Ed-u-ma-cation

March 28, 2009

Today was another wonderful day. Well, you know, actually, there was one health related issue that arose for me, but in comparison it's small beans. I finished one course of Cipro and Dr. T prescribed another one for me, but I didn't get to the pharmacy to pick it up till after work this morning so I missed a dose. I don't know if it's just coincidence or if it was because I missed a dose, but all day my stools were watery and they burned, which are symptoms of pouchitis. We'll see if that's better tomorrow after a couple Cipro doses. I have a fear that that's going to happen. Although folks on j-pouch.org say they've taken Cipro for years (one person three years, one person 13 years) because of chronic pouchitis, I don't know how keen Dr. T is going to be on continuing to prescribe it for me. The refill she called in for me yesterday is only for two weeks. She's already said to me I can take it long-term, but not forever.

Chronic pouchitis isn't a good thing. Basically because the reservoir that holds my stool (my j-pouch) is made of my small intestine (because I no longer have a colon which normally holds the stool), it can sometimes have a difficult time creating the appropriate flora/bacteria (which the colon was used to doing) and when that is out of balance an infection can occur = pouchitis = increase in the number of BMs a day (around 12 which leads to dehydration), burning when you have a BM (which leads to a sore bum), watery BMs (which leads to dehydration), fever, gas, etc., etc.. Because the opening to my j-pouch has been having problems dilating (opening when I have BMs) appropriately due to the formation of scar tissue where the opening was made, I am not always able to completely empty my reservoir (j-pouch) which means stool is left in there, thereby creating an inappropriate balance of bacteria, which also could be leading to pouchitis. It's hard to know what the cause is.

The solution? I would prefer to take medication, even if it means long-term. Some people also rotate antibiotics on a monthly basis such as Cipro and Flagyl (and others I don't remember) for chronic pouchitis so they don't grow a resistance to them - that is pretty common among my fellow j-pouchers who also suffer from chronic pouchitis. Another thing folks due to deal with it is take probiotics in hopes that that will balance out the flora/bacteria in the pouch. I'm actually going to check with my fellow j-pouchers on whether they get prescribed probiotics or if they get them OTC. I have been eating the yogurts and stuff, but maybe that's not strong enough. And finally, another solution is to have surgery.

Surgery: Depending on what the cause of my pouchitis is, either re-doing the opening to my pouch so it dilates appropriately might solve the problem, or having a whole new pouch constructed in hopes that the new pouch is healthy enough to maintain a good balance. The latter would suck. It would mean living with another temporary ileostomy (intestine sticking out of my abdomen with a bag attached to it where I evacuate stool) until the pouch healed. There is a risk too that when another pouch is created there wouldn't be enough length of a certain vein that supplies blood to the pouch to stretch to my rectum and so I would end up with a permanent ileostomy. That would suck too (understatement). Although I guess if that happens sometimes that vein can stretch over time (they attach it to the side of your abdomen so it stretchs) and later it might be possible to get rid of the ileostomy (crazy huh?).

Oh my gosh - I have no idea if any of this is making sense to you! I'm doing my best to explain. If anyone is reading this and has questions, please feel free to ask. www.jpouch.org has great diagrams and stuff showing the whole process. It's a whole different world, the j-pouch world. Welcome!

Today I did a couple of things to live freely in my j-pouch state (meaning no ileostomy any more). One, I sorted through my clothes and made a big stack to give to the Goodwill of things that I wore when I had my ileostomy. I was careful to wear clothes that were loose around my waist and that came down to my upper thigh so as to hide my bag (or "appliance" as they call it). Thank God for baby-doll and tunic styles being in fashion!

The other thing I did was I went grocery shopping and bought whatever food I wanted (foods the old Abby used to eat + meat). When you don't have a colon, you are very aware of how every single food affects the quality of your stool, and you want GOOD quality! Yes, it is a crazy world, this colon-less world. When you have a j-pouch, after time the pouch starts acting like a colon, so you don't have to worry so much about what you eat. But you know what, that's probably enough of an education on life with a j-pouch for tonight. Maybe another day I'll explain more about food and the colon for those of you who don't know.