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Posted 8/31/2017 9:24 AM (GMT 0)
I'm out of the hospital and home- they almost didn't let me go home because at first I was dehydrated and then I was putting out too my liquid which thought was going to make me dehydrated when I went home.

Anyhow, its my first night home and in slept really well. I got up twice to empty my pouch and it's kind of a lot. I'm trying to stay hudrsted but I'm really not used to drinking this much. I feel really full when I drink and have no room for food or other nutrients. Also, I feel like my output is a lot. What's normal for right after surgery? They have me tracking everything. I'm about a week post-op on Friday.
Posted 8/31/2017 5:08 PM (GMT 0)
I'm trying to remember what my nurses told me. They had me track my output each day into a measuring cup they had given me. I believe as long as I was under 1000ml in a 24 hour period I was ok. I read this online...

"After bowel surgery, the small intestine gradually adapts and your stoma output should thicken up (to a porridge-like consistency) and reduce to around 400-800ml per 24 hours"
Posted 8/31/2017 9:43 PM (GMT 0)
I was also sent home with a measuring cup and told my output shouldn't exceed 1000 - 1200 ml. If over 1200 to call the surgeons office.

The first couple weeks it does take your body a bit to adjust but my surgeon said a lot of times high output can be controlled with diet.

At the beginning I tried to alternate electrolyte water with regular water or drink herbal tea. Too much water isn't always a good thing.

Watch sugar as that draws water to the bowel and can make for liquid output.. You can try thickening foods, apple sauce, apple slices with PB, cheese and crackers all helped me. My ostomy nurse said pretzels with peanut butter are great to help slow and thicken output and get much needed sodium. It was one of my go to snacks in the beginning.
Posted 8/31/2017 10:18 PM (GMT 0)
All great ideas. Thanks. I had peanut butter with toast earlier, so maybe that helped? I am measuring and tracking. I was over 1.5 ml which they said to call if I am over that number in a 24 hour period. They just increased my Imodium and said to rotate water with Gatorade and juice. You guys are so smart!

I was a little worried bc before I left the hospital yesterday they weren't sure if I was going to go home bc I was outputting a lot. They didn't want me to get dehydrated. I was drinking about 85oz since yesterday so I know I'm hydrated. I'll keep the pretzels in mind. Have been trying protein rich foods and no sugar (only natural, in yogurt and such).
Posted 9/1/2017 1:07 AM (GMT 0)
Potatoes tended to slow things for me, but i had a very tough time with my loop. Mine was always going, and it went fast and the output was liquid. I had a lot of trouble with dizziness. It's a tough 8 weeks with a loop. The end wasn't bad at all, very easy in comparison. I was in a trial where i had to use imodium, you should ask about it if things don't get easier. You can probably take it to help slow things a bit.
Posted 9/1/2017 1:55 AM (GMT 0)
Oh interesting. Yea I expect I'll get the hang of it right when we do the second surgery. Isn't that how it works? How did your takedown surgery go? Are you glad you did it? Was it easier with the iliostmy or u like the j pouch better?

Immune is still completely liquid- one week post op. They did put me on 2 mg of Imodium and increased it today to 4mg. Seems to be helping so far- even since I posted this this am.
Posted 9/1/2017 1:46 PM (GMT 0)

Doggiedo said...
Oh interesting. Yea I expect I'll get the hang of it right when we do the second surgery. Isn't that how it works? How did your takedown surgery go? Are you glad you did it? Was it easier with the iliostmy or u like the j pouch better?

Immune is still completely liquid- one week post op. They did put me on 2 mg of Imodium and increased it today to 4mg. Seems to be helping so far- even since I posted this this am.

Speaking for myself, takedown surgery was a breeze. I had a penrose drain at my ostomy site with just a couple stitches to hold it in place. Other than that it was mainly left open to heal. I'm beyond happy with my J Pouch even though I was initially scared to eat anything but now I eat everything in sight. I hated my Illeostomy, the itching and burning under the wafer drove me bonkers. As far as Immodium, my surgeon said I could take 8 a day in my initial time after takedown.
Posted 9/1/2017 3:40 PM (GMT 0)
I'd assume you're having 2 steps since you're already had your pouch created. That means you have a loop right now. If you have 3 steps, the first step is just collectomy, no pouch creation, at that time you have an end ileo.

I am so thankful to have a jpouch - even though I did pretty great with my end ileo. The only thing I hated was the loop ileo. The takedown was a breeze for me too. I was in and out in less than 48 hours. It took a little getting used to, and there are some bad things, like butt burn, but overall, it has improved my life a ton. The end ileo was easy enough, at a point, I wondered if going forward with the reconnection was a good idea. That's how easy the end was. Then when I had the loop, there was no doubt that i needed it gone ASAP, the loop was really bad for me. Getting used to the jpouch is a longish process, but I went to a christmas party a few weeks after surgery and I was fine. In the early stages you will go to the bathroom very often, things calm after a few months. Even in the early phases, I was just so happy to no longer have that nightmare loop - the jpouch was always a huge improvement over my loop. One thing about the ileo for me, is that I had to wear looser fitting clothes. I have some shirts that I bought that I think I am going to toss or donate. I am now much more petite and I wear a lot of form fitting clothes again. I was very petite with my ileos too but I wore loose clothes to hide the pouch, I wasn't on pred and weight dropped off throughout the process - before I knew it, I was back to my preUC weight.
Posted 9/1/2017 11:06 PM (GMT 0)
Yea mine is a 2 step.

The visiting nurse looked at my output numbers today and called my doc to get me seen today bc she thought the Imodium was working too well. Basically I put out 75 oz the day I got home and only 15 the second day.

The doc said my stoma looks doscolored bc it's pulling back in a little bc I'm not outputting. She put me on a liquid diet and said hopefully I'll start outputting tonight. I should be prepared to have a lot of output since it's going to kick in and kick in quick. That was what she said at 2pm and it's 6pm and I haven't had any output.

Doc is on call until midnight. She said to call her if I don't clear up. She said call her either way in the am so we can figure out if I can go back on the Imodium (obviously a less dose).

I'm worried it won't right itself. What if it doesn't kick in. I'm bloated and tender bc of the back up.

I'm sorry to be such a worry wart. Your input is so helpful though!
Posted 9/2/2017 5:09 AM (GMT 0)
That is stressful. It hopefully has started outputting already. I had it once with my loop where things got stopped up and I started cramping and I took a hot shower and eventually things started moving, but it was really scary and uncomfortable. I was worried I'd have to go to the hospital. You don't want to wait too long if there's a blockage. It's weird, with my end ileo, I never had any issues. With my loop, which i only had for 7 weeks, I had so many issues. I hope yours is a breeze, but mine was a hassle. I hated it. I am happy I got to experience the end, because I know if I had to live with that, I could do it, but the loop, no way!! That for me, was a temp situation and needed to be.
Posted 9/2/2017 2:12 PM (GMT 0)
Loop ileos are notoriously difficult to deal with, I spent 18 days in the hospital because my output was so high. And then I needed to be readmitted because of a blockage/kink. I was close to 3000ml a day the first 5 days and then it started to slow down.

There are some meds that they can give you besides Imodium, I was given lomotile and tincture of opium but they are narcotics.

For night time they have high output bags which could enable you to sleep through the night. I would put one on at night and change it in the morning to a smaller/normal size bag.

My surgeon wanted me to watch out for dehydration, even with the highout I managed to stay hydrated with a lot of G2 gateraid.

As I healed my output slowed down ALOT. It was very manageable after 4-6 weeks.
Posted 9/7/2017 12:55 PM (GMT 0)
I found eating a lot of mushy foods helped to thicken up my output. Mashed potatoes, mashed carrots, pasta a little overcooked, bread, pancakes. I've only had my temporary ileostomy for 4 1/2 months and I don't really remember how liquidy my output was at first but it's better now. It takes a few weeks for the body to adjust to the change. It's best to wait a half hour before consuming liquids after you eat. When needed, I'll take a couple of small sips while eating but it's better to wait 30 minutes before consuming large quantities of liquid after a meal. That way your body has a chance to absorb the nutrients of the food you eat.

Hope this helps.
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