New loop illeostomy sucks!!

@Jaydog posted:

My skin is wrecked.
Any advice on how to handle this better would be greatly appreciated.

Same happened to me.

Clean all around the stoma.

Heavily spread ilex paste all around the stoma.

Apply a Salts Stoma Collar over the stoma and onto the ilex paste.

Now, apply your stoma base/flange over all of the above and affix your bag to it.

Prior to discovering the ilex and the Stoma Collars, the skin all around my stoma was red raw and oozing but within minutes of applying the ilex, the burning and itching sensation was completely alleviated and within2 to 3 days, the skin all around my stoma had completely healed.

I continued to apply the ilex and collars every time I changed my appliance, right upon till takedown.

The Stoma collars help direct output away from the skin and into the colostomy bag.

Hello! yes it was the same for me

What @Former Member said agree 100%

I don't know which appliance you are using but one thing it helped me was a tip from my surgeon, that he said to sprinkle some of the powder that some brands have, i had the stomahesive by convatec, so basically when i showered and everything was clean, the area of the flange that gets the output gets detached in like 24 hours, try to somehow get the powder under there, sometimes i mixed it with paste also, and create a sort of barrier inside the flange on the are where your stoma pours down. This saved me from having to change my whole appliance many times. I would use sometimes the ostomy scissors that are round (carefully) to get it really well under there. I know this may be a bit weird but it worked for me so maybe it helps. I really suffered with the loop.

Good luck!

Do you have an ostomy belt???

The belt helped me a lot but it was a pain. I think there is also this paste that the ostomy companies have - you can ask your surgeon or nurse and see if they know, or call the ostomy company. You might be able to build a damn to help with the leakage. Also, they do have other types of bags for almost concave (if that’s even the right term) loops so that you have a better fit. I’m sorry you’re going through this. It does suck, I know! 

@Bubba1028 posted:

The belt helped me a lot but it was a pain. I think there is also this paste that the ostomy companies have - you can ask your surgeon or nurse and see if they know, or call the ostomy company. You might be able to build a damn to help with the leakage. Also, they do have other types of bags for almost concave (if that’s even the right term) loops so that you have a better fit. I’m sorry you’re going through this. It does suck, I know! 

Yeah, I never tried the belt but the paste did not work for me for some reason. Good idea Bubba

Also Jaydog, sorry for the two months but like you said, its not permanent. Everything will be okay in the long run. At least The New Year will be something to look forward too

oh yeah and try convex! saved my sanity 

Jay dog,

I had the same experience as you, skin wrecked by temporary loop ileostomy. I even developed a yeast infection in the area around the stoma. It all gets better after takedown. Until then, get yourself some ilex paste (which I wish I did) and find a good ileostomy nurse if you can. And count the days to takedown. Because it won't come soon enough, but when it does, all those issues are OVER.

@CTBarrister posted:

Jay dog,

I had the same experience as you, skin wrecked by temporary loop ileostomy. I even developed a yeast infection in the area around the stoma. It all gets better after takedown. Until then, get yourself some ilex paste (which I wish I did) and find a good ileostomy nurse if you can. And count the days to takedown. Because it won't come soon enough, but when it does, all those issues are OVER.

Did you have an ostomy belt in your ostomy days??? I hear it works wonders. 

Don't use the stoma filler paste, especially on broken skin, the filler paste made my situation worse; it contains alcohol.

Filler paste is totally different to the ilex paste; ilex is a barrier paste which protects the skin.

I used a ConvaTec Convex Esteem Synergy mouldable base/flange; no need to cut a hole, just measure stoma with template and choose nearest size.
Once the correct size has been acquired, apply it over the stoma and stoma collar (remember, apply the ilex paste around the stoma first) and attach the bag.

I could easily wear this for up to 3  or 4 days before it started to look grubby (when showering and not changing it, shield it from contact with water; same if bathing, don’t allow it to soak in warm bath water, it will start to detach.

https://www.convatec.com/produ...hesive-skin-barrier#

To keep things sung; I wore Comfizz high waist stoma wear boxer shorts; kinda like cycling shorts but with a much higher waist; designed to flatten and help disguise the colostomy bag under clothing, whilst providing support.

I still wear their conventional waist boxer shorts, even now.

@Former Member posted:

Did you have an ostomy belt in your ostomy days??? I hear it works wonders. 

Never heard of such a thing back then.  They did not exist because if they did Mount Sinai would have had them.  My experience was almost 30 years ago and is firmly in the rear view mirror now.

Yea i was talking about filler paste now the ilex paste. I would agree that you should not use it on broken skin. It is only supposed to be used on good skin. 

Could you call your doc for suggestions? My doc had Ostomy nurses that worked with you and would make suggestions, etc. worth a try? 

@CTBarrister posted:

Never heard of such a thing back then.  They did not exist because if they did Mount Sinai would have had them.  My experience was almost 30 years ago and is firmly in the rear view mirror now.

If you ever need an ostomy again, ostomy belts work wonders. It helps keep the bag on very securely. 

What about using Marathon liquid? 

Any comments. I have 4 tubes I will never use and it's expensive. I'd send it free. 

We would have to see what everyone thinks.... 

Richard 

@Mysticobra posted:

What about using Marathon liquid? 

Any comments. I have 4 tubes I will never use and it's expensive. I'd send it free. 

We would have to see what everyone thinks.... 

Richard 

You are so sweet!

Just wanted to see comments on it. 

I used one tube way back years ago. It worked but wow. It's very.... I don't know how to put it. It works. But I couldn't get it off. Had to let it wear off as I remember. 

Richard.

(it's when I had a loop I used it. Ya... Those things are miserable) 

 Ilex paste just did not work for me. Stoma filler paste caulks up and is very painful to remove from damaged skin during next change. Powders prevented the ring from sticking, and everytime I tried the powder, I regretted it. Maybe I could not apply the powder properly, because the stoma would constantly run and the powder would be messed up by the effluent.

As for the belt, I even had to sleep in an ostomy belt, as my loop was retracted so much that it became very small by the time I had my final surgery. I hated it, but after a month, my brain learned to ignore the discomfort from the belt.

I will try to explain to you how to order a convex wafer for your stoma. Convex waters help if the convex area is around the size of the stoma, not a lot larger than the stoma. I measured the size of the stoma and got the smallest convex wafer that would fit around it, which would push the skin that was closest to the stoma inward -the most damaged skin-  not the skin that is further away. I also got the deep convex wafers, not light convex wafers. Light convex ones do not push the skin backwards much. Hollister wafers melted away very fast for me, the output was too erosive. So, I used hard plastic wafers from Sensura mio line. They are not as comfortable as Hollister wafers, as they are much harder, but that is what I needed to push back the skin around the stoma. Here is a link for the one that helped me the most, the page for the deep convex wafer that does not melt away easily:

https://products.coloplast.us/...-deep-click-barrier/

To find your size, you need to click "please select a variant", then you will see a list of product numbers in the drop down menu. If you click on one of the product numbers, and then it will show the dimensions of the wafer. Such a bad website design.  Anyways, just keep clicking the product numbers until you find the one for your stoma size.  The stoma size is a range from a small and a large number. Choose the wafer that is the smallest that can fit your stoma. For example, of you stoma is of size 20mm, do not get a water with stoma-size range 15-40, although the range includes 20; instead get one with range 10-20. It would then push back the skin closest to the stoma.

Another very important thing for me was to get the hole on the wafer as close as to the stoma, such that there is ZERO gap between the water and the stoma. I mean ZERO. With permanent ileostomy, I was instructed to leave a gap there, which was fine, as it was filled by the ring as it swelled. With the loop, the ring melts away very fast. The wafer has hard plastic, which does not melt as fast as the ring. You need to get as close as you can to the stoma by cutting the hole in exact same shape of the stoma. Not a standard round shape. Not a standard oval shape. But the exact shape of the stoma. I can still remember the shape of mine after cutting a hole of that shape so many times. It takes time and patience, but it works. Once you get the shape right once, you can keep the plastic that is as the back of the wafer that you pull off to reveal the adhesive as a "mold" to cut a similar shaped hole for the next change. Cutting the hole gets much faster once you have such a mold from a previous change. Once you have an exact shaped hole on the wafer, apply the ring to the wafer first, and mold the ring to the exact shape of the hole while it is on the water, then apply the wafer with the ring on it on the stoma. Then, keep pressing on the wafer for a minute, so that it sticks well. In my case, using powders just prevented the ring from sticking, so I only used the protectant wipe before applying the ring. If the ring sticks well, then the skin underneath can heal.

To have almost no gap between the water and the stoma, you need to see the stoma clearly while applying the wafer. I got a small standing vanity mirror  that helped tremendously, as I could not clearly see the gap around the stoma in the bathroom mirror, although I don't need any glasses. Just search "plastic oval vanity mirror tabletop", you will find many. I had measured the height of my bathroom countertop and my stoma before ordering the mirror to make sure I could see the stoma well.

Finally, to see what you are doing while applying the wafer, you need to use a two piece appliance. You cannot see the stoma and the water with a one piece appliance.

Don't forget to eat your marshmallows 20 mins before the change too! My loop stoma would constantly run during changes, which made the chance most difficult.

Memory is coming back, I used paste in the past too, I believe it worked for a while but its definitely messy and hard to get off. I think I stopped using it after a while. Would highly recommend a belt though, especially if you are active. 

I used the nu-hope belts, not the useless thin belts that they give at the hospital. I had two types, the nu-comfort support belt that was more flexible, and thinner, and the nu-form that felt more stiff like a hernia belt. I needed these belts, because my stoma was not level with the skin, it was very retracted into the skin. The shape was very odd too, did not look like anything I saw on the internet. There was no visible hole as it was in the permanent ilesotomy, The hole was somewhere bellow, hidden, shooting directly onto the retracted skin. It looked like they tried to make the smallest hole and pulled it outside as little as they could. It was a monster.

It was so tiny and retracted that I always had to wear the belt tight, even at night, to press the convex wafer for it to push the skin back. I wore the stiff one for an hour after changes to make the ring stick better, and the flexible one at night.

Even with a belt on 24/7, I changed on average every day! Once I changed three times in one night. There were many days I had to change twice. I remember, if it would start hurting within minutes of a new change, then I knew that I failed, and had to change again. Otherwise the skin would break even more. I used so much adhesive remover spray and wipes that I had to get a new prescription for the insurance.

Jaydog, I hope things will not be as bad as it was for me, I read that many people can get 2-3 even 4 days with a loop. If you are changing every single day, and that is what you need to keep your skin from breaking down, you are not alone. Do not count days, you should change as soon as your skin feels uncomfortable. You need to use a lot of adhesive remover spray to prevent your skin from irritation of frequent changes, but a generous amount of the spray can solve that problem. Before you run out of adhesive remover spray, ask your nurses for more. I had to use the adhesive remover wipes after I run out of all the spray, and wipes are harder to work with, but they still prevent irritation. Good luck.

@Former Member posted:

I used the nu-hope belts, not the useless thin belts that they give at the hospital. I had two types, the nu-comfort support belt that was more flexible, and thinner, and the nu-form that felt more stiff like a hernia belt. I needed these belts, because my stoma was not level with the skin, it was very retracted into the skin. The shape was very odd too, did not look like anything I saw on the internet. There was no visible hole as it was in the permanent ilesotomy, The hole was somewhere bellow, hidden, shooting directly onto the retracted skin. It looked like they tried to make the smallest hole and pulled it outside as little as they could. It was a monster.

It was so tiny and retracted that I always had to wear the belt tight, even at night, to press the convex wafer for it to push the skin back. I wore the stiff one for an hour after changes to make the ring stick better, and the flexible one at night.

Even with a belt on 24/7, I changed on average every day! Once I changed three times in one night. There were many days I had to change twice. I remember, if it would start hurting within minutes of a new change, then I knew that I failed, and had to change again. Otherwise the skin would break even more. I used so much adhesive remover spray and wipes that I had to get a new prescription for the insurance.

Jaydog, I hope things will not be as bad as it was for me, I read that many people can get 2-3 even 4 days with a loop. If you are changing every single day, and that is what you need to keep your skin from breaking down, you are not alone. Do not count days, you should change as soon as your skin feels uncomfortable. You need to use a lot of adhesive remover spray to prevent your skin from irritation of frequent changes, but a generous amount of the spray can solve that problem. Before you run out of adhesive remover spray, ask your nurses for more. I had to use the adhesive remover wipes after I run out of all the spray, and wipes are harder to work with, but they still prevent irritation. Good luck.

Omg! You have been through soo much!!! I wonder why stomas retract like that??? I never heard about that until I read a lot of stories on here. 

I guess I was lucky with my loop ileo. I had it for 8 weeks and never had any problems with skin irritation, just very minor and cleared up easily.  I did remember that I had to change my bag more frequently and that it would squirt out more than down and that it was more liquid, which made changing the bag annoying.   My surgeon had warned me that it was more of a pain then the end ileo but it wasn’t too bad.  Sorry you’re having such a hard time with it.  At least it’s for a short time.

@Former Member  It did not retract a lot in time, it was retracted into the skin from the first day. I am a normal weight person, so it cannot be due to reach issues. It looked like it was by design. Maybe they did not want to make a large cut on the intestine and maybe they did not want to cut the mesentery to pull it out a lot, maybe to make their life easier during the final surgery. The surgeon would know why. 

@Former Member posted:

@Former Member  It did not retract a lot in time, it was retracted into the skin from the first day. I am a normal weight person, so it cannot be due to reach issues. It looked like it was by design. Maybe they did not want to make a large cut on the intestine and maybe they did not want to cut the mesentery to pull it out a lot, maybe to make their life easier during the final surgery. The surgeon would know why. 

You have still been through quite a lot, sorry to hear that. I am glad you are doing better now though. 

What is mesentary???

@Former Member

As a j-poucher, I recommend you to google "j-pouch mesentery", in addition to  "mesentery" alone.