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Mom to potential ostomate

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LLNorth
(@llholiday)
Joined: 6 years ago
Posts: 562
 

Hi Momof2, Thinking of you and your daughter. LL

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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(@momof2)
Joined: 3 years ago
Posts: 37
Topic starter  

You guys are so positive and encouraging.  I want to take you everywhere with me! 

The fever broke the same night but the next morning she fainted and had a terrible headache.  So I figure the fever was inflammatory and the fainting likely dehydration from ostomy, fever, and Crohns.  So I spent the day filling her with food and fluids and she is back on track.  

The new bag change seems to be holding up so looks like operator error and we figured out what we did wrong;) 

She is still having to visit the restroom quite frequently in the morning and after eating.  It doesn't seem fair.  She had the surgery to stop this nonsense and now she has the ostomy AND frequent bathroom trips.  But we haven't changed her Crohn's treatment yet (waiting for drug authorization) so that is likely the cause.  Plus it has only been 3 1/2 weeks since surgery so still early and the number of times is still down a bit.  

 


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1557
 

@momof2 ... Wow! You are both doing amazingly! I agree, You  Get Mother of The Year!! I'm happily & slightly jealous she has such an amazing support system & personal detective thru you!! Shes very fortunate !! 

Its pretty much normal for the ostomy to be productive after meals,  especially the 1st 6 - 8 weeks.  she'll figure out what she can or can't eat before going out shopping or to school.  Some foods will pass more quickly & those that absorb fluids thru cooking will be slower. 

My 1st year I learned where every washroom in our small town is & convinced every manager to tell there staff if I said I needed to empty my "pouch", the key word,  they needed to show me to the washroom. Its been pretty cool to know I can eat before leaving the house because I have washroom priveledges everywhere here.   If I go an hour from home, I don't usually eat till I'm on the way home then I can use my own washroom. If a manager or staff say no I simply reassure them I'll leave the washroom as clean as I find it & even tell them theres deoderant in the pouch, so basically stink free too. I'll admit to my pouch filling unexpectedly & running into a big public washroom line up & having to explain my situation to avoid a big mess. I find the majority of folks to be accomadating that way too.  Plus the last thing they want is having to witness  & clean up or dodge a splashing situation! Lol! Nothing like instilling a bit of poop fear!! Lol!  I chuckle because the pouch really does stay on well even full to the brim & with a little hand help to get to the washroom.  I use a 1 piece. 

It can be frustrating to make so many trips to the washroom but there are bonuses in it not going out the traditional way.  I remember well needing to make a gratefulness list of pros & cons 6 weeks after surgery.  I certainly don't miss that burning ring of fire or the high use of toilet tissue & Penetin diaper rash cream!!  I can assure you both, things will settle down but for now her body is still dealing with the after affects of surgery & healing.   Its also what you can't see on the inside that still needs healing that is also taking its time.  

I'm glad you figured out what was causing the leaks. I keep a straw handy to help blow off the extra stoma powder.   Good to keep up on fluids all the time. Drinking with meals helps & inbetween them also helps prevent blockages too.  If she drinks too much her body will let her know. Be aware too that dark urine can mean not enough fluids & clear can mean too much.  Bright yellow after vitamins is normal.  Ive learned to keep Gatoraid & Gingerale on hand all the time. It helps well with rehydration. I know you said shes sensitive to these products so maybe keep some from your recipe handy in the fridge too.  Or if its powder mixed into fluids, maybe keep some ready to pop into a water bottle.  Eating smaller amounts of food more frequently will help her moniter her gut issues & speed as well. 

Ask anything! We are here for you both! 

 

Linda


   
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(@momof2)
Joined: 3 years ago
Posts: 37
Topic starter  

@LK Thanks so much for the response but her visits to the restroom are for the "old fashioned" way.  They told us to expect some mucus and blood still but she is still producing what looks like a fair amount of stool and it is coming out her bottom.  She has a loop ileostomy so I am thinking it is like when a hose is kinked and gets a slit at the kinked part.  Most of the water escaped out that slit but some passes by and comes out the end….does that make sense? I have googled the heck out of this thing and found nothing but her GI from when she was younger assured me this is not abnormal so we will just sit and wait.  

The good news is we just heard that she will be receiving Rinvoq through a special program so she should be able to start that next week.  We will give it 6 months to see if it heals her colon.  If so, straight reverse of the loop ileostomy.  If not, depending on what parts heal maybe a colectomy and J-Pouch or total proctocolectomy and end ileostomy.  She has already voiced that this is not so bad and that she is not so sure about the j pouch option so if no healing she may opt to go straight to proctocolectomy and permanent ileostomy.  


   
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(@momof2)
Joined: 3 years ago
Posts: 37
Topic starter  

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

She went public on her Instagram letting everyone know about her surgery and posting picks with her clean clear bag so I am guessing she has adjusted to it  

Quick question though.  When going through airport security they pulled her aside because of her bag.  They had to pat her down and test her hands.  Does this normally happen?  It was fine, it just took her by surprise and she wasn’t expecting it. 

Her supplies are at her apartment waiting for her and she gets to start broadening her diet this week!  

Still having to urgently run to the bathroom. It happened twice today at airport while on line which was annoying because surgery was supposed to fix that but she hasn’t started Rinvoq yet. Likely getting delivery this week. 


   
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(@john68)
Joined: 7 years ago
Posts: 2058
 

Hi ya, That’s great news to hear. And the very fact she is comfortable to be open about the ostomy. I have always found folks very excepting about my stoma. I had mine when I was 26 and even with relationships never found anything negative. I know my experience at airports has been either it wasn’t noticed or I was asked politely what it was. The stoma will settle down and with a more normal diet she will find foods that help thicken etc. A very positive update 👍

ileostomy 31st August 1994 for Crohns


   
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(@momof2)
Joined: 3 years ago
Posts: 37
Topic starter  

I am actually thinking about having her ask her GI for a script for rectal suppositories or foam to help with the urgency and bleeding.  At least until she can get a good two weeks of Rinvoq under her belt.  

The silver lining is that with these frequent and urgent smaller BM's we will at least be able to tell if the Rinvoq is working;) 


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
 
Posted by: @momof2

Quick question though.  When going through airport security they pulled her aside because of her bag.  They had to pat her down and test her hands.  Does this normally happen?  It was fine, it just took her by surprise and she wasn’t expecting it. 

That is exactly the experience I had. I’m guessing it is pretty normal. 

Congrats to her for being ready so soon after her ostomy. I’m sure her school friends will be very supportive!!

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4372
 
Posted by: @momof2

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

Yay! Congrats!!

Quick question though.  When going through airport security they pulled her aside because of her bag.  They had to pat her down and test her hands.  Does this normally happen?  It was fine, it just took her by surprise and she wasn’t expecting it. 

It is pretty standard. Sometimes they won't pull you to the side for that bomb residue test (literally what they are looking for!), but they often do. 

I do let them know about my ostomy appliance before entering the scanner, since they'll "see" it anyway: https://www.veganostomy.ca/ostomy-travel-part-2/#Airport_Security

 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
 
Posted by: @veganostomy

I do let them know about my ostomy appliance before entering the scanner, since they'll "see" it anyway

I do the same thing. They did the residue test on me both times I’ve flown since getting Squeaky. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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LLNorth
(@llholiday)
Joined: 6 years ago
Posts: 562
 

How fun and great that she is out and about and doing things!

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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