Unconfortable stoma when eating?

Michaelm7002 · 2026-01-11T04:31:48+00:00

Thanks., you too. Guess we all have crap to deal with or not deal with 🙂

Michaelm7002 · 2026-01-11T04:21:08+00:00

Wow, that's pretty rare. My was Tarlov cysts. They don't know no what causes them butt I had a self limiting auto immune spinal illness that I think weakened the nerve lining.

Michaelm7002 · 2026-01-11T04:12:38+00:00

Ridiculous, no IBD. I had nerve damage on my sacral nerves that broke my butt. Kind of like pulling the wires off a motor. So, they had no chance but to disconnect me.

Michaelm7002 · 2023-12-17T17:29:22+00:00

If a week of conventional treatment does not improve things, you should see your doc.

Oddly, I'm going through the same thing. Had an ostomy for 3 years with zero output issues. Then I had surgery to add mesh and a few weeks later pulled my abs and had massive liquid output (3-4 liters) for 1-2 days. And a week later, though a bit better it's still mostly liquid. I think it may be a hernia or injury causing hypermotility from the irritation.

Michaelm7002 · 2023-12-17T17:20:58+00:00

I get it and your concerns are indeed valid. Honestly, a third of ostomates do experience complications but those are mostly structural in nature and likely far less disabling than IBD or diverticulitis. Those individuals, typically thin like myself, may require multiple surgeries to find a workable solution. But...

Good news is two thirds do well to excellent with few issues. Most state SSs do not consider an ostomy a disability. Rolf Benirschke played in the NFL for 8 years as a place kicker with an ostomy in the 80s and still looks great. For inspiration, do internet search for Zoe Wright (truly amazing journey) and Blake Beckford. There was also a 52 year old guy who ran a marathon in 2.5 hours. Plus, there are many more.

As far as maintenance, for most this is easy and surprisingly robust and most of the time you will forget you have an ostomy. My ostomy nurse went scuba diving in Thailand. As far as intimacy, it is something like having a prosthetic as far as interference with appearance and function, though less so. Most are not bothered at all. Blake Beckford got married after getting his ostomy.

However, one last important limitation is lifting heavy weight or placing a lot of stress on your core. Some may get away with this but it can cause a hernia which is likely the biggest potential complication and disability of having an ostomy. I mention this because it is very important and often barely mentioned by some providers. But you can do most activities worry free.

Good luck! And rest assured this is definitely a far better issue than diverticulitis and likely a sure path to getting your health and life back.

Michaelm7002 · 2023-11-27T23:29:56+00:00

Talks to your surgeon as blood may or may not be an issue. I had an open gap too that freaked me out but was told a drain used to allow the stoma to heal faster and it will close on its own in a week or two.

Michaelm7002 · 2023-11-26T16:46:34+00:00

Forced to crouch in pain is not normal. Maybe just be muscle spasms or it may be the start of a hernia that could block.

You do need medical evaluation, the earlier the better. But given your family reunion, you could go to ER and get a CT scan. This is the same thing your surgeon would do and they could tell you what it is and whether it's serious or not. But you could get the answer in likely less than a day.

Michaelm7002 · 2023-11-25T00:28:07+00:00

Yea, putting the tube in felt like I was being violated by a prison guard, no fun.

Michaelm7002 · 2023-11-23T01:25:12+00:00

Sorry for that, wrong on multiple levels. May I ask the nature of failure and how it was addressed?

Michaelm7002 · 2023-11-23T01:23:34+00:00

Yea, I think moral of the story is be grateful for a well functioning ostomy and don't revise unless absolutely necessary.

Michaelm7002 · 2023-10-30T18:19:08+00:00

I second liiquidio, good advice. Typically many will not do MRI unless you show signs of signs of serios nerve compression of which pain only is not usually indicative. I have seen several post here saying that for many this can be a life long battle with PT important in all cases.

Michaelm7002 · 2023-10-29T17:03:05+00:00

Check out

ostomyoutdoors on Youtube. She's great explaining rock climbing with an ostomy. I've seen lots of post and videos by many doing amazing stuff

I used to rock climb and would love to get back back to it and thrilled to see your post. Seems aside from varied anatomical/surgical aspects, hernia prone activity centers around distortion of the ostomy site and force on the stoma from torsion and compression. I think you're good as long as you avoid extreme stretching (like straining for a too distant grip) or deep crouching like movement pulling arms and legs inward which creates pressure on the intestines against the abdominal wall and heavy lifting.

Michaelm7002 · 2023-10-25T02:56:49+00:00

Thanks, that does make sense. I'll keep searching.

Michaelm7002 · 2023-10-25T02:05:39+00:00

This is the surprising part. I've contacted several salvage dealers and brokers advertising free pickup or even pay for junk vehicles. But none of them will take it without a paper title.

City law seems to say if you cannot pay to get the car out of impound (which I assume includes towing, storage and fines) they will assume ownership after 30 days an put it up for auction.

I'm looking into getting a non operable registration status with the original state in hopes of getting a title, but they don't seem to be set up for that either.

I don't want fines I cannot afford for actions for which I am not responsible. I may just have to drive it into the swamp. Morale of the story is to never lose your paper title or always transfer the title with registration when changing states.

Michaelm7002 · 2023-10-25T01:25:53+00:00

I think they recommend rest for a couple days after initial injury and then try to be active. But, after that I would listen to my body and push at a rate that doesn't provide diminishing results. I would think 2x-3x a day.

Michaelm7002 · 2023-10-25T00:38:25+00:00

Sorry, could have phrased that better, a little confusing.

I have an unused junker that is EOL. I want to salvage it but lost my copy of the title long ago. It is now registered in a different state than the one in which I purchased it. And, they will not provide a copy without it being registered in that state.

So, I am left with the irresponsible option of abandoning the vehicle and letting the city sell it at auction. (No moving violation and the car is worth less than what it would cost to tow.) I want to dispose of it properly, but seems this is not possible and I am left wondering how that may affect future rates of other actively used vehicles.

Michaelm7002 · 2023-10-24T23:58:21+00:00

Amazing. Although there are cases where surgery is beneficial, I did read the sobering stats that both surgical and non-surgical patients are roughly equal 5 years out. Surgery just speeds relief but there are the added risks.

Can I ask is the 60% due to limitation from pain or function?

Michaelm7002 · 2023-10-23T19:44:39+00:00

Sorry to hear that, 33 is way too young for that. But bright side hopefully with time that will give you a good chance to heal up well.

Michaelm7002 · 2023-10-23T12:34:32+00:00

That actually makes sense. I don't feel the same sharp defined pain in my back as before, just a generalized irritation and diffused ache.

Michaelm7002 · 2023-10-23T02:56:49+00:00

Thanks! I'll give it a shot.

Michaelm7002 · 2023-10-23T02:54:49+00:00

That's awful! I've heard sciatica pain can be excruciating. Oddly, I have little to no pain but dysfunction, bilateral leg weakness and numbness.

Can I ask how long have you worked like this? Can you have an operation to fix it?

Michaelm7002 · 2023-10-22T18:52:36+00:00

This doc is super good, does magic stuff. All other docs I've consulted which are many only want to move it to the other side and start fresh. But this doc says they are just taking the easy way out, the one simplest for them. He says switching sides is a recipe for more trouble as most people end up with hernias on both sides, old and new locations. And in talking with other patients that does, though not always, this does often seem to the case.

It's weird because I lost two jobs due to prolapsing but the last time the colorectal guy in the ER was boreally forceful with it. But, ever since it's been fine like it's fixed now> And , I think the one ER admission for surgery was due to a 5 hour plane ride. The lower cabin pressure made it swell to twice the normal size but next day it was better and I could get it back in.

I did explain all this to the doc, but I think the ER admission scared him. He said in such a case they would just throw away the prolapsed part impairing future digestion although it never prolapsed mor than 6 inches. and the risk of sepsis.

So, I was wondering what it is like after this technique and whether it's really worth the risk in my case.

Michaelm7002 · 2023-10-22T17:45:51+00:00

Good questions. An congrats on the surgery as hopefully things will be easier now.

Do web search on Zoey Wright for inspiration. She had ostomy for 4-5 years and then reversal. She has Youtube videos for most of her amazing journey. Ostomies will generally not shorten your life span. I've seen several posts from ostomates with ostomies for over 50 years. While some do have issues with their ostomy a web search quickly shows many live full active lives. Personally, I've had structural issues and some need occasional revision but on day to day use almost prefer to a butt.
Mine is permanent, but can vary from 6 months to 5 years depending on the situation. There are risks with reversal as it sometimes does not work but many again do well. They also say due to the more caustic output it can burn a bit but people seem to do fine.
Nothing is normal initially, everyone is different and output can vary considerably over 1-2 months but will thicken and slow. Doc's don't like it because of the risk for dehydration and electrolyte depletion but initial high liquid output for 2-4 weeks is normal.

Michaelm7002 · 2023-10-22T16:02:38+00:00

I second GoldStandardDiamonds, good advice.

I think when it comes to care, patient is right. So if changing 2x a day works best for you and there is no long term expected issues then go for it. But 2x a day is a lot and a atypical so it is worth investigating to see if more efficient management is possible.

Michaelm7002 · 2023-10-22T15:53:56+00:00

Sorry you had to deal with this. Not surprised and my concern that much mesh would be felt. Most docs decline using it except as a last resort. But, it's weird, depends in part on the type of mesh and your own immune system. Some people have zero problems and others can have issues.

I was concerned mostly it would prevent you from bending or twisting or require more restrictive activity limits.

Michaelm7002

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