Second stage - loop ileostomy

Do you know how many CCs of output you are having per day?

Are they giving you any medications to decrease your output (e.g. Imodium, Lomotil, etc)? Are they modifying your diet to decrease output?

I had too much output from my loop ileostomy -- I believe about 1400 cc per day on the day I was discharged. I need to take Imodium to limit my output to an amount that keeps me from dehydrating and is, frankly, convenient to me. I take six Imodium per day and I also eat to reduce output (I eat thickening foods like yogurt and rice, and I limit caffeine and sugar). There is NO WAY that I would have ever been discharged if my surgeons were simply waiting for my output to decrease on its own. My output slowed down on its own about five weeks post-op, but not significantly and I still definitely need Imodium.

I'm not saying that to scare you, but if they aren't trying either diet mods or adding medication (Imodium is VERY mild, has few side effects, and doesn't build a tolerance) then I would ask why.

PS this does not mean your guts are bad in the least. These things happen! Are you working towards a j-pouch? There are many people here and elsewhere who had loops that ran like faucets and ended up with great functioning j-pouches with nice soft/thick output.

Yes, I'm taking Imodium, I think 3 per day right now. They are waiting to see what happens with they before increasing it. My surgeon is off for the weekend of course. My output is currently hovering around 1600-1700cc per day but today it jumped up again. No caffeine, little sugar. They seem more concerned about the amount than the quality. I'm on constant IV fluids right now too. I know they're being cautious and they're not worried exactly, but I feel bummed out. I knew this would be different and it will level off over time but I haven't breathed fresh air in 9 days and I'm going a bit batty.

Well... Just between you and me, I asked the nurse to detach my IVs temporarily so I could take a shower, then I put on civilian clothes and slipped outside for a breath of fresh air. My mom went with me just in case I felt faint or had any problems. Maybe not "recommended" but let's just say there are ways...

Anyway, 1600 is a lot and it's prob for the best they're keeping you for now. Imodium will do something but, at least for me, three per day would be "like pissing in the ocean" (my GI's words!). It just isn't enough. I take six per day now and it helps a lot. Some other things to keep in mind:
- Never drink plain water. Drink a true oral rehydration solution (like Pedialyte) and sip throughout the day, never chug.
- Separate beverages from meals by at least 20 minutes.
- Avoid hot beverages and liquids like tea or soup
- Avoid sugar, juice, caffeine, fried foods, fatty foods
- Eat 5-6 small meals throughout the day; eat frequently
- Eat a thickener with every meal: white bread, crackers, rice, pretzels, pasta, oatmeal, creamy peanut butter, hard cheese, and potatoes are all good thickeners. Marshmallows can thicken output as well so Rice Krispies Treats are one of the more delicious very thickening foods... use in moderation.

Also keep in mind that if you're taking any oral opiate pain meds right now they are probably slowing your bowel down somewhat too... in other words, once you get OFF the pain meds your input might increase again. You should have a plan for how to decrease your output in addition to your usual routine in case you have a sudden increase due to indigestion or a stomach virus. For example, when I was taking eight Imodium per day (the maximum dosage), my GI wrote me a prescription for Lomotil as well, so if I had a stomach virus that caused diarrhea I would be able to add something else to prevent dehydration.

Hope you get out soon :)

Liz, thanks so much for your response and suggestions. Goes to show you what the hospital knows-- I get milk AND juice AND soup (and coffee or tea also, until they stopped the caffeine) with each of my meals, the nurses are constantly bringing me water and telling me to drink drink drink. They have upped the Imodium so hopefully that will make a difference. After a 2L day yesterday things have really slowed down (although I haven't been drinking as much today because my appliance was giving way and I wanted to have a shower and an easy change). I feel a little lightheaded now but I'll replace my fluids and I'm sure it will pass. Yes, oral pain meds (hydromorphone) is still on the menu, but I use it sparingly because I have a high pain threshold and a distaste for narcotics. I'm just sort of resigned to be here until they let me go, but it's nice to hear some reassurance from the trenches!

Wound vac. Sounds ew. I have my IV pole as my constant companion but aside from this output issue I'm pretty much mobile and I'd be fine at home. I shared some of Pluot's suggestions with my mom, and we proceeded to google pedialyte, and she has now run off to mix up some of this magical potion sans chemicals (it sounds pretty basic really). So. Onward.

Pluot said...
Yay!! Moms are the best

Mine sure is! I can quite literally say I'd be dead without her (and not just because she gave birth to me...)