I just got home from the hospital with my temporary loop ileostomy, surgery was Wednesday, May 23, so I am now 6 days post op. I have some questions

My stoma is basically about 1 inch lower than my belly button – it seems really high up. Where is your stoma located? It seems like a really long way down.

The appliance they sent me home with is a 1-piece – its 12” long. It seems so big and bulky, but I don’t understand how anything shorter is going to drain without getting on me – it basically just reaches down to the toilet when I drain it. Maybe I am not skilled yet in the art of draining properly (I am a woman, FYI), but if it was any shorter I would have to hold on and ensure its away from my body…? Any details about how this works with shorter bags would help me greatly.

When I shower – it gets wet and the backing seems to stay wet forever. I even tried blowing it dry with my hair dryer, but it still seems wet for many hours after I am out of the shower.

Also, this seems to hang in the strangest spot. I am not having a lot of luck tucking it into my pants so I have ended up letting it hang out of my pants and wearing a really long shirt. Is this just because I am sore that its so uncomfortable or feels so strange? I really don’t want to wear some huge underwear – its hot here in Texas and I want to avoid more clothing if possible. Any suggestions?

It seems like some kind of tube that goes around my whole waste / hips would be best to keep the bag from hanging out – but again too many clothes… What are these belts I read about? I have seen a photo of one (not on a model) and I am not getting how it works or keeps things “in”…

What do you do about the seat belt in the car? Does it eventually not hurt or irritate the ileo? The lap part of the belt sits right under the stoma and is not at all comfy. What am I missing here?

As far as volume goes – I think I have to sit back and wait from what I have read, so I won’t ask a lot of questions about that yet

Thanks to all of you who responded to my previous posts. So, short history again just in case you don’t know the story.
• Pouch for 16 years with pouchitis from almost the begining
• 7 years ago developed a recto (pouch) vagina fistula (diagnosed as complex), tried Remicade and fibrin glue (multiple tries with glue). The fistula is “complex” – one opening from the j-pouch, multiple end points including an abscess by the vagina area (painful). Lots of drainage from the vagina area from this.
• Structuring in the small bowel at the opening and above the pouch (defined as inflammation and narrowing of the small intestine).
• Pathology shows UC, even 16 years later
• Prometheus blood test and it says 98% chance Crohn’s disease.
• 32 years old, married 10 years May 31, possibly still want kids
• Always worn out fast, but lately its pretty bad – home from work, dinner and fall asleep – usually before 9 PM

I decided to do the temp ileo instead of the full pouch removal – want to try fixes to the fistulas and see if we can get Crohn’s under control. Based on what many of you have been through maybe I am dreaming about ever getting my j-pouch back and functioning properly, but I feel I have to try. Maybe after getting used to the ileo I won’t want to go back, but right now this isn’t so much fun.

Update: As I wrote this I realized I have a leak - the white, bottom part of the wafer is brown and stinky Its only been 2.5 days with this bag - is this an experience others had? What do you do if you think you might be leaking and aren't sure? Wonder if this was the feeling today after being in the shower of wet-ness

Hang in there, it does get better. I've had my pouch for 4 years and in February had surgery for problems and now I have a temp illeo to let the pouch rest. I know how you're feeling, but after the first few weeks, things got better, and I even went swimming for the first time this weekend.

I'll try to help as best I can. I use a 2 piece convatec appliance. This means the wafer part goes on first and the bag snaps on like tupperware. The bag is long, but I just roll up the bottom in my underwear, and it's been fine. I think my illeo is placed about the same as yours. I put it inside my underwear, I feel more comfortable that it will stay put.

After I shower, and I know this sounds strange, but it works for me. I found that my tape got very wet too and I didn't have the patience to stand there with a hair dryer, so I use a sheet of paper toweling and wrap the bag and leave it there for about 20 mins or so while I'm getting ready for work. The paper towel absorbs the moisture.

I also started wearing the belt and it works great. I couldn't wear it in the very beginning because my abdomen was so sore, but when things healed up, it didn't bother me anymore. I found the seal lasts longer and also when it starts to fill, it doesn't pull as much. So, all in all, for me, it's more comfortable.

I too, had problems with the seat belt in the car, but I had my surgery in the winter so my bubble jacket acted as padding. I have read that some people fold up a towel and use that as padding or maybe a small pillow.

You said you had a leak, do you use any tape over the wafer? I use hyperfix tape, which is a paper type tape to put over the wafer tape. It just gives me a little more protection. I have just started to use pink hyper tape, which is waterproof tape. I only use that on the side that is closest to my incision because that's where the tape seems to lift. I also used it to outline the whole wafer when I went swimming.

If you don't understand any of this, please let me know and I'll try to make it clearer.

I had a couple of leaks in the first two weeks, but since then, I've been ok. One thing you could do is call your ostomy nurse. I didn't have any luck with the home nursing, they only made things worse. I had to make at least 2 trips back to the City to see the ostomy nurse and my surgeon's PA. They looked at everthing and I had to change my appliance and gave me some other pointers.

I am very new at this too, I'm sure the experts will be along soon. They have been an enormous help to me.

Please let me know if I can help, but it does get better. The ostomy has given me back my life, I had problems for over 2 years, so for now until I get reconnected, I am enjoying it.

janna

Hi! I hope you are feeling stronger each day...

As for the bag issues, here are some ideas.

Whether you use a 1 or 2 piece system, put the wafer on at a small angle, with the end of the bag toward your pubic bone. This makes emptying into the toilet possible without getting anything on you. I use 10" bags and with the angle position, I never have any problems.

When you are no longer sore from surgery, tucking the bag will be easier. Wear underwear that comes up a little higher and tuck the bag into the underwear - it gives extra support.

As for drying the bag, try tucking tissues under the bag before you fold it up and tuck it in your underwear. The tissues will absorb the water in short order. I usually fold the bag from the clip up, tucking about 1/3 into my underwear.

The seat belt will eventually get better, especially as you get used to the ostomy and start to forget it is there (yes, it will happen).

Hey Big Bird. I learned from Shell that if you wear the bag at an angle then it is easy to tuck into your underwear and it helps to distribute the load. It works wonders for me. I angle the bag just slightly and I still wear a belt. The belt helps greatly. At first the belt felt like a tourniquet but now I feel like I can't go without it.

I use a bag with a clip, so I use the hollister clips that are curved and you don't feel them up against your skin.

The leaking problems will get less and less with time (as your swelling goes down) Try using eakin seals to fill in any gaps. I also use a convexity bag by hollister. I like it a lot.

Thanks for your responses!

Janna – when you talk about rolling the pouch up and putting in underwear – does the drainage from the stoma then kind of create a “pouch” above the area you have rolled the bag into? Or does it fill up? Does it get kind of sticky to your skin?

Good advice on the paper towel after shower I will try that. Also, I will get one of the belts so I understand how it works – I am now in a convex type appliance, so apparently that works with a belt…

I think for the seat belt I might actually try some bubble wrap – but a towel is a good idea too, trial and error!

I also will get the pink hyper tape, as the tape comes up on mine also. Does it stay on all the time or only when your doing something like swimming?

Did you not have luck with the home nursing because they weren’t special wound type nurses? I had my first visit today, it was actually pretty good.

JillM – thanks again for your advice and talking to me pre-surgery!

JillM and Alexandra - I will try the angle and maybe I can try shorter bags.

Hi Big Bird,

Sounds like you really have a good handle on this.

You have had some excellent advice. I'd just like to add that if you are experiencing a lot of sweating then try spraying some regular antiperpirant deoderant on the area of skin under under where the bag itself sits (not under the wafer) or wear a cotton baby bib under the bag to help keep your skin dry. I use a non-greasy barrier called Chiron cream under the wafer itself. It has the same ingredient as most antiperpirants (Aluminium Chlorhydrate 2%) so really helps to keep the peristomal area dry and free of that dreaded sweat rash in hot weather. The only problem is that it's not available in the States but Rae from this site has managed to find a non-greasy perfume-free roll-on deoderant on your side of the Pond which she says works well too. Can't remember what it's called but she says it's in stores like Wallgreens and Wallmart so you should be able to find it easily enough.

I wear close fitting lycra underwear to keep my bag in place. I also wear Convatec's moldable convex wafers and this really helps to keep everything secure. And as Alexandra mentioned I wear the larger bags at an angle (so the the velcro fastener sits in the crease of my left leg/groin (Wee Willie is on the right). This not only gives me more time between emptying (great at night) but also spreads the load evenly and stops me from feeling lopsided when it starts to fill up. If you are petite like Jill then the smaller bags work well too.

Good luck and take care

Shell

Hey BigBird -- I've had my stoma, Mr. Stoma as I refer to it, since March of this year. I use the Convatec two-piece (tupperware-like) closed end system. I'm very tiny (about 105 lbs) and very body conscious, so I like the closed-end system. I use a disposable liner in the pouch and probably flush the liners about 8-10 times per day. I also used to have a j-pouch for 17 years and it failed.

Wear the bag at an angle and tuck it into your panties. It doesn't matter what kind of panties you wear as long as there is a little bit of fabric in front. I also don't let my bag get more than about 1/3 full so it never shows much. My tummy is so flat I think it would be really noticeable. My hubby says you can't see it but I can feel it. The closed-end Convatec bags have a fabric type covering on them so they are not as sweaty as the plastic systems.

When I shower I take off the bag and let water rinse off the wafer. The tape gets wet but I just pat dry with toilet paper or tissue and towel. I then put on a fresh bag and liner and off we go. I can say "we" now bcause I think "Mr. Stoma" has a mind of its own. I have trouble with mine splitting at/on me.

I too had trouble with the seatbelt but now I can wear the lap across Mr. Stoma without a problem. I can even lay on my tummy in bed or on a lawn chair, just not on the hard floor. I'm very active so I like having a system that will hold up to physical activities like gardening and swimming. The biggest problem for me is I have such darn sensitive skin that I get itchy and rashy really easily. I also found that I need to wear a solid pouch because I don't like looking at Mr. Stoma or the output. That's another great thing about the disposal liners. You just pull out the liner and drop it into the toilet. Then I wipe off Mr. Stoma and stap on a new bag w/liner. I feel much cleaner with this system.

Good luck with your stoma.

CmkBirdLady
aka Catherine
Issaquah, WA

cmkbirdlady - wow, didn't know there were liners for the closed systems like that. How messy is it when you change the liner out? Does that get expensive, you said 8-10 times per day, seems like a lot?

Glad to hear you could wear a seat belt and the other things you can now do! This is good to know about for me.

Thanks!

FYI, I am 5 ft 7 in and about 145-150 lbs, so not small, basically around recomended.

The liners are called Colo-Majic and are pretty inexpensive compared to the pouches. Colo-Majic has a website (http://www.colostomymajic.com/product.html) and I order mine through the local place where I get my ostomy supplies.

I used to go between 8 up to 15 times a day when I had my j-pouch. So, it doesn't seem any different to me. I'm just glad not to be in constant pain and be able to eat again.

I believe its less messy than the drainable pouches with the clips because you always have a clean system on and can wipe off the little stoma. I feel cleaner with the system I use. I really did not like the drainable pouches. My stoma site itched and burned too much and it was difficult to clean the end of the bag.

After some adjustment, its easy to use the liner, closed-pouch system. I remove the bag, place folded toilet tissue over the stoma, get a new pouch, wipe the stoma clean and snap on the bag. I start the day with about 10 pouches ready with the liners in my bathroom and extras in my purse. This way whenever I need to go, I've got my pouches ready to snap on.

I believe the most important part of living with the ostomy is figuring out which system works the best for you and your stoma and forge ahead.

cmkbirdlady
aka Catherine