CD puzzle #4,897 or "the quest to save my colon"

After 5+ years of battling this disease, I finally have the diarrhea under control. My stools are formed and solid enough, and usually pass in 2 to 3 trips to the lou in the morning. That's enough cause for me to do an irish-frickin-jig every morning.

The trouble is the other 15 trips a day to the bathroom, to pass nothing but mucus and blood. No stool at these trips... just mucus and blood and spasms. And urgency.

My GI thinks it's time that I seriously consider surgery (removal of entire colon and terminal ilium). In the mean time, I'm starting Rowasa enemas.

How can it be that I've managed to "fix" my small intestine problems, but am left with this over-powering large intestine problem!!! Rhetorical. SOrry. I'm just frustrated because I feel like I'm SOOOOO close to being "there"... to being better. And now there's talk of surgery.

I've tried to address the large intestine/mucus/urgency issues with:
diet (low dairy intake, and other mucus-promoting foods)
bee propolis
enzymes
probiotics
and every prescription under the sun (asacol, etc.)

any other ideas on how to save my colon? I do love it so. Even if it doesn't seem to love me.

Rowasa enemas helped me and I hope they help you also. Waiting until I was very sleepy also helped me retain them when I was sick. You sound kind of stressed out which is of course understandable. Some type of bio-feedback or other stress control might be a good thing.

I find it strange that you have a well formed stool and yet continue to suffer these other symptoms. How about a food diary? Soy seems to bother a lot of us. I read here about some going on a liquid mellow diet of some sort to "rest" the colon. I'm not sure what that would do to your solid stools but it could be worth a try? I use my blue dye but if your colon is in really bad shape and not a good barrier it could let blue dye into your blood stream and that could be DANGEROUS.

I am feeling your suffering here and racking my brain. What do you eat on a daily basis?

Stef - you gotta try SCD. I know you did the gluten-free thing, which is pretty close, but SCD is more strict (no rice, etc.) It excludes sugars (from complex carbs) which can be a HUGE problem. Can you give it 30 days? I was having all of the "D", spasms, mucus, blood, searing/burning pains in the abdomen etc and within 7 days 95% of it stopped, within a few weeks I was up to solid bm's. It might not work, but it just might. I know you have tried EVERYTHING under the blessed sun. You are my hero. I'm just thinking what could be a last-ditch effort so that IF you go for the surgery you know you did EVERYTHING possible. Hang in there girl! Try SCD, seriously, just try it. I'm rooting for you!!!

Stef

Keeper, my fistulas healed up after about 4 or 5 months of doing SCD. I had figured that bacteria were causing them, and the SCD starved them out. What do you think?

PS, since you've failed the big guns, maybe you could look at alternative meds like LDN. Or maybe see if you can get a product like Modulen to give your gut a rest.

Spooky - I would think that fistulas are caused by certain bacteria - probably a combination of E coli, Bacteroides fragilis and probably a couple of others. They are adapted to the gut and have ways to avoid the gut immune reaction. My guess about their formation is that a site of damage from either bacteria or the immune response is colonized by bacteria that have secretions that nullify the immune response as far as targeting those bacteria. The immune system then goes into a non-specific inflammatory mode that damages self tissue as much as bacteria. The bacteria then feed on tissue damaged by inflammation. Anyway, the spread of the infection depends on inflammation providing the damaged tissue as much as actual bacterial invasion. Remember, gut bacteria are generally not invasive or we would have a real war happening in our guts. The key then is to control the inflammation.

The most recent idea that has come out of my reading is the the SCD controls inflammation by reducing the amount of enteral fat. This is a specific condition that characterizes Crohn's and is fatty deposits wrapping around the intestines. This only appears in Crohn's. This fat seems to be a source of extra inflammation, since it responds to any gut inflammation with an inflammatory response of its own. It appears that this fat can be reduced specifically by using a low glycemic index diet - low sugar/starch/carbohydrates. Exactly what the SCD does. Have a look at the link in my previous post for more on this enteral fat wrapping.

You might consider a trial of enteral nutrition before going the surgical route. If it's going to work, you'll usually see significant improvement within 10 days, so you don't have to stick with the liquid diet unless it's helping you.