High Output Ileostomy Struggles and Seeking Advice

I have a high-output permanent ileostomy. The leaks are horrendous, and the phantom leaks torture, tease, and poke me. I have been provided with all the right medical supplies: I have big bags, small bags, adhesive rings, paste, and Demi-lunes. The stoma is right on my belly button, and I have an old scar that pleats. I block it up with paste and have the extra security of Demi-lunes. I started to control the leaks by simply not eating. I didn't realize what I was doing; I thought things were settling down and my body was adjusting. It sounds ridiculous, I know. I couldn't
see how thin I was, always dehydrated, always drinking lots of water. I eventually collapsed with a violent drop attack, breaking my nose and ribs, and have spent the last 4 months with a nasal gastro tube. The doctor told me if I go below 58 kg, I will have a feeding tube put in my stomach. I don't know what to do, as the very thought of food makes me shudder. I have to wash it down with a drink. I'm making protein shakes, etc., full-fat milk, and forcing the food down—really forcing. I have no desire to eat at all. The bag leaks every day now, often 2 to 3 times. I eat small meals 5 to 6 times a day; my anxiety levels are through the roof. It's as though my body and brain believe food is the enemy. I've worked this out and have to put an alert on to remind me to eat; otherwise, I don't. I struggle to leave my flat. Has anyone out there experienced these psychological problems? Any tips that could help me overcome these feelings? The irony of it all: I was a very successful high-end chef; food was my life, my passion, and now it is the enemy. I'm sitting at 58.5 kilos at the moment. I really want to avoid the feeding tube again. I'd be so grateful for any pointers. Thank you.

Bonjour Bebe64,

A few questions. 1. Do you have a stoma nurse? 2. How long have you had your ileostomy? 3. Has your belly button been removed?

In answer, I would say first go see a stoma nurse. Second, get your surgeon to relocate your stoma to a more serviceable place.

How long has this been going on?

Regards, IGGIE

You don't mention Imodium/loperamide?

Oh my, Bebe, you are having a lot to deal with, and that will make your anxiety skyrocket. I remember not eating when I had active ulcerative colitis, just to avoid the pain, and my heart goes out to you because we're in survival mode and doing the best we can, what we think is the right thing. I remember my neighbor coming over to drop something off, seeing me, and bursting into tears. I was so malnourished; my skin had no pink to it, and I was in a bad way. I get it. It sounds like you've been pushed and pulled emotionally. Nothing about what you said sounds ridiculous. It sounds like what a lot of us have experienced, and it sounds exhausting and depressing. Can you share a little more information, if you're comfortable doing that, as to why you have a high-output ileostomy? Axl mentioned Imodium to slow it down; that can help. Your stoma seems to be in a very unfortunate place and so difficult to maintain. Do you have the option to relocate it? I can't express enough how helpful it can be for you to speak to a therapist. To go from being a high-end chef, where food is literally your life and passion, to it being the enemy must be messing with your head, so to speak. It may help to sort this out with someone who's objective. Folks on here are here to help. Our stories are varied, but our journeys have a lot of similarities.

Hi Be,

There's a lot to unpack with your situation, but I know someone who had a similar issue, and I'm going to send her your way. But we need to talk about your whole routine—eating, drinking, etc. There's a lot you can do to minimize what you're experiencing, and we'll get you straight. I got to run right now, but I'll contact my friend, and we'll chat later. Hang in there, the cavalry is a-comin'!

:O)

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

I do not have a quick answer for you, but there are others that may be able to help. But it is clear you need to see a stoma nurse ASAP. If he or she cannot solve your leakage problem, go see a surgeon and get a second opinion on a new placement site for your ostomy. Let your medical team know that this is urgent and you are in pain and need help now.

I am sorry you are struggling. That sounds so hard. You are a fighter.

I agree with everything that's already been said. It sounds like a complex situation. At its core, your ileostomy isn't under control. Get help from a stoma nurse. If you can't get the leaks under control, get your surgeon to reposition it. You should not be living like this. You deserve better.

This is life-threatening and needs to be dealt with urgently.

I think all the leaking has caused your aversion to food, and you would benefit from some therapy to change that.

What's your doctor and dietitian doing to help get your high-output ileostomy under more control? They should be working as a team to make it more manageable. You're doing right by drinking lots of fluids, but lots of water just by itself will come out almost as fast as it goes in, making you dehydrate even faster. You need to drink electrolytes as well; it helps prevent dehydration and also slows output from the stoma down. You need advice from a dietitian on the amount to drink, as too much is bad for us. There was a 2-year trial in the early 1980s with stomas coming out through the belly button. They found it was the best place for preventing hernias, as the hole was already there, but the worst position for getting bags to stay on. Almost everyone in the trial had their stomas resisted. Keep on fighting.

Hello Bebe, My heart goes out to you. You are dealing with a lot, a complex issue, both physically and emotionally. I concur with so much of the advice that you have already been given here. See about getting your stoma relocated, and talk to a dietitian about steps to slowing down your output and getting a handle on your nutritional needs. Don't neglect the emotional side of this, because it plays a big part. Your relationship with food needs to get back to normal. I know you know this, but knowing it isn't the same as accepting it. I also have a high-output ileo and have had problems with the absorption of nutrients, so I know how being low with certain nutrients can mess with your head. It's impossible to feel optimistic and upbeat when you feel physically terrible. Both the physical and mental/emotional come into it. Ask for the help you need, and don't take 'no' for an answer. We all need to advocate for ourselves, and I know you are at a low point, where that might feel really hard, but you must try. Please keep in touch and let us all know how you get on. We are all rooting for you.

Terry

Bebe, I use a new hope mesh hernia belt 24/7; this helps keep the bag from falling off too, and it helps support the weight of it as it fills. Peanut butter might be your friend, as steak, not ground beef, might be. I found bulk, not fiber, to help. Funny enough, junk food is fortified...

Hi Bebe,

Let's hold onto that 0.5 kg, yes? 🙂 It's easier for us to maintain weight than to gain, and easier means less pressure. And less pressure means we can take a deep breath. We're going to help you find your way through this.
Is your anxiety centralized around eating? The leaks?

May I ask if the eating issues started only after you wanted to control ostomy output?

Were there any issues with the desire to eat before the ostomy?

Do you still have hunger cues?

With being a chef, do you have a high sensitivity to taste? Smell?

I apologize in advance because my French is pas bon, and I have no idea how some medical-psychology terms will translate.

Are you familiar with the term gut-brain axis or gut-brain connection?
Our bodies go through a great deal with these types of surgeries, and signals can get confused. The brain needs to learn that food is good again.

Are there any high-calorie foods you've avoided in the past but possibly feel like taking a bite of now?
It's important to keep putting food in your mouth every day. Chewing even a little helps.
Whole milk is a great choice; I use extra when I make lattes at home ☺️

You could even use things like half-and-half or full cream in coffee. Hide some calories that way.

When I was struggling with weight loss during chemo, I was told to add butter to everything. Make every bite count.

I was given a medication to increase my appetite while I was in the hospital. Ask about that too.

Hi, I am a double stoma buddy. I've been going through some stuff myself that got me to the point of being scared to eat, as I am in so much pain. I am currently 46 kg in weight, waiting for a feeding tube. I have been prescribed drinks for now until they come up with a plan, but I am on liquids at the minute. If I even try proper foods, it is horrendous with pain when my stoma is active, so I feel for you. Leaks are no fun. I am waiting for surgery on my reggie as well; he has shrunk too much apparently, and yes, I miss my food too. Big love and positive thoughts xx

Hi, my sister. My appetite is fine; I want to eat. I just know the pain afterwards, and I don't want that, and that's what stops me. I have tried smash, mash, and gravy, and that hurts, so I am very careful about what I eat and when. If I need to go anywhere, I wait until I am done with what I need to do. I've been in situations where I had food before going out and ended up standing for a while like an idiot because I couldn't move because of the pain. So I have learned from that. But yeah, I am starving and wish I could eat a big fat pizza. Oh, and I've been craving a chip butty as well, but I know it will be horrendous on output. But hey ho, keep going. xxx

They need to get you sorted already. It makes me angry that you have been suffering so long.

Stay strong, my sister!

Hi... I also have a high output stoma and find the best way to keep my bag in place is to use barrier film and protective seals (with extra paste between the skin and the protective seal). You could also shorten the plastic tube on a night drainage bag so it can be attached to your pouch and secured to your leg. This will allow you to get out for longer periods as the drainage bag will collect any excess rushes of gas and output... C