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Heard from Doc today

crohnsinct

Well-known member
Oh thanks @Delta_hippo today is a rough day. None of her clothes fit with the bag and location of the stoma. Some pants pull on the bag and hurt. Her leggings look ridiculous with ginormous bag going down the leg. I think she is really going to want one of those belts. I think she also really needs a different bag. These are so cumbersome. And she definitely does not want clear bags. So that is one change we have to make.

Quick question. When you say lots of wipes, what are they for? They taught her to clean the skin around stoma with paper towels soaked in a water/gentle soap solution. No moisturizers or scents. So the appliance sticks better to the skin. BUT emptying the bag is awkward. Any tips? We already figured out toilet paper in the toilet to avoid splashed. But lots of effluent gets on the opening and she wants to clean that before rolling it back up. Also, effluent doesn’t come out easily when it is thicker. So she has to squeeze it out. I am sure she will get into a rhythm and routine but if I can help her with tips and tricks from others that will help learning curve go faster.

We went out for breakfast (hospital cafeteria). She had to go. The old fashioned way. Didn’t make it and had an accident. Back at hotel and back on toilet pooping and bleeding. If this doesn’t say the surgery was necessary….
 
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crohnsinct

Well-known member
Oh yeah and dehydration is definitely going to be an issue with her because she only likes to drink water and they told her no water. It thins the stool out too much and makes things move through too fast. So it is rehydration solutions. She has tried 2 so far and they both gave her massive headaches because of the artificial sweeteners which apparently are also necessary because sugar thins the stool out too much also.

They did give us some make your own recipes so going to try cranberry juice, water and salt when we get to the air bnb. Vitamin water and salt is another but idk what is in vitamin water. Gotta check it out.

But for now, her output was pretty thick thus am so I am thinking she needs fluids and will hook her up with the Liquid IV stuff at a very slow drip and hope it avoids the headaches.
 

crohnsinct

Well-known member
So I am figuring the active colonic issues are because even though we diverted. She still has disease. And they held her meds for a few days. And she didn’t fully clean out for the surgery and the contrast must have still been in there. We will give it time. She got back on Tofa last night. Surgeon did say she might see mucus/blood for quite awhile.
 
Ah poor girl. She will get the hang of it. Clothes are a real issue because the normal stuff like low rise jeans will really cut across the stoma and be sore - high waist jeans however are lovely and also as denim is thick kind of disguises the bag.
Wipes are like paper towels and for same purpose but made out of a softer material- not sure what now I think of it - but yes soak in warm water to clean the skin.
Emptying the bag is tricky because toilet is the wrong height! Thicker is easier than very watery which splashes everywhere. It is not glamorous. Also be warned the stoma has a mind of its own so if showering without the bag e.g. during a bag change it may spurt stuff out.
I got told to drink squash (cordial?) which I did - you could try a little coconut water in water with a slice of orange and pinch of salt. Get the proper sea salt which has all the minerals in.
I hope things settle down for her xx
 

crohnsinct

Well-known member
LOL yep! She had all male nurses inpatient and her stoma nurse was a young guy. He took the bag off and was talking to her and that thing just kept dripping poop all over the place. Luckily she laughed out of embarrassment. He was great. He said, "you either laugh or cry and I am glad you are laughing". He told her eating a big marshmallow a half hour before she changes her bag will help calm it down also. Also said she will get used to when it is the least active and maybe can shower without the bag on at that time but not even necessary, his father showers without the bag any time he wants. He also told her it was one of the best looking stomas he has seen so there is that.

What do you do about how low the bag goes? It literally goes a little down her leg so would go down the jeans pant leg a bit. Maybe she just has a really small torso?
 
So from what I remember, in hospital you got an enormous see through bag so they could keep an eye on output and didn’t have to change it too often, once set up with ordinary supplies it was smaller and not see through, grey as I remember. So this might be a short term problem. Have a look online at people modelling ostomy bags and see if they look smaller than hers. The underwear I mentioned has a pouch inside so the bag sits in that, definitely not trailing down a leg. I think she is still on hospital bags. They don’t discharge you until food has gone in at the top end and poop into the bag at the other end so it lets them just glance and see to check if things are working!
 

crohnsinct

Well-known member
Ahhh. That explains it. I am going to have her call around to the various companies and get some free samples. Hopefully they can get them to the airbnb in time for us to try shopping. No sense shopping with this big, loud bag.
 

Tesscorm

Moderator
Staff member
Lots of hugs to O! As amazing as she is, this is still quite a lot to process, learn, etc. Thank God she has you to help her get through the first little while.

I'm sure you know this but just in case... I've seen quite a few posts on TikTok re stomas. There was even a girl on there who makes covers for her bag and matches the fabric to outfits! Maybe it'll help O with the 'fashion' side.

Thinking of you guys!
 

Maya142

Moderator
Staff member
O is such an incredible kid. I'm so very proud of her. I'm sorry to hear she's having bleeding and diarrhea but I guess you're right that things won't heal overnight (though I really wish they would!!!). Could rectal steroids help? Just temporarily?
 

crohnsinct

Well-known member
That's actually not a bad idea @Maya142 but she mentioned it to the GI at her appointment yesterday and he was mildly interested. Said just to watch it and if it doesn't get better to call.

Did her first bag change on her own today. Man the WOC nurses make it look so easy! Just hoping she got a good seal and she doesn't spring a leak. In the Air BNB all day taking finals so if she does not the end of the world.

She is super comfortable with the stoma now. Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc. It is like a new pet! So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.

Her GI called her in because they have a program at this hospital where they get upadacitinib for free for up to a year and they have it right there! However, they needed an in person appointment to tick all the boxes. The fellow said that if it works, when the year runs out her insurance will have to cover it because she had been on it for a year, some little known loophole. Boy am I glad we came to these guys.

So she should be getting her upadacitinib by the end of the week.

Shingles and pneumonia vaccine given in the office. Hep A & B to be gotten at home (no antibodies on testing they did in hospital). They are trying to get her the iron infusion for while we are here.

Surgeon set up a home health care nurse to check in with her while she is in town. Home health nurse set her up with ostomy supply rep. Rep called a different company than the one she is using and got her some free supplies sent to the Air BNB.

So, post op check with NP and stoma nurse on 5/3, then we can leave. Lipid labs in 8 weeks. F/U with GI in three months. December scope and next surgery. Surgery will be determined by scopes….either Total procto colectomy and change ostomy to end ileostomy or reconnect.

That's it! No more monthly GI appointments, monthly labs and weekly emails with updates….haha and endless questions from mom. Just go out and live your life and we will see you in December! How freeing! Yeah there is the whole endless stoma management questions but that's what forums are for;)

Try not to miss me while we are gone;). JK you know I will be here.
 
That's actually not a bad idea @Maya142 but she mentioned it to the GI at her appointment yesterday and he was mildly interested. Said just to watch it and if it doesn't get better to call.

Did her first bag change on her own today. Man the WOC nurses make it look so easy! Just hoping she got a good seal and she doesn't spring a leak. In the Air BNB all day taking finals so if she does not the end of the world.

She is super comfortable with the stoma now. Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc. It is like a new pet! So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.

Her GI called her in because they have a program at this hospital where they get upadacitinib for free for up to a year and they have it right there! However, they needed an in person appointment to tick all the boxes. The fellow said that if it works, when the year runs out her insurance will have to cover it because she had been on it for a year, some little known loophole. Boy am I glad we came to these guys.

So she should be getting her upadacitinib by the end of the week.

Shingles and pneumonia vaccine given in the office. Hep A & B to be gotten at home (no antibodies on testing they did in hospital). They are trying to get her the iron infusion for while we are here.

Surgeon set up a home health care nurse to check in with her while she is in town. Home health nurse set her up with ostomy supply rep. Rep called a different company than the one she is using and got her some free supplies sent to the Air BNB.

So, post op check with NP and stoma nurse on 5/3, then we can leave. Lipid labs in 8 weeks. F/U with GI in three months. December scope and next surgery. Surgery will be determined by scopes….either Total procto colectomy and change ostomy to end ileostomy or reconnect.

That's it! No more monthly GI appointments, monthly labs and weekly emails with updates….haha and endless questions from mom. Just go out and live your life and we will see you in December! How freeing! Yeah there is the whole endless stoma management questions but that's what forums are for;)

Try not to miss me while we are gone;). JK you know I will be here.
You girls are amazing honestly. Your determination and positivity is unbelievable!
 

crohnsinct

Well-known member
Yes, she should be getting the upadacitinib by the time we leave (5/3). The hospital has a specialty pharmacy and a good supply of it. She is taking the xeljanz while we wait even though it didn't get her to remission, it did keep her from disaster zone so they want her to keep taking it. They didn't say anything about waiting and she is taking her xeljanz so…..

Hydrating is still a little bit of an issue because she can't drink straight water and can't process artificial sweeteners. I think we might have hit on a recipe that will work. If so, I will post it here for others who might be following the ostomy diary.

So here is some ostomy humor courtesy of O.

While in the hospital she went to the bathroom to empty her bag and came back and said, "just think…all those years of potty training wasted"

Today she is still having some activity per rectum. She came out and exclaimed, "Mom, I am still going to the bathroom…the old fashioned way!"

And last but not least, some young guys moved into the Air BNB under us. I met them in the laundry room and told her about them. She wanted to know if any of them were "cute" so I am guessing girl got her groove back.
 

Maya142

Moderator
Staff member
She’s really too much 😂! It kind of sounds like she feels FREE - as she should!!! I know she still has surgeries and scopes ahead but hopefully she will have more normal days that don’t revolve around the bathroom.
She is super comfortable with the stoma now. Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc. It is like a new pet! So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.
Oh believe me, the next time M asks for a kitten or puppyI’ll be telling her that O says an ostomy is a GREAT pet - after all, it follows you everywhere, communicates with you regularly and potty training is not an issue at all. What more could you possibly need?

M has been asking if O has named the stoma?

Really hope she gets Rinvoq soon!!
 

crohnsinct

Well-known member
Oh believe me, the next time M asks for a kitten or puppyI’ll be telling her that O says an ostomy is a GREAT pet - after all, it follows you everywhere, communicates with you regularly and potty training is not an issue at all. What more could you possibly need?
O.K. that made me literally LOL! Potty training not an issue.

Well she hasn't 100% settled on a name but it is definitely a she. She says, "she is pooping, she is being loud, she is quiet".

She originally wanted to call her SAB which is an acronym for…well I will let you figure it out. But it made it seem like O was angry at it. Then she said how about Sabrina and when I am mad at her I can call her Sab. But really it is just her and she for now.

I am starting to get concerned because ostomy supplies haven't come and we haven't heard about Rinvoq and we leave Tuesday. I actually think the supplies got sent to CA because O talked to the guy on the phone and she said he said the supplies will be shipped in a couple of days. I asked her what address and she said, "oh, he didn't say". I then asked, "well did you give him the Air BNB address?" and she said, "oh, no". For a 4.0 student she can really have some brain farts sometimes. She said it is post surgical fog.
 

crohnsinct

Well-known member
Stoma/fashion update!

O had her surgical follow up with NP and WOC nurse. She passed with flying colors. Physically looking good, ability with pouching system A+ and mental attitude and adjustment really great! She is cleared to travel away from hospital city.

She did have some skin separation around the stoma that the WOC nurse taught us how to treat. Sprinkle a little stoma paste, cover with a dressing then put on appliance. in a few changes skin will fill in. After that they advise she start using barrier rings to protect the skin around the stoma and increase the life of the appliance.

More importantly, high wasted mom jeans work with her ostomy! And she tried on high waisted bikini bottoms and with some adjusting the pouch fits nicely. She also bought two dresses because dresses are easy. She never wore dresses before so that was interesting.

She is really anxious to get rid of her g tube so she can at least wear crop tops but GI won’t approve that until well after December surgery so stuck with it for a while.

This morning she said if In December she can’t do a straight reconnect she thinks she will choose total proctocolectomy with end ileostomy. She feels like this isn’t so bad and the j pouch will be worse. We’ll see.

Still waiting for Rinvoq and ostomy supplies. WOC nurse gave her a couple of extra pouches and appliances.
 

crohnsinct

Well-known member
Still traveling and bored so thought I would send a quick little update.

O had her first leak. It was after our first time changing the appliance with the new procedure of putting stoma powder on the damaged skin and applying the protective barrier etc. Operator error. I think we cut the flange too big for the size other stoma (she's shrinking). She handled it very well. Woke up to the leak but laughed, cleaned up and we just tried to do better. The stinky part is we are running low on supplies so an appliance/bag change 1 day after the last was definitely not on the schedule!

She also ran a fever of 102. On call surgeon was not concerned with infection 3 weeks out. It broke over night so I am thinking it is one of her infamous inflammatory fevers. She fainted the next day so assuming dehydration from ostomy, fever and Crohns is at play. I tanked her up and she got better.

She is STILL visiting the restroom the old fashioned way 6-8 times a day and often urgent. Doesn't seem fair that she had the surgery and is still dealing with the other end. One time was a pretty sizable amount of stool and blood. Her old GI says this is not abnormal.

Insurance denied Rinvoq but her new docs got her into a program where she can get it for 24 months for free. I guess this is the perk of being at a center with 4000 IBD patients most of whom have failed multiple drugs and needed surgery…the companies are anxious for them to get experience with their drugs. Plus they run a lot of the clinical trials and are speakers at many conferences so good to get in their good graces. We only need 6 months for now to get us to scopes and the next big decision.

She goes back to school Monday.

Overall we are good, good, good. She gets to start adding back in fiber foods next week! So excited!
 
I’m glad she is doing okay and Sab not playing up too much.
Re the leak, don’t know if you managed to get hold of the banana peel stickers, but I had a horrible overnight leak once and that’s why I started using them for extra reassurance (I do a lot of client facing work or at least did pre covid)
If staying away overnight and anxious then just put a thick towel on the bed, better to feel confident than stay awake anxious.
Sorry to hear she is still needing the lo so much. Hope that settles soon.
Re the skin problem some evenings I would sit without the bag fully attached just to let the skin gets some fresh air for healing/ respite. It does depend who you live with and freaks out an unexpected amazon delivery 🤣
For dehydration maybe a little heavily diluted coconut water?
The other thing I wanted to say is not to feel pressure to definitely make decisions in December, my GI said you can wait a year, 2 years and still successfully reconnect, so if things are not clear cut/ new hopeful drug imminent/ a bit more time would make the right decision clearer then it might be possible to defer final answer.
Re the fainting is her blood pressure low generally? I struggled with that and the advice was always drink more but a psychiatrist friend told me you should also eat salt to push it up (licorice helps too) so I started carrying salty crisps as a snack.
I so wish she didn’t have all this to deal with, she is doing amazingly xx
 
What did her doctor say about fainting? Is her ileostomy output quite high? Is she losing much fluid per rectum? Did her doc/team recommend an oral rehydration solution or some fluid with electrolytes?

Did her current doc or old doc say how long to expect BMs the old-fashioned way? I hope not long because of the inconvenience but more importantly, I thought the purpose of the ileostomy was to give her colon/rectum a rest.

Curious, was the fever just one day?

Hoping her return to school goes well. No more fainting please!
 

crohnsinct

Well-known member
Thanks guys! @Delta_hippo we did get some banana peel stickers in a welcome sample kit from Coloplast but she is currently using a square flange from ConvaTec so they don't really work with that. However, the WOC nurse gave us some sort of tape that I think will work. The leak started from the stoma though and tunneled through the flange so I really think not much we could have doe about that except cut the hole a little more snug as I think it was too big and gave the effluent some place to sit and work its way through the adhesive. Does that make sense? I cut it more snug the next time and it stayed for 3 days. Today I was shocked to see that her stoma shrunk even more so sized it down yet again! The skin around the stoma is still pretty slow to heal. She still has something that looks like a moat around the stoma.

Good point on not feeling rushed to make a decision in December. I mean if the scope shows Mayo score 3 then clearly the Rinvoq isn't working and we need to either move to more permanent surgery or try a new drug if one comes available. I doubt they will let her hang around waiting for another drug though. Not if damage is still present.

As for the fainting, yes she has low blood pressure normally. Has been a fainter before. It always coincides with her Crohn's acting up more than usual so likely dehydration. Years ago she was sent to a cardiologist (when her original GI didn't want to admit that she was inflamed) and he said just eat more salt. So between that and the ileostomy causing dehydration issues she has really upped the salt intake and tried to drink more of the ORS solution. I think the fever added to the struggle this time.

@xmdmom we haven't told her new GI about the fainting or the fever. The fever broke the same night so I really think it was one of her weird inflammatory fevers. Yes, the team gave us a list of ORS formulas to try to mix ourselves but also told us Drip Drop or Liquid IV would work but since she can't process artificial sweeteners we have to mix our own. The winner so far has been 4 cups of water, 3/4 tsp of salt, 2 tablespoons of sugar and a grape Kool Aid packet.

Her ileostomy is a low to medium output and not terribly liquid. Per rectum she is loosing mush…maybe a 1.5 cups per day so not terrible but certainly not what we expected! Especially the frequency and urgency. The rest of the time it is just blood and mucus. No one has said anything about how long it would continue but she has an appointment with the surgeon 6/5 virtually and I will make her ask if it keeps up. Maybe she is a little lucky though because now at least she will be able to tell if Rinvoq works since she is still having symptoms. I totally agree with you though because if it keeps up what was the point of the surgery?! Seems like a lot of aggravation for little return.
 

Maya142

Moderator
Staff member
I really think she should tell the surgeon or her GI about the fever and the BMs. Poor kiddo - this is just unfair!! She went through with this huge surgery - she deserves some relief!
 
And the fainting. I know it's sometimes a hard call to know when to tell the doctor something's going on. I think it's best to keep the doctor/team informed. It helps them get a truer picture of what's going on. It sounds like you and she are used to the fainting but fainting is not nothing!
It's great the fever was only 1 time and you may be right about the cause but why not share it with the doctor?
Wishing her smooth sailing at school!
 

crohnsinct

Well-known member
I will see if I can convince her to message him just at least so he can get used to her goings on. I suggested it the day she had a very large amount of stool the old fashioned way and she rolled her eyes. I think she doesn't update them because she is afraid of being called in, sent to E.R. etc. She has developed this don't ask don't tell philosophy with regard to her health.
 
I will see if I can convince her to message him just at least so he can get used to her goings on. I suggested it the day she had a very large amount of stool the old fashioned way and she rolled her eyes. I think she doesn't update them because she is afraid of being called in, sent to E.R. etc. She has developed this don't ask don't tell philosophy with regard to her health.
I understand her mentality wanting to avoid the ordeal even if it's needed. I hope you can convince her. It's good that you are coaching her to be her own advocate. Please keep us posted.
 

crohnsinct

Well-known member

crohnsinct

Well-known member
So O went public with her ostomy. Posted before and after pics on social media (she isn't private) and even put a pic showing her bag and it was a clear (clean) one so you see Sab and all! I guess she is handling it well then huh? We will see what happens when she returns to real life.
 
So O went public with her ostomy. Posted before and after pics on social media (she isn't private) and even put a pic showing her bag and it was a clear (clean) one so you see Sab and all! I guess she is handling it well then huh? We will see what happens when she returns to real life.
She's awesome just like her mother! Think of all the other young people in her position she is helping by doing this! I applaud her! Standing ovation for O!
 

crohnsinct

Well-known member
My little ostomate has left the nest! She is on her way back to school!

When going through airport security they pulled her aside because of her bag. They had to pat her down and test her hands. It was fine, it just took her by surprise and she wasn’t prepared for it.

She had to urgently hop off the security line twice to use the restroom and is starting to get peeved with this nonsense. Hopefully the Rinvoq helps with this but I am going to once again suggest she mention it to docs. Her manometry test results were definitely not normal so I am thinking that has a lot to do with it and wondering if there is some sort of PT etc that she could do or maybe just rectal topicals.

I can’t believe it’s been 6 years and over 12 semesters and we have never dropped her off at the airport in remission. But she does it! Just proof Crohn’s and UC don’t always get to win!
 

Maya142

Moderator
Staff member
They've never pulled O out because of her tube? M gets pulled out all the time, though it's usually for her J tube she says. Don't know why because they're both buttons. Also, if she needs to carry specific liquids on the plane (liquid meds, liquid ORS solution) she can do so with a note from the doctor. M takes all liquid meds onboard and sometimes milk if she needs to eat before having a med. They usually have her taste it. Oddly enough, they will allow milk but not water - I suppose because you can buy water after security.

I would definitely tell her GI that she has diarrhea and urgency.

SO incredibly proud of her for the way she has handled this surgery!! I hope she is able to really enjoy school now!!
 

crohnsinct

Well-known member
Hey y'all! I am always so full of bad news, I thought I would post the good.

O has had great luck with her ostomy. No leaks🤞She has gained more weight and is now 122.3! But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.

She started her Rinvoq a little over a week ago and she thinks it is helping with the bleeding, urgency and mucus but that could also be the bowel rest. Insurance approved Rinvoq on peer to peer so she will transition out of the Abbvie program to plain old specialty pharmacy.

She told her old GI she is fully transferring her care to the new hospital.
 
Hey y'all! I am always so full of bad news, I thought I would post the good.

O has had great luck with her ostomy. No leaks🤞She has gained more weight and is now 122.3! But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.

She started her Rinvoq a little over a week ago and she thinks it is helping with the bleeding, urgency and mucus but that could also be the bowel rest. Insurance approved Rinvoq on peer to peer so she will transition out of the Abbvie program to plain old specialty pharmacy.

She told her old GI she is fully transferring her care to the new hospital.
Thanks for sharing the good news! It made me smile. O is awesome! I love how secure she is with herself. (Product of good parenting of course!) Glad she is gaining weight and doing well!
 

Maya142

Moderator
Staff member
But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.
Love the fashion updates! Ironically, M purchased a one-piece swim suit with a cut-out for the opposite reason - so she can reach her J tube without taking her swimsuit off! M says whoever designed these clearly had stomas in mind 😂.
So glad to hear O is doing well. REALLY glad to hear she is switching to the new GI. I don't remember if I mentioned this (we weren't told this till M had been on Rinvoq for months!) but Rinvoq is light sensitive so you can't put it in a pill box.
 

crohnsinct

Well-known member
Oh wow @Maya142 ! No one told us that! And I can 1000% guarantee that O did NOT read the prescribing information pamphlet that likely came with it. Details! I am super surprised that the Rinvoq ambassador didn't tell us that. She LOVES her job and can talk Rinvoq all day.
 

Maya142

Moderator
Staff member
If it makes you feel better, we spent well over 6 months putting Rinvoq in a pillbox (a colored one, though it was still translucent) and kept the pillbox in a drawer. We didn't know till M actually listened to one of the long boring calls from the Rinvoq ambassador. She says she won't ever make that mistake again of not being thorough but she think they should hand out a big notecard saying "LIGHT SENSITIVE, do not remove from bottle" with the Rinvoq bottle.
She was especially annoyed because she was on the phone for 30 minutes before the rep mentioned that!
 

crohnsinct

Well-known member
Hey guys!

Nothing much to report except O is gaining weight nicely and doing rather well. She is still on the 45mg loading dose of Rinvoq. At 8 weeks (mid July'ish) she will get labs and go down to maintenance dose of 30mg.

Her bleeding has pretty much stopped and she is only having to go twice from her bottom, mostly mucus.

She has recently had issues with leaks. We THINK it is because her stoma shrunk a little more so she starting cutting the flange opening smaller because that is when it started. The leaks led to a breakdown of the skin around the stoma. So she went back up in size of the flange opening and is back to using her stoma powder and barrier ring to help fill in the crevice left by the broken down skin.

Another theory is that her output has been somewhat thick so it isn't falling into the bag as freely, so when she sleeps it gathers around the ring/flange and the output could be eroding the seal.

So she went back up in opening size and is trying to thin output and so far she has 2 days with the same bag and no leaks 🤞

She is just so anxious to be able to settle on a stoma size so she can order precut wafers which will make bag changes so much faster!

Sorry if TMI - just putting this here in case any other ostomates follow O's journey.
 
Glad she is gaining weight and sounds like things are settling. Wondering if it’s worth trying to sleep on her side so gravity helps output down into bag not on top? Also the underwear I was banging on about ages ago kind of holds up the bag so puts less pressure on the bag sticking to skin and the weight of the bag pulling on it if that makes sense. Powder and barriers help. I presume they have given her the spray to dissolve the glue when changing bag to avoid extra stress to the skin? My only other slightly gross tip is to let the skin breathe when changing bag by just not attaching the new bag straight away and just watching tv or something with a disposal bag to collect output. You need to live alone or with someone very understanding. And not answer the door 🤣
 
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