Any suggestions for my mom? Help needed.

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U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 986
   Posted 10/10/2017 7:01 PM (GMT -6)   
My mom is almost 81 years old and has had an ostomy for 14 years. As far as I know she hasn't had an examination since and doesn't have a GI.

For the longest time she's had problems with the bag bursting, however, it's gotten much worse over the last year. She has tried all available products, tapes, bags etc but her bag bursts at least once a week. Yesterday 3 times and today in a store. She has become extremely anxious about going out and eating....as anxious as I am with my diseased colon....it's hard to watch her suffer. Sometimes she tucks a towel in her undies just in case of an accident. She's also not wearing dresses anymore and doesn't want to go out for her b'day dinner incase her bag bursts. My mom empties her bag 3 times a night and within 20 min after eating.

She's finally spoken to her doctor about getting a referral for a GI. I think today was the final straw.

Any suggestions as to what could be wrong with her anatomy? (It's 100 % not any appliance or application)

Thank you.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16731
   Posted 10/10/2017 7:21 PM (GMT -6)   
How does it burst? At the seams? Does it leak under the wafer? Does it pop off the wafer (like too much gas)? The bags are made to handle a lot actually. I only had one pop off ever and it was my own fault. I've had some pretty severe gas in the night too and never had one pop open, even when the bag was nearly 100% full with air. I am not doubting your mom's situation, just trying to get some more details so we can attempt to figure out what is happening. Is it high output? Or just needs to be emptied immediately after eating - fast transit? How many times does she empty in a day? I feel bad for her. It's stressful when things don't work as intended, especially when it comes to poop. At 81, it would be good to be able to get out and celebrate a birthday, but I can understand being wary if you're prone to bursts. What products does she use? One of the big companies? I'd think any mainstream product should be a workable option.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 986
   Posted 10/10/2017 7:53 PM (GMT -6)   
Thank you!

I only know she uses coloplast

I'll ask her the rest of those questions & get back to you! I realize I didn't offer much info but I wasn't sure what to ask hersmile. I just empathized.

blksteeda
Veteran Member


Date Joined Dec 2009
Total Posts : 1709
   Posted 10/11/2017 9:00 AM (GMT -6)   
Has she measured how much output lately? I know anything over 1200ml in 24 hours should be checked.
43 Male, South Florida

10/14/15 - J Pouch step one complete

2/10/16 - Takedown and very happy with my J Pouch

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 881
   Posted 10/11/2017 10:06 PM (GMT -6)   
UB,

Just Checking on you.

I am so sorry your Mom is having this issue. Once we get a little more info maybe we can think of ways to help.

Please remember to take care of yourself during all of this.

Hang in there!!

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 719
   Posted 10/12/2017 10:37 AM (GMT -6)   
So sorry to hear about her challenges. It must be tough emotionally but also physically at her age.

I definitely suggest taking her to a doctor. Most have ostomy nurses in their practices who can help her try a new bag, etc. I use convatec and love them (as much as I can love a bag). The nurse can help triage what is wrong, where the bag is leaking, etc. I'm sure they have a lot of new technology out there since your mom got her ostomy years ago.

Good luck and hang in there!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 10/12/2017 3:10 PM (GMT -6)   
Hi! I was going to tell you to have her switch to Coloplast Sensura bags, but you said she is using Coloplast. I had two bags break on me when I was using Hollister. They would split at the seams. Does she have an ileiostomy or colostomy? I have an ileio, but I understand people with colostomies have a thicker output. Best to have it checked out.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 986
   Posted 10/12/2017 4:00 PM (GMT -6)   
She has an ileo. I haven't had a chance to ask her direct questions but I do know she's had a stoma nurse come over and have had every bag available all to burst. It's not the bags, somethings wrong with the stoma or internally.

Would a hernia cause this?

Thanks everyonesmile
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10559
   Posted 10/13/2017 6:45 PM (GMT -6)   
Like nssg, I'm confused by what you mean by bags 'bursting'. I've had bags absolutely full to straining point, but none of them have burst. Once a wafer popped off and the contents spilled all over me and my bed, but that was my fault: I just couldn't be bothered getting out of bed to empty the bag and left it too long.

Modern bags shouldn't burst and they don't easily tear or rip. Most leaks occur somewhere along the wafer - the wafers are more of a weak point than the bag.

If your mum is emptying her bag 3x a night that sounds like she might have high output. There is a technical definition of high output (it's having more than 1500ml of output in 24 hours, I think), and the stoma nurse ought to measure it. If she does have high output, the GI needs to find out what's causing it.

The stoma needs to be checked as well. If it's too retracted or lies too close to the skin, that can be a big problem. Stomas ideally should stick out by 1 to 1.5 inches from the stomach. This makes it much easier for all of the output to empty into the bag, instead of some of it getting trapped underneath the wafer.

I don't think a hernia by itself would cause leaks. But if it changes the contour of the stomach in such a way that the wafers no longer lie flat or have wrinkles in them, then, yeah, that could cause leaks. Likewise, if your mum has gained or lost weight - that could change the shape of her stomach or the size of her stoma. One thing the stoma nurse ought to take a look at is the hole in your mum's wafers and how well it fits around the stoma - does your mum cut her own holes or do the manufacturers do it? It's important to get the hole to fit the stoma as closely as possible.

Good luck, UB. I'm glad your mum is seeing a GI, because she shouldn't have to live like this.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1267
   Posted 10/13/2017 8:47 PM (GMT -6)   
She can take liquid Imodium ask her doctor about it .

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 986
   Posted 4/16/2018 2:44 PM (GMT -6)   
Hi everyone,

Just an update:

I'm taking my mom to see a CRS tomorrow (finally!) to get this issue sorted. She definitely has high output and the bags still "burst". I'll find out tomorrow if she means the wafer is coming loose or what specifically she's referring too.

I hope this Dr can help her.

Will let you know how we make out.
UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Current: 2-3 on Stelara!

IVIG on occasion.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16731
   Posted 4/24/2018 10:18 AM (GMT -6)   
How did it go?
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 1027
   Posted 4/24/2018 9:20 PM (GMT -6)   
What do u mean when u say bag burst??? Is it mostly gas in bag?? Or stool??? Or combo??

Swish
New Member


Date Joined Apr 2018
Total Posts : 5
   Posted 4/26/2018 12:55 PM (GMT -6)   
Girdles!!! I can’t live without one now. My skin is dry and no bag sticks well especially after 3 Days. So a tight girdle holds my appliance closer to my skin, takes some of the weight when there is output and doesn’t interfere with the pouch...the pouch fills even if the girdle is ‘tight’. I keep my underwear low and the girdle covers the appliance. Love them girdles! I even wear one swimming to keep everything close.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 986
   Posted 4/26/2018 4:28 PM (GMT -6)   
Sorry folks....I got the date wrong!

Took her this week and got clarification. She doesn't mean the bag itself bursts....it's the wafer that comes lose. She feels pulsating in her stoma and then she knows it's going to dislodge with stool coming out. Overall it's been more settled the last few months but last year it could happen 3 times in one day. The doc recommended taking imodium at night to deal with her high output. She's emptying 3 times at night at 8-10 times during the day. The stoma nurse said that it looks good with enough of it sticking out. She also recommended trying the belt especially at night but my mom had trouble getting it on/off so she gave up. At 81 her dexterity/eye sight aren't what they used to be.

My mom has been complaining about feeling slight pain and bloating after each bag change. The doc suggesting doing some tests including a scope but my mom abruptly dismissed that for fear her hemophilia will come back. I don't blame her for this.

She's refusing to take imodium saying that she's dealt with this for 14 years....in the end the Dr. just said she could take her recommendations or leave it but if she continues to have pain to come back and she'll arrange a CAT scan.
UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Current: 2-3 on Stelara!

IVIG on occasion.

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 282
   Posted 4/27/2018 8:49 AM (GMT -6)   
You know, all this sounds like a simple application education. If you take the time to view the many videos on You-Tube I'll bet you will get 5-7 days a wear time out of the appliance. Once you get the ear time nailed down then your skin will heal as well.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 986
   Posted 4/27/2018 7:42 PM (GMT -6)   
Tom--thank you but I think you misunderstood. My mom doesn't have skin issues, nor is this an application problem. She does change her appliance every 4 days....unless the wafer dislodges.
UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Current: 2-3 on Stelara!

IVIG on occasion.
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