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weird 'build up' behind stoma..

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Posted 7/19/2011 7:26 PM (GMT 0)
WOW Hodaya, must be steamy there. WOW UK 13 degrees that would be about 56 fareinheit.

I know Sarah, Atually when my end ileo was new, stuff would just whiz through. I would eat a sandwich and in about 15 minutes it was in the bag. NOw it pancakes and takes hours, then I eat chocolate to melt it down or drink grape juice and walk and walk and walk.

BUT I JUST DID AN EXPERIMENT,

I had potato chips and cottage cheese WITH a half glass of decaf coke. The chips and cheese were in the bag in 15 minutes. maybe now I just need the coke as small bowel does slow over time after it realizes the colon is not working anymore. So in 4 years my small has obviously slowed to make up for colon not being used. BUT now it may just need a little coke kick. I won't overdo this because I would go back to getting dehydrated like I was the whole first year I had the ileo. BUT it feels great to have it move right out. I hate feeling backed up behind the stoma. Glad I bought the coke yesterday. It actually whaled out a baby food banana that was stuck behind my stoma and trying to eek it's way out. 8 oz of coke and it was history. Roseamary
Posted 7/19/2011 7:29 PM (GMT 0)
we had a week of warm weather back in April.. think that was it!
Posted 7/19/2011 7:34 PM (GMT 0)
WOW Enjoy the cool. It is about 90 here in Mass in the US but where hodaya is 90 is MUCH hotter. She lives in Israel. I visited there this May and met her. It was warm back then but not bad in the shade. BUT now it must be wild with heat. Rosemary

PS MY chips have all passed 15 minutes with coke. YEAH!
Posted 7/19/2011 9:48 PM (GMT 0)
Ironmum, I have had an end ileo for 19 years and wear tight leggings, skinny very tight jeans and anything else. It will take a few weeks to settle things down but no reason why you can't wear tight clothes and I have a high output stoma!

The bulge behind the stoma was just where the food had clogged up due to output being too thick, bit like being constipated. It happens sometimes, your output will be up and down for a few weeks. Keeping a diary to know what your trigger foods are for what thickens and what makes output go nuts. If you know then if it is too thick eat/drink something that makes it thinner and if too thin then eat/drink something that will thicken.

The wine thing, well I drink and have no problems, mind you I don't like wine. I stick to vodka. Oh and fizzy drinks cause me a bit of gas but no real issue. So try everything as everyone is different in what they can eat and drink.
Posted 7/19/2011 11:40 PM (GMT 0)
once you get off the pain killers you should be ok to have some wine!
it will probably make your output more liquid, and possibly make you have more of it.
anytime i drink, i take two immodium so that i don't have so much ouput! and also remember to drink some water when you are drinking because it dehydrates you so much faster.
Posted 7/20/2011 1:32 AM (GMT 0)
Stripey,

How do you keep your tight clothes from injuring your stoma?

Also doesn't the bulge under your tight clothes make it noticeable, apt to leak, and be uncomfortable?

Iron mum,

Today I had a coke right after eating a cheese sandwich. WOrked like a charm. The sandwich usually gunks up in back of the stoma, but with a coke, I could hear that comforting sound of gas passing and everything came out in the bag in about 15 minutes, like when the ileo was new. Sure hope this keeps working. I felt great just like I did when my ileo was new and all whizzed through me.

Rosemary

Rosemary
Posted 7/20/2011 4:26 AM (GMT 0)
Tight clothes shouldn't injure your stoma - those little things are a lot sturdier than they look. In my teen years I wore the tightest jeans imaginable and, apart from having to empty a bit more, my stoma was fine!
Posted 7/20/2011 2:45 PM (GMT 0)
sarah

i am sure it is the meds you are on causing the slowing and the adjustment to the end ileo - it is constructed differently whereas the loop has two holes (i think?).

dont worry it will settle its only been seven days. :-) x

Posted 7/20/2011 3:22 PM (GMT 0)
hi all.. thanks for all your input and advice. Yes much better day today! stoma nurse came this morning and said I was doing great. You're right Karen, the 'end' ileo is indeed very different to the loop - as it's right at the end of the small bowel whereas the loop is much higher up. So things will whizz through the loop but the 'end' has a slower transit.

I've changed the pouch system I was using and now much better - the new one has the hole right in the centre, so there is room to breathe and output. Everything was getting clogged at the top and blocking the stoma with the old pouch. So all in all.. much better and it doesn't hurt anymore either.

Have worn leggings all day and it's been fine - so must have been the pouch/codeine combo that was causing the problem. Which is just as well since my entire wardrobe is made up of leggings, skinny jeans and tights! I even walked a mile to school this morning and am feeling great. Just booked a cottage for a holiday at the end of August too...

Off the codeine today too - hurrah!
Sarah
Posted 7/20/2011 3:50 PM (GMT 0)
sarah that is great!!! you are lucky - i cant wear skinny jeans as i am a classic pear shape and they look awful on me.
Posted 7/20/2011 4:10 PM (GMT 0)
Sarah,

where is your end ileo stoma? mine is to the right of my naval down about 3 inches from the naval. It was made of small intestine 4 inches up from the terminal ileum. Glad you are better. Rosemary
Posted 7/20/2011 4:18 PM (GMT 0)
so glad you're doing better :-)   which appliance are you using?

i'm sure it will only get better and better from here on.

Posted 7/20/2011 4:51 PM (GMT 0)
Rosemary its on the right about 4 inches lower and 2 inches to side of tummy button.

Karen its a Salts aloe vera confidence drainable one piece. Have this great powder to use around the stitches etc to help it heal as well.

Pretty tired tonight.. But so happy things are going well so far. Feel SO much better than I did. :-)
Posted 7/20/2011 5:50 PM (GMT 0)
esor, tight clothes shouldn't hurt the stoma. The skinny jeans all have a small amount of lycra/elastic ability on them so have a small ampunt of give in them and like shaz says you just need to empty it bit more often. I tuck the clip end of my bag into the top of my knickers behind the bag so that when it fills it is in the lower tummy area and so doesn't show, if you see what I mean. That way unless I am wearing a short top that is not long enough to reach top of my hips no one can see any bulge when it fills.

It is surprising how tight items can be without affecting the bag or output. I only had one accident from wearing tight clothes and that was just after I first had it done and the very short, tight skirt I was wearing (just like to point out I was 21 yo at the time) didn't have any give at all in it so you do have to take that into account.
Posted 7/21/2011 2:36 AM (GMT 0)
WOW Sarah, your stoma sounds low to me. But they are all different. Glad you are better. I still get that build up behind my stoma depending on what I eat. My wafer is fine though I give the stoma lots of lee way and cut the stoma hole pretty big unless I have a burn to heal right under the stoma. I do use an eakin seal around it to prevent burns other wise I would get them around the stoma on all sides of the stoma. I wonder if the Eakin affects my output. Did your nurse say the end ileo had a slower transit than the loops?

Stripey, interesting about that tight stuff being OK. I wouldn't dare wear tight stuff. I go around looking like I just fell out of a good will barrel I wear such lose shorts. LOL! but I just can't chance that tight stuff. Glad you can though and if you were 21 and had to deal with an ostomy, glad you could wear what you wanted (though I can see why the tight skirt caused an issue. oops!)

Thanks for replies on my questions, Rosemary
Posted 7/21/2011 8:15 AM (GMT 0)
I asked for it to be as low as possible Rosemary.. in the vain hope that one day, I might be able to wear a bikini again! Yes apparently according to my nurse the 'end' ileo has a slower transit time than a loop.

Karen - I'm not sure I actually look good in skinny jeans but I wear them all the same ;-) mainly with tunic tops or loose smocks. I like to have something tight over the bag as I hate the feeling of it 'hanging' loose and like it to be supported. Yesterdays' leggings seemed just fine.

Tight stuff has to be fine, as one day I'm hoping I'll get back into triathlon and that involves a wetsuit LOL x
Posted 7/21/2011 5:54 PM (GMT 0)
Oh, I see. Interesting about the slower transit in an end ileo. At first my end was super fast, but now that it realized I no longer have use of my colon it has slowed to 2 hours or so. Then I get that pancaking. THEN discovered Coke! YEAH!
Posted 7/22/2011 3:47 PM (GMT 0)
I'm doing great.. the ONLY thing I'm having trouble with is indigestion if I eat a 'reasonably' sized meal. Doesn't really matter what it is I feel full for ages (like 7 hours) and it feels like it's taking forever to digest. Have a lot of burping too! the only time I ever had indigestion and burping before was when I was pregnant.

Am hoping it's just because it's early days and it'll settle down. But yes transit time is pretty slow - certainly compared to the loop. I don't think it means I have a problem with slow transit of my small bowel, but that my system is just settling down again after an 'interesting' year! or at least I hope not... :-/

Other than that and a little soreness/bleeding around the stoma where the stitches are, I'm doing just great! Can't believe it's only 10 days since I had this surgery... amazing.
Posted 7/22/2011 4:41 PM (GMT 0)
Sarah,

After 4 years I still fill very fast and it takes me forever to get hungry.

For breakfast I have hot rice cereal, orange juice and decaf coffee. Then I drink water through the day.

THEN around 3:30 only IF I am out and very active do I get hungry at which time I'll have a scrambled egg and some toast or a bun.

Then if I'm still active around 9 I am hungry for a bowl of rice crispies. And that's it. Despite having so little appetite my weight seems to be staying up around 135. Should weigh 125, but am thrilled i CAN eat.

Just wondering what the lack of hunger is all about. My transit was originally totally normal except for a bit of accelerated gastric emptying.

Rosemary
Posted 1/4/2012 4:13 PM (GMT 0)
Shaz,

Question on varying ileostomy output. Yesterday I had for breakfast 2 pancakes, egg, and milk. Then I did not have my usual 8 glasses of water but had about 4. Then for dinner I had a cheese sandwich and tomato soup. Then the output got sooooo thick that I had a LOT of grape juice and tea. Then all the output came out. THEN it kept coming and coming. SO then I took 2 immodium. Still the grape juice kept coming and coming out. So I took 2 more immodium and that did no good. SO I ate two small containers of baby food banana. Equal to about 4 table spoons. THEN in the night, it was like everything stopped. So I rolled onto the side with the stoma and drank water and went back to sleep. QUite a bit of the banana and thick effluent from the immodium came out. BUT I knew there was a ton more.

I had to change my bag today, so I changed while the output was thick as that is easier to control. Everytime I change the appliance for whatever reason, it slows the output for awhile. ANother friend with an ileo has this experience too. So once it started I could feel the stoma trying to push out the rest of the baby food banana and thick effluent from the immodium. I drank some orange juice and it did no good. Then I had grape juice. Still no good. So I had decaf tea, still no good. THEN I had two cups of hot caffeine tea and walked on my treadmill. Everything loosened up and came out.

THEN the output was VERY watery like all the grape juice and I filled two bags and was getting dehydrated. So I took 4 immodium (NO BABY FOOD BANANA this time) and am going back to sleep.

I have to be with it and have all OK for a 4 hour ride to NJ tomorrow to get on a cruise ship. This was not a stomal blockage, but rather a bad combination of foods and drink where the consistency was crazy. I did one thing to counteract the other. No nausea or anything. No distention.

Do you think another time, all I would need is the one cup of caffeine tea with sugar to get things cleared out. Seems like I way overdid the liquid. BUT, was trying to avoid caffeine so I could get back to sleep.

Gotta get a handle. Just wondered if you ever heard of such extremes before. Normally, I do OK, this is just really a catch 22 I am in at this time.

Rosemary
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