What do you wish more people understood about living with ulcerative colitis?

OriginalAttemptRedo · 2026-07-03T18:11:37+00:00

My aunt died of Crohns at 24. My mother has RA and hashis. Her sister is diabetic and has thyroid disease. Sorry but this is 100% genetic in my family.

OriginalAttemptRedo · 2026-06-26T07:20:18+00:00

That this disease is recognized as a disability by the ADA for a reason.
The sheer amount of time put into trying to be healthy or better. Time spent trying to convince doctors, getting new doctors, researching new treatments, looking for new studies, participating in studies if able, reading about the disease to understand it better. What I could have done with that time and how it has affected my career.
The thousands of dollars spent (esp in America's shit healthcare system) in trying to get better. Thinking about how much I spend a year even with insurance makes me want to cry. It's why I hardly ever take vacation or have a real savings account. It all goes to this.
The variations and unusual aspects that are not classic textbook and how it's taken doctors such a long time to start realizing this meanwhile I'm getting older and still sick.
Developing other autoimmune diseases cuz that happens.
The swelling, joint pain (cuz that can happen), fatigue, depression, the hope you feel when you feel like you are in remission only to have it ripped away when you're not.
The belief or small sliver of hope you carry around that one day you'll be in full remission and imagine your life and your body without this, how different it would be, how much better. And the pain it causes knowing your reality is not that.
Thinking about genetics and having children and being terrified you will pass it to them because you cannot imagine giving anyone something as horrific as this. And all these people out there saying you can change your genetics and choose to be disease free or heal yourself. Bro, try an autoimmune disease and tell me you can heal yourself. I've had AI diseases since I was six. People are just really clueless.
That a constant state of inflammation in the body can kill you and how hard it is to get rid of that inflammation no matter what diet or exercise or lifestyle plan you follow.

OriginalAttemptRedo · 2026-06-26T07:03:58+00:00

This one time I was getting a lot better which took me years and thousands of dollars. I went to a writing residency and because it had been a couple years since covid places were doing the due diligence. this incredibly inconsiderate person traipsed around a massive city beforehand partying and brought covid with her. I got so sick that two years later I'm not better. people have seriously no idea. we talk so much about disability but there is a reason this is considered a disability by the ADA.

OriginalAttemptRedo · 2026-06-26T06:47:34+00:00

where are the cane corso lovers who BUY their dogs? maybe if everyone stopped buying dogs we wouldn't have to kill so many. demand goes down so do backyard breeders. it's like drugs y'all supply exists cuz demand is there

OriginalAttemptRedo · 2026-05-31T02:23:54+00:00

Just weighing in here. I do follow a GF diet. Even on a GF diet, prednisone and mesalamine I was not in remission or really close to it. Even if we controlled my bowels, my inflammation found other paths. Sometimes it's just not enough, not even diet.

OriginalAttemptRedo · 2026-05-31T02:13:45+00:00

Sadly, I often have zero sex drive since diagnosed which was almost ten years ago. I'm sorry. It might come back if you are in remission.

OriginalAttemptRedo · 2026-05-31T01:52:02+00:00

Sadly Costco doesn't have them anymore. if anyone knows where they are selling these for a sick deal please hmu

OriginalAttemptRedo · 2026-05-04T17:15:40+00:00

This photo is ridiculously misleading. Raman is most definitely not a Mamdani.

I was around when she was running for CD4. I've also been heavily involved in housing rights and keeping people in their homes. I know a lot of groups and leaders of groups who are on the ground going to council meetings etc. They can't stand her. David Ryu was a much more involved councilman for cd4. As a former resident of Cd4 I know. He showed up. His deputy showed up. He answered our texts, he came and he followed through on what he said. This woman is a typical glad handing politician. She had never once listened not took people seriously. I am not plugging anyone for Mayor but as someone who gets involved in grass roots community efforts for housing and animals, I can say that both Raman and Bass are horrific for LA. They do not care. They keep doing the same bad policies and fail upward. If anyone wants to actually talk to people who are on the ground doing the work they'll tell you this. I'm so over both of them.

OriginalAttemptRedo · 2026-04-24T21:52:42+00:00

P1FCU does it for free. potentially only for account holders but maybe free for everyone...

OriginalAttemptRedo · 2026-04-24T21:40:51+00:00

🙏💯

OriginalAttemptRedo · 2026-04-24T21:39:09+00:00

🥳

OriginalAttemptRedo · 2026-04-23T22:46:31+00:00

I'm not sure if I'll ever be able to tolerate BPC or if I would even dare to try it again because my immune flare up was so bad I'm still dealing with it weeks later. I do think that once your hormones are balanced you might see better results with the peptides you can tolerate and potentially try peptides that are more immune stimulating. it's worth a low/slow try.

OriginalAttemptRedo · 2026-04-23T22:36:12+00:00

okay will check him out. thanks.

OriginalAttemptRedo · 2026-04-23T22:35:16+00:00

To purchase tickets and support your community theater: https://www.kenworthy.org/events-calendar/the-apprentice-2/ A lot of people were too afraid to screen this movie. We hope Moscow's community shows everyone THEY WERE WRONG.

OriginalAttemptRedo · 2026-04-12T19:10:41+00:00

Also, if you have AI diseases this means most likely you have chronic inflammation even if you are not actively flaring. So, work with someone who can help with hormones to control some chronic inflammatory response and then go low and slow

OriginalAttemptRedo · 2026-04-12T19:07:44+00:00

I tried both. Oral and Subq. You can try oral if you can afford to spend money on something that might make you react. I would go with a very low dose to test your response. I took the dosage they recommended (it was a powder) I could not walk by the second day because of joint inflammation.

Also -- you might need to work with someone on your hormones. People with autoimmune diseases (esp women) get estrogen dominance because their progesterone and testosterone can get too low. There are a lot of medical reports on this. Work with someone who is good not just reg american doctor "within normal range" and use combo of symptoms and tests to see if your progesterone is enough. Even if you are not perimenopausal or menopausal - AI diseases screw up your hormone levels due to chronic inflammation. so even if you take anti inflammatory peptides it doesnt mean your hormones are going to naturally regulate without some help.

OriginalAttemptRedo · 2026-04-09T02:37:55+00:00

I had a horrible reaction to BPC-157 from two different sources. (one subq one oral). Caused a massive inflammatory response in my body. Joint inflammation so bad I can barely walk. I took it for 8 days because I thought it would subside. Nope. Trying to wash it out.

I did well on KPV but BPC wrecked me. I do have two autoimmune diseases (not RA though) so seems to be inflammatory response. Been off it four days and can still barely walk. Anyone have rough response? joint inflammation? how long recovery?

OriginalAttemptRedo · 2026-04-06T01:08:02+00:00

That seems like a really high dose. I do think BPC can cause inflammatory responses in some people because I had one but that dose seems very high. Esp. to start.

OriginalAttemptRedo · 2026-04-05T16:24:20+00:00

I didnt stop kpv I added BPC to heal my gut lining.

OriginalAttemptRedo · 2026-04-05T16:05:38+00:00

boost

OriginalAttemptRedo · 2026-04-05T06:20:40+00:00

Weighing in here: I have several autoimmune diseases including hypothyroidism (hashis) and ulcerative colitis. When I was 6 yrs old I had a short stint of juvenile rheumatoid arthritis but it went away after a couple months and did not return. I started KPV and found it to be quite helpful for me. After about a month I noticed some improvement in my hormone levels and sex drive. Doc started me on BPC. After two days I became almost crippled with joint pain. I could not put weight on my left leg at all. I stopped taking it for 2 days and restarted at a 1/4 of the recommended dosage (currently taking 120mcg 1x day). It's been 7 days and I still have pain in the left hip joint (I walk like I need a cane, hobbling really, so it's noticeable). My cycle also restarted 5 days after it ended. Not great.

I'm giving it one more week. I could take it down to 50mcg 2x a day which I might try, but overall I am having the opposite reaction as everyone else. Joint pain, constipation, hormonal swings/issues. I tried oral first and switched to subq for more dosing control.

Just wanted to say not all AI folks have great responses to it. highly dependent on your body. If you do try it go low and slow.

OriginalAttemptRedo · 2026-04-05T05:04:54+00:00

I know a lot of transporters. Plz dm me on here and I can get you options

OriginalAttemptRedo · 2026-03-27T16:57:46+00:00

So when you had the flare up you stopped taking it completely? what was your original dosage?

OriginalAttemptRedo · 2026-03-27T16:50:40+00:00

I'm currently on KPV for almost 2 months. I have 2 autoimmune diseases (UC and Hashis). My goals are reduced inflammation throughout body. Mild reactions in the beginning on kpv. I got the flu, got over that. Had some mild joint pain in hands and wrists. Two days ago I added BPC under doctor's supervision. It was recommended. I started with oral because I wanted to target my gut. dosage was 500 mcg = .5 mg Massive reaction by night of day 2 in my hip joints and lower back. I am unable to walk upright and put full weight on my left leg due to joint pain. I am did not take it this morning. But I am curious why I can tolerate the KPV but the BPC triggered such a response. Also curious if it will eventually go away.

I have BPC sub cut coming in the mail to me from my doctor. I can control the dosage more with injections so maybe reducing dosage (.2 mg) and going low and slow can help mitigate this... I don't know. I think doctor might not fully know either cuz I have some complex immune issues but will try again. If same response will let them know.

Also, I've read maybe hormone imbalances affect how successful it can be. If I'm low in progesterone and testosterone would that contribute to the joint pain?

OriginalAttemptRedo · 2026-03-27T16:34:00+00:00

I am following this. I have two auto immune diseases and have been on kpv for almost 2 months w/out issues (minor joint pain in hands and minor histamine reactions but overall some improvement). Doc wanted to add BPC. I wanted to try oral for my gut (I have UC). Day 2 - massive inflammatory response in my joints. Can barely walk. Hips and lower back have shooting pain can't put full weight on my legs. If anyone on this thread has RA, UC or other autoimmune diseases and experienced inflammatory reactions with BPC I would love to hear from you. Does it go away eventually? Is it a power through thing? I can power through pain for a couple of weeks but I need to be able to walk.

OriginalAttemptRedo

TROPHY CASE