itchy, smelly, and losing more weight

8 lbs in 13 days isn't normal. It sounds like you're losing a lot of fluid. Call your Dr and let him know what's up. I doubled my normal fluid intake to replenish the fluids & electrolytes I was losing with my temp ileo. I also took lomotil to slow my transit time, IIRC 2 tabs 3x a day, at lunch, dinner and bedtime.

I had "phantom odors" too, but no one around me complained of any funkiness so I just chalked it up to insecurity on my part. The phantom odors went away soon after.

To stop the adhesive from irritating my skin I use either a light coating of stoma powder or Brava barrier spray (used to use the former but the latter works better for me now).

I wore a belt 24hrs a day when I had the temp ileo; it did wonders for my sense of security in those early days when I was getting used to being an ostomate. I had a bunch of convex bags left over when I had my pouch removed, and wore those with a belt in the first few months I had my permanent ostomy. I gained 20lbs, didn't loosen the tension of the belt and developed a pressure ulcer next to the stoma. So, belts are great but mind you don't tension them too tightly.

Not sure what to tell you about the poo problem, other than let your Dr know about it and maybe invest in a bag of incontinence pads?

Good luck!

donna.
most important.. that weight loss is NOT OK. Try eating smaller meals 5 or 6 times a day. Make sure you eat "thickening" foods with each meal. Real potatoes, rice, oatmeal, ... stuff like that. Do not drink when you eat. Try to stop stuff with sugar, avoid processed foods, avoid greasy things like french fries, avoid hot liquids such as coffee, soup, etc.

You are probably too early out of surgery to try immodium or other thickening things.. but I think you should be able to see some changes by altering your eating/drinking.

Make sure every one of your 5 or 6 meals is focused around protein - some kind of meat, peanut butter, eggs, cheese,.. think protein.

As for drinking, try a true WHO electrolyte beverage. I use packets from Jianis brothers and I mix it in with crystal light. You can also look into Ceralyte (have to get both of these shipped) but for instant solution get some Pedialyte. In any drugstore or grocery store in the baby section.

Sip the electrolyte drink all day, and in the night when you get up to use the potty. Do not chug any fluids.

now onto the other questions - I use M9 drops (though I use a lot more than a drop) and I use them all the time cause I don't like the smell when empyting.

You are probably over sensitized right now to your ileostomy as it is new. I suspect your pouch does not smell to others, unless of course you are having leaks. If your skin is getting itchy it does sound like you do not have a good fitting appliance solution yet. Or possibly your skin is not setting straight when you apply the sticky part of the wafer? Are sitting, laying down, or standing when you do appliance changes? Some people do use belts, I never did. And I never would. I couldn't stand anything extra around me as I am a thin petite woman. Are you using an eakin seal or hollister adapt ring under your wafer? That often helps with the seal and overall "comfort" of your kit. Also do you have a convex wafer or not?

As for you butt leaking.. do you still have a jpouch inside. Is your ileo a diverting ileo, or did you get the jpouch excised and have a permanant ileo?

And if you are only day 13 out.. wow you should expect to be weak. However, I think if you can get hydrated and eat more it might help you.

And I am happy to hear you are already roaming the aisles at Target. way to go girl. But as I told Lynne earlier this year, another jpoucher gone permanant ileo on this board, one step at a time. Don't let all of it overwhelm you so much. Things will work out.
I think right now... trying to get things slowed down and eating differently would be high priority.
hang in there.
liz.

I am doing a lot better - maintaining weight, a better appetite, but still emptying frequently. I went out to lunch today and had to empty three times in a couple of hours. I even took two Lomotil beforehand. I had a turkey sandwich with a bit of melon so I don't think it is what I ate. This happens to be my norm now but maybe I am overly anxious after just 3 weeks.

The new appliance I am using now is Convex with an Eakin seal which has not leaked and is not itchy so I am relieved I have found something so quickly. Last week I leaked at night and at 4 am was changing which was not a picnic. With these new pouches I am feeling more confident.

Liz, I still have my j-pouch. The plan was to use it for a Kock Pouch but it didn't quite work out since I had so many adhesions and it was too risky for the dr to remove it and reuse it for the Kock. The plan now is to try again in 6 mos to a year and have the Cleveland Clinic do it. It's a loop ileo and I have heard that it is more difficult to tend to than an end. The dr thought not however. I did not give the dr permission to give me an ileo and was shocked when I awakened. He made his own call when he could not go on with the original plan.

It is still hard for me to deal with this emotionally. I had such confidence in my dr and had no idea that this could be the outcome. I get angry too - this surgery was for nothing. My j-pouch has given me problems from day one but this new plumbing is not any easier at all.

Iseeuc - I don't get the belt you mentioned. I have one that hooks onto my pouch and around my waist but I don't feel like it does anything. My pouch fits so snugly so I don't feel it needs support.

I hope I can be more accepting and I am normally a very happy-go-lucky person but I have pity parties when I think about all of this. I cannot even wear one pair of my pants now and am wearing exercise pants when I go out and I never did that before. My stoma is high so nothing seems to work anymore. Any ideas?? I hear some folks don't make one wardrobe change and I am wondering if their stomas are lower. My bag always pooches out, even after I empty. Am I doing something wrong? I did buy this pregnancy wrap around thing at Target. It's called a Beband and looks like a tube top that you place around your belly. Can the bag break if there is too much pressure on it? There are different sizes, smaller ones are tighter of course and keep things flatter. I am still experimenting but if someone has better ideas, please let me know.

And another thing, I am putting Cepacol mouthwash onto a tiny piece of tp and slipping it into the pouch. It cuts down odors immensely and makes emptying so much easier. I didn't have faith in it when it was mentioned but it really and truly works!!!

Hi Donna.

I also smelled phantom odors for a few weeks after I got my first ileo. Part of the problem was that I was associating the smell of the adhesives and the baby wipes that I used to clean the tail of my pouch with the smell of output.. so in other words, if I smelled a babywipe, it made me think I was also smelling fecal matter. This feeling went away.

The belt helps to support the weight of the bag when it's filling up and also to hold the adhesive even more snugly against your skin. You might not need it. Honestly it's your call. I didn't wear one in the winter when I always had a pair of pants or tights supporting my bag, but in the summer when I was mostly wearing thin dresses, the belt made me feel more secure and improved the state of my peristomal skin.

My ileo was high as well (well above the waistband of all of my pants). I wore this kind of high-waisted underwear: http://store.americanapparel.n.../?productId=rsals365 The stretchy lace is really comfortable and it comes up quite high so it completely covered my ileo and pouch. It was snug enough to keep things pretty well supported and camouflaged under clothes, but forgiving enough that I didn't have to worry about it popping a full bag ever (I even slept in it on occasion).

Generally it's OK for the waistband of your pants to be anywhere in relation to your stoma... above, right on it, below, etc. Because of the location of my stoma most of my pants' waistbands fell about an inch below the stoma itself. Sometimes depending on the fit of the pants and the consistency of your output this can cause output to collect at the top of the bag instead of flowing down past your waistband to the bottom, but with your fast transit I doubt you will have this problem.

Liz's suggestions are all great for fast transit. I don't think it is too soon to use bowel slowers. Remember mild dehydration can cause a LOT of little nagging problems that you might not connect to dehydration (including irritability!).

For a lower profile to the pouch you might want to try a one piece appliance instead of two piece. They're not for everyone but they don't "pooch" out as much and fit closer to the body.

Ok, so tomorrow I'll take a pic of my lowest rise pants with my ostomy so you can see how I do it. I don't wear mom jeans - I wear Ann Taylor LOFT pants - the Julie style or the denim color pop. I'll see if I can figure out how to post here...

My output was extremely thick today and I seemed to be emptying constantly. I have this new pouch by Hollister and the tail end is small and really difficult to empty. It's really hard to clean it too. It doesn't want to open like my other one. Thank goodness I got in a new supply of Convex wafers today.

Liz, I am adding a packet of powder to a pitcher of water. It has a lot of electrolytes in it so I am staying hydrated. I keep a pitcher of it on the counter and am sipping all day.

I am not taking the Immodium and Lomotil on a regular basis. Maybe it would help if I did so - dunno.

Liz, that is exactly what is happening. I am wearing my exercise pants and the waistband hits the pouch about 1/3 down from the top and the stool collects up there and then I've got a big bulge. I don't want my pouch to be dangling over the jeans either since it will flop around. I think I will look into that one piece appliance - would love a no pooching pouch. I am going to order the underwear. I would love to have some panties that hit above my stoma. The ones I have now are all low and sometimes I stick the pouch in them but then it cuts the flow off and another pooching pouch.

Jill, I am looking forward to see your photo. Any recommendation is greatly appreciated. I really do miss my jeans!!

Have you tried to put your bag sideways instead of having it hang down? Might help with clothing. I know you can do this with a stealth belt as well.

I think positioning it sideways would still be a problem - the pouch is wide.

http://www.youtube.com/watch?v=oAsqSnbcG6Y

Ok - ignore the weight i've gained since getting healthy

Here is how I manage my ostomy. 10" bag. Fold and tuck in the underwear.

Let me know if you have questions!

Had to post other pics as a reply

Last one

Jill thank you so much for posting these. I'm definitely going to order midi bags to try. Also - we have the same underwear!

I have a better idea now of how to manage my bag and I'm happy to know that even if my waistband is below my stoma the stool will still slip down there.

Vanessa,
That belt is pretty cool. I wish my stoma was that low - mine is even with my belly button. I am going to get some stretchy, waist high panties to help with my problem.

Jill,
Thank you for the photos. It's interesting to actually see how others are dealing with their pouches. Doesn't your stool rise up to the top of your pouch with your low rises on? I suspect with a loose fitting top all will look ok. I'm 3 weeks post op and my belly is still swollen so that is part of my problem.
I need to learn how to post photos - that was awesome.

Nope, stool does not bubble up. and you can see the pants are a bit tight on me right now - even with that the output just falls down with gravity.

donna I wear totally normal pants too. I would NEVER wear mom jeans or maternity pants. I wear all different rise levels like Jill posted. I do wear coloplast MIDI bags. And I do wear target boy shorts. And if I am wearing low rise skinny jeans I will generally wear a tight tank top thing which is long and will overhang the "low rise" part of the jeans. And then I wear a loose flowy shirt over it.

I do turn the Midi bag so it aims down my right thigh. It does not rub on my leg, it does not stick out my underwear, and it still holds a whole lot of poop!

I do not wear an ostomy belt, I do not wear maternity pants or granny underwear, and I do not worry about where any waistband hits the ostomy whether at, above, or below.

I swear... I need to start an ostomy fashion company. "how to dress like a fashionista, despite having an ostomy." I think the best thing to tell you ladies here.. is just to try to not worry about the ileostomy, and dress like you want to dress. You will find a way to make it work and you will look awesome and feel comfortable.

oh and another vote goes to the coloplast sensura because of the wide opening on the end to empty and the way it rolls back so the end stays clean when emptying. donna did you get any coloplast samples yet?

Liz,
I did get the Coloplast and I agree with you - they are so much better than the Hollister I am now wearing. The end is so small and it is so hard to open it up and clean.

My Home Health Care Nurse gave me a recommendation which I think I mentioned in another post. The smell was really bothering me when I emptied and she said to try putting Cepecol Mouthwash on a square of TP and stuffing it in the pouch. Let me tell you, that stuff works!!! I do it every time I go to the bathroom since it comes out with the poo when you empty. That alone made this process so much better.

I still get that pooch when my jean waistband hits my bag. Jill said her poo falls down with gravity but mine collects on top. I just emptied and I am looking at this pop belly which I am not used to having. My nurse said to put a pin ***** on top and let the air out and then tape it. I tried it but it doesn't seem to work. I think the hole is sealing itself off though.

I did discover something at Target which I love. It is called Beband and it is in the maternity dept. It's a soft, knit band that fits snugly from waist to lower abdomen. I feel very secure with it on and it does flatten the bag out somewhat. Could that be a problem? It comes in black, nude, and white so there is a nice selection. They are $16.95 and worth every penny.

I am going to have to buy the Midi bag. You say you aim it at your leg. My stoma is right at my belly button so even with an angle, it will still be quite high. I am relieved to hear that everyone still wears their jeans and you just make things work. I have been trying different tops out and I have got that figured out - no more clingy t-shirts but loosely fitted blouses. I have to work on the pants though and I am sure, in time, I will figure something out.

Thanks for all the suggestions everyone.

Do you Use a filter bag,mt hat helps let gas out. They sell valves you can attach to the bag to let gas out but I found them a pain to put them on the bags.

Hmmmm, let me look into that. I don't know why I have gas since I am still so careful in what I eat. And, btw, do liquids just flow out of you after you drink them? I had a lot of water yesterday before some blood work. I had to empty every half hour for a couple of hours and it was pure liquid. It sure cleans the pouch however. I love tea, either herbal or decaf, and that stuff runs through me too. Perhaps it's just because I am 3 1/2 weeks post op??? There's still lots of stuff to figure out here.

The gas gets better over time.

THe liquid issue gets better too, but you might want to try Immodium. Take two at the same time each day for a few weeks. You will find that things thicken up and slow down.

hot liquids can definitely make fluids gush out of you. So tea... maybe cut back on that for awhile. Also plain water can make things gush. Try drinking only a true WHO electroylyte solution all day every day for a week or so and see if things change for you.

Also try to reduce your sugar intake, that may help with the gas situation.