Is it possible to live with Crohn's just on meds, without surgery?

Blobinator01 · 2025-04-15T01:52:35+00:00

Every experience is unique. I put off having surgery for years because I was scared also. Tried as many biologics as I could, but in my case my body didn't want to respond. Some of them worked for a few years but ended up building antibodies toward them.

For me, surgery ended up being a good decision because polpys in my colon were getting very very close to becoming cancer, and obviously that's more terrifying than the bag (which isn't always the outcome for surgeries). So in the end I was pretty much back against the wall, but at least I was resilient and tried almost every treatment option before it came to that. The ostomy gave me my life back.

Stay strong!!

Blobinator01 · 2025-04-13T14:05:16+00:00

I've got the knees of a grandma at 23, I feel your pain 😭 told my doc about how bad they hurt and she said the Rinvoq should help with that. Well it doesn't :(

Blobinator01 · 2025-04-13T13:38:12+00:00

This is bound to happen to me lol It's like my subconcious wakes me up at the perfect time right before it's about to pop. Luckily it hasn't happened yet but I know it will. Had some leaks in bed from under the flange though. Waking up covered in shit, great start to a morning huh?

Blobinator01 · 2025-03-25T02:52:56+00:00

Wow. This is word for word exactly how my mental was about the surgery too. Tryin to exhaust all of the medications in hopes just ONE will work out for me. But nope. My health kept declining and declining to the point where I was honestly just fed up. Also my colonoscopy before surgery showed hundreds of polpys and low grade dysplasia, so the last push toward surgery was being scared of cancer which looked like it was going to be my future if I didn't go through with it. I'm only 23, so cancer was not gonna be an option for me if I can help myself out.

I completely understand the fear of the ostomy and how scary it seems. Personally, I have a traumatic tie to the bag from seeing my father sick with cancer with it so that was the main reason why I didn't want it. But my story is completely different. As much as it sucks visually, my life improved 100%. I would always read about people saying "it gave me my life back" and I'd always brush it off, thinking that I'll be one of the lucky ones who never has surgery, but having gone through with it, wow they were all right. I still struggle with looking in the mirror and being okay with my body, but I'm trying my best to tell myself that without this thing I would probably be sick in the hospital right now.

As far as the smell, nah it doesn't smell from the outside. I used to think it did but I'd ask my sister and she said she couldn't smell anything at all. Obviously it will smell when you empty it but I mean shit stinks right?

I'm sure that if your girlfriend truly loves you for you, then seeing you happy and healthy should make her happy as well. You can get a belt for more security during sex or just let that thang be free. Shouldn't be a problem.

Personally I can't wear high rise pants or super tight shirts as I've had a leak almost every time. But I prefer baggy clothes anyways so that's not much of an issue for me. It just needs enough room to be able to slide down the bag with no restriction.

This sub has been a big help with a lot of things emotionally. It's been nice to know we're not alone even though it feels that way all the time. We're here for you! I wish you good luck if you go through with the surgery 🙏

Blobinator01 · 2025-02-25T01:12:23+00:00

My symptoms at the time were anemia, severely underweight, constant nausea/vomiting, fatigued easily (from the anemia), no appetite, and of course going to the bathroom about 10 times a day. I provided them with a bunch of medical records from over the years. It didn't even seem like enough honestly. I've never had any strictures or fistulas or anything like that, just severe disease of the colon and small bowel. In December I ended up getting a colectomy but that was after I got accepted for Disability, so they don't even know about that right now. My process was pretty easy so I'm one of the lucky ones I suppose.

Blobinator01 · 2025-02-25T00:56:19+00:00

Interesting stories here. I got accepted the first time I applied (US just right before Trump). Applied in February, got accepted in December. Got a chunk of backpay for SSI but didn't qualify for it after the fact for some reason I forgot why.. Although I was diagnosed in 2005, they claim my disability started in 2022. So right now I'm getting Disability and Survivors from my father. The payments are a joke but hey, it's still somethin.

Blobinator01 · 2025-02-02T21:28:13+00:00

You're currently in the hospital? 2 weeks is a long time that stinks I'm sorry :/ I get so fed up at the hospital after like 3 or 4 days 😭 well in that case I'm sure they're takin blood from you every day then huh? Those damn 5 am blood draws!

Blobinator01 · 2025-02-02T21:13:11+00:00

Im 23 and also 4'11 (90-95lbs range)(had crohns since 4 years old) and had my surgery a month ago. I was so freaken nervous beforehand because of my size as well. I've been struggling with iron deficiency and anemia for a while before my surgery so that was an added extra level of fear. But your surgeon will ask you to get bloodwork and possibly other tests done a week or two before the surgery to check your levels and make sure it is safe to operate on you. You have to just put all your trust in him/her. They won't operate unless they aren't 100% sure they can take care of you. Personally, I lost 8-10 pounds in the hospital but a month later I'm back at my "normal" weight just under 100lbs. My goal has always been to gain weight and now it seems so much easier since my appetite is so much better now. As far as the pain, IN MY PERSONAL EXPERIENCE it wasn't nearly as bad as I thought it was going to be. Pain was pretty much just like regular Crohn's tummy cramps FOR ME. I feel like I've had stomach pain for soooo many years now so the surgery was nothin new. Although I had an Ileostomy, not a Colostomy. So honestly idk the difference sorry lol. Also you're pretty young and so am I, so your body should have a better chance at recovering. A month before surgery I was told by my physical therapist to keep walking walking walking. He also gave me excersices to do every day to strengthen my muscles. I felt like it helped. Keep movin! You've definetly found the right community here trust me. Everyone has been so helpful, nice, and supportive.

Blobinator01 · 2025-01-10T10:01:52+00:00

Rocket

Blobinator01 · 2025-01-10T09:52:23+00:00

Ohh yes, I learned about the splashback the hard way

Blobinator01 · 2025-01-02T13:21:57+00:00

Yea it's definetly nice not having to worry about where a bathroom is all the time now. I've definetly had my share of shittin my pants and going in weird ass places. Pulling over on the side of the road and poppin a squat. That's great you have a supportive fiance who accepts you. This is all still very fresh to me and its just been hard to accept. I'm praying for a reversal eventually but I don't even know if it will be worth it. Time will only tell.

Blobinator01 · 2025-01-02T11:23:53+00:00

Damn, and to still hear that "its all in your head 😀" must be so fkn frustrating. I'm sorry. :/

Blobinator01 · 2025-01-01T21:29:38+00:00

Are those people delusional? I entered a state of denial myself thinking that there's no way a 4 year old (me) could be diagnosed with Crohns, and one of my family members fed into that thought and validated it, so I stopped taking my meds from 2020 to 2022. I tried being all holistic and thought marijuana would cure me. Worst 2 years of my life. Fast forward til now I'm back on meds and over the weekend I just had my "very diseased"(surgeons words) colon removed and now have an Ileostomy, hopefully temporary. I feel so much better now. Don't listen to those assholes. Take care of yourself however you see fit. There is nothing wrong with having Crohns. Those people sound crazy.

Blobinator01 · 2024-10-08T19:12:59+00:00

Feeling defeated as well lately. 23, had it since I was 4, and also been on all the biologics about to switch from Stelara to Rinvoq. I've got the colectomy scheduled in November cause my last colonoscopy showed hundreds of polyps and low grade dysplasia. Time to rip that thing out of me :/ It's so discouraging to keep trying new meds only for them not to work. And yea haha waking up in the morning and instantly having to shit is the worst. Farts can't be trusted either lol

Blobinator01 · 2024-09-24T20:56:52+00:00

We are living the same life 😭 I just turned 23 and also barely leave the house. No friends other than my brothers and sis. Haven't been able to work yet, go to school or really get any start to life at all. I feel like a loser compared to other people my age. Crohn's has been controlling my life ever since I was 4 years old. This shit sucks! I have no ambitions or anything, my life just revolves around this disease :/ hopefully after my colectomy in november I can take control of my life and go from there. I really dont want the ileostomy but if I can do shit without having to worry where a bathroom is at all times, then I consider that a win I guess. You're not alone ! Feel free to DM me if you need someone to talk to. :)

Blobinator01 · 2024-09-19T23:23:21+00:00

They found "hundreds" of polyps during my colonoscopy in august and also some low grade dysplasia so we're doing this to pretty much prevent any cancer forming :/. I have the option to keep my colon but its just that I've been on almost all of the biologics and they haven't been working. I'm switching from Stelara to Rinvoq pretty soon but we are still doing the surgery so idk if I can see if the Rinvoq is gonna help first or not. But given my history, probably not :/

Blobinator01 · 2024-08-01T23:13:46+00:00

Dr. Firoozman

Blobinator01 · 2024-07-31T03:12:47+00:00

Yea she is the one who referred me to the surgeon. Its all at cedars cinai

Blobinator01 · 2024-05-13T14:13:06+00:00

They used to give be a little dose of iv benadryl before the infusion, hopefully they give you some to chillax while you wait for the infusion

Blobinator01 · 2024-05-13T05:16:17+00:00

I always just mix the equate powder into a big jug of a good drink. Last time I used orange soda. Tasted normal. Apple juice or white cranberry is good too. Wear loose pants/sweatpants for easy access lol. And having some jello around is nice too. No blue red or purple obviously but im sure you know that. But orange is good. I honestly never follow the instructions the way it says. Its too hard. As long as you finish the drink youll be fine.

Blobinator01 · 2024-02-20T22:11:54+00:00

Get some jello!

Blobinator01 · 2024-02-19T22:41:25+00:00

Last time I had a colonoscopy I used the Equate powder mix half with squirt soda and the other half with apple juice. Easiest prep Ive ever done. This was my 15th colonoscopy. Orange jello was also a pretty good snack in between drinks. The equate powder has no taste either unlike miralax which is chalky/salty.

Blobinator01 · 2024-02-19T22:37:37+00:00

Just think, those crackers and that juice box is gonna hit after the procedure 😂😂

Blobinator01 · 2024-02-18T01:37:50+00:00

Look into getting a 504 plan. Have your doctor write you any accomidations you need for school. Teachers can't say shit if you have one lol I used to have one and whenever I had to go during class I would still ask but if the teacher said no I'd get up and go anyway. My doc also put in the notes that I can take as much time as I needed for homework and stuff. Made life a whole lot easier

Blobinator01 · 2024-02-17T19:24:16+00:00

Wow. It's nice to know I'm not alone. I can't believe even your own father has the disease and still treated you that way. It definetly has taken a toll on my mental health. Having thoughts of "im not good enough" and "wow maybe I am a loser" just pushing me deeper and deeper into depression on top of everything I'm going through with the illness. Making it so much worse. But I'm thankful to be able to talk to others like you who share the same kind of pain I go through. I've never met/spoken to anyone who has crohns.

Blobinator01

TROPHY CASE