The pull-through is the procedure to repair the colon by connecting the functioning portion of the bowel to the anus. The pull through procedure is the typical method for treating Hirschsprung’s in younger patients. 

@Marcie - yes in fact i have tried using the ol' pad on leaks but they dont hold very well so instead I use large facial cotton pad which are really good with leaks. He had another leak this morning .. lasted only 12 hours since his last change. Hubby suspected due to a very wet overnight diaper! 

@john68, Robert - Thank you! Yes i am aware of the gel packs but again purchasing this is not available here.. no worries cause the tampons holds up pretty good as well :)  

Thank you again my ostomate family!

Hugsxx

EPosted by: JamiesMom

Thank you everyone for your feedback and concerns. Jamie is already 11 weeks old (how time flies) and we got great news from his surgeon that he will be going for his pull thru in early Jan! But at the meantime we are still struggling with leaks and lesions. We recently started using a barrier film on Jamies skin unfortunately it backfired. After only a few hours of changing his bag, he started screeching! When we opened to see what had happened, we noticed his skin was red and raw! We then realized it  was because of dear sons natural reflex of constantly kicking his legs up which forced the film and base to be ripped off from his skin! Sob sob..  That’s when we realize the root cause of all his leaks. Because the base sits right on his hip bone and leg joint,  it just would not allow the base to sit flat. Anyhow, all is not all dark and gloomy on our end.. Jamie is growing well and is a happy baby.

 

We do have a few tricks up our sleeved which has given us a slightly better hold. We would warm the base between 2 heat pads until it is nice and warm to the touch which makes it soft and extra sticky. Some would use a hairdryer but I found the heat pads works best. We also put a tampon in the bag to absorb all the liquid 😊 and change them as often and conveniently as possible. Sudocrem has helped with the rawness. We also swaddle our little bub so that doesn’t give him that much leg movement for about 30 mins or throughout the night if we change him at night time. Just to allow the base to stick and cool before he “break dances” again as hubby calls it. Depending on our luck, we could get up to 3 days without any leaks..

 

Thank you Aunty Marcie – that would be so helpful! And hopefully we too can help others with what we know and have learned through this experience.

Love Jamie and Jamies Mom 

 

 

 

Try cutting the hole in wafer off centered to move wafer over a little away from hip . You do not have  to cut hole smack  in the middle of wafer you can  cut hole over to one side in order to move wafer up or side ways . Also try using the Brava Protective seal rings they are newer and awesome for preventing leaks . Order the thin version for him and break ring open and custom snug around stoma press ends together. 

Bubbles that's not a bad idea!

Hey,  the forum is working out. We are helping JamieMom to cope.  Yeah us.

Seriously,  we are doing GOOD. 

I do that with mine. I cut it so that my wafer can shift to the left about half an inch. Because my scar is right where my navel was and it's a very deep hole so the edge of the wafer has a tendency to lift and not stay glued down. Shifting it helps

Hi JamiesMom

Thank you for the explanation . Kinda what they did with me the first time only I had no colon . I sure hope it works for Jamie we will all be praying for him in January .

What is the date of this??????? 

Then you all will know that we ALL will be with our little nephew and you and yours!! Marcie.

Thanks bubbles thats a smart idea! Will def give it a try and see how it turns out. Ive tried the protective rings but they dont work with a flat stoma... unless theres another way of using it differently? 

Jamies stoma and fistula is flat and really tiny 0.5cm in diameter and 0.5cm between each other. So the way we place the wafer is by cutting a large 3cm hole to cover it which means the space around/between the stoma and fistula is red and raw. Our surgeon ( the only expert we know) says this is fine. Poor Jamie cries in pain with every change/ cleaning.. :( . Somedays when he poops he twitches and cries in pain, some days he is fine. But when there are newer red/raw skin due to leaks, thats what hurts him the most. Ive never seen any method done our way coz it looks extremely RAW! but every time we see our surgeon he says it is fine?!

Any suggestions?

xx

Hi Marcie, we dont have a date yet but will let you know once we do!!! :) 

Hi JamiesMom, Broken or raw skin will be driving the wee guy crazy, I am going to be bold and say your surgeon is not right in saying its fine. the skin needs to heal and if it getting covered in output no way is it going too. their are sheets that cover all of the site so that the wafer can be placed on top and it sounds that a convex wafer would be best for his type of Stoma. Check out Erics blog on healing broken skin. he had more success using the rings than the crusting method. Crusting is putting on stoma power and patting with a wipe, letting dry and repeating so a scab it build up to protect the skin. but you see where I am coming from none of this will happen if it getting covered in output. the ring can also be used to form a ring to help with the low stoma, I don,t have to do that but you will see some of the others meation that's what they do.

HI again JamiesMom, at the start you where limited in getting Stoma supplies has that gotten any better???

ME AGAIN, right I knew Eric had done a piece on the protective sheets will give you an idea of the product.

Hi JamiesMom 

I have only had my Norman for 15 months so I'm still learning myself  . But I have to agree with John and disagree with your Doctor . I think you need to cover the skin around the stoma in order for it to heal . The wafer should be cut to a close fit on the stoma but not hitting it . Output is very corrosive and burns the skin . I had bad irratation and I used a skin protector called Marathon . Don't know if you can get it there but if so it did work well for me . 

Hi mom, As u have to change the pouching system so much, try some cream on the sores around the wafer, and plop a pad on top-with plastic so his pee wont irritate him.. I am sure u have tried this or near to it-- When my kids were teething, their butts got so red and sore-- I let them sleep bare butt... gave nice air to it.. A bath is  nice before hand.. Helped much!! Many months of that ordeal.. The pee gets so much acid in it when teething.. Some kids go through teething well, mine? no!! 

Some people flush out their stomas.. I know u cant do this or maybe u can-- but I was thinking, an attachment of this into the stomas, with a tube and that tube attached to a pouch..  Now I know that they can do this!!  As I had such high out0put they wanted to do this type of thing.. now, mind you, you have to take two systems and make it one.. Eric has something on irrigation.. Check it out--  And No!! Jamie is not fine with all his sores.. How can the Dr. say that?? expected yes, but NOT fine!!! I feel for you!!  Its hard.. Your baby needs you more than the norm.. And your trying so hard to make him feel better.. Lots of baths mom... just warm water........... 

I had posion ivy under my wafer-- (how? don't know-but I think someone used my master bath after gardening and wiped their hands on MY white cloth-then I used it and changed my pouch) Well, I can assure you I know pretty much how Our Jamie feels.. NOT GOOD !!! and I was not a happy camper.. I cried, and I am sure Jamie cry's more than the normal baby.. 

Your going through so much now, and a surgery for him to go through.. Not an easy task for a mom and dad.. Our prayers are with you always...... Join us Saturday a the lounge.. Or now.. IT is a step out time of our stomas........ even tho we have to take them along.  :-( Marcie.. 

Posted by: Marcie

Some people flush out their stomas.. I know u cant do this or maybe u can-- but I was thinking, an attachment of this into the stomas, with a tube and that tube attached to a pouch.. 

This would be called colostomy irrigation, and it's only appropriate for colostomates.

I would STRONGLY advise that anyone who's considering this to contact their stoma nurse to be shown how it's done and whether it's even appropriate for you.

I don't know if irrigation is even recommended for kids.

For those who are interested, Coloplast has a video how their irrigation kit works:

JamiesMom, you should be able to find convex barrier rings, and some nurses even suggest doubling up on two rings to give it convexity. I would use caution and suggest speaking with a nurse before considering this as there are risks to adding convexity to an appliance (i.e pressure sores). 

I was not intending irrigation/flushing.. 

I was thinking of using this type of format that Jamie did not have to have a pouching system/wafer on for a bit of time to let him heal the rash etc. Just a make shift of comfort for him.. a bit at a time..  I was thinking of this use when I had posion ivy..  I came vey close to going to the ER with/for this.. If they could help me-it was pretty bad..  But I can stay still-- Jamie cant// HE wants to kick up  his heels and break dance..and I don't believe on meds to keep him down.. (WRONG) It was just a thought, I have no idea how to insert this, or how long u can keep it in.. When one is in such pain? we tend to go out on our own.. but I could not go that rt.. as I need Dr. approval and directions.. never mind the proper tools -- But Jamies Dr. can at least hear them out.. I DID NOT MEAN TO FLUSH--that would get even bigger problems.. As some adults in my support group hate this. and don't do it.. And some love it.. I am an Ileo... so, that does not even come in my area of treatments.. 

Simply put, if you don't  (rightfully ) trust your doctor,  if his advice goes against your motherly instincts,  get a different doctor. Dubai is not a backwards place like Ohio, there must be other physicians there that you can access. And you are connected to the internet.  You can consult with pediatricians all over the world. 

Try Australia or Singapore. 

Research,  research,  research. 

It was necessary for me,  with my horrible medical history,  to fire incompetent doctors. My attitude is that they are employees,  hired to do my job. Slackers need not apply. 

My relatives asked me how could I insult the doctor by questioning their competence by asking for a second opinion. Needless to say,  I could. 

If Jamie is hurting,  he needs another doctor or WOCN. 

Three hours later, I am looking at what I wrote this evening. I am pissed off about "experts " who don't know their a** from their elbow.

When a baby is in distress,  a mother knows. To dismiss the concerns of the mother is unconsciousness and unacceptable. In order to make a proper diagnosis,  he must be open to listen and to observe. 

Point 1. Jamie's skin is broken,  raw, and weeping.

Point 2. Jamie is exhibiting pain by crying too much. 

Point 3. Jamie's output is excessive even for a baby. It is caustic. 

Points 4, 5, 6. You can fill it out. 

Please,  find better solutions for your son. The doctor is knowledgeable about most normal situations,  BUT you're dealing with a very unique situation that needs special knowledge of Your Baby. 

Please,  search high and low for solutions to Jamie's  painful situation. 

Please act. 

For Jamie,

https://www.convatec.co.uk/products/pc-stoma-little-ones-paediatric-care

https://www.stomabags.com/pediatric-ostomy

Yeah John68!

What else can we come up with. 

Go, team!