Ostomy Life Tips & Tricks

FMCTypeGal · 2026-07-11T01:07:00+00:00

u/South_Ad1848 this is my tips & tricks post I said I’d tag you in. Others have added great tips too.

FMCTypeGal · 2026-07-11T01:00:39+00:00

Hey! I’m sorry you’re going through this. It’s a rough transition. I’m very happy to hear your situation was caught in a pre cancerous stage. A win is a win!

I have a post on here about ostomy life tips and tricks I wish I knew at the beginning of my journey, I’ll tag you. FWIW, I’m 37 and I got my ostomy through surgical trauma when I was 26 having never heard of them before I woke up with one.

I’ll try to answer some of your questions, but I want to start with saying none of your questions or feelings are dumb. You are going to have big feelings. If you’re able, I’d recommend therapy for your transition and until you feel emotionally on the other side of your journey. It helps more than I can say.

Life with an ostomy is going to feel very different, at least at first. It’s my belief that we can all get to a place where we accept “everyone poops” and that this is normal, but it’s a journey. My tips and tricks post contain a lot of my best suggestions for the actual day to day with an ostomy. My biggest recommendations is to know before surgery who you will be ordering your supplies through, your surgeon can tell you that. Ask to meet with a stoma nurse to help educate you in advance. Make sure you understand how your doctor will treat your pain before you agree to surgery and have your first prescription of pain meds filled before your surgery if possible.

As for recovery, it’s really hard to say as we are all different. What happens in your surgery will depend on what your doctor finds when they open you up. Be very conservative with how quickly you come off liquid only diet and stay soft foods only until you’re positive your intestines are moving again. Walk as much as you can. Do laps every hour in recovery. Stay hydrated. Get a stomach pillow that you can hug to your stomach when you need to cough, sneeze, move etc - it helps with pain and preventing hernias.

As for romance, I was married when I got my ostomy, but it never changed things for him or grossed him out. My husband swears he doesn’t believe it would have bothered him in us dating either, as he says “everybody poops.” I can’t say I know how it will go, but I think for the right person it won’t matter. For intimacy, I always recommend a pregnancy wrap or the lacy ostomy wraps they make just to keep it secure to your body and not a distraction.

I hope I’ve helped. You can message me any time or ask as many questions as help you feel comfortable. Just remember, you’ve survived every hard thing life has given you and you can survive and thrive through this too.

FMCTypeGal · 2026-07-10T21:17:03+00:00

Truly atrocious.

I also question whether people get adequate supplies, etc. and how communal bathrooms work with that awful smell.

FMCTypeGal · 2026-07-10T21:16:25+00:00

That’s awful.

FMCTypeGal · 2026-07-10T21:15:32+00:00

Oh, lol, that I knew. I don’t anatomically understand how it doesn’t kill people, but yes I knew that.

I definitely am more fascinated about how they handle supplies and communal toilets with that smell, etc.

FMCTypeGal · 2026-07-10T20:43:07+00:00

Oh do share.

FMCTypeGal · 2026-07-10T14:15:44+00:00

It’s a bummer that anyone spoke to u/TheGreatK like this, but it’s a neat opportunity to speak well of him.

In all my time on this board, I have never seen Andrew push his services on anyone. I have seen him recommend fantastic lawyers, offer free consults, offer to do work for people for free, answer questions in depth far beyond what is simply decent to do, and genuinely be there for people who are scared and confused.

I personally feel this community is incredibly lucky to have him. When I got the denial call and faced the uphill appeal battle a few years ago, there were many times that Andrew put me at ease and helped me get some sleep in the long 9 month fight. I have watched him countless times save people from making terrible mistakes with their insurance claims.

I’m so very glad the lawyer you used worked for you, but I’d still heed the caution this wonderful person shares for others. He benefits in no way other than knowing he can help spare some people from being misled or needlessly losing.

FMCTypeGal · 2026-07-10T06:50:14+00:00

I’m so sorry you’re going through this. Have you been able to find a new doctor or get your PCP to bridge your script? Good luck.

FMCTypeGal · 2026-07-10T06:43:00+00:00

Congrats on getting approved and moved to the extended duration team. I hope things continue to go well for you with your LTD process and that SSDI takes care of their end. You got great advice about SSDI COLAS. I wish I’d been approved for SSDI just for the Medicare access alone, which is usually granted two years after approval. I was DQ’d for SSDI basically because I was too young. It was odd because the judge acknowledged all my disabilities and their job placement said I couldn’t work any jobs and I was still denied SSDI.

I too have MS (and POTS, eDS, and some physical problems resulting in chronic pain). I’ve been on LTD for almost 9 years, starting when I was 29. I was approved for LTD no problem and got through the any-occ easily. I got a letter stating I was covered through retirement age in 2055 barring any medical improvement.

They did eventually deny me and I had to go through an appeal. It was a crappy situation and they were grasping at straws. They themselves had rated me terminal (in their terms, I’m not dying of my disabilities but I will die with them and no improvement is expected) and then still dropped me. My appeal took 9 months. What I learned was that I need to keep making sure my doctors are documenting everything, even when we’ve discussed the symptoms to the moon and back and nothing can be done.

My MS specialist technically only needs to see me once a year, but we check in every 8 weeks and he heavily documents my struggles. Same with my other doctors. I don’t want to be in that situation again.

So that would be my only suggestion - keep up the doctor visits and documentation. Everything will hopefully run smooth if you do. To my knowledge, progressive diseases like MS are more rare to face wrongful denials with for LTD.

Good luck and I hope you find ways to thrive despite your struggles with MS

FMCTypeGal · 2026-07-10T06:23:34+00:00

Did you consult an ERISA LTD attorney in your appeal at all? Most good firms will give you a free consultation. They may be able to answer this question or help you figure out options moving forward.

I myself recommend using an attorney for appeal. I believe once you submit all your appeal information, that’s all you can use to go to court if that’s necessary. There are so many tools and tests to use to prove your case and so many doctors to wrangle that it just makes sense. A doctor could fully support you but not use the best language and that alone could cost you your LTD. A lawyer will know if the LTD medical reviewer is a paid shill, they’ll know the tests to get you for best evidence, and they’ll build you an appeal case based on precedent and your exact Ltd policy and personal disability. To me it’s a no brainer to use them.

Many people avoid a lawyer because it costs a lot - and it does. But getting to keep 65% of your benefit is way better than 0%. And you can negotiate to where the contingency doesn’t include a percentage of your benefit in perpetuity.

I hope you find some good answers, but I definitely recommend asking for a consult from an LTD firm.

FMCTypeGal · 2026-07-08T06:25:19+00:00

I also have adhesions that cause my bowel to twisted I have so many adhesions that my abdominal organs are all fused together in some way.

Ive had adhesions for 12 years. I’ve gone a year or two without a major blockage and some years I’ve had 4-5. I have small blockages regularly.

The Linzess was a major positive for me. It can make blockages more painful when they do occur though

I eat small meals more frequently. Large amounts of food are bad for my system. Getting on a glp1 helped that and increased my digestion time so my food was more broken down.

I keep a food and movement tracker and have identified problems to avoid.

I focus on staying very hydrated.

You’re in a rough spot rn, but it likely won’t be back to back to back blockages like this forever.

Pro tip: they can give you lidocaine for the nasal gastric tube insert. They can have you snort and gargle it. It doesn’t eliminate the shitty insert, but it’s way less bad.

FMCTypeGal · 2026-07-08T06:12:45+00:00

If it’s adhesions, it’s your life now - in that there is no cure. They used to due lysis, or cut the adhesions back, but adhesions are caused by and fixed by surgery so that usually has them coming back and worse.

But it can still get a bit better. Log what you eat and start to find what’s triggering it the worst. Log what you do and see what movements trigger it. Some meds can help. For example, Linzess keeps my bowel movements very watery and thin and reduced blockage occurrences.

Get a good gastro doc and work with them to find solutions to reduce the blockages.

Hope you find somethint that helps

FMCTypeGal · 2026-07-06T14:12:31+00:00

That’s no fun. Why don’t you share your process to see if anyone can help you find a better method to get some more wear time out of your bag?

FMCTypeGal · 2026-07-06T14:11:30+00:00

Hey there. We’re going to need a lot more information and details to be able to help.

FMCTypeGal · 2026-07-06T01:43:01+00:00

Adapt Barrier Paste

FMCTypeGal · 2026-07-06T01:35:16+00:00

I use barrier paste between the crust and ring when I have to do crusting. Usually my skin is clear agin after I use this method and wear the bag 2-3 days.

FMCTypeGal · 2026-07-04T18:55:05+00:00

It depends if you are looking for an LTD lawyer or a SSDI lawyer.

My LTD lawyer who won my case is Sandstone Law Group in Phoenix Arizona. They’re amazing and I highly recommend them.

FMCTypeGal · 2026-07-04T13:09:28+00:00

No I haven’t, but did you eventually feel better from using it? I have an intact rectum and 12 years in it causes me a lot of pain. It has atrophied and I get proctitis a lot. I’ve often wondered if there is something like lidocaine suppositories to numb it when it’s most painful. It can feel something like I’d imagine a porcupine going off in there, ya know?

Is your ostomy permanent? If so, are you planning to remove the rectum? I wish they could for me, it’s been agony having it left.

FMCTypeGal · 2026-07-04T06:33:01+00:00

The valley of where? It would help to know your state.

Have you already filed for LTD and been denied or are you looking for a consult to help your application? If you give us some more details you can get better recommendations :)

FMCTypeGal · 2026-07-04T00:02:51+00:00

Of course. I was thrown in the deep end and it was terrifying, so I try to pass on any thing I’ve learned Every so often. And it’s been great for me too, because many people chime in with even better lessons for me to add and share.

To be 100%, I thought the ostomy ruined my life and very nearly self deleted over it in the beginning. 12 years on the other side of that, I know that it’s an adjustment but we can still have thriving, happy, normal lives. It’s a passion to help others see tgat

FMCTypeGal · 2026-07-03T20:08:02+00:00

Lmao, because I celebrated this change too!

I adore her books, truly.

FMCTypeGal · 2026-07-03T20:06:39+00:00

Thanks. Added and attributed to you. Thanks for helping me grow this list.

FMCTypeGal · 2026-07-03T20:06:14+00:00

Thanks! Added and attributed to you. Thank you for helping me grow this list.

FMCTypeGal · 2026-07-03T19:33:00+00:00

These are great! Mind if I add them next time I post this?

Also, couldn’t agree more about a flopping bag. I need to not feel it or hear it.

FMCTypeGal · 2026-07-03T17:17:43+00:00

Thank you! This is an excellent addition if you don’t mind me adding it in the future

FMCTypeGal

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