UOAA Discussion Board

Richard and karen, again, thanks so much for all the ways to make it easy to drain the bag. I have one on today, and will be doing it soon, I'm sure, so I will be trying all of these things.

Just talking about it with people who knows what I'm going through helps. Thank you again..

paua

One thing that I do when rinsing the pouch out with water, is to close the tail completely after I've put the water in... Then, I "swish" it around to make sure I'm getting everything, then I pull the tail back up, open, and slowly pour the water out. Sometimes I'll rinse 2-3 times to make sure I'm getting everything...again, for me, a good rinse feels like a fresh clean pouch.

David

Paula:
Swishing and draining the pouch. You will get the knack of it.

I will attest that my early days with swishing and draining the pouch were not pleasant nor as simple as the videos on You-Tube showed. At first . . . I cried. And fumbled. And had messes to clean up.

And then . . . one day swishing the pouch with water and draining “clicked” as I learned the skill. Swishing and emptying a drainable pouch is like learning to ride a bicycle or learning how to snow ski. There is an aspect of fine motor learning and dexterity involved.

DaveOT gives good advice in suggesting 2-3 additions of water to the pouch.

Add about 1/4 cup/2 tablespoons of water to the pouch through the tail with a squirt bottle; securely close the tail; swish and swish the pouch contents; empty. Repeat 2-3 times. A clean pouch can provide a psychological boost and restore a sense of dignity.

Emptying the pouch sooner then later is also helpful. Do not let that pouch get too full. Emptying the pouch when it is 1/2 full or less works best for me. Emptying the pouch when it is 1/3 to 1/2 full is easier for practicing and learning. The more full is the pouch the more likely the potential for an unintended overflow and a mess.

This will get easier for you.
Karen

Button wrote: 2019-04-15 13:07:42 Emptying the pouch sooner then later is also helpful. Do not let that pouch get too full. Emptying the pouch when it is 1/2 full or less works best for me. Emptying the pouch when it is 1/3 to 1/2 full is easier for practicing and learning. The more full is the pouch the more likely the potential for an unintended overflow and a mess.

YES! Emptying a full pouch is not for the rookie ostomate...heck, it's hard even for seasoned ostomates!

Karen and Dave, I've done it today and it wasn't as bad as the first time. I do rinse with the water about 3 times, even though cleaning the tail end of it, I do it again and again, so I can feel its clean and I can put the clip back on. And yes, it makes sense not to let the bag get too full. My anxiety is that I believe that it will be very hard to go places, even though I'd probably use a disposable bag then, but the problem is that it fills so quickly, but I'm hoping as Karen said, that the output will be less as times goes by.This is very new to me, even though I had the colostomy, and sometimes I do get down quite a bit. But, as I said before, I'll get used to it, just like everyone else, just need time. It sure helps to talk about it.

thanks again

paula

It does help to talk about it.
This is a wonderful place to do so.
Lots of tips and tricks.
As time is going by we all get the knack of it.
What works for each of us.
The biggest thing doesn't even involve the appliance!
It is how well one feels. Seriously.
Even though we have this it gives great relief to many people.
It's not where any of us (most) thought we'd end up.
But it's not bad at all. Just a different way to poop. Lol.
Richard.

paula wrote: 2019-04-15 14:26:09 I've done it today and it wasn't as bad as the first time.

My anxiety is that I believe that it will be very hard to go places, even though I'd probably use a disposable bag then, but the problem is that it fills so quickly, but I'm hoping as Karen said, that the output will be less as times goes by

Paula:
Bravo on today’s success !

Build on small successes.

I have previously mentioned Immodium as a adjunct for slowing ileostomy output. Imodium gave me the gift of peace of mind in being able to leave the house.

While you are still in the “getting to know you” phase of living with your ileostomy . . .

If you have a planned outing or appointment, avoid eating a full/large meal before you go. Best to snack or graze lightly before a planned outing. As an extra measure, take an Imodium tablet before you head out the door.

We have all been where you are, at one point or another. A new ileostomy can be a high maintenance experience. But soon caring for your ileostomy will be second nature to you and less a source of apprehension.

Keep on keeping on, you are doing A-OK
Karen

Yes, it seems like its getting a little easier, have not tried the Imodium yet, as I've only been out for walks in the park, etc. Not really ready to go to parties or restaurants, still weary of that and also I'm still quite weak, from losing a lot of weight, and not being able to put any of it on, even though I do eat. Can't wait for the time where all this will be a routine, just like when I had the colostomy. But, all of your advice has sure helped, and thanks again for taking the time to talk to me.

paula

Paula:
You need not equate strength with gaining weight.

As a physical therapist, I worked with many a person who was weak and deconditioned with muscle disuse from inactivity. And overweight.

You are several months now out from surgery and will need to make a conscious effort to engage.

I am a petite little gal, 5’2” and 85 pounds. But make no mistake that I am strong. I was a former marathon runner and have an innate desire to move, despite my compounding illnesses. Moving and keeping active within my tolerance serves an important role in keeping me emotionally sound. I have advanced avascular necrosis of my hips and am not a candidate for hip replacement surgery. I stand and walk by the grace of pain relief through opoids. There is nothing easy about living with serious chronic loss of health. I am on Palliative Care (a medical model of care and comfort, for individuals with life-threatening illness). My future is not bright.

What can you do to begin to improve upon your strength?
A. Walk, walk
Walking requires no special equipment or gym setting. Put on a pair of comfortable shoes and head on out of the door. Do you have a dog/pet? If so, recruit your dog/pet to be your walking buddy.

B. Elastic resistive bands
Elastic bands come in different levels of resistance - from easy to more challenging. “Thera-Band” is one brand of elastic resistive banding. Thera-Band and similar products are available on Amazon. Inexpensive and affordable.

As an exercise, resistive elastic bands can be used in a wide array of strategies to provide for focused muscle strengthening. There are ready booklets and websites that offer exercise routines.

C. Hand held bar-bell or cuff weights
Amazon has a large selection of bar bell and cuff weights from as low as 1 pound. Smaller grip circumference for women. Silicone coated. Colorful colors to brighten anyone’s workout.

D. Climb a flight of stairs

D. Upper extremity push-ups, standing at a wall.

Position your body about 14” away from a wall, arms extended in front of you at shoulder height, hands/palms on the wall in front of you. Lean your body into the wall, nose approaching the wall, flexing at the elbows, maintaining feet flat on the floor, breath out. Pause. Reverse. Push with the arms, firmly extending the elbows, moving the upper body away from the wall. You have completed a standing push-up. Repeat.

E. Sitting knee extension to strengthen quadriceps/thigh muscles

If you are feeling low in physical strength and accompaning low in emotional mood a referral from your physician for a few sessions with an outpatient physical therapist might be just the spark that you need. A physical therapist could provide you with some initial sessions to garner some strength and motivation, as well as provide an individual home program.
Karen

Good morning, Karen, once again, thank you for all the information. I will take all that in account and do some of the exercises you mentioned. At the moment, I think I'm a little paranoid, I'm just afraid to do stuff that might injure my stitches (which are fine and healed) or the ileostomy. But I will try. As far as walking, yes, I've been doing that, we're (my husband and I) starting to walk every day in a park near us .

I do own bar bells, as before all this, I used to do pilates and yoga (beginner's only), but have stopped since getting sick. I'm going for a check up tomorrow, and bloodwork, to see how it's all going.

You are an inspiration to me and I'm sure to many others, as it seems you never give up. Some people say that I'm also a strong person, but I don't really feel that way, but feeling a little bit better every day.

I'm also petite, 5"1 and now about 85lbs, if not less, used to be about 100 a couple of years ago.

Again, thanks for everything and have a good day.

paula

Hello there, just an update on emptying the pouch, especially to karen, richard and dave who've been so helpful. Even though, I still do not like it, lol, I am doing it and think I got the hang of it. Still a lot of output, so having to empty many times a day, which is fine for now, as I'm home. Saw my surgeon and mentioned to him that I have not gained any weight, and he told me to take imodium in the morning and night, as since the output is so much and immediate, that might be a factor in the weight issue. I'm just not sure when to take it or for how long, as I don't want to stop it altogether.

Karen, I have been doing the exercises you mentioned, and going to the park for walks with hubby, Hoping you're all doing well.

Thank you........................paula

I know you are still recovering, but don't let the ostomy impact how you want to live. I've had my ostomy for over 10 years now, and every time I thought that an event or activity wasn't doable, I was wrong. There are ways to adapt to your new plumbing in all of your environments. Heck, a year after my surgery, I went elk hunting in Colorado for 2 weeks...in a tent...and I irrigated the entire time! It required some forethought and planning, and with some 20/20 hindsight, I have even more ideas/adaptations that would make it even easier the next time.
As we mentioned in other posts, carrying a water bottle in your purse is an easy way to be prepared for anything that might come up. Most times, I have my wife carry one in her purse (she doesn't mind, I married up!) if we are going to eat somewhere that might induce a bowel movement... for me it's pizza, Chinese, and seafood restaurants. I think oils from cheese, fish, and things cooked in peanut oil set my system off. But, I'm prepared and can handle the situation...more than I ever thought I would...especially at the beginning.
The one thing I will stress is that this is a marathon, not a sprint...keep your pace!

David

Paula:
I have written suggestions about Immodium on your two threads.

Basically, take an Imodium tablet 30 minutes before a meal. That is a comfortable starting place.

You will learn you works for you in terms of dosage and amount, as we all have unique timing as to when our ostomy is more and less active.

Some people take upwards of 8-10 Imodium a day to quell hyperactive motility.

A typical ileostomy will have fairly constant output throughout the day, with some intermittent periods of quiet/no output. Draining a pouch 6-8 times a day would be considered typical for an end ileostomy. An ileostomy will never be like your colostomy where you may have tended to changing your closed-ended pouch twice a day.

Emptying the pouch when it is less full is my personal option to make the draining process less of an ordeal. I likely drain my pouch 8-10 times a day. Less output volume in the pouch makes draining the pouch easier and quicker.

Honestly, draining my pouch is no longer the Big Deal that it was when my stoma was new. Emptying a drainable pouch is like any new learning. It times time to master the skill, but once accomplished it becomes commonplace. What is difficult today will not be difficult in the days to come.

Keep challenging yourself and stretching yourself to engage in life. It can be easy to slip into a form of “learned helplessness” when we are confronted with an illness/surgery that has a longer recovery time. Challenge yourself in new ways to reclaim the life that is yours.

When I need to gain weight, I find it easier to intake liquids that are higher in calories. Chocolate milk is my favorite. A quart of whole chocolate milk has 900 calories. Carnation Instant Breakfast is my other staple item. Baked custard, pudding, yogurt, and smoothies are other foods that I favor when my appetite is low. Grazing and snacking are easier for me than a formal meal setting.

You can be strong and yet petite in body frame. Strength is a mind-set that accompanies compassionate self-care and regular exercise.

The body is meant to move. In moving and exercising the body, serotonin and other vital endocrine hormones are released, and our emotional health is uplifted. The mind-body connection reinforces this cycle of well-being.

Best wishes - in all ways - as you continue forward,
Karen

Hi, Dave and Karen, once again, thanks for replying. Dave, I can see you are an adventurer, me, not quite as much. Dave, I don't know if you've seen my posts about having a colostomy for 16 years, that's why I'm having a little difficulty now with the ileostomy.

However, as it happened with the colostomy, where in the beginning I thought I wouldn't be able to handle it, and of course now was just part of me, I will do the same with the ileostomy. I also think I'm having a harder time, as I was pretty traumatized in the hospital this time, being in intensive care for a long time, going through 2 surgeries, etc, and still dealing with all of that.

But, I am taking all of your suggestions and they have helped a lot, Karen, yes, I know you have told me about the Imodium several times, and this is why I mentioned it to the doctor. I had taken it before a meal, as you suggested, but he told me to take one in the morning and one at night. I just need to figure out when and how many to take, if needed.

My husband and I used to travel a lot and go out quite a bit, so we are working to do that again. I'm not one to give up, and are doing everything I can to get there, its just taken me a longer time, this time, as my body went through a lot, and even the doctor said I need to have patience. But, again, just being able to talk about it here, has done wonders. Thank you...............paula

Paula:
Your timeline for healing and recovery will be your own. There is no competition with anyone else. There is no judgment.

I can attest that recovery from even small health speed-bumps is getting harder as I age. My Addison’s disease lands me in the hospital a few times a year. Getting back to my baseline of daily function has become noticeably more difficult, year to year. I have always been resilient but am no longer able to source the same inner drive.

A prolonged hospital stay can have lasting psychological effects, similar to PTSD. The release of high stress hormones can affect the brain’s chemistry in the months following. Invasive procedures, influx of medications, and time in the ICU can be traumatic and can be imprinted in the deep brain centers (amyglya and hypocampus) that affect the autonomic nervous system. Startle reactions to sounds, distressing dreams, hypervigilence, wanting to stay cocooned at home - are some ways in which the stress of a prolonged hospital stay is expressed.

It can be helpful to talk with a psychologist to process the effects of a prolonged hospital stay. Talk-therapy is more than casual talking.

I had a prolonged hospital and ICU stay when my intestine perforated in 2011. An inpatient stay of 65 days. I did not emerge from the hospital as the same person.

So I can definitely relate to your feeling unmoored and a bit lost since you have been home.

Re-establishing a routine to my day was an important part of recovery. The beginnings of a routine gave a me sense of structure and renewed purpose.

I gave attention to self-care. A fresh hair trim. A manicure and pedicure. A new and comfortable outfit other than pajamas. Such things provided a hint of freshness and uplifted my spirits.

I hired a caregiver for the first several weeks that I was home. We got in the car and went for a short road trip almost every day. Just to get out of the house and to see new scenery.

Try to find something to plan for and to look forward to on your calendar. I got tired of seeing only physician appointments populating my calendar. I would plan one thing a week. A trip to the Japanese Gardens (a unique outdoor setting in Portland, Ore). A trip to the local zoo. A trip to the shopping mall. A trip to a bookstore. Identify a few local places of interest for you and your husband to visit.

I am, more or less, just chatting along with you. Take what seems relevant to you and disregard the rest. Above all, take recovery at your own pace.

You are doing A-OK.
Karen