1. Fecal incontinence
Accidental leakage of liquid and/or solid stool, with inability to discriminate gas passage from stool passage;
inability to pass gas without also passing stool and
therefore requiring additional bathroom trips
2. Soiling
Involuntary staining of sanitary items, pads, or underwear with fecal material
IPS Symptoms
“It’s not just gas itself, but there’s always stool when it comes to the gas. If you can’t find a bathroom, and you’re trying to hold the gas in, that’s where accidents happen.”
“My intestine is like a leaky pipe, and the feeling is that the pipe isn’t shut tight.
Sometimes I address it in time and then sometimes I am late…it’s embarrassing.”
“It gets better with time. Now I find that I can hold it for almost as long as I need to:
it might be painful, but if I’m in a car ride and there’s not an exit, I don’t freak out.
It might start to hurt, and I really might need to find somewhere to stop because it’s painful, but…I can hold it if I need to…
[after 2 years of practice].”
“It is as if my anus is open and will not close, it leaks even if there’s no need to
have a bowel movement.”
“I stain my pants every time I try to pass gas, forget about white clothing.”
“Cannot tell if its just staining or if my skin is just raw but there is always something there and I worry that it will leak though.”
3. Urgency
Inability to defer BMs for a sufficient time thus needing to rush to the toilet to have a bowel movement
“I’m four years [since surgery] and I still have a lot of urgency, but now I’m very good at holding it in. I never have an accident, but it’s very uncomfortable to the point that I’m chained to the bathroom.
There are days that I do wish I still had my ostomy bag.”
“The first year and a half was absolutely wretched, because you can’t plan on car trips. I had a 2 hour car trip on a regular basis, and I’d have to stop sometimes 2 or 3 times just in that car trip because of the urgency. And I also didn’t have the confidence to hold it in. Now I can do
better.”
(Frequency continued)
“Now 28 years out, I expect … 5 to 8 bowel movements a day .The frequency is something that you need to deal with. You learn to live with it.”
“After I would eat dinner. I would have to go to the bathroom…5 times in a row.
Or if I was out with friends I would be
embarrassed [because] I would need to go to the bathroom ,and then I would need to go again. The need for repeated trips to the bathroom, especially if you’re out with people – and the attempts at going as many times as you need before you leave the house so that maybe this doesn’t happen, is challenging.”
4. Frequency
Unpredictable and/or excessive number of BMs
5. Clustering,
Fragmentation and Incomplete Evacuation
Pouch emptying patterns that require multiple trips to the bathroom within a short time frame or a significant time spent there to feel fully emptied
“I have to get back o the toilet again after a few minutes after a previous movement.
That’s my life. Typically, I…have about 10-15 bowel movements a day, and maybe
3 to 4 cluster right before I leave the house in the morning.”
“I’m 30 years in, I have to sit down to go again soon after a prior movement. It’s really aggravating when that happens: I think I’m done, but then I have to go back out to the
john and drop whatever I’m doing with family or friends. When I have to go back again 2 or 3 times,…it gets frustrating.”
“I try to empty my pouch and it never feels empty. Fifteen minutes later I have that urge
[to empty] small dribbles all over again.”
6. Uncomfortable Perianal Symptoms
Discomfort, irritation, soreness,
“butt burn”, “bottom pain,”
especially with passage of stool or cleaning after passage
of stool
“If I’m going 6-8 times a day: if it’s painful, then those are the worst days…Even when you put on the cream it takes at least 15- 20- 30 [min] or an hour to work.”
“Early on, the pain more significant in the rectal area. Even now, [year 3 postop]
the butt burn, the actual pain around the area can be pretty significant. I’m in some Facebook groups and I see a lot of people asking about that constantly.”
7. Nocturnal Symptoms
All symptoms above requiring trips to the bathroom during the night
“While I don’t have the incontinence, I am waking up at least once at time during the night to go the bathroom regardless of what I eat and when I eat it.”
“When I’m sleeping, I’ll wake up every hour for the first 4 hours.”
“I have had fewer than a dozen nights of uninterrupted sleep (over 6 hours continuous sleep) in over 30 years.”
“I have to get up 2 - 3 times a night to use the bathroom, sometimes more…lack of sleep is exhausting.”
1. Pad Usage
Use of pads due to fear or accidents or accidents
2. Toilet Awareness
Need to plan activities (such as travel, concerts, parties, overnight stays, etc) around toilet locations and availability
IPS Accommodations or Consequences
“I wear a small pad daily, because of slight leakage.”
“I wear pads day and night due to incontinence.”
“I wear pads because I use skin
protectants like diaper rash cream every day for pain and they stain my clothes if I don’t wear a pad.”
“I live with the reality of being near the bathroom. Every public place, I would check for a bathroom.”
“It can really be bothersome if I want to go on a hike with some friends and I go on the hike for 3 hours. I’ll know I need to know where the restrooms are, or I’ll have to go [hide] in the forest. It’s more difficult because other people have a pattern, and I don’t have a pattern like that.”
“If you’re at a friend’s house, and you want to be in there for longer, then you become hyper aware. If you’re not close with them, and especially if the bathroom is close to the living room – they’ll be wondering what’s going on.”
3. Dietary and Medical Adjustments
Dietary changes or medical therapies used to help regulate pouch bowel function
“If I need to go or be somewhere for a long time, I eat a low residue diet to help me not go to the bathroom much.
Oatmeal and things like that will prevent me from going for a while. But once it needs to come out, I’ll have those several movements in a row.”
“I think you become more aware of how the food you eat affects you. You just somehow become much more aware of whether something you ate makes you I feel a certain way.”
“I have a whole list of medicines I take regularly…it makes a difference in my life.”
4. Alterations in Sleep and Energy
Altered sleep, diminished energy, chronic fatigue
“I want to sleep through the night, I try to eat dinner early. That makes a big difference.”
“For me, pain is less of a concern than the number of bowel movements and the inability to sleep through the night.”
“There are days when you’re a zombie. It’s how many times you’re up and how long at night…Exhaustion is huge.”
“It’s a negative impact for sure, but after a while I just say it takes 9 to get 8 [hours of sleep] when it comes to going to bed…
it’s just part of doing business.”
5. Negative impact on intimacy
Negative impact on sexual function, and/or intimacy and relationships
“I think there is that anxiety of whether I will go to the bathroom in the middle of things. And some of that can continue to be a barrier for a very long time.”
“It was not the sex that I was worried about. It was spending the night with somebody and getting up multiple times at night or having an accident while you’re sleeping…I wouldn’t sleep at all if I spent the night with somebody.”
“I had a lot of anxiety around sleeping over with someone. I would lay there awake for hours and [think]: ‘I have to go to the bathroom so bad but I don’t want to get up, because this person will know I got up and hear me.’”
6. Alterations in Social Roles
Need to adjust, modify or change jobs, social roles, education plans, etc
“I made adjustments. I work from home…I think I put myself out there a little bit less than I would have before knowing that I have to plan for bathroom breaks.”
“I avoid traveling to certain places where I’m worried about having an issue.”
“I haven’t had to switch careers, but I did change companies to [do work] that was less stressful. I want to move up, but I don’t want to not feel well: you have to choose.”
7. Negative Mental, Emotional and Psychological Alterations
Negative impact on mental, emotional or psychological health and well-being,
including, but not limited to, anxiety and/or embarrassment about difficult or irregular bowel function, abdominal gurgling, or fecal smell in front of others; concern about potential future pouch failure; distress caused by having a chronic illness
“I was diagnosed with UC at 12, and I was bullied a lot for being sick…it really affected my self-esteem and gave me a lot of anxiety. I know: once I had the ostomy and then once I had the J-pouch, things changed a lot. I felt like I’m not as anxious and I can just really be myself. So, since
[surgery], my confidence has gone up a lot.”
“I rebounded with the confidence in my physical ability to hold bowel movements…
but my self-esteem, self-confidence and body image -- that’s a big thing that I still struggle with.”
“I think the disease in itself is a very
isolating disease. In some way it becomes more so when you get a pouch and
everyone thinks and expects you to be cured but you are not because the pouch leads to a lot of new problems.”
“The thought of pouch failure is always in the back of my mind.”
