Most of you know I now have a stoma for a "stomach" - It's a huge life-changing experience. Most folks in my position name their stoma. Mine's Stella. However, I recently figured out Sella is non-binary. She's Stella when she's good, and Fella when she's erupting all over the place.
For some reason I find this funny. Yet apt.
Right now I am working on finding the right bag for my body. Thought I had it, but lost 5 pounds and it no longer fit right (quite messy). Wish me luck
If anyone has questions about what it's like having a stoma, I'm not shy
So was it just the large intestine that you lost? And there may be a way to reconstruct or stretch out the small intestine and make part of it function like the large intestine used to??
It sounds like you must be pretty healthy if you are still having problems losing weight, so maybe that is a good sign?? I sure hope they are able to get you back to a more normal life, but it sounds like you are doing well all things considered, which is a testament to your indomitable spirit and fortitude. So glad that you are still with us... and I'll bet your kids are, too!
I know of a few bags, but don't believe they'd be a good fit!
They're messy too. Like a few xtian bags who gave you a hard time. A few of those bags were male too.
You are commendable for how your spirits remain high in the face of difficulties you face. You can look away from a painting, but you can't listen away from a symphony
and how it affects your life to have had this happen to you. It sounds like it is pretty difficult, but I must say that I really am glad that you have a sense of humor about it, in spite of the difficulties associated.
I had no idea they'd performed an illiostomy. Did not find out until I was moved out of ER after 3 weeks. Then an RN showed me an oval-shaped red thingy just under my right boob (great placement, doc). She put on a bag, but forgot to roll up the end. Very messy.
The Stoma itself has a main opening (the exit) but it's very tiny - like a thick toothpick hole. Around it, there's normal skin. You just have to watch for rashes, cracks, red-bloody skin irritation, etc. Those are all caused by ill-fitting bags.
My large intestines (colon) are gone along with my gall bladder. The Stoma is the exit for body waste. So, I have to put on a bag with proper adhesive and extenders, and empty it about 5 times a day.
Step one: Lay out all my tools on a small bedside table.
Remove the old bag and carefully wash off any soiling or remnant adhesive.
2. Cut the back of the new bag to the right size. Check the size before removing the paper and revealing the sticky surface
3. Make sure your skin is clean and DRY.
4. If need be, apply stoma powder at the outer edge of the stoma to protect touchy skin. All excess powder has to be brushed off
5. Spray on skin barrier until the powder is wholly saturated
6. Wait for that to dry, then apply the bag per the manufacturer's guidelines (you would not believe how many different bags are out there).Apply pressure
7. Add extenders
A well-fitted bag lasts me about 4 days.
Sometimes the adhesive doesn't work, or sometimes the choice of bag is not right, and everything leaks out one side, the other, or really any side, sometimes all at once. Yucky doesn't cover it.
I have a "go" bag for myself consisting of 3 bags, body wipes, skin protection, adhesive remover, stoma powder, extenders for the edges of the bag, deodorizer, scissors, disposable bags, a chuck for a working surface, a cut out for marking the bag to the size/shape of my stoma, and hand sanitizer.
I have all of these things in a grocery bag next to my bed so they're close at hand.
It's tricky to situate my bra, underwear, or slacks so they don't press too much on the bag. This will cause it to back up and eventually rupture.
I am finally on the hunt for a better-fitting ostomy bag. Should have thought of it months ago but I just went with what the hospital started me on.
You can feel when the stoma is working. It's hard to explain the sensation. When the bag is full, you empty it into the toilet (or I also have a container so I can sit down and have better control). At this juncture, if things are kinda sticky, I have a water bottle handy to do a quick rinse. Then it's wipe everything down, bundle back up, and get on with things.
Socialization is awkward because I am always worried that my bag shows or worse it blows. I have to work on my hangups in this.
There's probably something I've missed. Feel free to ask question.
OMG, that is a crapload of work for you. there is nothing they can do to retrofit you for an inside
direct pathway to whatever is left of the end trail so you can lose the bag?
A side story below to explain what I'm talking about and why...
My late sister's kids, a niece and nephew plus nearly all of their 11 offspring (and most of their 23 grandchildren) have a hereditary disease commonly called F.A.P. that ultimately turns the literally thousands of intestinal polyps that F.A.P. causes to grow out of control -- and nearly always turn to cancer.
All who inherited it and whose colons are so afflicted have had major surgeries to remove varying degrees of their large intestines and sometimes their rectum to get rid of the cancer. My brother-in-law died from it at age 39 because it metastasized into his liver, kidneys, lubgs, and brain. He never knew that he had F.A.P. so never sought out treatment. By the time he did, it was too late and both of their children tested positive for it. I don't know why both of them chose to have so many children, knowing that most would end up with it too, but that is another story).
All of them eventually get a rebuilt, albeit quite short, elimination route and lose the bag about 6 months to a year after their surgeries to remove the large intestines (and they get a re-constructed rectum if they lose that too) It is a nightmare for them during the process, just as I figure it must be for you, especially having it happen to you without warning from a different cause.
Anyway, that info is all a lead up to asking you if your docs think that YOU could be a candidate for a rebuilt system to make your life easier without the bag?
A side question: If you experience the stuff they do after losing the large intestines, I'm guessing that you have a trial and error with your food intake? Some foods are okay and others are a never eat that again? (Salad and many veggies seem to be the one that really vex them as they can't digestive it without their large intestine.) Also, do you have to have special vitamin injections to make up for not being able to get the benefit of them for the same reason? My Crohn's and malabsorbtion disorder forces me to take massive doses of some vitamins just to get any to be absorbed.
Trish, I truly hope that you can get that reconstruction done and get rid of the stoma and bag. I can't really imagine how hard that is for you in so many ways and hope it can eventually be easier for you.
I hope I haven't asked any sticky questions. If so. Please just ignore them. I don't want to upset you or make you feel uncomfortable. I'm just interested and want so much for better health for you!
I am approaching my surgeon in January about reversal. I didn't bother right now because there are two surgeries involved. One, recover in hospital for few days, wait 6-8 weeks than the other and recovery.
I am oficiating my son's wedding in December. I don't want to be in recovery then .
As for food, I haven't stopped eating anything. I do notice coffee and milk make things "watery", nuts/peas/corn come out whole (the popping feeling is odd). Some create gas and I have a balloon for a bag, but unless something really starts bothering me I am going to eat what I love.
Anything that comes out whole is a freebie food that isn't broken down or digested,, but made your tummy happy for a bit. Incorporate that into your weight reduction plan because they are essentially no calorie "cheats" for if you feel deprived while slimming down.
In that regard only, your having no large intestines is kinda sorta like my malabsorption disorder in that the foods and vitamins that I can't breakdown or absorb are wasted and deprive me of any benefit of eating them (ie: contribute to my difficulty keeping weight on) while, for you, they are freebies to satisfy your hunger while working on losing weight. So take advantage of them!
I saw your Facebook post about stuff going on and responded there. I hope it helps you.
Sad that your hospital didn't keep you better informed.
Still, I thought she was quite out of it while in the ICU and very nearly died from the rampant severe infection and emergency surgery.
There's NO WAY someone awake and fully conscious wouldn't recognize that they weren't "pooping" the usual way or that an ostomy bag was being emptied and replaced.
So I think she wasn't able to be told during that time frame.
I recall waking up days after my second fusion surgery and having no clue how close I'd been to death or having multiple transfusions daily because they couldn't stop the hemorrhaging after the surgery or stop the infection that was spreading because of my severely compromised immune system. I didn't recall visitors or anything that happened during those days. Likely Trish doesn't either and doctors couldn't talk to a comatose, severely sick patient until she came out of it to full consciousness.
I also had a wound vac going and oxygen. They probably figured, one issue at a time LOL. Processing the thought that my family was called three times because of various organs shutting down was quite the revelation. No bright lights or visions (damn no story).
I have no memory up until about 3.5 weeks when the "who are you" "do you know where you are" questions started daily. I wanted to make a wipe off board LOL. Had a feeding tube and catheter, and another spot for fast medications. Looked like the borg.
Now my problem is weight. I am on the exercise bike daily for an hour and just can't lose...
Yeah, the hardcore pain meds, especially morphine, contribute to a
severe difficulty in remembering or even understanding what is going on around and to you. Be glad you don't remember any of that stuff. No doubt it would have been terrifying if you'd been awake and understanding it all.
I'm guessing that you were near death but hadn't crossed over to technical death where your brain experienced oxygen deprivation because you were on full life support to prevent that. That may be why you never experienced any weird stuff like bright lights, dark tunnels, or other often described phenomenon.
Those things usually reported in near death, oxygen deprivation situations can be attributed to the brain deprived of oxygen OR, for believers, visions of heading to heaven. No one really knows because no one has ever survived actual, no turn-around death, only technical death and resuscitation. Be glad you didn't go there. It can't be a good thing for your brain to be deprived of oxygen, even if no obvious damage can be found.
on August 8, 2025, 6:21 pm
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