Hey Everyone,

Well I finally am ready to do it. I have scheduled surgery on June 19th(the day before my birthday) for removal of the pouch. The only question I really have right now is about the placement of the stoma.

The perfect place on my right side is not going to work because that is where they put the temp years ago and it is very concave and has lots of adhesions now. The doctor and ostomy nurse suggested higher but that would be right at the waist band of my clothing. Is there a reason they cannot place it on the left side in the same area as before? Any suggestions would be greatly appreciated.

Janita

hi janita,
mine is on the left. i had the same issues...my ostomy nurse marked me on my left AND on my right...he said he would leave it up to the surgeon to decide which was better but he told the surgeon my preference was for the left side. i have no idea what would stop the surgeon from putting it on the left- in my case, it works great there. my ostomy nurse was very thorough when he examined me and decided where to mark me...i had no choice about how far up or down to put it because i really had only one good spot on each side. see, your oblique ab muscle supports the stoma (they cut through the middle of it and pull the intestine out there) and i have naturally narrow ab muscles and i'm quite petite...make sure you get an ostomy nurse that knows what they are doing to mark it. if you are lucky and have a choice about where it goes (other than left and right) i would put it as low as possible...that way you can still wear pants over it, even if they are a little high waisted...and even tuck it into your underwear so the bag is supported and flattened out a bit. the ostomy nurse also tries to find the spot where the wafer will stick nicely- so not only smooth, but a wide, flat surface....mine always lifts off on the one side where my little beer belly curves lol.but like i said, i had no choice other than left or right for mine.
what do you mean by adhesions? i had scarring and it dipped in -concave- on my right side from the temp too and the nurse said it would still be okay there and they could fix it up a bit in surgery. actually, my midline scar got revised (they cut out some scar tissue and redid it) so it looks like a nice neat line now.

i really think you are doing the right thing..i've been reading your posts all along and we have similar situations..and i don't regret my surgery at all...i don't always love having a stoma ...especially after developing skin ulcers around it now...but it is always better than being sick! and i have been getting out of the house lots! i actually went for a nice long walk yesterday in the evening cuz it was nice and sunny here

good luck and happy early birthday! soon you will be eating lots and feeling more energy and that is the best birthday gift you could give yourself, i think

Hey Niki,

Thanks for the input. I guess I meant scar tissue instead of adhesions where the temp ostomy was. There is no way it will lay flat there and the surgeon was the one whom suggested we go above that. If I go above that it is right where the waist band of my pants are so I don't think that would be very comfortable. The ostomy nurse marked me on the left and right and said she would call the doctor to find out if there is a reason they cannot put the stoma on the left. I think that would be perfect. Unfortunately we cannot go to low because I am overweight and it does not lie as flat as a little higher up. On the left it is about 2 1/2" over and down from belly button. I have a sample from Hollister and I think I may try to put it on when I get dressed just to see how it feels on both sides.

I am sorry to hear you have been having the same issues as me but I am glad to know others have been through this and are now doing really well. It definitely gives me hope that my life will get better. I also went to a Naturopath yesterday and we discussed what I should eat before and after surgery to help the healing process (lots of soft proteins and probiotics). I am just really anxious to get this done now. How long have you had your ostomy now? How bad was the surgery and the recovery? Are you now able to work or do anything else very physical? Have you noticed anything in particular you cannot eat yet? What kind of ostomy system do you use?

Thanks again and I hope you continue to do well with your ostomy.

Janita

hi janita...i will try to answer all your q's the best i can...this will be a long message lol...i'm fairly new to this cuz i just had my surgery on april 1st...but i did have my temp one back in 2003 for well over a year.....

and ya my stoma is exactly where my waistband is on my mid-rise pants ...and that was all i ever owned and ever wore. and you are right, it is annoying- but not impossible to wear pieces from my current wardrobe...and i've been shopping already for new pieces! i even drove myself to the mall and shopped for hours (haven't done that in almost 2 years!!) i bought lots of summer dresses that are nice and loose around the bag but still fitted in the waist and chest- and i tuck the bag into my udnerwear or wear a tube top or bella band over the bag so it doesn't flop around under there....and i bought some really cute short skirts that flare out a bit at american eagle...and even some high waisted, stretchy yoga pants.....i am kinda a clothes junkee lol..i hate not being able to wear anything anymore ...plus i gained like 13 lbs already! :O but i have no problem wearing my old pants that are a)soft! and stretchy, to allow room for the bag to fill and b) have drawstring waists! like my sweats...they have just a drawstring with no button fly and i can easily loosen up the waist so it does not hurt the stoma...having the material sit on top of the stoma doesn't bother me now that the stitches are healed up...and that is even with ulcers under the wafer...and even a little pressure doesn't hurt it or stop anything from coming out. unfortunately, i have to shop for some new jeans...i have to give mine away because the only way i can wear them is if i a) get a phoenix belt (holds the bag horizonatal) and wear the really low waisted jeans so the waistband is under the stoma and not cutting off the bag... or b)undo the button of the fly and wear a "bella band" (maternity item that looks like the bottom of a tank top and hides the open fly/holds up pants a bit).....but i don't have a phoenix belt and i'm not sure i could wear it sideways- this is something i want to try soon. aaaand i don't like having the fly undone cuz the jeans are still very rigid and i feel like the bag has limited room to grow...so i have to empty way more. and the thing is, i empty A LOT...but there is no pain with it and i think it will improve over time.

and you wanted to know about what foods i can eat- well guess what..i'm so excited cuz yesterday i had like half a bag of microwavable popcorn with absolutely zero issues it was stupid to have so much at once..i got carried away cuz i haven't tried it in years...like 4 or 5 years. soooo yummy! and i eat blueberries, strawberries, and apples (peeled) every day for the last few weeks and chocolate covered almonds...i tried those back in may with no issues. and yogurt covered raisins....and i eat lots of boiled veggies like green beans and potatoes (peeled)...and cooked carrots...i think i could eat anything now really. oh, i had a salad and manicotti at a restaurant the other day! the only thing is that if i eat lots of refined sugar, like cake or something, i have my bag fill up a lot and it is like water and i hate that...but it is okay in moderation. i have no problem with soda pop... or spices.. i eat steak, burgers, turkey hot dogs, chicken, or salmon every day! i don't really have problems with gas or noise like some people do. i haven't experimented with caffeine or alcohol though..kinda scared of that... my nurses really pushed me to eat extra protein, and when my wounds opened up cuz of the infection, they said that extra vitamin C would help healing. i also take a multivitamin that is chewable (called Forvia, and you can get it online). I am told that my wounds are healing great and very quickly now. I don't bother with probiotics because they cause me a lot of gas and i hate when the bag blows up like a balloon (my bags don't have filters).

i never tried hollister...the ostomy system i had in the hospital was coloplast...i had one piece clear bags, then two piece opaque bags that had velcro closures. they were okay..i used eakin seals with them and i only had one leak. and it was not a bad leak. i haven't had any bad leaks since coming home *touch wood* just one time stool got under the wafer a bit and caused a little burn but it only hurt when i changed the wafer and poked at it. i didn't really do anything to heal it but i tried putting this stuff called sweeney cream on it once. it seems to help but it isn't easy to get the wafer to stick with it. anyways..this is a lot of possibly unnecessary info cuz you may not have leaks now that i am a at home i use convatec bags that are two piece. i really love them....well as much as you can love an ostomy bag lol. they have moldable wafers ... and im sure you know that the stoma is big at first cuz it is swollen and it shrinks for the first month or so...well, with the moldable wafer i never worried about it changing size each time i changed my bag...no measuring, or cutting..it has a small pre-cut hole, and you just push it bigger with your thumbs and place it over the stoma and then it retracts till it hits the stoma- know what i mean? fits around the stoma nice and tight without cutting into it. i will never use anything else. and it will conform to every contour of the skin too...so less likely to get leaks. i really like it. and i have a clip closure instead of velcro. i did like the velcro coloplast bags but the convatec ones with velcro ...eww...i don't get how they would work without getting poop on the velcro. it didn't look very dependable either. so im stuck with clips. but it really is no big deal. i use an "Adapt ring" under the wafer but no glues or paste besides that. at first, i used "durahesive" wafers but now i switched to "Stomahesive" because durahesive is stronger glue and i actually had a hard time getting it off without lots of pain and lots of glue remover. i only got one extra day of wear time out of those anyways, cuz the stool eats away at the wafer eventually no matter how well the wafer sticks to your skin.....my current system lasts 5-7 days. i can tell when i need to change cuz it actually starts to lift off on the edge on one side. takes about 20 minutes to change it...i'm sure i will get faster when my skin ulcer heals. i only use a tiny bit of glue remover (cuz it hurts to peel it off on the side with the ulcer) but maybe one day i won't even need that...that stuff has alcohol that can irritate the skin and mine is always light pink but getting better now. you might have to try a few different brands cuz some people have allergic reactions to certain adhesives. my advice is to try the most simple system first and then add one thing at a time- the less stuff you have to apply the easier it is to change it and faster too...less stuff to buy and less stuff to worry about carrying with you or changing in a public washroom...less is more! but don't worry, there are glues and cements and rings and lots of different styles/brands of wafers to try. wearing an ostomy belt is helpful to some people. i have one but haven't put it on yet. experimenting to find what works is the hardest part, and then you'll feel so much better once you get a system that is right for you. everyone is different.

whew this is long lol...

the surgery and recovery was just as bad as my jpouch surgery...but it's already a very faded memory and i would do it again because now i feel great. i have felt this good since about mid-may...i would have been healed sooner but i had bad luck and my wounds got infected so i had a minor set back...i still see a nurse everyday for packing. but it doesn't hurt now. i also had some weird fever while in hospital (i was there just over a week) and if it had not been for that, i would have been way more comfortable and sent home a couple days sooner. oh, i also can take a huge amount of narcotics before i feel them so i needed lots and i don't think i ever got enough..it seemed to scare this one nurse that i was getting so much hydromorphone but my doctor didn't seem concerned ( i had been on oxycodone for my jpouch for 2 years before this surgery so i got used to the drugs...). i think if i had gotten surgery sooner i would have been better off- before my drug dependancy developed and before i had so many abcesses inside (which probably explain my fever and infections).

i'm sure you will have it easier...mostly i just was very sore but if i just laid there and had my meds it was very bearable. thank god for my mom who took care of me and brought my meals to me. i would advise you to either get someone to nurse you like i had for the first few weeks at home, or prepare meals ahead of time that are easy to reheat...i also had to sleep in a different room because my usual bed was way too high up and soft to get in and out with my stomach wound and sore muscles. and i slept A LOT lol. watched lots of tv.

i could almost work now..i feel pretty good but i am still taking pain killers-i don't think i really would need them if i didn't have the peristomal pyoderma gangrenosum (skin ulcer)...i just get tired a little easier and i worry about sweating off/ripping off the wafer or getting a hernia so it's a good excuse to be lazy for now lol...i am going back to school in september or i would be looking for an easy job. i think just standing around for 8 hours a day would be tiring but i could do it. i have gone on walks that were about a half hour long...and i have walked around at the mall for an hour or two at a time. most of the time when i am sitting around at home i feel perfectly normal- healthy- and i forgot how that feels. it is so awesome to have energy and want to do things. i get more done on my to-do list in a day than i used to get done in a week or two

okay so i wrote a novel..but i would have liked to hear this stuff before my surgery. hope it was helpful in some way.

Janita,

Just want to wish you luck on your surgery.

I never was able to try the J-pouch, and I thought the Ileostomy would be the end of the world. After adjusting to it, It isn't that bad.

Good Luck.

Andy

Andy, thanks for the well wishes. I am sure I will get used to the ostomy quickly.

Niki, Thanks so much for the input. It really helps to put my mind at ease. I am going to push for the placement on the left because I think it would be much easier to deal with. I cannot wait to start eating salads, more fruit and other healthier stuff, but POPCORN I don't know about that. It really hurt me before but I may get brave enough one day. I have been working with a Naturopath to build up my immune system some before surgery but since we really did not have much time she wants me to focus on lots of protein before and after surgery to help with healing. Then about 2-3 weeks after surgery we will start adding other healthy stuff in to build up my energy, strength and overall system.

I have heard alot of good stuff about the Convatec system and will be calling them today to ask for samples to be sent. I will also call Coloplast but I really like the sound of the moldable wafer and the Eakin seal. Lots of people seem to really like these items.

The only meds I am on right now are Vancomyocin and Cipro so my main concern is getting an infection. But I have never taken any pain meds and (thank goodness)I have not taken any steroids for about a month so hopefully those will not be an issue. They almost killed me in my original surgery.

I am planning on returning to work 6 weeks after surgery. I am a physical therapist asst in Home Health and I have already talked with my supervisor. They said they will give me easy patients with no lifting and low risk of falls until I feel ready to take on more. They have been really great through all of this. I have already been off work for almost 3 months and now have almost 2 months to go. They said not to worry I would definitely have a job when I am ready to return.

Again, thanks for all the info and well wishes. I cannot wait for the surgery to be done but everytime I have a BM now I think how weird it will be in a couple of weeks to know I will never have another one in the "normal" way. Guess just one more idea to get used to.

I am so glad to hear you and so many others whom have made to decision for permanent ostomies are doing so well and are willing to share your stories and especially the wonderful advice you all give. I would have had no idea where to start without all of you.

Thanks again,
Janita