Oh!  One other thing.  She says that all of a sudden, now when she sits on the toilet she has a pressure pain in her bottom.  Has anyone else ever had this?  Her would isn't completely closed yet and she is scared that maybe she has gotten another infection.  I looked at it and it is so so small I can't imagine there is an infection.  Plus the pain and pressure are only when she is going to the bathroom.  Could this be phantom rectum?  

Could the current pouch that she’s using be aggravating the psoriasis? I mean like the adhesive? Has she tried different pouches or skin barrier wipes to protect the skin? Cavilon is a good barrier wipe.  I’m wondering could it be an allergic reaction to something she’s using? Rings? Adhesive remover wipes etc? Or could something she’s using be causing the psoriasis to act up in that area? 
I never had psoriasis but I did clear up a rash around my peristomal area using domboro soaks from my local pharmacy. It’s over the counter. I put it in the areas irritated.? It is  a box of little packets of this powder that you mix with water. I took the bag off and wet paper towels or soft gauze sponges with it and let it sit in the area for about 15 minutes a day. Just kind of wrapped them around the stoma and in all the irritated areas and laid in my bed with a towel under me and with extra paper towels in case the stoma started acting up. A stoma nurse was the one who told me to buy this domboro soaks by the way.  Has she seen a stoma nurse? I would highly suggest seeing one. 
they have so many new medications these days and I’m wondering do they have a shot now for psoriasis? 

By any chance is her surgeon at the Cleveland clinic? 

Hi Momof2, That’s great to hear the wound is healing. Good sign of general health as well. I really get what you are saying about moving the stoma. I think it’s better to treat it than another surgery. This is something that was posted by Tony H. He had used Head and shoulders shampoo around the stoma. I have done this myself. Maybe try Eric’s tip about leaving the skin bare after treating to breath. You both have come a long way and done so well it’s part of a rough journey which Will soon level out 👍

@john68 good idea about the head and shoulders.

@chelly I will see if I can get some of that stuff.  We are so desperate with her psoriasis we try any and everything.

It is definitely psoriasis.  She has had it for years and she hasn't changed her ostomy products.  She is using the same ones she used all year with the temporary stoma so I "think" it is not a reaction but stranger things have happened.  

She has seen a stoma nurse locally and she is stumped.  She gave her a couple of different barriers and flanges to use.  Ones that are more for sensitive skin and nothing is helping.  

You are absolutely correct in that the adhesives are aggravating the psoriasis as skin trauma is very bad for psoriasis.  Also, the moist occluded environment is equally as bad and the leaking stool is just awful all around.  

YES!  Her surgeon is at Cleveland Clinic.  So is her GI.  We are going to go there soon for a team meeting.

@john68  Thanks for the advice.  She has tried a few times letting the skin breathe but you know 20 somethings….people to see, things to do!  She never really wants to lay there for very long.  

She uses T Gel shampoo as her psoriasis is next level in her scalp.  Honestly to look at her scalp, you wouldn't even be able to tell there is skin there.  It looks like something out of an alien movie.  But I wonder if the shampoo around the stoma might help calm that skin even the slightest. Thanks for the suggestion.  I will also have her try Head and Shoulders.  I am willing to bet there is more going on here than just psoriasis, like maybe fungal or allergy or something.  So Head and Shoulders would definitely help fungus.   

She has used a lot of the regular psoriasis biologics but they were more for her Crohns and the did nothing for her skin.  As a matter of fact the anti tnf's made it worse.  Rinvoq worked like magic but it isn't approved for psoriasis and it is a pretty hard core drug and gave her blood clots so not likely they will opt for that.  

I think the next drug up will be Stelara or Skyrizi.  They are doing an ileoscopy to see if her Crohn's is well controlled in her TI because if it isn't then the skyrizi or Stelara dose would be higher than the psoriasis dose.  It just stinks that she had the total colectomy and didn't even get 6 months off drugs.  

We REALLY don't want to mess with the stoma.  It is so perfect the way it is.  I just really wonder how you treat psoriasis under an adhesive flange like this and have the flange actually stick.  Would also be nice if she didn't have to do a bag change daily.

@momof2 that is where my surgeon is as well but I’m lucky to be local in the Cleveland area. Great hospital for ostomies. The stoma nurses are the best! Dr. Steele did both my Ostomy surgeries. 
Was she able to send a picture of her stoma area to her surgeon? They had me do that before as well as the stoma nurses. If it’s fungal maybe the surgeon can prescribe some nystatin powder. I would try to get there as soon as you can and let those stoma nurses at ccf decide what it actually is around the stoma area. 
I’ve found that sometimes these outside doctors do not know what’s going on. 
it sounds so miserable for her. The remedy John gave you with the head and shoulders you just wash the area and rinse while changing the bag. I’ve tried it before. 
I will bet something she’s using is aggravating it. I wonder should she do a process of illumination with the products to see what could be aggravating it. I have found using less product for me is best since I have so many sensitivities. I’ve had to narrow down what I can use without irritation. I found that all the things they suggested at the start were actually unneeded for me. 
also maybe call the stoma nurse line and talk with them and see if you can send a picture of the area. 
I was thinking that they might have a steroid solution that’s not oily for around her stoma area for psoriasis. I would call your local pharmacy to see if there is a steroid in the market that is non oily that could be applied.  
what John mentioned about letting the area sit and air out a bit sounds like a good idea as well. 
just a thought… has she tried stoma powder? 

anyhow I am wishing her all the best in getting some healing to her psoriasis as we all know here how miserable rashes and irritations can become in our stoma areas. I recently developed eczema but thankfully not yet in my stoma area. 

my curiosity led me to a google search. I found this that may help. 

https://dermnetnz.org/topics/skin-problems-from-stomas

@chelly wow!  You had the chief of all CRS do your operations!  My daughter has Dr. Holubar and we love him.  He had to go out for a while when she was still there with the indwelling wound vac and he had someone cover for him and we loved that surgeon as well.  Not only is the care top notch but they are also very kind and accommodating.  

We have also found that it helps to be under their care simply because of the volume of cases they handle, they have seen it all.  She had two complications after her surgery. One happens in only 5% of cases and the other only 1% of cases.  No one locally would take her so we had to stay in Cleveland for 6 weeks post op. Same with this psoriasis, they have tried to handle it locally but they just have never seen this. 

We sent pics to Cleveland and that’s when they said come here and see “the team”.   They coordinated all 4 disciplines on the same day, on a day she requested and pretty fast. She is going 12/4. She will have an ileoscopy first thing a.m. then see GI, derm, stoma and surgeon.  I think they are concerned that if psoriasis is flaring then her Crohn’s could be also but she feels great otherwise. 

There is a steroid foam that doesn’t leave the skin greasy but our insurance doesn’t cover it.  This is another reason why we like Cleveland.  They get things approved easier and have access to compassionate use. Back when she was at the end of all the drugs for her Crohn’s they were able to get her a one month supply of Rinvoq while they worked it through insurance.  

The thing with the steroids is, it has to be applied daily so that’s a lot of bag changes so we need insurance to cover that. Also steroids can only be applied two weeks on two weeks off because they thin the skin.  She lasts about 3 days off the steroids and then she has a rebound reaction where it comes back worse than ever.   I am sure Cleveland derm will have a suggestion of sorts. We just have to get there. 

Her current derm has her crushing prednisone tablets and spreading that powder during bag changes. She also uses stoma powder and you are right less is always more with her.  

I am also sure the stoma team will have a good suggestion about what products to use. We love them there. We have sent pics but they wont work with her virtually.  It has been difficult to find a stoma nurse locally. We looked at the directory and called but almost all of them work in hospitals and only take the CRS patients from that hospital. We have found a few with home health agencies but the agencies are under staffed and not taking new patients. The only WOC nurse she has been able to see is the one from her pediatric hospital because her old GI called in a favor.  

it is going to be so expensive to fly during holiday time and to miss work etc but we really need to get this settled and since we are trying to avoid another a temporary relocation of the stoma, we really need to go back to her surgeon. 

@momof2 Your daughter is certainly building up a war chest of experience, eh?!

Skin issues, especially when it affects the adhesion of the wafer, can be incredibly frustrating.

I've recently had skin issues with the tape border of my Hollister 1pc appliance; the same appliances I've used with rock-solid reliability for 7+ days at a time for a number of years.

In my case, only the tape portion irritates my skin to the point where a single day causes my skin to weep. It looks like eczema, but my approach to treating it has been the same. 

My solution has been to cut out the tape border and let the hydrocolloid do the sticking, which means any irritated skin is now completely exposed to air all the time.

Of course, I'm lucky that this only impacts the tape border portion and not the entire wafer, as it sounds like your daughter is experiencing.

One option that I have NOT tried, but it's always up for consideration, is a non-adhesive appliance. This can be used at least until the skin has cleared up. In your daughter's case, it may even allow for the use of those topical meds without worry about it affecting any adhesives.

Nu-Hope carries a non-adhesive system, but I'm sure there may be other brands that have them available.

I would honestly hate to have her go through another surgery, especially since a new stoma location may not prevent the same from happening again.

And yes, if she can expose her skin for a while, it would benefit her. As of late, I find this to be most convenient when everyone's gone to bed. I can sit in front of the TV with a trash bag hanging off my waist to collect any falling output, and some gauze wrapped around the stoma (not on the skin). This is another "whatever works" scenario, for sure!

@momof2 yes the head of the department he is and I absolutely love his bedside manner and his work. Your daughter is in the best hands with them. I feel so bad that she is going through all of this. Yep, get to Cleveland as soon as you are able and the stoma nurses are great about loading you up with the extra supplies you may need when your going thru something of this nature if they have them. I really hope this gets cleared up for her. Insurance is horrible!! Is there a way to get this foam steroid prior authorized with the insurance? The doctor would have to put in the prior auth and using the reason that she needs this type due to her bag will not stick with creams. They should then give it to her. It takes time but in this case the doc can say it’s emergent and maybe she can get it sooner.

@veganostomy The Nu Hope non adhesive sounds super promising.  Sounds like a great option for applying topicals. I read it is reusable so might actually be usable after she heals the skin for when she runs through her bags too fast and needs an emergency option.  We are definitely going to check into this. Thanks for the suggestion.

I saw a few other gadgets mentioned recently that we are also going to check out.   

As it turns out, dermatology did not have any openings for when we are there so the trip feels a little pointless except she really needs to see a WOC Nurse and she will be getting her ileoscopy and seeing her surgeon.  He mentioned he is concerned about the skin around the stoma breaking down and the bleeding that we are seeing there.  

We are still hoping that term some how comes through and sees her next Monday or even after we get there and the surgeon and GI see her maybe they can plead her case and we can see dermatologist the next day.

Awe thats unfortunate that dermatology does not have anything while you are there but as you said maybe between the stoma nurses and your surgeon they can somehow get her seen. They can work magic that way between each other sometimes. 

When I first had my eczema I went to the dermatology desk myself showing the girls my hands and pleading if they could get me in while I was down there instead of waiting 2 more months and lo.and behold the head of the derm department offered to see me. I got very, very lucky. I had no clue at that time what was wrong with my skin but that day they did the biopsy and it was eczema like they thought. 

So yes I think maybe your surgeons office may try to get a hold of the department and get her squeezed in. 

@momof2 please do come back to give us an update. Prayer of healing and comfort to your daughter. Have a safe trip to the hospital. Thinking of her

Hi guys!  Sorry it took me so long to come back and update but I really didn't have a lot of info and the holidays hit and…and…and.  

So we travelled to Cleveland and made the rounds.  The great news is her disease has remained quiet in her small bowel!  Bad news is her psoriasis literally made the dermatologist wince.  She said it was quite possibly the worst case she has ever seen.  Her GI and surgeon were also pretty impressed with how bad it looked and the stoma team had no advice other than to increase the number of bags and flanges that they ordered for her.  

The derm gave her 15-20 steroid shots right into the skin around her stoma.  The area at this point was about 10 inches around.  The dermatologist was also able to get a foam approved on appeal.  She has been using the foam and it seems to dry pretty well.  It still interferes with flange adherence but only a little.  It definitely is helping the weeping and open sore skin but she is still having to tape all around the flange three or four strips worth to get to healthy skin.  

The dermatologist also suggested she try Stelara.  It stinks that she had the surgery and still has to be on biologics but ce la vie!  She had one dose so far and nothing but we hear Stelara can take a while.  

They all had her sign permission for them to use her photos for lectures, training, case studies etc so she is pretty jazzed at being the famous 24yo female with history of IBD post total proctocolectomy presenting with severe psoriasis.  She laughs and says she will get writers cramp signing autographs.  

@momof2  ... I'm so sorry I missed all of this! Your Daughter is proving to be a very resilient young Lady!! And You, MOM of two, you are still doing an incredible job keeping up on everything concerning her medically & helping her through these trials & journeys.  She is lucky to have you!! 

I have never had Psoriases but I have had a nasty raw & bleeding output burn that happened way too quickly one night beneath my wafer.  That burn was so nasty I cried over it. Cleaning it was near impossible but I managed!! 

Once I had treated the area all over with a light amount of my eczema cream, Betaderm Cream 0.1% Betamethasone Valerate 0.1%,  I have no clue if they are the same thing but its on the lable so I put it here too. Anyways, once the cream was on I put on a coat of Skin Barrier Spray & fanned it dry. I winced putting the pouch on top of that burn & from there said a big prayer!  

I was amazed to make it through the night with no further leak & when I changed my pouch the next day to air my skin & reapply the cream & the Skin  Barrier spray I could already see a difference in my skin as it didn't look as angry & my pouch had actually remained secure !   That was a surprise bonus!  I did change my pouch twice a day for the first several days then dropped to once a day then every second & so forth, but I credit the cream to healing my skin.  I still get eczema occasionally around the tapes but as soon as irritation occurs that cream is applied. 

Since reading all this forum, one thing keeps coming to mind & I don't know why I can't shut it out.  But have you tried googling natural yogurt & putting it on irritated skin?   I know Psoriasses is more then irritated but maybe it would help.  

@momof2 hi  I was waiting to hear what they said. I'm glad they are involved now and trying some things for her. Yes she will be in probably a write up as a. Case study for this. I was in a study for fixing a parastomal hernia. It was a 2 year study. It's good that we can help others I'm the medical field to help others. I signed off too right away. 

Her psoriasis sounds so painful.  The stoma are. What could be worse right? You are in good hands as you already know with the clinic. Hoping this all goes away soon and so she can be comfortable. The stoma nurses there are all so good. I bet they felt bad to see her in this condition. Prayers going up for healing. 

@momof2 pop in to update when you can. I hope she's getting all healed up and better now.