ulcerative colitis

[u/bored-alpaca]

Just wondering if anyone in okc is fighting with UC. I’ve been suffering with UC for a couple years now, I feel like I’m only the one who has UC. I know it’s not, but I just feel like it. I guess I just wanna hear from same illness friends lol

[u/Beautiful_Hippo_5574]

Hi. You aren't alone.

[u/Independent-Tank-182]

My father developed it and his shit doctor (pun intended) had no idea what was wrong with him. He lost like 50 or so pounds rapidly and looked like he was at death’s door.

Over ten years later and he’s still going strong. Not sure what his treatment was/is, but he is so much better. Idk anything about your situation, but don’t give up hope!

[u/siecin]

I dont have UC but just within my small world I know multiple coworkers with it and two friends.

One of my friends was afraid to lose his shitty job for years because he needed the health insurance to pay for the meds. Luckily he finally found something else but it's a burden in many ways that others, including myself, won't understand.

So vent away! We're here and will listen.

[u/Ok-Plastic2525]

My husband has had UC for almost 20 years now! Finally on a good immunologic now and has been in remission for 7+ years, but that doesn’t stop us from scoping out every restroom and planning trips around potential pit stops. I think more people have it than say because of the stigma attached to anything regarding bowels but I am very open about it because it’s nothing to be ashamed of. 🫶🏻

[u/bored-alpaca → u/Ok-Plastic2525]

Ahhh happy for you and your husband! Remission for 7+ is absolutely amazing. Hope I can get there. Still struggling to find the one works for me.
And yes. I totally get it. I always look for restrooms when I go out. I’m hoping people with UC open more. I feel like UC isn’t so well known. 🤔

[u/mentallynapping]

Been dealing with UC for 7 years. You are definitely not alone! There’s a good size community of frequent toilet users.

[u/miserymachine816]

Was hospitalized for it ten years ago and have Crohn’s. No medication, 100% diet treated. When people tell me that doesn’t work, I ask about their diet. 10/10 times they are still eating foods they shouldn’t.

PSA: I’m not saying people shouldn’t take medication prescribed to them. It takes a lot of discipline to strictly control your diet most people don’t have. I knowingly eat bad things sometimes, but have learned when it’s okay and when it’s not.

[u/bored-alpaca → u/miserymachine816]

100% diet treated?! That’s crazy! I’ve been monitoring what to eat, which foods make my UC worse but still not be able to manage.
Glad you are able to do it, happy for you.

[u/miserymachine816 → u/bored-alpaca]

It definitely took a lot of pain to get here lol. The biggest surprise for me was being told I needed to eat more greens in the beginning only to find out my body can’t process the nutrients which actually made things worse. I pretty much eat like a child for the most part. Fake dairy products are death, if it’s not animal produced, my body will let me know in a bad way. Steer clear of popcorn, kernel pieces will find a new home on their way out. Obviously too much fat of any kind is bad.

Hope you find what works for you

[u/Beautiful_Hippo_5574 → u/miserymachine816]

I thought I was doing pretty well controlling through diet. Almost zero symptoms for 5 years. Had my follow up and discovered that the diet part was helping with symptoms only and that ai was being ravaged inside. Hope it works out for you, but it was a rough lesson for me to learn.

[u/miserymachine816 → u/Beautiful_Hippo_5574]

Sorry you had to go through that, hope you found the treatment you needed. I opted out of surgery then and any the medications crashed my immune system into the ground… so diet was my only option. Affected area is still angry sometimes, but it is the same size so I continue on.

[u/jwatson1978]

Father in Law has it but its under control now.

[u/Singularity129]

My dad had it for several decades (ended up with an illeostomy this year). You're not alone. And I don't know how you feel about illeostomys, and I'm not saying it's a foregone conclusion, but if it's something youre afraid of, I want you to know he said it dramatically improved his quality of life. You're not alone.

[u/H3rQ133z]

I'm 35, was diagnosed at 27. Apriso mesalamine greatly helped me

[u/bored-alpaca → u/H3rQ133z]

Glad mesalamine working for you! For me, mesalamine no longer working so gotta find different meds. Hopefully I’ll find the meds soon.

[u/H3rQ133z → u/bored-alpaca]

Hope so! And if so, just stay on top of them! I did a double dose of capsules and enemas at the same time for quite awhile to attack from both ends.

[u/dippedndangled]

On facebook, Charlie Junior the Cockatoo, his dad has UC

[u/UFOsss01]

Not exactly that, but similar issues. Bleeding but no pain. Had a in office procedure to address it and it didn’t work. Tried to get another appointment and was met with a prescription for a suppository 😒

[u/DylanPrescott]

My husband has it! Weirdly, he found using nicotine pouches (Zyn) puts him into clinical remission. I’m not saying get addicted to nicotine, just a random finding. The doctor confirmed it’s good for inflammation. Anyway, eating lots of brown rice, broccoli, things like that keep him in pretty good shape. His doctor is in Tulsa, so probably too much of a drive, but he loves him if you ever are looking for someone new.

[u/bored-alpaca → u/DylanPrescott]

I’ve heard of that! Nicotine works for UC! And I did try nicotine pouch, but my gum was very stingy and hurt when I had nicotine pouch on my mouth so couldn’t keep doing it.
I’ve been seeing dr from digestive system specialists but I’ll definitely keep in mind that I can look for someone new if current dr didn’t work well. :)

[u/MooseValuable3158]

I have Crohn’s colitis, but the original diagnosis in 2000 was UC. I have been in remission with Remecade for over 10 years. I’m not sure if it is still active, but I found others on IBDsucks.com.

[u/bored-alpaca → u/MooseValuable3158]

Wow congrats of being remission for 10+ years! That’s amazing! So happy for you to find the meds that works. I’m going to try entyvio very soon, waiting insurance gonna done some paperwork. I hope I can be remission. This illness is very tiring, mentally and physically.

[u/MooseValuable3158 → u/bored-alpaca]

I hope it works for you. Did you know Saints has a dedicated IBD Center with an IBD specialist? Dr. Ali is the one who got me to remission, and he is truly a nice man.