I used the mini bags with pretty good success after my temp ostomy for the reasons you are describing. I was also able to wear my low rise jeans with them. You do have to empty more frequently but you get used to it. I used a two piece locking system. For sleeping, I did change to the regular size pouch so I could sleep for longer periods.

I'm interested in knowing how you finally came to your decision. I also have chronic pouchitis going on two years plus since takedown. Without cipro use intermittently ( wsy more often yhan i would prefer) I am in constant pain. I feel it's inevitable that somewhere in my future I will be removing my pouch also. I just wonder how you managed for 15 years with chronic pouchitis. Dud you treat it during this time and how bad were your symptoms and pouch at the end? Good luck to you moving forward.

Hello Lynne,

I've had my ileostomy since 2007. I received it at age 54. I've always preferred the larger bag because it holds more and I don't have to empty as much. I pretty much have liquid stool all the time. I prefer it this way because it slides out of the bag much easier and takes me less time in the bathroom to empty. THE TRICK IS that when placing the bag on the flange, tilt the bag either right or left (depending where your stoma is placed) so that it lays diagonal across your lower "mound" (excuse my words). This bag placement spot is great because as it fills it distributes the material across your belly. My stoma is on the left.

Another trick I've found is to turn the flange before placing it on your belly as a diamond with a point north, south, east, and west. The flange tape in this position will cover the scar near your naval very nicely.

The vitamins I use are Nature Made Liquid Soft Gel Multi for Her 50+ With Calcium No Iron. They are large but break down quickly. I try to take either a chewable or gel when I take my Vitamin D, B-12, daily vitamin, and calcium. My medication to help build bone is the Calcitonin Salmon nasal spray.

I use a Convatec moldable two-piece system with a clip and love it.

You'll do great!

Caty

lynne
first congrats.

am running out the door now so will post more later. wanted to get this to you wanted to get this to you so you can order samples today..

Coloplast SENSURA MIDI size bags. I too am petite. they are between regular size and mini size. I love the sensura MIDI for size, how secure they are, cloth backing, how easy they are too empty, I could go on.. and no I am not getting commision from coloplast!!! they have normal flat and light convex. If you need more convexity you have to go to assura. But they also have midi bags.

Also - when you order. try to get the smallest size wafer that will work for your stoma. Speak to them on the phone. Remember your stoma will be shrinking. Wafers are color coded. The smaller ones (with smaller diameters for stoma) are actually smaller overall. So for petite chics like us, that is huge. Between the one I use and the next size up - the wafer top is about 1mm higher on my abdomen. That becomes just annoying enough to not wear all the normal clothes I like. So if your stoma is 1" diameter and they have color X that fits 3/4 to 1" and color Y that fits 1" to 1.5". Order color X.

also don't think about clothes yet. I wouldn't even bother spending any money on any fancer ostomy underwear. You will probably find you don't need much of that stuff, if any at all.

You are so soon out of surgery. Your gut is still swollen. Your ileo is still adjusting. just wear pjs and sweatpants for now. Go buy some fancy sweatpants to wear the next few weeks if you want. Once things adjust we can all help you dressing fashionable!

and I use flintstones chidrens chewables. two a day. one in am one at night. and caltrate chewable calcium pills.

Forvia makes a chewable vitamin. These were made for folks with IBD. I chew these 2 times per day. It can be chewed till it's almost like powder.
www.forvia.com

Wow – thank you for the quick replies!

Jeane, the main reason I ultimately opted for a perm ileo was my desire for more freedom/control. I also hoped it would improve my health, which was a calculated gamble since they still haven’t been able to diagnose me and so there was no guarantee that the surgery would “cure” me. I wanted to go into the surgery as healthy as possible and I had a strong sense that I wasn’t going to be in a better position in the future, so everything added up to indicate to me that I was ready and really wanted to move forward. Reading posts on here also gave me courage. Regarding how I managed the pouchitis . . . My quality of life did decline over the 15 years of chronic pouchitis as my leaking and nighttime accidents became more frequent, it was hard to keep weight on, etc., and the things I was doing to manage were becoming ineffective (started with probiotics, then moved to intermittent antibiotics, then to constantly rotating antibiotics, then to Remicade – all the while restricting what I ate significantly). I just knew that my quality of life was not going to improve and my GI wanted me to start layering on more drugs and I decided to pull the plug on the madness. It is a very personal decision and nobody can tell you whether or not it is right for you (unless there's an emergency situation). I wish you the best in your decision-making.

Caty, thank you for the detailed instructions on how you position your bag. I’d never thought of doing it that way. I appreciate the suggestions and will give them a try. I hadn’t heard of any of ht supplements you mentioned, so thanks also for that info, as well as for the moldable 2-piece tip. I have no idea what any of that means, so you’re encouraged me to start branching out more.

Liz11. . . what can I say to thank you? You are one of the reasons I had the courage to move forward with my surgery. Might sound odd since we’ve never met or even communicated privately with each other, but I want to let you know that your decision to generously donate your time to this group by fearlessly communicating the details of your journey totally inspired me. Your reply here is another example of how truly helpful you are. I’d never heard of any of those bag and wafer types so have some research and phone calls to make this week. And thank you for the chuckle about clothes. I admit I’ve been feeling pretty discouraged about what I’ll be able to wear to work, out in public, etc. I am finding that I am not a good patient in that I’m expecting myself to bounce right back to normal now that I’m getting energy back. I need to remember that it will take time to heal and adjust. I see the connection between being a patient and being patient.

Bodoni, I will check into the chewable Forvia vitamins. I’ve read mixed things about Forvia and was considering discontinuing even before my obstructions because it sounds like some people’s systems get wacked out from the high does in forvia. I might order the chewable and start with a half dose. Thanks for the tip.

Well, once again, this site has provided valuable insight and support. I am so glad to be part of this group and I appreciate the suggestions very much!

Really glad everything went well. I assume you are using the same Hollister pouches they use at the hospital in SF. That is pretty much the most basic set up available. I used it for a while but I ordered samples from various companies and tried them out. Experiment and see what works, best everyone's body is somewhat different. I ended up with Coloplast Sensura one piece. Most people with an ileo get 3 or 4 days between changes (some more some less) but it may be less if your output is very liquid. Your output will likely will thicken some with time.

I use the Forvia chewables, I take one a day which is half dose the recommended dose. Havent been on them very long. They do contain iron which I need but some people have difficulty with. Regarding the quantitiy of vitamins in the chewables it is actually pretty low compared to a general multi vit. with the exception of B12 which is quite high, but this makes sense as B12 is absorbed in the end part of the ileum which we have lost part of.

Congratulations on your successful surgery. I've had my permanent ileo for six months and continue to make adjustments in my appliances and wardrobe, especially as the weather gets warmer. To keep the bag close to my body I've purchased a wrap from the folks at Comfizz. I've also found that loose, dark, patterned shirts make the bag harder to detect. Good luck!

Thank you for the post, Chiromancer. Yep, same lovely bags as you had. I didn't know if I was allowed to venture outside of Hollister with our insurance, but it sounds like you found a good solution. I am going to be making calls tomorrow to more of the bag manufacturers.

Chewable Forvia sounds like a great solution and I like the idea of taking one. I will order right away. I appreciate the recommendation. Glad to hear you are doing well.

ISeeUC, those are helpful tips about dressing. I have not been successful so far, so now I'll have a good idea of where to start next time I go hunting for clothes. I haven't heard of ComFizz, so will check that out. I've heard a lot of good things about Ostomy Secrets, but they are pricey. I also appreciate being reminded that it takes time to sort out all of these lifestyle/dress/appliance challenges.

Thank you for taking the time to help me!

quote:

Yep, same lovely bags as you had. I didn't know if I was allowed to venture outside of Hollister with our insurance,

This doesnt seem to be a problem I have gotten everything I have requested at zero cost. Not sure who your Ostomy nurse is now your out of the hospital. Normally they schedule an appointment a while after surgery, they are often quite helpful and may have some samples on hand. Just make sure you have plenty of supplies on hand in case of screw ups on your orders. I like to accumulate an extra months worth so I dont have to worry about it. Some supplies are not stocked and can take a few weeks to get. Once you settle on your final system this is not a big deal. My experience is their system is not without problems. After the first order You have to call in the re order of the supplies(it will not ship automatically) but the nurse has to put in the "prescription".

lynne-With my insurance I can order whatever brands I want. I order through a distributor, edgepark.

Also as for clothes and underclothing, etc.. I again am a less is more kind of girl. I cannot stand belts, wraps, pockets in underwear, or any of that stuff. I am tiny and petite.

I wear the coloplast senusra MIDI bags as I mentioned before (2 piece) so I switch the midi to a regular bag sometimes at night which then allows me to sleep through the night. I do wear the bag angled down toward my right thigh. With coloplast 2piece sensura you can rotate the bag any way you want and you can unlock and do that without undoing the bag or wafer.

I wear "boy short" style underwear. 2 for $12 at target and cheaper when they are on sale.

http://www.target.com/p/gillig...4#prodSlot=large_1_9

The boy short undies come up almost to the top of my wafer/bag and hold it all in nicely. Not too tight like that spanx stuff. I do buy one size up from what I would be wearing if I didn't have an ileostomy. The bottom of the bag is well above the bottom of the underwear on the leg. Then I just wear whatever clothes I want. For me, it doesn't matter where the waistband of jeans, pants, skirts, etc.. hits. If I am wearing tight skinny jeans I wear a looser flowy tunicy kind of top. I might wear a tight tank top under that and tuck it in, then the blousy top over.

Dresses and skirts are fantastic. Again, with the "boy short" underwear everything is held in nicely.

I think your first goal should be to get an appliance/system that you are comfortable with. Make sure it works good (aka no leaking, etc., is easy to empty, and you feel comfortable moving around and being active with it.)

Then move onto the clothes/fashion arena. Try out some different underwear like the boyshorts above. Or even high waisted trendy ladies briefs. (they don't work for me because I am too short waisted, but I think plout on here uses them and they are styling nowadays) And then go to your closet and try on your normal clothes. check yourself out in front of the mirror. Think you will be pleasantly suprised how you can't tell you have an ileostomy once you play the dressing up game!

You also mentioned your bag is "filling up a lot". Have they measured your output yet? If not, that should probably be done. If you do have a high output ileo there are many things that can be done to slow down and reduce the output. Don't know if you lost your entire jpouch, if so, you may have a higher output ileo. With my last one, my surgeon resected back on a lot of my small intestine (guessing it was from the jpouch itself), so my output reduced from my previous ileo which I had when my jpouch was just disconnected.

Also wanted to remind you about B12. That is absorbed in the bottom part of your small intestine. I inject myself weekly now with B12.

Lastly remember you are still in recovery. Your abdomen is still swollen, your ileo is still adjusting, so try to be patient. Also, your blockages could be due just to the swelling from surgery. So try not to worry about that being a long term problem.
And remember - eat lots of protein for healing.
best wishes,
liz.

My ears were burning! These are the "trendy high waist briefs" I wear: http://store.americanapparel.n.../?productId=rsals365. They are super stretchy so I'm never scared of them constricting the bag too much, but they cover the wafer completely and help distribute the contents of the pouch evenly so there is less bulging. It seems like most people like to wear a snug camisole or tank to keep the bag close to the body but that's really uncomfortable for me so I prefer to "control" the bag from the bottom instead of the top, so to speak. I didn't really become comfortable wearing my pre-ostomy clothes until I discovered these. Now I wear everything! Just an FYI, these run small. I'm a women's size 2 or 4 and order a medium (though I would probably wear a small if I weren't stuffing a bag of poop in there ).

Skinny jeans - I wear em! Time will reduce the gas in the bag and you will learn what foods create what kind of output. I use regular underwear, a 9" bag with Velcro close. I fold the bottom up just enough to tuck into my undies and then off I go. It's also a matter of confidence - as time goes on and you feel better you will start to forget about the ostomy (yes it can happen) and the you wNt worry so much if the bag is a little visible. Who is really looking at your belly when you are walking around your everyday life?

I'm at Disney World right now - swimming every day, water slides, roller coasters, whatever. I don't worry if I can't get to a bathroom right away. If I have a little bulge at my belly, so what.

My goodness. . . more very valuable tips. I'm telling you, I don't know what I'd do without this group of experts. As I mentioned to Pluot (Liz) in a pm, it is so funny to me that we are complete strangers and yet we turn to each other with very personal questions about things like undergarments!

So, thanks to your advice, I am more on track with how to proceed. I am in the process of getting samples of various bag types. I'm getting the boy shorts tomorrow morning and will be ordering the American Apparel underwear tomorrow, as well. I am also backing away from more clothes shopping. First things on agenda are 1) appliance; 2) underwear.

In case anyone else is interested in the American Apparel underwear, check out the link Pluot posted above. Some of the colors are currently on sale for $8/ea instead of $20/ea.

In addition to providing tips that are right on target, you have also provided hope for the future. Reading about your med-free health, renewed energy, vacations, jobs, cute clothes, etc. really helps me get my head around this new chapter.

Thank you!

I wear the Ostomy Secrets wrap. The pocket holds the bag nicely and it smooths the bag out so I feel more confident it isn't bulging as it fills. Watch their site for one of their sales if the price bothers you. I wear a two piece and can wear fairly tight fitting pants with confidence, just empty frequently. With time you will be more confident about the fit, etc.
Getting rid of my j-pouch was the best decision I ever made, wish I had it from the very beginning, live and learn.

Thank you for the feedback, Selma. I actually just got one of those wraps and am looking forward to wearing it for the first time tonight. I totally agree about the decision to go perm ileo. Looking back, my husband and I both agree that keeping the ileo instead of going for the j-pouch connection would have saved me from 15 years of discomfort, increasingly potent drugs, lifestyle limitations, emotional stress, who knows what pouchitis for 15 years did to the rest of my body, and etc. etc. You know what I'm talking about!

I also want to share with the group what I finally worked out for my underwear. (OK, what a WEIRD way to start a paragraph in any other universe than ours!) Hee hee! Anyway, I tried Liz's (see above) and, though the basic idea was perfect, that particular style cut right across my stoma. I tried Pluot's (also see above) and they were very pretty and I liked how they went over my stoma, but were so high waisted on me that they went up on my rib cage and were uncomfortable. The moral of the story? Everyone's body is different and stoma placent is key to what style will work, so people should experiment until they find what works for them.

Here's what I use: http://www.hanes.com/clothing/...-control-boxer-ht243. They work well to keep the bag snug to my body and more smooth looking. I buy size medium (am normally size small) and they are quite comfortable. They are more akin to workout apparel than teeny lingerie, but they are lightweight and comfortable and both my husband and I like them. :-) Plus they are on sale for $8.99/pair right now.

I read a tip on the ostomy association website that I also use. I wear two pairs of underwear at a time: one cotton bikini that fits under the bag and is directly on my "private" area and that keeps the bag from sticking to my skin when it's hot out. Then I put the snug boy shorts over (or even just another pair of cotton undies, depending on what I'm wearing) to mask the bag and keep things more contained. I probably wouldn't need to use that system if I could get Coloplast bags to work because one of the reasons I love Coloplast is that they are so comfortable. The problem is that they keep leaking,so I've resorted back to Hollister until I meet with the WOCN.

Thanks again to everyone who has provided suggestions. I will offer whatever I can along the way to others making the transition.