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Mom to potential ostomate

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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1496
 

@momof2 ... Wow! Great to Hear she's recovering well. I had her & in turn you & your family on my mind & heart & in my prayers every time I thought about VO. 

I recently told a friend that I felt I gained my equilibrium so much better once I joined this VO group. It may not all be the same group but the help is always here, lol, sometimes after a  day or two, but we are here! 

If a J - Pouch is ever a topic of choice, there are a few here who have had one also, including me  so feel free to ask whatever questions your curious about & don't worry about being "politically correct", lol, that is why we are here. To share our experiences & hopefully help others make a more  informed decision & in turn a better experience. 

In the mean time encourage your daughter that drink lots of fluids & walking for a better & I think faster healing experience. The sooner things get on to healing the better & more in control she'll feel. She is so very fortunate to have you & her family by her side like this. Way to Go Mom of 2!!!  All the best to your Young Lady/ Ladies!! 

Linda

Linda


   
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(@momof2)
Joined: 2 years ago
Posts: 37
Topic starter  

Awww thanks everyone!  She was discharged yesterday!  Yep! two days after surgery! The surgeon said she was doing amazingly well and that she was in the top 10% of cases…so Suma Cum Laude in Cold Rectal Surgery;). Plus they had no beds and had her in the short stay until with 13 other people so no rest, lots of germs and surgeon figured we were staying so close to the hospital better to be in the hotel, alone and resting.  

Couple of quick questions: 

- are the bags they use in the hospital the size of the regular bags?  She tried to get dressed today and the bag literally extends down her leg and the waistbands on all her clothes hit right across the stoma.  So we definitely have some shopping to do but wondering if there are better bag options.  I figure the ones they use in the hospital are the cheapest, see through so the can see output and stoma and large so nurses don't have to empty them so frequently.  

- She can not take a majority of the rehydration solutions because of the artificial sweeteners and the fact that she can't process those so well.  She gets nauseous and massive headaches etc.  They tested her a bit ago and said she is borderline phenylketonuric. So we found a receipt for a make yourself that is cranberry juice, water and salt.  Going to try that as soon as we move out of the hotel and into Air BNB.  BUT is thicker output a sign of dehydration?  Is it like applesauce and in the hospital it was liquid.  Also, she isn't at a very high output.  She is at less than 500cc for the day. Is that o.k.?  She is definitely eating and making sure she is only eating things on the list.  But with no water to drink and only the icky hydrating solutions I fear she is getting dehydrated.  

- She had a BM in the hospital from her rectum.  We figured it was residual waste.  Today she had another and it was urgent and she had an accident.  WE got back to the hotel and she had to go again and there was blood.  She was always a bleeder but if this doesn't prove to her she needed the OP I don't know what does.    

 

Thanks again! 


   
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(@stella)
Joined: 3 years ago
Posts: 82
 

Hi Momof2,

Regarding of drinking. I only drink clear water. I boiled water and let it cool down. Mine is loop ileostomy. My doctor said since most water may go into the bag and not absorbed into my body (especially at my beginning after surgery, drink water was important for me). At least I sipped. I don't like artificial things (trying to avoid taking in anymore chemicals that's not necessary).

When I drink water before my food, I can see my stoma give it back out into the bag very quick. So I sipped and then eat and sipped again. I think this will also avoid blockage. I also drink no pulp orange juice and cranberry cocktail. Water and fluid is important as well for my kidney.

Regarding clothes. My pants waist line is also right across the stoma. I fold the waist line down up to my hip. Then I wear long shirts or spot tops. (the other family members here may have better advice than me).

Yes, some bags in the market are better than the ones from hospital. ? 

Then regarding the BM. I didn't have experience of this. The other family members here may be able to share their experience if they had. Otherwise, I think the nurse or the doctor will be very appreciate to advise on this, especially if there's blood. For the safe side, it's better not to assume and let it be confirmed by doctor.

Wishing your daughter recover very soon. (I know she will)

 


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 
Posted by: @momof2

are the bags they use in the hospital the size of the regular bags?

More than likely not. They could be larger, as you described, but you do have a ton of choices with bags to find a good balance between capacity and practicality.

Posted by: @momof2

BUT is thicker output a sign of dehydration?

Low urine output is a more common sine. Output from the stoma tends to change a lot based on the foods consumed.

Posted by: @momof2

She had a BM in the hospital from her rectum.

This is considered normal, even with some mucus or blood. She might continue to have some mucus bowel movements for some time. 

I hope she continues to recover well ??

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


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

Oh ya, The hospital bags are quite on the large size. I was walking around like John Wayne ? My stoma is a little below the waist. I go a size up. As long as the waist ain’t crushing. Joggers are always a good start post op. Nothing at the start is going to be what the stoma will be like when healed. I have seen a square cut out and stretchy material put in where the stoma is. Knowing someone handy to do alterations is useful. Great to hear recovery going good ?

ileostomy 31st August 1994 for Crohns


   
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sjlovestosing
(@sjlovestosing)
Joined: 6 years ago
Posts: 651
 

@momof2 

Hi! As always, I am coming to this late, but first I want to say "bravo" to your daughter for taking this step in her life. It's never easy, but tough decisions never are. Also "hats off" to you for being such an encourager and support system in her life. 

In regard to clothes, when I first came out of the hospital, I had bought some maternity pants and a loose fitting top. The swelling will take a few weeks to go down, but it will go down! Now, I wear stretch jeans or leggings that come above my little friend. I still prefer a loose top, but I have seen many pictures of other ostomates who are able to wear the clothes they wore before. There are a lot of good fashions tips here and on other web sites.

Don't hesitate to keep asking questions, seeking answers, and listening to the advice of her ostomy nurse. She or he is definitely your friend!

Wishing you both God's blessings as you take this journey.

Stella


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 369
 

@momof2 yoga pants were my uniform for a long time after my surgery. I can wear anything now, but it takes awhile before you give up the comfort pants. 

There is a lot of choice when it comes to ostomy appliances, and it does seem overwhelming at first. Like anything, the learning curve is steep at the beginning, but it does level off. The ostomy nurse is the person who is most likely to be helpful at this point. As Eric alluded to, diet is something that will need close attention now. Again, the ostomy nurse will help with that, but a visit with a dietitian might be a good idea too. 

And yes, the hospital appliance is not likely to be the appliance of choice. All the companies will send you samples if you ask for them, so this is a good opportunity to try everything. 

All the best to your daughter, and her wonderful, caring Mom.

 

Laurie

Just a semicolon


   
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(@momof2)
Joined: 2 years ago
Posts: 37
Topic starter  

Still doing pretty good over here.  Still getting low and thicker output but not dehydrated so that is good.  

 

Total dunce moment in that after we rolled up the opening and fastened the velcro but we had no idea that you could fold the bag a little more and tuck it into that extra flap thingy on the bag.  It was a game changer for her.  They really should show you that in the hospital.  

The oral rehydrating solutions continue to be a bear.  Tomorrow I am going to let her switch over to water and make sure she eats a bag of chips or so and see if that makes her and her system a little more content.  

A couple of weird white hardish things came out in her bag and puzzled her.  This actually happened right after her stoma was really quiet for a few hours.  No pain or nausea or anything but now of course we are wondering what she ate that could explain this.  I know we are not even a week out yet but really can't wait until all of this is old hat. We are starting to sound crazy!   


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
 
Posted by: @momof2

A couple of weird white hardish things came out in her bag and puzzled her.  This actually happened right after her stoma was really quiet for a few hours.  No pain or nausea or anything but now of course we are wondering what she ate that could explain this.  I know we are not even a week out yet but really can't wait until all of this is old hat. We are starting to sound crazy!   

Is she taking any medications. I have had some pills come out in my bag. Some my body deals with just fine. Others come out while or partial. That could be the white hardish things. 

And yes, folding the tail up makes a huge difference. 

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


   
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(@momof2)
Joined: 2 years ago
Posts: 37
Topic starter  

Ahhh yes!  She is still taking her Xeljanz.  Maybe that is it! 


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 
Posted by: @momof2

Ahhh yes!  She is still taking her Xeljanz.  Maybe that is it! 

This might be helpful: https://www.veganostomy.ca/medication-supplements-ileostomy/

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


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1496
 

@momof2 ... I've been reading along here. Know that you have great advice going on for your daughter & she is so fortunate your so on the ball over this with her. Support is a very great benefit to a good recovery !  

The nurses likely don't wear a pouch so they would not likely know about rolling it up more or why it can be important to Ostomates. I can't do that with the model  I wear so I have taped it up before too. At night I get poked by the corners on my velcro roll up.  I sew, so I cut the longer double layer  of elastic top off old odd tube socks.  I  sewed across the bottom cut edge, it made a small padded sock for the end of my pouch.  It works great & It Only came off once but  I was wearing my leggings. 

Eric has a good video on Pills & such. Always make sure you ask about time released pills even in vitamins. I have a 2 - 3 hour pass thru time for anything I eat or take.   If  Pills aren't time release you can cut them in half or even smash them for absorbing purposes.   But do check with the pharmacist first. I have found countless UFP's ( Unidentified Floating Pills)  in my pouch output. Its important  & good that your paying attention to that. Especially if its  antibiotics or pain meds. Never hesitate to bring this up to the          prescribing doctor.  You'll find food can be identified also if there's not enough chewing & breakdown done while eating.  That can mean absorbing issues also.  The 1st few months after an ostomy a food journal can be so beneficial for that purpose especially when adding new foods.  

Hang in there you guys,  keep your spirits up & from where I sit, Your Doing Great!  

Linda


   
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(@momof2)
Joined: 2 years ago
Posts: 37
Topic starter  

Ok gang!  I think we got a little cocky.  We were quite proud of ourselves with no leaks!  Haha karma got us.  

She went for her post op two week check and they said there was some separation around the stoma.  It’s like a crater around the stoma.  So stoma nurse said use the powder and then cut some barrier stuff (from Hollister) and put that over skin and around stoma and then apply pouching system.  It worked fine when she did it but then we tried and leak!   The stoma definitely got smaller but we cut the pouching flange the same old size to fit around the broken skin. Maybe we cut too big?  Maybe we cut to size if stoma even if skin around has issues?  Am I right here?  

The other issue is she is still having BM’s the old fashioned way.  She has a loop ileostomy. Is this normal?  Her surgery was in 4/20. We figured the first week there was residual stool. Then she was passing blood and mucus.  Figured of course she is, she still has Crohn’s. But last few days full on morning BM.  Has anyone had this?  Is it because she still is connected in a way?  Does some stuff slip by the stoma and make it’s way to colon? She is planning to send a message to GI and surgeon but they take awhile to respond so thought we would check here. 

Last question.  She mentioned being itchy after todays change. Does that mean we did something wrong?  Her stoma did get active after we put the barrier film on and we cleaned up as good as possible.  Maybe we should have started all over?  We are still on the road and haven’t gotten her supplies yet so trying to make supplies last which I am sure is a recipe for disaster. 


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

Hi, on the question do you cut to the size of the stoma Yes always. Sounds like the nurse was using stoma powder and a barrier ring. The leak could have been the result of over applying powder. Think of it this way the excess powder causes a weak point. Use all products sparingly. On the itching, yes it may be the wafer it saying I needed changed sooner. All this is very daunting especially when away from home. But it sounds like yer doing great ? both of you! On the mucus, Any one still having the tail end will get muscus. On the poop i will let other members answer. ?

ileostomy 31st August 1994 for Crohns


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 543
 

Lots of new things to try and learn. For me, the Adapt Cera barrier ring works well and is good to the skin around the stoma. It evens out the area around the stoma, keeps leaks at bay, and feels soothing on the skin. As things proceed with your daughter’s healing, you and she will find products and tricks/techniques that work for her and that she likes.  Best wishes to you both. LL

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


   
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(@momof2)
Joined: 2 years ago
Posts: 37
Topic starter  

Well now she is running fever of 102.  Called the on call surgeon and 3 weeks out from surgery they are not concerned with infection.  They say if it keeps up go to PCP but we are still on the road.  So we will watch and if it goes up to 103 maybe swing by the ER.  She does tend to get "inflammatory" fevers with her Crohn's and since that is still not technically controlled I guess it could be that.

 

In other news, I am still friendly with old GI and nurses from way back when she was dx'd.  One happened to text me today so I asked about the stooling and she asked GI.  He said, "not abnormal". so at least there is that. 


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1496
 

@momof2  ...The good and the bad in  all of this & for you two Momma !  Your doing well & its a very  important role in this journey with her.  Its hard & exhausting work  caring for someone recovering from such a huge life saving surgery!!  I hope you had a good Mothers Day anyways & was able to do something, even small to mark your day.   Continue to follow your gut feelings and do what you know is best for her even if for peace of mind! 

 Don't hesitate to ask the Stoma Nurse for a few supplies.  You just never know what leaks can do to the sensitive skin below the wafer so extra supplies are important to have on hand even at home.   If you can...  eventually  try & build up a small stock pile & stay ahead on it.  I am rotating 3 months worth but even 1 or 2 is great.  I once had to change my pouch 7 times I one day.   Some winning warriors here can say they've done it more.  I was new to an Ostomy at the time & was so grateful I had a bunch of samples,  but I sure learned from that experience. 

 

Linda


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 

@momof2 It's a process in the beginning, so I hope you two aren't discouraged with the ups and downs! 

Keep an eye on that fever. I've also had fevers due to Crohn's, but since she's recently had surgery, it's hard to know what's actually causing it. 

If you are using powder, I suggest applying enough to cover the affected area, then dust it off, so there isn't any excess sitting on the skin. Most of the time, you'll want to use some kind of barrier wipe or spray to give barrier rings/wafers a better substrate to stick to after using powder. Similar to what you'd do with the "crusting technique". 

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


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 369
 

@momof2 I agree with what the others have said - hang in there; it will get easier. You have an incredible ability to find and use whatever resources you stumble upon. You’re ahead of the game for that reason alone. Keep tapping into the knowledge base through the professionals you have met along this journey; we on this site can only offer our experiences, which may or may not be in accordance with professional advice. But I can only admire how tireless and creative you are in your pursuit of answers. Hope you had a lovely Mother’s Day - you get my vote for mother of the year!?

 

Laurie

Just a semicolon


   
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(@stella)
Joined: 3 years ago
Posts: 82
 

Hi Momof2, how's your daughter today. Is she getting better? 

Eric's video about crusting technique (using the powder) help, I learned from that.

Eric also a video: Healing the Skin around the Stoma – OSTOMY TIPS (w/ Video) This helped me a lot as well.


   
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