Hello, my daughter is 16 and had her colon taken out on Feb.26 by Dr. Salky at Mt. Sinai in NYC. Immediately after Dr. Greenstein created a j pouch with a loop ileostomy. It seems she was very diseased and after unsuccessfully trying to staple the j pouch, Dr. Greenstein hand stitched the pouch. The surgery took 9 hours and we were told it was a good end result. The next day one of the jp's had too much liquid in it so it was tested to find urine and discovered that my duaghter's ureter was severed from a staple and now had to have a 2nd 3 hour surgery to repair the ureter. A 10 inch stent was left in, keeping my daughter in pain until it was finally taken out on Friday (March 30).
During the past 4 weeks my daughter has been having lots of mucous coming out of her tush and her vagina. I was told to expect the mucous from the tush. So, on Friday they took out the stent, inspected the pouch and looked in her vagina to find out about the mucous. Well, it seems that during the first surgery her vagina was cut, causing a connection from the pouch to the vagina. They sewed this up, unfortunately having to leave the hole in the pouch, but they feel this should close on its own. My question is that now all the mucous is coming out her tush, she is red and so very uncomfortable on her bottom that she screams in pain. We use lanicane, balmex, aquaphor, vaseline, but nothing really seems to work. She can't seem to keep her bottom dry because of all the mucous coming out.

Help please, she can't continue like this. Since this 2nd complication she probably won't have takedown until August. It was supposed to be in May. I know the most improtant thing is to be healed and of course we'll wait, but eveyone talks about how great they felt when they had the bag. I want my duaghter to feel great again, even with the bag!

Dear Mila,

I had my first surgery in January 2006 and haven't scheduled my takedown yet because I'm in the process of accruing lots of leave time in case I need it for the takedown.

I have had great success with the bag, and your daughter will, too, I am sure. Take a look at the "Ostomy and Skin Care" discussion board for lots of helpful information.

Good luck!

I suggest Ilex. It works miracles on excoriated skin. http://www.ilexpaste.com/

Jan

Hi Mila,
You're right - what a horrible situation. I'm so sorry your daughter has had all these complications. I'd suggest a good barrier and healing cream, like Jan has said - Ilex isn't available here so I haven't tried it, but I know it's good since lots of people on these boards recommend it. I use a mix of things - a numbing cream with antiseptic properties (Germolene) and baby rash barrier cream that really helps protect the skin. I've also used a heavy duty barrier cream at night, since that's when I subconsciously pass wind, according to my husband!! (This is something I'd never dare do in a conscious state unless I'm on the toilet ). The j-pouch has worked well for me so far and I hope when your daughter heals, she'll feel the same way. After what she has been through, I imagine she'll be elated to have a functional pouch. Which she hopefully will since the complications she has had so far have been due to human error or just bad luck during surgery - severed urethra, unsuccessful stapling, cut vagina. (And this can happen; surgeons are human, and they never really know what things are going to look like inside us until they open us up.) I hope and believe that when her body is left in peace to heal, she'll be able to appreciate the benefits of surgery. I'm sorry it'll be longer till her takedown, but if she can try to see the bigger picture (hard, I know), then come August when she's healed better, her chances of a successful takedown are greater. Good luck to you both! There are teenagers on these boards too - maybe she could get messaging and get some support from them?
ps: with a sore bottom, don't wipe toilet paper - slosh clean with water and dab very gently with the softest tp you can find. Some are available with aloe vera or similar things.

This message has been edited. Last edited by: Soph,

Hi Mila,
As a mom of a jpoucher, I can understand the frustrations that you're feeling right now. It's hard enough to help them through, but then add complications on top of that and it seems like the light at the end of the tunnel keeps getting further away. My daughter had alot of complications, long hospital stays for both of us, and the road to recovery has been long, but I just want to give you a message of hope. My daughter is healed, functions extremely well, and your daughter will come through this too! She has her youth on her side which will help her to heal faster. Hang in there...she needs you more now than ever! Feel free to PM me...
Take care!
~Elise~

Hello Milna:
Please try our ILEX Skin Protectant Paste. Please write to me and I will get some out to you immediately. This is the only product that will heal her and get her well again very fast.
Please e-mail me at medcon1@worldnet.att.net
I will send her some .
Warm regards"
Virgil Pichierri
President
Medcon Biolab Technologies Inc

Milna:
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I'm so sorry your daughter is having so much pain. We used Bag Balm on her bottom that kept her dry and we also used depends undergarments in case of accidents. that last for three months, now she is fine. Best of luck

I have one piece of advice.

Get a new surgeon. I had complications after my first surgery, and I figured it was nobodys fault. But I kept having them. And I really wish I had gone somewhere else after the first. And also, I had my ostomy for 3 years...its normal to have it for a while to give your body time to heal. Please don't rush her surgery, she needs ample time or there could be MORE complications.

But also, I'm 17 so if she ever wants to talk to someone, I'm here for her =] I found it very hard to go through this without anyone my age to talk and vent to. I wish you both the best, and keep us updated!


ps: I had a stent in my ureter for kidney stones for a month....that was the most painful thing they've ever done to my body.

Mila, please take up Virgil's offer for assistance for immediate shipment of Ilex. All those other creams are only barriers to protect the skin before serious breakdown, and will not adhere to weeping wounds. Ilex is different in that it protects weeping wounds from the irritating drainage of stomas, incontinence, and fistulas.

Jan

thanks eveyone,

this site is so great I can't imagine how anyone gets through this without it. I spoke with Virgil this morning and I'm going to have the Ilex tomorrow. I also ordered some of the calmoseptine. Everyone always talks of butt burn after takedown, so I wasn't expecting it until then. I guess we have to always be prepared.

Wow I am sorry to here about all of these complications and errors in surgery. The mucus if it is just mucus may not actually be causing the problem. She could have a yeast or bacterial infection on her skin, since you have used all of these creams and nothing works, I would look into some kind of skin infection. Also if she is still in the hospital and laying on their pads they contain strong chemicals that will irritate, if so then use disposable pads. Mike
PS; In fact if she is still in the hospital they should be treating this.

Mila,

Best of luck to you and your daughter. You will get through this!

I had a one-step surgery, so no ostomy experience, but for me a Very Warm Sitz Bath worked wonders for butt burn. Very healing and soothing.

Anyone who had an ostomy, do you think this would help?

Do you have a visiting Ostomy Nurse? What does he/she recommend?

Keith

Dr. Greenstein did my pouch back in 1999. During my stays at Mt. Sinai, they gave me a paste for the irritation. It worked great. I have no idea what it was called though. I asked where I could get it after I left, and was told it's something they make up in their our pharmacy there. Maybe ask Dr. Greenstein or some of the nurses there on the GI floor (floors 9 & 10 right? ahh memories).

Oh wow! ..i was in this SAME EXACT situation..after having my jpouch surgery ..i was having mucous come out of my vagina and my surgeon looked and realized that a scalpel had protruded through my vagina accidentally during surgery but she sewed it up and it reopened..it was now a fistula and did NOT heal on its own like they said and this was beause themucous coming out was constant so the area had no time to dry..i had 2 different surgeries to sew it back up and then have a seton put in..none of this worked until i finally hada graciloplasty surgery..where they take a teensy piece of muscle from your inner thigh and use it to cover the hole..it worked great! and allowed me to have my takedown..so if all else fails that is what i suggest

Alicia