Telescoping/Prolapsing Ileostomy: Prevention and Management Tips Needed

Hello

My ileostomy was formed 4 months ago. On 3 occasions now after fairly heavy gardening and lifting, I've noticed that my ileostomy has a pulling/slight pain sensation, protrudes slightly more (I think maybe telescoping out a bit) and at the same time the output turns from porridge-like to liquid only. The protrusion goes in a bit if I lie flat. Previous times output and stoma returned to normal after 6-12 hours. So far this time still protruding when I stand up again and output still liquid.
What can I do to prevent this from happening, and what can I do if it does happen? I'm normally very physically active in the garden and am worried I'll be restricted now I have an ileostomy. I tried wearing a support belt but the Velcro keeps coming undone when I move and bend and it's a real nuisance to keep on when gardening.

Welcome. Good to have you.

Please lean in to hear me. You here? Ok. Smack.

I am going to apologize in advance because it's not my nature to go on the defensive of stupidity.

You will be getting scalded, my friend. A good scolding because what you are doing 4 months post-op is ridiculous. Unsafe.

4 months is no time to be doing half of what you are doing.

Didn't your doctor tell you to take it easy?

You appear to have created a hernia from your heavy gardening and lifting. Want another one?

You need a better belt. They are out there. Sit your butt down. Google hernia belts or ostomy belts. Others will advise you on other sites.

Whatever you are doing is creating more issues.

This just annoys me, hearing what you are doing so soon, and it seems like you never gave thought to consequences.

Very careless, man. Why not drive with a blindfold on?

And again, apologies to you and members. I am not like this when I respond.

"On 3 occasions now after fairly heavy gardening and lifting..."

I am in complete agreement with Warrior's sentiment that you are doing too much too soon. For you to not be aware of the risks is an indictment of your doctors/WOCN. You should have received this advice before you were discharged from the hospital, either verbally or in discharge papers. To be fair, some of us had reached the point where our lives were hanging in the balance and we were not able to do what you were doing even if we wanted to. You may have been advised to take it easy but were used to pushing yourself to exceed expectations. In the case after ostomy surgery, just because you can does not mean you should. My doctors told me to remember the acronym, BLT - be cautious while Bending, Lifting, or Twisting in order to lessen the chance of developing a peristomal hernia. I hope you have not developed one from your strenuous activities. Take it easy, Christian.

Well put. I was too steamed for composure. Thanks.

Hi, thanks for your replies. I guess I should have taken it easier, but my surgeon advised I could return to normal activities. I had followed no lifting anything heavy for the first two months and did lots of abdominal core strengthening exercises. I don't think this is a hernia; I think it's a prolapsing stoma. I've just changed the bag and normally it protrudes about 1.5 cm and currently it's about 3.5 cm, and it bled a lot more when cleaning. My output has been terrible overnight; I emptied runny liquid about 6 times. My normal is once and porridge-like. I'm wondering if either the prolapse is limiting output to liquid only and more solid is staying inside, or whether I have eaten something to cause diarrhea and that's why the stoma has prolapsed. Waiting to hear from the stoma nurse.

Christian, it's 3:30 a.m. here across the pond. It bothered me how I replied to you.

I am not like that, being so mean, and your reply, so heartfelt, means "you got my point" albeit harshly.

Bygones.

Now, if I could have a word with your doctor? It would be two choice words only. But essentially, he's an idiot. Is he experienced enough to tell you to resume normal working or daily habits? Or has he mad cow disease?

His idea of normal is not our new normal, so you may have interpreted his "return to daily activities" incorrectly.

You have a hole through your stomach wall. What can be normal about that? It is not going to get better as you do your things.

I do get the whole idea of being busy-minded and nothing-can-stop-me attitude or just being very active as you have your youth. Lucky you!

But it does not include break dancing. Nor lifting. People with heavy lifting jobs have retired because of a 40 lbs lift restriction—or less. This is your new normal. Factual too.

You are a newbie. You ask first before doing things that give you pause and will eventually hurt you. Please remember that.

You don't want to hear about failed hernia repair. Some of us won't have ours done due to the fact it's a never-ending repair. Only an experienced doctor or stoma nurse would tell you that.

Or us. You can talk to those who've had it done, had it failed, had multiple surgeries to fix it—in short, regretted it.

Re: your stoma? It normally exercises itself. Did you read a story on here where the member has a 3 to 6 inches prolapse stoma?

?? DAMN... throw a saddle on that sucka.

I don't think what you are experiencing is abnormal. Just the opposite. It will grow and retract. Just keep an eye on it.

Mine grows to a golf ball size. Mushrooms.

And retracts as small as a small grape.

Your output is affected by what you eat. Your stoma is an exit.

Nighttime, laying down, has some adverse effects. This will ease as your dinner time changes to maybe an earlier time instead of later.

Bananas and marshmallows before bedtime might help.

I used to have nocturnal empties 2 to 4 times. This 3:30 a.m. wake-up trip is my new normal for months. It took me a few years to curb eating late.

Achieving all of this new normal takes time. Be patient. Don't overdo it out of the starting gate.

Ask. We are here.

You got this... with our help. We get it.

Keep us posted. Thanks for being a nice guy. Thought you were gonna bite my head off. 🙋‍♂️

Hi Christian, welcome to the site. I've had an ileostomy for 30 some years, and my job at the time was physically demanding. I remember my surgeon telling me when going back to work to work smarter, not harder.

Smart surgeon. Likely experience taught him that.

Experience will give you the logic over time to work smarter rather than harder. And as you age, if you're not learning the smarter way, you end up hurting yourself. Plain and simple and proven.

I know this as an auto mechanic, teaching the young ones in repairs. All that bending is going to catch up to you, that type of lifting too, twisting, etc.

You see these younger guys pulling tires off a car on a lift, for example.

Standing while removing the tire from the car.

Ouch.

Lower the lift. Slide the tire off, then reinstall the same way. Raise the lift and stand while tightening the lug nuts. Easy peasy. Yeah, it takes a bit more time. You get paid by the hour. 😊🤦

Your back and knees will thank me later. 🤣

You get that experience from either the hurt from hard work or old farts like us here, beaten by that hurt at MOA, by sharing their own story of pain.

Thus the student becomes the teacher.

Hi Warrior, I hear you about the tires. I worked at a gas station as a teenager, but the boss wouldn't let me use the lift for tires, only for the mechanic to use.

Oh Ron... yeah, there was a time for me too like that. We paid our dues being young and dumb.

The cars are so low-profile these days, you need a lift. Even car ramps, you have trouble when using them for oil changes.

Think smarter, not harder. Ha ha. Indeed.

So I attended A&E yesterday. CT shows no parastomal hernia, but that ileum is in an S shape as it goes through the abdominal wall and that is where output is being restricted and causing swelling to the stoma. Things have slightly improved but my output is only 25% of what it should be. The doctor is ringing me again this morning. I imagine I will need stoma revision surgery to correct the S shape; otherwise, I imagine I will just keep having problems.
I've taken on board what you've all said about not overdoing it. I will have to be stricter with myself!

I'm going for a walk now to try and get things moving more and hopefully can avoid having to go back in today.

There you go. Good luck. Day by day...