorrhoids and I thought the blood drops were from a internal hemorrhoid as opposed to rectal bleeding, but this morning the blood drops were gone too. Never a bad thing!

Anyways, thx for tip and I will let you know if things continue to get better down there.

I recently discovered coconut water as a substitute for sports drinks. Far less sugar and the potassium/sodium is better. The plain coconut water tastes like booty but the ones with a splash of juice are good. I agree that if you re getting worse you might consider stopping the asacol (ask your doctor). I can't tolerate mesalamine either. I used to do fine on the enemas but the orals make me feel terrible.