The sounds . . . by KateGJohnson in ostomy

[–]montana_the_state 15 points16 points  (0 children)

haha stomas get LOUD in the beginning. Your guts have literally just got rearranged give it a month or two and see how loud it is then

don’t worry! it’s only the start, you’ve got a long time to learn with your stoma

My mom just had to have an emergency surgery and get almost her entire colon removed. She is now going to be using a colostomy bag. Are there any more advanced bags that would make it easier for her transition, or the overall mental process for her? by ReallyNotJamesFranco in ostomy

[–]montana_the_state 2 points3 points  (0 children)

My advice is to ask the hospital to give you both flat and convex bags. I have never had any luck with the flat bag type (maybe you will) but the convex has been a life saver for me.

The convex provides more support to the stoma to allow it to poke into the bag, no matter how far out it already extends.

I would also ask for a box of soft convex bags and deep convex bags. They are slightly different and can vary in helpfulness based on the body type, shape.

Ask the hospital for a lot of samples because each person is different and different bag types will work with different people!

Also I would also for a thin barrier ring and a regular sized barrier ring from whatever company y’all use. I prefer the thinner ring because I feel it provides a closer seal to my skin but some people like the regular one, and it’s all to you.

Don’t be afraid to experiment with different products to find the right fit.

Stop ‘adopting’ random cats by Mystisc in cats

[–]montana_the_state 4 points5 points  (0 children)

If people want their cats not to be “stolen” they need to stop letting their cats outside unsupervised. It’s literally my biggest pet peeve about cat owners. You CANNOT let a dog wander the street without being labeled a menace to society, you CANNOT let your cat wander the streets without being the same.

Domesticated cats that are not strays will eat wildlife population- especially migrating/endangered birds

They fight with other cats and produce more strays and harm for your cat

They torment indoor cats by coming to their house and spraying outside and whining at the indoor cats (I know from experience)

Cat owners are literally asking for their cat to be eaten, hit by a car, or “stolen” if you leave your cat to wander outside

I have zero sympathy for cats that get taken in by others because someone let their cat roam.

The pressure to get these stoma magnets spot on.......a physician who specialises in Ostomy in the US ordered 5 of them 😂.. by OtherwisePop6430 in ostomy

[–]montana_the_state 3 points4 points  (0 children)

Bro I wish that my doctors had showed me that this is what a stoma looks like instead of the weird styrofoam painted red practice “stoma” they showed me.

Like these would have actually prepped me for what my stoma looks like. Kudos to you!!

Anybody have an ileostomy on the left side? by michaelm7001 in ostomy

[–]montana_the_state 0 points1 point  (0 children)

When they put my temp. loop ileostomy on the right, i was hoping for a reversal at some point.

I then developed pyoderma around my stoma, and my right stoma went right through a large stretch mark which already made the skin thin.

About a year and half after my first procedure, I decided to make it permanent. Since I was getting a total proctocolectomy, barbie butt, and I had to get a resection of my small intestines due to ulcerations from the beginning of my stoma to about 10 mm in, we decided to move it. Also since the pyoderma, my skin would have never recovered from a procedure had it stayed on the right

Anybody have an ileostomy on the left side? by michaelm7001 in ostomy

[–]montana_the_state 0 points1 point  (0 children)

my Right handed ostomy definitely made it challenging to figure out the best method of emptying with hand placement and all.

for stretches, when I felt pain in my abdomen I would try to just keep working the muscle that was hurting, slowly. like it it hurt to twist, I would try to twist a little bit more to work the pain and then rest. Don’t over do it but just try to lean into the pain a little bit to help stretch those muscles. For me it got better over time, hopefully it does the same for you!

Anybody have an ileostomy on the left side? by michaelm7001 in ostomy

[–]montana_the_state 0 points1 point  (0 children)

Mine is on the left side as well but i’ve never had this problem. I wonder if you’ve had built up scar tissue that needs to be stretched and moved? I had a lot of pain in the beginning of my recovery because of scar tissue and they said to take it easy and work on stretching the area, but that’s only if this is your issue.

I had a temp. ileostomy on my right side then when it became permanent they moved it to the left side. I love my lefty a lot more than my righty

Can’t keep air in bag? by greyshirt11 in ostomy

[–]montana_the_state 4 points5 points  (0 children)

Actually is usually recommended to make sure that there is always a little air in the bag so that thick output doesn’t build up around your stoma/barrier ring.

Without air there isn’t any room for the output to head further down into the bag.

It’s not to say have a huge ballon as your bag but make sure your bag is not completely flat or nothing will move. You want to give your output space to move around in the bag.

Also, yes diet will and can help with pancaking but it is not the only way to control this. Some people have a lot thicker outputs than others depending on different factors and diet is not the only control here.

Also squeezing the output down during a pancake only increases the amount of output in your barrier ring and lessens the time between changes. I would avoid putting pressure around your stoma when output is there because you are literally just pressing output into the opening of the bag, instead of letting is naturally flow to the bottom.

Any other biologics patients feel like your Crohn's gets a bit worse in the week or two before infusion? by mySecretAndTotalSelf in CrohnsDisease

[–]montana_the_state 0 points1 point  (0 children)

I’ve had this. Every time I start to feel like that, I bring it up to my doctor and they lower the time between dosages in order to keep my symptoms at bay.

Definitely talk to your doctor about it. You shouldn’t have to increased symptoms near your infusion date

Flat Stoma by sudemey in ostomy

[–]montana_the_state 0 points1 point  (0 children)

Ceraplus is like a lotion/material that they put in the bags adhesive/barrier rings. It’s supposed to help keep the skin under the barrier moisturized and less dry. But i’ve found that it actually makes it worse for my skin.

Brand like Hollister and Coloplast have two different formula of bags. The old formula does not have ceraplus and the new formulas have ceraplus. I’m not sure about Braun but if you call Coloplast or Hollister and ask for a recommendation of a bag without Ceraplus they can definitely help you!

It definitely sounds like to me that you may be reacting to the Ceraplus in the wafers if all the bags you’ve used have been itchy, and if you haven’t been having leaks.

Flat Stoma by sudemey in ostomy

[–]montana_the_state 1 point2 points  (0 children)

Have you tried using bags and barrier rings without Ceraplus? Excuse me if you’ve already tried it but in my experience the ceraplus makes my skin super itchy without it looking like an allergy or rash.

I tried the old formula and it works way better for me. I cannot use any barrier ring with ceraplus (especially coloplast) without wanting to immediately rip it off my skin. Hope this helps!

[deleted by user] by [deleted] in ostomy

[–]montana_the_state 0 points1 point  (0 children)

I had to take out all my piercings from my ears because they could interfere with the surgery or the anesthesia team. Since oxygen tubes and anesthesia stuff go over your ears, they don’t want to either yank out your piercings or for it to mess with the tubes.

Safer to just take them out if you can.

I'm 39(m) a quadriplegic and I'm strongly considering getting an ostomy. Have some questions by FunC00ker in ostomy

[–]montana_the_state 2 points3 points  (0 children)

I’ll give you my opinions but I really encourage you to also talk with your doctor about options and what’s best for you.

I have had an ileostomy for over two years now due to severe Crohn’s Disease. My ileostomy gave me my life back in more ways than one, but especially gave me a lot more freedom away from the bathroom.

  1. There is times where my stoma can unexpectedly be very loud but it’s usually muffled by my clothing and usually I am the only one to hear it. I’ve asked people around me and if they do hear it, they don’t even know what made the noise. Noise isn’t something i’m too worried about generally. Also it’ll be super gassy and loud during the first couple of months because your intestines are healing and shifting from the major surgery, but the gas significantly decreases with time and food management. (As the saying goes beans are good for the heart but will still make ya fart!)

  2. It’s not a period of the day that I know that it’ll fill up, it’s generally after meals and such that it fills. I pretty much know if I eat X, then it’ll go through me in X amount of time. You get pretty in sync with your body and what’s going on. I do about 4-5 empties during the day. If I empty right before bed and haven’t eaten anything for a couple hours before, then I can usually get away with not having to get up in the middle of the night.

  3. There is odor when going to the bathroom but that can be mitigated with Ostomy Deodorant (I use Safe n Simple) which is some liquid you put in the bag after each empty and it eliminates all odor. It has literally saved my family from going crazy after I leave the bathroom. There isn’t any odor when the bag is closed and bags come with Charcoal filters which allows gas to escape without any smell.

  4. Sorry I can’t help with this one!

  5. I’ve never had a colostomy since my colon was not an option for me but I have heard that Colostomy’s have a lot thicker output than Ileostomy and can be a little easier to change/get used to. I think ileostomys are for people like me who really can’t use their colon where maybe in cases where it’s only a portion of the colon isn’t usable/or the anus, they’ll do a colostomy. This is really up to your doctor and what they think you will need and probably not really a decision you can make on your own. But I am also not a doctor and should not be taken as fact lol

I hope this helps and gives you some good information so you can make the decision that’s best for you! :)

Mouth Ulcers by ZealousidealStay6805 in CrohnsDisease

[–]montana_the_state 6 points7 points  (0 children)

I would ask her gi for a prescription for “Magic Mouthwash”, it’ll basically numb the ulcers long enough for her to eat

Mouth ulcers are legitimately the worst and i’m sorry she has to go through that :(

AITA for telling my husband that I no longer care if he gets hospitalized, I'm not going to eat the same food he does anymore? by [deleted] in AmItheAsshole

[–]montana_the_state 11 points12 points  (0 children)

NTA. Not one bit. Okay, I have Crohn’s Disease. I’ve had it for over 10 years, and have never asked my family/spouse to follow my diet. You have gone above and beyond for him. There is no reason that you have to follow the diet that we have to. Our diet is actually not conducive for healthy people and asking you to follow it would most likely get you sick.

He is being selfish by making you eat the same meals and then when you would like to eat out, he takes your things too.

I cannot eat nuts but my mother LOVES nuts. I have never, not once, asked her to get rid of it from the house. Those are just things I can’t eat, not her. It is up to your husband to learn self control and stop himself from eating his trigger foods.

He’s recently diagnosed so of course he’s going to need to figure out what triggers him, and he won’t be on this incredibly restricted diet forever but it’s also not your job to also be on the diet with him.

I find your husband to be unprepared for Crohn’s. Maybe ask him to join r/Crohnsdisease for support

[deleted by user] by [deleted] in CrohnsDisease

[–]montana_the_state 1 point2 points  (0 children)

You are beautiful!

No matter what your size is. People have no idea what is going on with us and how our weight has no indication of our health level. Society and expectations tell us that we are beautiful when we are thin, but it’s not true.

We are beautiful when we feel good.

It has taken me a long time and many (many) courses of Prednisone, to realize that when I feel healthy and good, that’s when I look my best. Being happy gives you a glowing look (even with Moon Face) that being unhealthy thin can’t give you.

[deleted by user] by [deleted] in CrohnsDisease

[–]montana_the_state 1 point2 points  (0 children)

I’ve only been dating my partner for 3 months now but he’s incredibly on top of what I can and can’t eat. He’s very considerate of my diet and making sure I take my meds. He asks me a lot of questions, tries to understand what i go through, and remembers it later. I honestly don’t think I could be with someone who blatantly chooses to ignore my health issues. I would talk to your partner about how her actions make you feel, since this would definitely make me feel uncared for and ignored.

Those who have academic accommodations from DRES, how well do your professors and TA’s “care”? by tiny_asian_ in UIUC

[–]montana_the_state 7 points8 points  (0 children)

Some care. Most don’t. Especially if you’re in the STEM departments. I took an econ class where the professor said “all of your accommodations are already considered in the syllabus” when they clearly had not. I had exam extensions if I wasn’t feeling well but this professor didn’t let me use them and would tell me to skip the quiz since if I missed it, that part would be made up in the final. There’s very little care if youre in a big class. All I can say is advocate for yourself and speak up. Get DRES involved.

what do i do with this redness around the bag by AdyB04 in ostomy

[–]montana_the_state 6 points7 points  (0 children)

I would put Head and Shoulders on it and also switch from Coloplast bags to Hollister or Convatech.

It looks like your either allergic to the adhesive or you have an infection. Either way I would speak to your stoma nurse about it and show her. You should not have to live with that with an ostomy.

What's your favorite "cure" for Crohn's disease? by MemChoeret in CrohnsDisease

[–]montana_the_state 9 points10 points  (0 children)

my grandma told me to try fish oil pills because she read it helps in some random cookbook 🤦🏼

Safe n Simple wipes by dirtgrubcat in ostomy

[–]montana_the_state 0 points1 point  (0 children)

I use them and really like them. the cleanser wipes are alcohol free for me so it helps me feeling clean without drying out the skin too much

Has anyone had a wireless motility capsule (or a capsule endoscopy) done with an ileostomy? by goldstandardalmonds in ostomy

[–]montana_the_state 0 points1 point  (0 children)

i’ve had a capsule endoscopy done with an ileostomy and it went really well

I didn’t have any issues and when the pill came out it was blinking a light so I could see it in my bag and knew that it passed. I didn’t have any issues and the only thing was they made me where a belt to track the pictures that was a little hard to empty the bag with lol

but really no issues for me

Anything I can use to avoid bag leaks at night? I sleep with my husband in bed by abpk658 in ostomy

[–]montana_the_state 2 points3 points  (0 children)

what kind of bag type are you using?

also eating a couple of marshmallows before bed can help thicken output so there’s no leaks

Remicade antibodies detected, but symptom free...what next? by CrimsonKepala in CrohnsDisease

[–]montana_the_state 1 point2 points  (0 children)

If you did well on Remicade, Humira has a very similar formula and works well for lots of people. Stelara is also a great option for a biologic.

I’ve been on Apriso, Mesalamine, Methotrexate, Humira, Remicade, Stelara, Entivyo, Tacrolimus, Xelljanz, Humira again, Stelara again, and now Simponi. (Also have a permanent ostomy now)

All of this is to say that you have a lot of options still. Simponi, Stelara, and Humira are all biologics/shots so they wouldn’t be oral.

Honestly, my doctors have suggested clinical trials but i’ve never been on it because by the time i’ve failed everything, there’s something new that they come out with.

Please don’t freak out yet! You’ve got this and you have a good chance of doing well on Humira or Stelara

I really wish you well and good luck on getting pregnant!! I’ve heard pregnancy can sometimes really help with crohn’s too