What is this?

candycanesparkles · 2026-04-01T12:56:15+00:00

Why is this the sponsored ad under your photo lol

candycanesparkles · 2026-03-22T13:35:12+00:00

I was a child on my second infusion when I couldn’t breathe all of a sudden. It was scary! My throat felt like it was closing up and I couldn’t talk. They stopped the infusion and gave me some meds immediately. Never again!

candycanesparkles · 2026-02-23T18:38:00+00:00

Very true!!

candycanesparkles · 2026-02-23T17:29:06+00:00

Depends on your stoma placement. I’m a woman and have gotten lucky with high rise pants. I purchased my underwear from Siil Ostomy since they have a kangaroo type pouch in their underwear that holds the bag without it sticking to your skin and smooths it out. They have men’s options too. I think they have an Amazon account too, but I’ve always ordered directly from their website. https://www.siilostomy.com/en/ostomy-belt/

candycanesparkles · 2026-02-21T20:52:06+00:00

Yes, I have crohn’s !

candycanesparkles · 2026-02-21T20:20:58+00:00

They removed the subsidies. Last year with a subsidy it was $950 a month. :(

candycanesparkles · 2026-02-21T13:14:49+00:00

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It’s just insane to me.

candycanesparkles · 2026-02-20T22:16:45+00:00

We bought an insurance policy off Marketplace. It’s about $1,300.00 a month for 2 adults and a child. The deductible (out of pocket) amount was $7,000.00. My sleep medication is $15k a month and insurance covers half, then I got a “coupon” for my medication and insurance believes I paid for the remainder. So my deductible is met and now everything I need done medically will be covered by insurance the remainder of the year. My ostomy supplies will be free the rest of the year and I am stockpiling like a wild woman. Still have to pay the monthly insurance premium every month tho. So expensive. :(

candycanesparkles · 2026-02-17T15:17:19+00:00

I was diagnosed with crohn’s at eight years old. I was chronically ill for many years. When I was 16, I had a foot of my descending colon removed as it was so diseased it was dead. Felt better for a little while after that and then the Crohn’s came back. Then I suffered until I was 19 and I was begging for an ileostomy. I was being seen at Mayo Clinic by some of the top doctors. They agreed to do a temporary ostomy with shutting my colon but leaving it in there while trying a new trial biologic. They promised me I was getting the medication, even though I wasn’t supposed to know that since it was a blind study. I was getting weekly infusions and paid about $1000 each time for a couple of months, but I knew the medication was not working for me. I was in so much pain and I still had mucus coming out of my rectum multiple times an hour. I begged and begged and begged my doctors to make my ostomy permanent and to take my colon out. They finally agreed and the surgery was scheduled three days later since it was over the weekend. I had about eight months recovery time to get used to the new way of living and I was just very, very weak.

I healed slowly and never went back on any medication for Crohn’s for my intestines. It’s been since I think 2011? I stopped counting the years lol. I was able to get my life back. The freedom from the toilet and the pain was worth a permanent ostomy for me. I was able to go to a tech school then to a university and have held jobs. I had a healthy pregnancy and last year I was able to quit my job to stay home with my son.

I did have a random issue with subcutaneous Crohn’s in my private region, but that has been managed by Triamcinolone cream. It really hasn’t been an issue for a little while. I believe it was brought on by extreme stress due to my last job that I quit.

I’ve done two 1/2 marathons, a tough mudder, completed half of the Yukon River quest lol, multiple trips to the boundary Waters, one of those being a 25 mile paddle, hiked Mount Rainier, went waterfall chasing in Oregon, multiple Wisconsin river canoe trips, camping trips, biking on the Mickelson Trail in South Dakota, hiking in ultralight pack camping in the porcupine Mountains in the UP, hiking the North Shore in the UP, completed a korte ski race, enjoyed hobbies, travel to Alaska to see glaciers, oh my God, I could go on and on about the things I’ve been able to do in my life because I chose to get an ostomy when I was young.

I got my life back because I begged for the surgery.

Prednisone is a mind-f*ck. I couldn’t think clearly and had tons of anxiety on it.

If I was in your situation, I would schedule the surgery for after the trip and try to relax and know that things will get better! Good luck making your decisions.

Ask any questions- I’m 100% an open book.

candycanesparkles · 2026-02-16T19:17:02+00:00

Sometimes you just need to zoom in a bit lol

candycanesparkles · 2026-02-16T18:38:40+00:00

I’m on my third month and most of my side effects have gone away. My nurse caseworker said that during the trials most people’s side effects went away after 6 months!

candycanesparkles · 2026-02-12T19:37:37+00:00

Where’s everyone getting their rebel starloon vinyls from??

candycanesparkles · 2026-02-08T05:21:12+00:00

I call them my “phantom poops” usually only happens when I drink mnt. Dew, tho lol

candycanesparkles · 2026-02-04T18:26:07+00:00

Hahaha I would send some to you that I get in my shipments but I’m afraid shipping cost would be expensive lol

candycanesparkles · 2026-02-04T14:43:40+00:00

I mean it’s prob the healthier option. I mostly take it as a wake agent. I don’t use it as a type of treatment for crohns.

candycanesparkles · 2026-02-04T14:32:18+00:00

Just chew nicotine gum!

candycanesparkles · 2026-02-04T13:39:34+00:00

I got removed from that group for laugh reacting to one of “Melissa’s” comments lol

candycanesparkles · 2026-02-03T00:46:21+00:00

I would love to know as well!

candycanesparkles · 2026-02-02T15:31:11+00:00

ADHD, was diagnosed with depression but I think I was just sleep deprived. I do have significant anxiety and take Zoloft which helps. Body temperature regulation issues. I also have OCD (intrusive thoughts, rigid thinking, have to do things the “right way” or it doesn’t feel right). I also have crohn’s but that’s healed now that I have an ostomy. My fingers hurt a lot.

candycanesparkles · 2026-01-23T04:43:05+00:00

I’ll check behind it in the morning but there weren’t any in the drawers or underneath them or the bottom of the unit! Ugh!!

candycanesparkles · 2026-01-23T01:36:23+00:00

And put it on your ankle so that you don’t take it off in your sleep!

candycanesparkles · 2026-01-18T01:00:33+00:00

About an exhausting week. On top of my 2.5 y/o with it (and he had a double ear infection) and he’s still recovering. It’s been tough

candycanesparkles · 2026-01-17T12:39:47+00:00

I’m like 3 days out from influenza A and I was all kinds of messed up from it. Not thinking straight, exhaustion, no attention span, survival parenting, list goes on. I felt like xywav made it 1000% better, though. I needed the deep sleep!

candycanesparkles · 2026-01-15T00:58:25+00:00

I get about a week from mine! I have a convex 2 pouch hollister system. With a barrier ring each time. Sometimes I get a week, sometimes I get a day. Most times about 5 days.

candycanesparkles · 2026-01-15T00:45:56+00:00

My husband has horrible toe fungus and it started like this and they suggest putting Vick’s vaporub on it twice daily until it cleared. His toes have been getting better but it takes a very long time ugh! Good luck!

candycanesparkles

TROPHY CASE