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JGodfrey
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May 10, 2020 12:08 pm  

My husband had surgery to remove his colon (and some other things) 6 months ago due to appendiceal cancer spread to other areas of the abdomen.  An ileostomy was placed at that time.  Over the past 2 months, a fistula has developed in the portion of external bowel at the ostomy site - not the peristomal skin, but the actual bowel.  It is right about the level of his skin surface and output is constantly burning his skin.  It has been nothing short of a nightmare to manage.  

At this point he has almost as much output through the fistula as he does through the normal orifice of the stoma.  His surgeon said these types of fistulas are pretty rare, and he will likely need surgery to repair this eventually.  But with all this COVID-19 business, they are not performing 'non-essential' procedures.  So we are trying to keep him comfortable, keep the wafer from leaking, and keep his skin from becoming macerated until that point.  Because of its location, it has been impossible to pack anything in that location to prevent output from getting on the skin, because the bowel, and therefore the fistula, moves.  

We've switched to convex wafers, which help some, but do not cause the fistula to remain above the skin surface at all times.  I've been cutting a small divit to allow for the fistula to move up and down when the bowel moves.  We did it without at first, and that was more uncomfortable.  We've been using adhesive spray, which seems to have solved the problem of the wafer leaking, though it takes a small army to get the thing off on change-day.  We've been using Marathon skin protectant, which seems to be working best out of anything we've tried so far, but the skin still begins burning after about 12-24 hours following placement of a new wafer.  

We've also been trying to keep his output from being too thin, which causes more pain.  We haven't found anything though that works every time we use it.  He has Imodium and Lomotil, which both work sometimes.  He also can eat oatmeal or tortilla chips sometimes to thicken the output.  He is having to continue twice daily pain meds and often needs to just sit with an ice pack over his stomal area to keep from being in terrible pain.  It's a miserable feeling, not being able to do more to help him.

He has seen an ostomy nurse, who gave us the suggestions we are now using.  Our surgeon is 4 hours away from us, but has seen pictures, and we have been in touch with his ostomy nurse as well.

Does anyone have any other suggestions on how to save his skin and keep him more comfortable until we can see his surgeon to repair this thing?


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john68
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May 10, 2020 1:07 pm  

Hi JGodfery, firstly Welcome to the forum. I am really sorry to hear of those troubles. Just maybe a couple of things that may help. Removing the wafer do you use removal spray, it will help ease off with less hurt. Leaving the bag of and allowing the skin some air time. This can be done by tucking a carrier bag into the waist band of underwear or shorts. Making sure the skin is really dry before applying a new appliance. There are barrier sheets which can be placed on the skin and the wafer goes on top.please keep in touch as Eric and others will have more suggestions. Keep heart and best wishes 


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VeganOstomy
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May 11, 2020 10:06 am  

Hi @jgodfrey, I truly feel for both you and your husband. Those complications are hard enough to manage, and the delay in getting it treated due to COVID19 doesn't help one bit. 

I echo John's suggestion to leave the appliance off to give the skin some air - I've had to do this a few times throughout the years and it can help relieve some of the burning. 

In addition to hanging some type of catch bag from the waistband, I also suggest using gauze to wrap the stoma as it may drip down on the skin if left totally uncovered. If he can set himself up comfortably somewhere for a few hours at a time between appliance changes, this may give him some relief. 

Thickening output can be a double-edged sword if the pain is an issue, and it sounds like it certainly is. One thing that might help a little is to have your husband eat smaller meals throughout the day, rather than larger meals a few times a day. Sometimes, the amount of output wanting to come out after a large meal can put more stress behind the stoma as it tries to empty the bowel in a shorter period of time - smaller meals should produce a more steady flow that isn't as bulky. 

One more thing that you might want to ask his stoma nurse about is a liquid skin protector like Marathon:

It differs considerably from barrier wipes and may actually protect the skin enough to allow it to heal and not burn. It should be recommended by a nurse as it's not the type of product that you should just grab and use.

Please keep us updated on his status. 


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dogtalkerer
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May 11, 2020 11:51 am  

well depending on where you live, in my case the 5 nearby counties only have 10 or less covid cases.  I would contact your government and complain heavily.   of course if you live in an area with many cases, thats a different story.   but in the US, politics is over running common sense as well as the medical data.    you situation should not be pushed aside if the hospitals are empty as ours are.

good luck.

 


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SqueakyandLiza
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May 11, 2020 12:14 pm  

Hi JGodfrey,

I have had such a similar experience as your husband and I feel like I am finally getting it under some control. 

My ostomy nurse called it a mucus fistula and made it sound like the surgeon did it intentionally??  But it is as you described, coming out the side of the stoma and often below skin level. It has output, though I don’t believe it is nearly the amount as the main stoma opening on the other side of the stoma. 

I have tried several things. Early on, I discovered stoma paste did the best for me, rather than a ring of any kind. I use a generous amount, which as a disclaimer, is not recommended. I put paste all the way around my stoma. My skin doesn’t really come to the edge of the stoma (it is hard to describe, but there is like a little moat around the stoma)but I make sure I have paste all around the stoma so no skin is visible. Then I use a deep convex wafer, because the stoma, and especially the mucus fistula is so recessed. 

My stoma nurse has been stumped a bit. She suggested trying a protective sheet, like John said, under the wafer, and as long as I can get it cut right to be up against the stoma, and get it to adhere properly to my skin, does seem to help a bit. But if stool gets under it from the fistula, then the stool is just trapped and starts to burn. But I have another issue of my skin being so dry that the wafer starts to peel away from the outer skin, and the protective sheet sticks a little better and the wafer sticks to the protective sheet a little better than to my skin. 

I also use Marathon, and find it works wonderfully. Though as I’m sure you know, it is spendy. My insurance doesn’t cover it, but I still happily buy it online. (The best price I’ve found is through Parthenon—$50-60 for a 10 pack) I usually order 2 at a time because they have free shipping in orders over $100. 

I have also started cutting the opening on my wafer a little smaller, making sure, like you, to leave room for the fistula output to not get trapped under the wafer. 

I know things aren’t the same for everyone, but I hope any of these things helps for you and your husband. If you have any questions about any of this, please let me know. Just so you know, I am using Coloplast Sensura Mio 2 piece click system in deep convex and I have found the Coloplast Brava paste works best for me. I use the Hollister wafer extenders. They stick better for me than the coloplast ones, though on my skin nothing sticks for long. I used to get leaks after no more than 2 days. That is improving, but I have recently started changing before I get a leak and that is really helping my skin, which like your husband, was getting very macerated. That was awful and so painful. 

Best wishes to you and especially your hubby. 


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JGodfrey
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May 11, 2020 12:58 pm  

@squeakyandliza, thank you for all of your incredibly helpful information! It’s nice to hear from someone that has had a similar experience. Like you, my husband has the little ‘moat’ around the stoma, which just makes another place for the caustic output to collect 😕.  I have ordered some of the protective barrier sheets, and I’m anxious to see how they work. He does like the marathon, but like you said, man is it expensive!  I’ve been getting it from medical monks, for about $66 x 10. I will check in the Parthenon next time!

 

I hadn’t thought about using paste on top of the marathon, though we did use a little bit yesterday, because we just wanted to try something different. He seemed unusually comfortable this morning, so I’m crossing my fingers. The adhesive spray we’ve been using has really helped to keep the wafer from leaking for longer.

 

He uses Coloplast Sensura Mio light convex. We did get some deep convex samples from Hollister, though they don’t look any deeper than the light convex ones we have.

 

Thank you again for your wealth of advice, and best of luck to you!


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JGodfrey
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May 11, 2020 1:03 pm  

@veganostomy, Thank you so much for your concern and advice! One of our ostomy nurses had suggested using the marathon, so we have been using it for the past few weeks, and it really does seem to help! Though it costs a small fortune!  I can see him cringing when I suggest to him about leaving it off for a few hours, though I agree it would be helpful to let the wound breathe for a while.  He’s supposed to be taking a few days off of work this week, so hopefully I can convince him to try! Thanks again and I will keep you updated.


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VeganOstomy
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May 11, 2020 1:54 pm  
Posted by: @jgodfrey

He’s supposed to be taking a few days off of work this week,

Are you saying he's going through all that and working? Give that man a Warrior Badge! I do hope that even small improvements happen so that he can move in a positive direction - at least until he's able to get the fistula corrected/repaired surgically.  


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SqueakyandLiza
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May 11, 2020 1:58 pm  

@jgodfrey

 Coloplast is great about sending samples. I would encourage you to try their deep convex. It made a noticeable difference over the light convex for me. I think they don’t offer deep convex in every style but I know they do in the Sensura Mio click 2 piece. It’s worth a try. 😀 Hang in there and keep checking back here. Others may have other ideas too. 


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 LK
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May 12, 2020 8:39 am  

JGodfrey...Welcome to VO.  I too wish it was under better conditions for you both! Something caught my eye rereading your posts. Forgive  me if I missed something but I'm going to ask anyways.  You said after 12-24 hours of a pouch change, the burning starts. Sorry, I do not know how to copy and paste yet.  Has the skin become angry due to output contact only or is there an allergy to the wafer your hubby is using? 

Also has a fungus on the skin been ruled out by a Stoma Nurse. I know it is difficult getting to actually see anyone, but the squeaky wheel gets the grease. 

I hope things clear up soon for you. There is a lot of great help here from the others. All the best and stay as strong as you can during such frustrating times! 


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VeganOstomy
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May 12, 2020 10:11 am  
Posted by: @dlkfiretruck

Also has a fungus on the skin been ruled out by a Stoma Nurse.

This is a good point. Between a potential allergy, fungal infection, or irritation caused by output, each will require a different solution but fungal infections will require treatment (which can be done at home). It's best to rule this out with a nurse if at all possible. 


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JGodfrey
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May 14, 2020 5:00 pm  

@dlkfiretruck and @veganostomy, I think the irritation is mainly from output.  We've been using the same Coloplast Sensura Mio wafers since long before this became an issue.  The skin irritation seems to have correlated with increased output from the fistula.  The ostomy nurse did look at the skin as well and did not feel it looked like an allergy or candida issue.  We ran out of marathon a few days ago (waiting for a shipment) and we tried using the brava paste and the adhesive spray like we have been.  The wafer is staying on fine, but my husband said he noticed a difference w/o the marathon - more burning, this time within a few hours after changing the wafer.  Erg!!!

I just checked the mail and we did get the new marathon today.  I also ordered a box of the protective sheets to see if they offer any better/different protection than just the marathon alone.  I hate to use too many things at once, but can you layer the paste over the marathon?  I was thinking he shouldn't use the paste with the protective sheet, especially if he's already put marathon on there.  I am a problem solver and this ordeal is frustrating the heck out of me (us)! 

And yes, he is working a few days a week, though he said the burning is somewhat better when he's up and moving.  When he sits/lies down, the output collects in the little bowl of the convex wafer and since we can't figure out adequate skin coverage/protection with the fistula, it gets on the skin more easily. 

Can the output 'eat' through the wafer or any of the other products if it's constantly in contact with it (from the fistula)?  Is that a thing?  I feel like we're so carefully measuring the wafer to cut it exactly to fit, and then meticulously applying the marathon that it shouldn't happen so quickly.  

Not trying to whine - I so appreciate all the support and advice from you all, and so many others.  My husband (36) wasn't given a high chance of survival after his cancer diagnosis last year, and I thought I would be a 37 year old widow with 2 small kids.  This fistula issue PALES in comparison to not making it out of this alive (his words).


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john68
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May 14, 2020 5:44 pm  

Hi JGodfery, Yep out put will eat through a wafer, what the rings are designed to do is absorb and hold but even they have a limit. How often do you change the appliance. Out put will certainly burn. I would try out samples of different brands of rings to see which works best.


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SqueakyandLiza
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May 15, 2020 1:38 am  

@jgodfrey

Hi again. The way I see it, is the marathon is to help protect the skin. For me, the paste is to help prevent the leaks. I always use the paste. I only use the marathon when my skin is irritated, which has been a little less lately. And I treat the marathon like another layer of skin, meaning the paste goes right over the top of it.

Again, this is just what works for me. Others may not have the same experiences that I do. 

I’m so glad that your husband is still with you! How scary that you could have lost him. You two hang in there. 


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