Stoma complications - Considering reversal surgery

The area around my stoma is one huge mess and has been for months. I am now living with pee pads (dog training pads), baby diapers, and paper towels to hold in the poop because my stoma area will not hold a bag for any longer than an hour.

This situation has been going on since late June 2019, and I am at my wit's end.

I had an ileostomy last October 2018 due to rectal cancer (stage 1) surgery and had few problems with ostomy bags (Coloplast) until I started developing a hernia directly underneath the stoma area. This is where and when the problems began with fitting and leakage. Coloplast one-piece bags were suiting my body well, I had no leakages for the first 3-4 months, then slowly they kept sliding off and I was unable to wear them due to the vinyl flange edges.

Next, I started experimenting with Convatec (different convex styles 1pc. and 2 pc) and because of their fabric type flange edges, they were working much better, yet slowly they began leaking. The more I tried putting stoma bags on, the more my skin was getting irritated. Long story short, it got to the point where a sort of mucus was forming around the stoma area and NO bags were able to stay in place. I am on blood thinners, so, therefore, I am encountering an increase in blood around the area also.

Despite applying Eakin seals, paste or whatever methods - nothing was working. I was becoming bag-resistant and the pee pad situation began.

A wound/ostomy nurse stepped in whom I had consulted with from my hospital surgery stay. She tried the following:

- Asthma inhaler/puffer (steroid to get the swelling down) and applied it each time I was cleaning up my messes
- A MedLine product (5 mg small powder bottle which contains silver) used to clear up the mucus

My stoma was in horrible shape when I turned up at the Emergency in late June and was admitted to the hospital immediately. Where I live, the actual hospital emergency department itself is useless to go for help folks if you have an ostomy problem, as they appear to only depend on a wound/ostomy nurses for help. But it was on a weekday, and as soon as the ostomy nurse saw how dire my stoma situation was, I was admitted. The area was an angry red, bleeding, and about the circular size of a CD disc., confirming that I would be unable to take care of this on my own. After 4 days, the swelling did go down, yet it was still difficult for any bags to stay on.

After discharge, I received home care, however, only a few community RPN's RNs are trained in the ostomy area. It was difficult seeking out a qualified home wound nurse.

I tried another product for the surrounding stoma area called Karaya 5 powder made by Hollister. This worked better than the Medline product and the inhaler. The Karaya powder soaked up the mucus, the redness began to decrease, but I repeatedly had to keep applying it after each attempt at a bag change or clean up of my feces mess. Patience was a virtue as it took many days to clear up. I was then able to apply a bag, but unfortunately with short success.

This has been a routine over the summer. I have seen the ostomy nurse three different times at the hospital and even she is stumped. I have now decided to go for a reversal.

The cleanup has left me weary, frustrated and unable to leave my house. It's messy and I constantly smell.

I await my final test (CT scan) to see if it's okay to go ahead with a reversal and feel I have no choice. I'm terrified.

Bill posted just today on a new ostomy appliance that might help with your problem.

I have a different problem but some of what I do might help...

I recommend using a non-alcohol skin prep. It both protects the skin and gives the skin a better surface for the appliance's adhesive.

Coloplast makes a good adhesive spray that makes the wafer gasket tackier.

I also put a small bead of stomahesive around the skin around my opening. My stoma has retracted into my abdomen so I have a lot of skin exposure. I then use a Coloplast moldable ring and then finally apply my wafer.

I normally put on the TV and hold that all I tightly as I can against my abdomen for about 15 minutes. It lets body heat and the tacky stuff work better.

I'm sure you've probably tried most of this but just in case it might help...

Dave

Hi sweet,

I assume your ostomy nurse mentioned Nu-Hope Labs to you. If not, they make specialty ostomy products for folks having ostomy barrier problems like you. If not, then go to www.nu-hope.com and download the product guide. Then go to page 64 and check out their non-adhesive barriers. It's basically a large O-ring that's held against your stoma by a belt. Not using an adhesive barrier allows you to treat the wounded skin around your stoma and lets the air get to it to help the skin heal. They make a variety of custom-made products, so I'd give them a call and at least talk to them.

Regards,

Bob

It sounds like the wafer types you used, you had some that worked well while others didn't... I think there are three companies out there that make wafers, you tried two it seems.

I am also on a blood thinner for clots I suffered two years ago and currently only take 10 mg daily. Using the Coloplast half moon adhesive strips were a godsend because I leaked and you know that little mound that grows like a boob out of your stomach where the stoma protrudes? It just made using a wafer hard to stick because some wafers do not bend... But they have accordion styles which were fantastic. So I use those plus the strips and no more leakage. What a confidence builder too.

Now I understand the stoma area is a mess.. I don't have any idea why that is happening. Perhaps keeping as clean as possible with a solution of distilled water?

If your skin is oily that is a big problem. If there is hair where you apply the wafer, it won't stick either. So shaving that area to accommodate the wafer and flange strips might help.

I am sorry I can't be of much help. I don't have these issues. But someone else does on here and will help with more info.

I would also give a deep thought on a reversal and complications from that. 20 people will say it's wonderful. 20 people will say it is awful.. I hope you research it because "what if" that doesn't help you?

Sit tight, someone will offer solid advice. Keep chin up.

Hello sweetemma.
Thank you for sharing your problem with us and I am sorry that you are having so much trouble.
Early on in my stoma experience, my own problems were nowhere near as severe as yours, but I did have problems with the wafers not sticking and therefore leaking and causing the area around the stoma to get sore. I tried most of the paste, rings and things and nothing worked satisfactorily for me.
Having exhausted the ready-made stuff, I decided to have a go at resolving the problem for myself: I made some rectangular baseplates out of flat plastic, (cut from the side of a 5 gallon container) which I shaped to suit my body shape (by heating it over the stove); I punched four holes in the ends to take some hooks (which were made from brass picture hooks); Which in turn, where attached to elasticated belts (borrowed from a Dansac device), which I then sowed to a doctored stoma belt so that it would be comfortable around my back and was adjustable for tension at the stoma site.
Now, Plastic is useless by itself because the mucus makes it slip and slide on the skin. However, I obtained some medical adhesive from Coloplast, which was ideal for keeping it in place and some remover spay for when I wanted to get it off.
I nearly forgot the most important part! I stuck the devices (bags & sleeves) on the plastic baseplates and they stayed on indefinitely, Until, for hygiene reasons they needed replacement.
I know that not everyone has the DIY skills to make stuff for themselves, but this was my solution to this very vexed problem so I thought I would share. If you are interested, there are photos of some of my (better) baseplates on my profile.
If you were closer, I would offer to botch something up for you to try. However, the tricky bit is moulding the plastic to the shape of your body so that it is comfortable at the same time as doing the job.
As with most stoma gadgets, I believe that there should be a niche market for products which are made to measure. I realise that this is uneconomical for the big companies, but there must be knowledgeable individual entrepreneurs out there who would be ideal to address these issues.
Just a thought!
I hope you manage to find a solution before you need to go down the reversal route for, as warrior says, you need to think very carefully about the possible disadvantages of more surgery.
Best wishes
Bill

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Thank you so much for everyone's reply, I really appreciate it.

Dave, I have used a non-alcoholic skin prep and felt it did help. The only adhesive spray I have used was from Hollister and was disappointed as the can only sprays liquid out and made a huge mess around the Convatec flange or tape collar without any stickiness, so I discontinued that. Maybe that was a wrong product to use and may consider the Coloplast product. I also found through trial and error that paste is useless to help flange stick to the skin also. Thanks for your tip.

Bob, I had never heard of Nu-Hope Labs, perhaps because I am in Canada and they are a U.S. company. I took a peek at their catalogue, however, it states that most of their products are "not for use when a peristomal hernia is present", and unfortunately that is what I have and caused all of these problems with ostomy bags from the get-go. They do sell their products in Canada, and while looking for store locators of some of their products, one of the pharmacies in my city carries them. Thanks for the info.

Warrior, The little mound you are talking about, does that look like a wart? If so, I have that too. It just appeared one day, 3/4 inch from my stoma area, and I have the wound nurse and surgeon stumped as to what caused it. Geez, if they don't know? I used the Brava barrier strips often, gave me peace of mind, but after awhile they were beginning to irritate my skin due to changing the bags so often, so I quit using them. Before that, though, they were a godsend. I don't have a hair issue, so no complications about that problem.

I hummed and hawed about an ostomy reversal due to the fact that I had a terrible hospital experience just after my rectal cancer surgery in October of 2018. I caught two stubborn antibiotic-resistant hospital infections (cdiff and ??) and was in the hospital for two months. After discharge, I was not in great shape, lost a huge amount of weight, yet was having great luck with my ostomy Coloplast bags for months. They were lasting 5-7 days, no leakages and no skin issues. I spoke to my surgeon at each follow-up visit stating I was quite content living with an ostomy bag and was aware that a reversal was an option. But, when the hernia issue began, bags were leaking/falling off, my skin became unmanageable and I wasn't able to wear a bag for any length of time....I felt I had no choice. I am petrified to undergo another surgery, and yes, there are the 20 people who have had positive experiences, yet 20 who have not. What to do? This surgery will be less invasive, yet I am hesitant about hospital infections again.

Bill: The plastic baseplates you mentioned, wouldn't they slide off my skin if they were put on over the mess I have. A wonderful and clever idea you created, but perhaps I'm misunderstanding how it would go under my flange and not slide. I bleed profusely after I remove a bag or clean up the stool mess each time, especially living in the humid summer weather in eastern Canada has made things even worse. I have tried the Convatec and Coloplast "skin sheets" that go on your skin underneath the flange to hold it in place, but that has slipped and ended up covering a bit of the stoma hole. I believed the Eakin ring would have adhered to the "skin" better than my own skin, but it seemed to make it worse. The wound nurse explained that this made my skin worse. Who to believe. As mentioned to Warrior, the reversal route is not my preferred option, yet I feel that this skin issue has gone on too long. Living with pee pads and diapers is wearing on my last nerve.

What a quandary to be in. I was told by the community wound nurse to leave the ostomy bags off, for now, to let the skin clear up. I have a CT scan next Thursday where I will have to drink 2 litres of contrast prior to the test as a requirement. This will be a nightmare if I'm unable to wear a stoma bag. Wish me luck

Deb

SweetEmma--So sorry to read this about your trouble having an ileostomy. Was wondering why with rectal cancer the surgeon didn't give you a colostomy instead. I so pray you will be able to reverse the surgery because this is terrible for you!! Best of luck!!!

That wasn't considered, my surgeon only discussed a double loop ileostomy with me.   Thanks so much for thinking about me, I need all the online thoughts I can get.   Just the thought of another surgery scares the bejeezus out of me!

Hello. Sorry to read how bad your skin got. When my skin got raw and bleeding from having to change the wafer constantly, I took a 24-hour break and after cleaning my skin with soapy water and dried, I applied Desitin Maximum Strength. My skin recovered completely and I could use wafers again. But it took a few trials with different brands until I found the right wafer/bag combination for my body. I hope it helps. Desitin is used for diaper rashes, and it's very effective. Good luck!

SweetEmma,

I have not heard of anyone with as difficult time as you have had.

I hope you can decide and have faith in that decision. Prayers for your speedy recovery, either way.

Something certainly has to give!

Puppyluv

Did you apply the Desitin cream directly on the stoma area?  I have zinc diaper rash cream (Zincofax) but always put it around the area that was full of rashes, and never thought of putting it directly on the stoma affected area.  I will try this tonight, thanks for the tip, anything to help.  I've noticed giving it a break from putting bags on, having them leak and taking them off has cleared the skin up a bit, however, I still have that mucus shiny look and blood.

To sweetemma, from warrior.. No, the boob I referred to was not a wart. It's actually a hernia in the making, I believe.. We all have that little bump extending past our normal stomachs. I call it a boob because it protrudes out further than the left side of the stomach.. Not to worry whether boob was thought of as a wart... That's an entirely different topic, I think...

But what I do have is the hernia bump.. or boob... growing. Gotta get a belt... or maybe a bra? :)

Hello sweetemma.
It occurred to me that you might consider the Barnett Continent Intestinal Reservoir (BCIR) as possible solution to the problems you are having.
There is a fairly recent post by warrior on this under the title: ‘Bcir Instead Of J Pouch’??

Just a thought!
Best wishes
Bill

Hi sweet,

I just emailed Nu-Hope to find out why they say not to use their non-adhesive ostomy system when you have a peristomal hernia. The answer isn't obvious to me, so maybe they're putting that statement there to keep those who like to file lawsuits against companies at bay. Someone might think their product had some benefit if they had a hernia, which it does not. But I don't see how it would interfere with one either. I'll let you know what they tell me.

Regards,

Bob

Hi sweet,

Well, Nu-Hope got right back to me via email. My original email message is below, followed by their response.

Let me know how that works out for you.

Regards,

Bob

Message:
Hi Nu-Hope,
I have a friend who is having problems with the skin around her ostomy. It's raw, red, and oozing, and she could greatly benefit from using your Non-Adhesive Ostomy System. I had her look in your catalog, which she did, but she told me she can't use your product because the catalog page says "Important - not for use when a peristomal hernia is present," and she does have a peristomal hernia. I don't understand why someone can't use your Non-Adhesive Ostomy System with a hernia. She understands your system won't help her hernia, but it shouldn't hurt it either, I would think. Her hernia is not getting worse, and she needs to let her skin around her stoma breathe and be treated to get the skin healthy again. So why can she not use your system with a hernia? Is the wording just legal-ese to protect you from people thinking your product can help a hernia?

Thanks,
Bob

Hello Bob,

I would recommend having your friend contact Nu-Hope Laboratories Inc and speak to one of our Ostomy Nurses so they can advise her in regards to our Non-Adhesive System and getting a hernia belt. We have fitted ostomates previously who have both a hernia and are wearing our Non-Adhesive System. It is highly recommended that you speak to a medical professional like one of our ostomy nurses. They can definitely help.

Also, with any of our Non-Adhesive Pouching Systems, if anyone would like to trial those as samples, they do need to speak to one of our ostomy nurses anyway before we are able to send it out as a sample because it is a completely different ostomy product that requires medical assistance while trying it on for the first time.

Please call and ask to speak to Mickey Galindo CWOCN or Linda Zech CWOCN so they can better assist your friend and guide her in the right direction.

Sincerely,

Christine

Promotional Department Rep

Nu-Hope Labs

Mickey Galindo RN CWOCN 800-899-5017 Ext #110

Linda Zech RN CWOCN 800-899-5017 Ext# 102

Bob,

Thanks so much for going out of your way to help me with this situation. I called Linda Zech RN this morning and left a message, just waiting for a callback. A sample would be great if they could provide it, at least to try.

Although I didn't have Desitin on hand, I used the Zincofax last night and this morning and the area has greatly improved.   Not enough to apply a bag but better than other solutions I have tried.   Thanks so much for your suggestions, I will keep you posted.

Please do not get a reversal. I did years ago and it does not last. Doctors today do not want patients to do this. I use Liberator. The people there know a lot and can send samples of what they think you should use. I do understand the "mess" you are in. Aren't we all?

Hi sweet Emma,

As regards to your CT Scan, I was told by my Consultant that under no circumstances anyone with an ostomy should drink the prep required for these scans as it would play havoc with your output possibly causing bad vitamin and mineral deficiency! Your situation might be different from mine but it might be wise to ask the question before drinking the prep! Just a thought, good luck with everything else!

Luckily, before the CT scan, I checked with my surgeon explaining the disaster it would create with drinking contrast prep without an ostomy bag, and she assured me that the test could be done with an IV contrast only. I had the scan yesterday via IV, which still produced plenty of liquid output. I have to flush out the contrast with plenty of liquids over the next 48 hours. Thanks for commenting, I appreciate your thoughts.

Deb

Hey Deb,

It's been a little bit... how are you making out? Is your skin healing? Let us know.

Thanks,

Bob

The skin never ever healed. I had the last of my tests (CT Scan) to see if it was a go-ahead for reversal surgery and at the same time was booked to see my surgeon on October 1st.

I've decided to go ahead with the stoma reversal where she will repair the large parastomal hernia underneath my stoma at the same time. My surgery is booked for October 18th, only a few days away. I'm exhausted and frustrated at this moment having to deal with this mess and frustrated that wound nurses, or community RN's weren't even able to come up with any solution. I eventually heard from Nu Hope just the other day, but it was too late. The Nu Hope RN gave me some tips about my hernia repair post-surgery, so that was helpful, and assured me once the reversal surgery is over, the skin around my stoma should clear up fast due to no feces.

Thanks for everyone's help, and wish me luck on the reversal. I will keep in touch.

Deb

Hedllo Deb. 

Of course we wish you 'luck' for your operation. However, I hope it isn't  just luck that you need but a good surgeon and a positive outcome. 

Best wishes

Bill

We're all pullin' for you, Deb!! Speedy recovery!

Regards

Bob

Thanks for all the prayers, Deb

Partial colostomy reversal question:
Hi. I am new to this site. Curious about what operation you had reversed. I have a partial colostomy, and am thinking about having it reversed. Surgeon said he has to check me out better to see if mine can be reversed, but said it's probably possible. He did say it would be a tough surgery. I would appreciate hearing from anyone who has had a partial colostomy reversal. Thanks.