Ileostomy

[paula]

As some of you know, especially "betula" and 'button", after 16 years of having a colostomy, and being fine with it, I developed scar tissue and was operated on last month to remove it. However,it didn't go well and I had a second surgery. Was in the hospital for about a month and am now home recuperating for a long while. I have lost tons of weight and have no appetite. I eat, because I have to, of course, and things are progressing very slow, but I'm grateful to just be here.

I now have an ileostomy, and are having some problems with it. Its mostly liquid,even though I have these gel packets that solidify, but I'm having to change bags multiple times a day, which is something I didn't do before and could go anywhere. My question is to those who have ileostomies, is it always like this or does it change? I mean, as it is, I don't know how you can go out without changing bags every few hours. Any advice would be most helpful.

Thank you in advance

paula

[Diane C]

I had similar surgery but probably more. I have a post-surgical wound that is healing and, when at the Wound Care Clinic, I expressed frustration about what you've posted. I was given a quart container and told that if my output was more in 24 hrs, then action would be necessary due to dehydration. Was surprised I only filled 3/4 of the container.

I'm tinkering with Immodium (for diarrhea usually) and it does slow down output. I'm unsure how much I can take as I don't want a blockage -- so still experimenting. Think I finally figured out how to stop leakage (for now) and await Cymed MicroSkin products to arrive.

Embarrassing to admit but VERY often, I wear an irrigation sleeve under slack, a long skirt, or ALWAYS at night with pjs. (I am not in a relationship now.) I used to irrigate my colostomy so this is not new to me. I have found that Convatec are the most durable -- tho I soon will be using Cymed MicroSkin products and am not a fan of adhesive sleeves which don't last and can slip off so I'll see how I fare. When I wear a pouch, I'm forever emptying or concerned. Of course, irrigation sleeves don't go with dresses or skirts. When I need to wear those, I try to reduce output but have found when I do that, my system rebels. It's not just digestive waste that's coming out and I find that gastric juices and fluids that are more acidic and "oily" tend to exit if I haven't eaten so that's not a super solution. A snack or small meal helps. I had surgery on Nov 1 and still don't consume raw veggies or fruit although I've had a small bit of dried fruit. Almost everything is cooked and now I avoid dairy unless lactose-free. Unsure if dairy affects output?

Hydrating really does seem to help. Also, raw almonds -- chew well -- and thick oatmeal works to slow things down for me. Output is crusty. Bananas do not help -- even unripe. I finally ordered my first pouhes without a filter as they became soaked immediately. I'm now trying a lubricant to help the stool slide down.

I wish you luck with this. We're in the same boat! Eager to read answers. Oh, I was told to take Metamucial and it does thicken the stool but it's more fiber -- so I've been fearful of doing so. If I go this route, more hydration with Metamucil will be necessary.

Diane C

2000 MACE Procedure for Pelvic Floor Syndrome
2002 Colostomy
2018 Removal of above; Ileostomy; Removal of Rectum/Anus due to diversion colitis

[paula]

Thank you for your response. I'll take all of it in consideration. My surgeries were on February 13th and 20th, so still very painful and dealing with that as well. Still, very concerned about the ileostomy. If anyone out there has had one for some time, please let me know if this will change.

Thank you

paula

[Button]

Paula:
I have an end ileostomy and had a “super-crazy” volume of output for about 8 months. High volume. And rapid/quick.

I used liquid Imodium to ease the transit speed. Liquid Immodium was more effective for me than Imodium caplets. I would take Immodium about 30 minutes before ingesting a mini-meal or snack. That strategy had a noticeable effect on slowing my transit time.

Steer clear of concentrated sugars. Gatorade and Power Ade are sugar rich and not the wisest of choices. Nunn’s Tablets and CeraLyte both offer rehydration options that are compatable with having an ileostomy.

Most of my outings were short excursions. A car ride to get a change of scene. Walking the wide hallways of Home Depot (a great way to get in some walking as he shopping carts are heavy duty and there is always a bathroom nearby).

If you had bacterial contamination of the abdominal cavity or sepsis, you will have lingering inflammation and intra-abdominal irritation for some time. This also lends to a quickened transit time simply because the intestine is irritated and rebellious.

My recovery was a long slog. But honestly, most of the memories are a blur to me. Which is a blessing.

I know this is a rough road for you. I am genuinely sorry that the surgery to release adhesions took an unexpected turn. Take your recovery one day at a time. Schedule a few things that you can look forward to - schedule a pedicure or manicure; schedule a hair cut or hair coloring; plan a short trip to Nordstrom to browse for a new pair of shoes. Having something to look forward to on my calendar was helpful in keeping my spirits afloat.

Thinking of you, with a hug (because you deserve one)
Karen

[paula]

Thank you,Karen. yes, I am trying to take it one day at a time only, as I was getting quite depressed looking at the long recuperation ahead. I hate to say "why me", but I thought why after 16 years of having a colostomy, and it all went so well, I could go anywhere, beach, etc, why this now?, which seems I'm limited to just short outings, which I've been doing. You said you had a lot of output for the first 8 months, did it get better afterwards? Of course,its only been a couple of weeks, since I've been home, so I have to be patient, and be grateful that I'm here. I will take as always your advice. Thank you so much for responding, it always makes me feel better. How are you doing???

A big hug to you as well.

[Button]

Paula:
Your high volume and rapid transit time ileostomy output WILL decrease with time. Time and patience are your friends.

Attending to high volume output was almost a full-time occupation of my mind when I came home (I was hospitalized for a l-o-n-g time). I was emptying the pouch 10-12 times a day, even though eating very little, and 2-3 times a night. But as I found a routine, the task of emptying the pouch became less onerous. The mental fatigue lessened.

Around 8-9 months post-op, daily output was manageable. And I was able to sleep for longer periods. That was a huge plus. I was emprying the pouch 6 times a day and twice during the night.

Currently, I empty my pouch 4-5 times a day and once during the night. I prefer to empty when the pouch is about 1/2 full. am not a big eater.

We’ll have to ask to take a small informal poll here and ask how frequently others with an ileostomy empty their pouches to give you an expectation of what to expect. How often do other ileostomates empty their pouches on a typical day! Please chime in.

For now . . .
1. Use Imodium as you need to slow transit time.
Liquid Imodium was more effective for me then were caplets.

Take Imodium 30-45 minutes before you have a meal or mini-meal.

2. Limit your consumption of drinks with high fructose corn syrup. Limit consumption of drinks high in simple sugars (more than 15 grams of sugar per serving).

3. Avoid too much coffee (caffeine) and chocolate (flavonoids) as both can lead to faster transit or diarrhea. Certainly, you can enjoy 1-2 cups of coffee a day and enjoy 1/2 of a chocolate bar. Moderation is the point while the intestine is irritable.

4. Have an earlier dinner (say, 5 -5:30 pm) so that your intestines will be quieter as you sleep, fewer needs to empty the pouch during the night/hours of sleep.

Your mind will soften memories of your hospital stay and current recuperation. The mind is “smart” in this respect.

And as your intestines and new stoma settle, emptying the pouch will become a fairly expedited and simple process. It takes about 2 minutes to empty my pouch. No fuss.

Paula . . . No doubt, you are strong and resilient to have made it this far from the prior radiation and surgical complications. Things should continue to get easier from here forward. You’ve got this
Karen

[Diane C]

Paula,

I've learned that patience is KEY. My switch from a colostomy to an ileostomy occurred Nov. 1. My output is still frequent and heavy. I looked up the maximum dose of Immodium liquid and wasn't taking enough. Do check that out as Karen advised and experiment. I'm hoping it will help if I take more than just once or twice daily.

I'd guess I empty about 10x/day and often wear an irrigation sleeve. Many companies have "high output" pouches. I tried Convatec's -- actually the one where you cut off the spout but it had a filter (useless to me now as it gets wet immediately) and I found that the integrity of the pouch wasn't so great -- it ballooned too much.

The visiting nurse (due to wound care) brought me 1 box of Coloplast Sensura Mio Convex Flip 1-piece wafers/pouches. Disappointed as I looked forward to Cymed MicroSkin. Oh, well. Hope they'll adhere to my abdomen well and emptying won't be a huge issue. Also now have a good supply of Convatec Ease strips. They have comfortably helped with leakage.

Tonight, I'll use Brava Lubricating Deodorant to help stool slide down. When I sleep, it sort of pancakes around the stoma and can leak out. I have not forgotten Karen's words about a bed that raises up. I slide down with pillows.

I had tried Convatec's Diamonds which make the output thicker in the pouch. The visiting nurse also brought me a box of Cymed's Ile-Sorb absorbent gel packets which do the same. This may help with the number of times we both empty.

Looking forward to the time when I don't have a visiting nurse to dress my wound and can order what I want on my own. While she's coming, she must order products for me.

Wishing us both good luck!

Diane C

[paula]

Hi there, again, thank you Karen and Diane C for all the information. You don't know what it means to have someone who's going through the same thing and is good enough to share their information, which is so helpful., but also to feel all the support. Its truly helpful, as I am grateful just to be home, but lately really struggling with being positive, etc. I'm also still struggling with the surgery scars, so its both things, that's probably why I'm so tired as well. However, then I pick myself up and just go on. Again, thank you for your support..............paula

[Button]

Paula:
The experience of an ileostomy will be different than the experience that you had with a colostomy.

You did not expect to come out of your surgery with an ileosotmy, so I suspect that the newness of this unanticipated terraine is also affecting how you feel mentally and physically.

The emotional adjustments associated with my ileostomy took longer than the physical healing. My emotional struggles were more apparent when I got home then when I was in the hospital.

But I can honestly tell you that living with my ileosotmy now is no big deal. My ileostomy is well behaved and easy to care for. My ileostomy is A-OK. If I had the option to be re-connected I would say “no thank you.” My other health issues are far more limiting and concerning than is my ileostomy.

6 months from now you will be in a better place than you are now and many of the memories of your hospitalization will be softened.

Keep faith,
Karen

[Diane C]

Paula,

You are more than welcome. Change takes time to adjust to -- physically and emotionally. Even though my surgery was Nov 1 (and quite extensive), I find that I tire quite easily. I can't swing dance as usual because I broke 2 bones in my foot and stretched a tendon -- ugh -- but when I volunteer at the theater, I ache in my upper thighs when I stand for a while. This is new since the surgery and maybe because nerves were cut. I don't know. I DO know I'm fatigued. And I'm consuming protein powder and Juven with collagen and many healthy nutrients -- and eating well, hydrating, and taking other supplements -- but could fall asleep anytime anywhere. Healing clearly takes time and uses energy.

Btw, how is your hair? Mine is SO thin. It already was but it's more so. My pal, a nurse-practitioner, said this could well be due to the overall stress of surgery -- both physical and emotional. Collagen may help with that but my energy is flagging.

Am glad the sun is out. That is cheering! Good luck to you!

Diane C.

[paula]

Karen and Diane, again, always looking forward to your insights. It helps, Karen, that the output will decrease a bit, and that I will manage it better in the long run, it just takes practice and patience. I'll try to practice both. I think I'm just a little tired, after all that's happened, but I realize that there are people much worse, and sometimes feel guilty for even complaining. My other worry is that I am much underweight, I eat, but I don't seem to gain, but again, it takes a long time to get back to what you were. Do not like to look at myself. All will be well, though, I believe that.

Diane, yes, my hair does seem more thin, I also think its the stress of it all. And as far, as energy mine is pretty low as well.

Again, thanks, ladies for everything.....................paula

[Diane C]

More than welcome, Paula. Wish I had more answers as I'm seeking them myself.

I'm still taking Juven which contains collagen. Collagen is useful for the skin, hair, nails. I had actually bought collagen powder but will hold on that since that's the main ingredient in costly Juven.

So far, I've not seen any improvement with my hair but my wound in the rectal area IS slowly healing although for now, it seems to have plateaued in terms of depth.

On my mother's side, we have alopecia but the hair is SO thin and I can see my scalp more. I am using "Finally Hair" fibers which I bought on Amazon. Really seems to cover the area well. There are several products that are similar https://www.amazon.com/Hair-Concealer-R ... 33525&th=1

Wishing you good luck!

Diane C.