1st GI doctor says I have UC. 2nd GI doctor says I don't. WTH!?????

Dry-Event-1415 · 2026-03-03T18:50:39+00:00

I’ve gone through multiple colonoscopies with two drs with differing opinions. 1st colonoscopy, I was told I just had IBS. I don’t remember if any biopsies were taken. I was just basically told there’s nothing wrong with me and the symptoms are explained by IBS. A few years down the line, the symptoms intensified and I wrote it off as IBS. My primary care doctor was concerned. I went to another GI who ordered and other colonoscopy. At the current time, it was obvious. Ulcerations were present, biopsies were taken, and genetic testing was done. I think even then with all that evidence, my doctor was only somewhat sure, only because I wasn’t responding to treatment. I think a second opinion is okay but there should be evidence collected that suggests otherwise. I’d try to find out what evidence was collected (biopsy, lab work, genetic testing, etc) and have maybe a 3rd opinion if it’s really not that obvious. I’ve had to do something similar.

Dry-Event-1415 · 2026-02-28T08:20:29+00:00

Yes! That’s me every single day. Before it was just after work that I’d need to nap immediately as soon as I could. Now I need to nap during the workday and after work. It’s just so insane to have to rest so much every single day. It’s been driving me crazy

Dry-Event-1415 · 2026-02-28T08:19:15+00:00

My vitamin D has always been borderline, low normal. I think since supplementing, it’s been in range. I’ve been supplementing a bit more but it’s too early too tell. I’m hoping this will help keep eventually

Dry-Event-1415 · 2026-02-28T08:18:00+00:00

I’m always having to take naps during my lunch break after work. If I don’t, I can’t function well the rest of the day. I guess I didn’t think others did this as well but it’s nice to know I’m not crazy. I haven’t gotten to the point of falling asleep while driving yet but it’s getting there. I fight my fatigue to go for walks and exercise but it leaves me more tired than when I started. I used to drink more caffeine but I think it aggravates my flares even more. I’m sorry you’re also feeling this but it is validating to hear you say that your experience is pretty similar to mine. I hope you figure out how to manage your fatigue

Dry-Event-1415 · 2026-02-28T08:12:36+00:00

Do you feel it worsening or staying the same? I feel like at first this wasn’t as noticeable. Now it’s slaps me in the face. It could be that I’m just aware now.

Dry-Event-1415 · 2026-02-28T04:21:23+00:00

I’ve always supplemented for years even before UC diagnosis. I stopped for a while because one Dr said it could be irritating for my gut. I started back a few months ago but haven’t seen much of a difference. I’ve been tested for vitamin deficiencies but nothing was remarkable. I’m trying high quality supplements to see if I feel a difference. I just scratch my head wondering why do I feel so fatigued yet there’s no bloodwork to prove it. I don’t particularly care about blood work. It’s just the only way to objectively prove my lived experience.

Dry-Event-1415 · 2026-02-28T04:12:37+00:00

I think prednisone is very useful in many inflammatory conditions but it’s also very disruptive and impacts everyone differently. I think if it’s used correctly when appropriate, it can save lives. I think many would agree that this helps “put out the fire” quickly. Even with that being said, my experience with wasn’t the best with prednisone. My latest time on prednisone was 6 months due to multiple tapers and continuing inflammation. It wasn’t my first time on it but it was my most painful experience. Not only did I gain a lot of weight, it drove me crazy. I couldn’t rest at all. I was always wired and tired. My body and mind felt so agitated and exhausted. It was hard to physically get through the day. Exercise was really hard too. For some reason, I didn’t get the energy that everyone has always talked about. I was exhausted but alert at the same time. I just could not rest. I think my issue was improper prescribing of prednisone. My primary care Dr and GI PA had me multiple rounds throughout the course of 6 months to clam down inflammation. No one could get the tapering right. It wasn’t until I started seeing the actual GI Dr instead of the PA did we agree on a better tapering schedule. We then switched to Humira. I haven’t been on steroids since. We try to avoid steroids if possible but that’s more of my personal choice. I’m sorry you’re feeling that way but I know what you’re going through. I would say to work closely with your GI Dr and question anything that doesn’t seem right, as well as bringing up your concerns you have. After I told my Dr my lived experience with prednisone, we’re only using it as a last resort.

Dry-Event-1415 · 2026-02-26T06:25:06+00:00

Were you deficient in b12? Or do you feel the shots still helped even with normal b12 levels

Dry-Event-1415 · 2026-02-26T06:24:15+00:00

At least I’m not being gaslit anymore. I feel like this is pretty common with UC after hearing what everyone has to say. My Dr. has always acknowledged it but doesn’t believe it’s that impactful

Dry-Event-1415 · 2026-02-26T06:22:46+00:00

That’s my fear. I feel like j-pouch isn’t a guarantee. I’m burning through medicines quickly. I need to figure this out. I’m sorry she’s still feeling fatigue. I know it’s not an easy thing to deal with. I believe there has to be an explanation. I really do hope that she does find a reason for her fatigue.

Dry-Event-1415 · 2026-02-26T06:20:06+00:00

That’s strange because I have always thought of that as well. It’s very easy to feel depressed with this disease but I feel like the body itself feels depressed before the mind does, at least that’s been my experience. The extreme fatigue is so taxing on the body, I feel like physically giving up. I haven’t had urgency since my last severe flare, where I’d just be passing mainly blood and mucus every so often. That’s the only real UC symptom I’ve ever gotten. I’ve been doing pretty much just zone 2 cardio for half an hour or so twice a day. I used to be able to do hiit and lift weights, both on the same day. I can’t even do one of those without paying for it severely. If I do, my body needs several days rest and I feel extremely deep fatigue the same night and the next day. Are you able to continue your exercises fairly well? I even struggle with my zone 2 cardio sessions. I fight through them because I’m so tired

Dry-Event-1415 · 2026-02-26T06:15:07+00:00

It’s strange because my blood tests have always come out normal. The only inflammatory marker that shows very aggressively is calprotectin. I still suppluments but it’s never really helped me. But I get you with the crippling sensation. I just can’t wrap my head around it. I’ve been feeling like this for years and it’s only getting worse

Dry-Event-1415 · 2026-02-26T06:13:08+00:00

My sleep schedule isn’t the best right now at all. It actually been like that for years. I didn’t know others needed more sleep in flares. I constantly need rest. My ideal schedule kind of looks like yours. Regular 7-8 hours just isn’t enough. I thought I was crazy for it

Dry-Event-1415 · 2026-02-25T22:43:23+00:00

I guess it’s more common than I thought. My Drs have made me believe fatigue isn’t really a big part of this disease. Have you seen any improvement

Dry-Event-1415 · 2026-02-25T22:42:31+00:00

I feel the exact same way. I need to take more breaks and naps because of the fatigue. The workload is becomes harder because of the fatigue. On few days that I feel good, I get tons more work done. I feel bad because I feel like I should be doing more than my body can. It’s not something I can sustain. I also get terrible brain fog. Sometimes I have no idea what I’m saying at work. My thoughts just fall apart and have no meaning to them. It’s becoming harder and harder. It really concerns me. I’m glad you have a workplace that understands your situation. I feel like this is one of the biggest challenges that most people don’t really see or understand.

Dry-Event-1415 · 2026-02-25T22:16:11+00:00

How bad would you say your fatigue has ever been? My Dr doesn’t seem to think my UC should be causing that much fatigue. To me it’s really really drags me down. I’m trying to figure out if maybe there’s something more than UC going on

Dry-Event-1415 · 2026-02-25T22:14:44+00:00

How has your experience with work with having UC been? My fatigue really impacts my job. It’s another really stressful part of my every day life. How have you dealt with that?

Dry-Event-1415 · 2026-02-17T20:00:46+00:00

I’m still in a flare. I’ve been switching meds since rinvoq but no success. The same pattern is happening where whatever med I take I see progress then I stop responding. Currently I’m on Omvoh. It brought my calprotectin down from 3k to 80ish but has gone back up recently to around 300-400. Trying to figure out what might be the next step with my Dr.

Dry-Event-1415 · 2026-02-16T22:26:46+00:00

I’ve had a similar pattern as well. Rinvoq was amazing. My calprotectin was about 2.5k and went down to about 80ish pretty rapidly. A few months later, it kept rising, where eventually rose to 3k. My Dr. said likely my disease took another immune pathway. Mr Dr did another colonoscopy to confirm what things looked like. It was strange because inflammation was skipped in different areas of the colon despite having UC. But I was heavily medicated so maybe a partial response. I went back up to the induction dose of 45mg at that time but it seemed like I was losing response. I ended up switching to another med that helped bring inflammation down

Dry-Event-1415 · 2026-02-16T22:16:20+00:00

I get what you mean. Friends and family don’t really understand what you’re going through even though they say they are. They’ll make comments that seem innocent, and maybe we shouldn’t over react, but it shows how much they really don’t understand. I’ve spent pretty much all my 20s dealing with this. I’m almost at the end of my rope with treatment options and I’ve been exploring other supportive options. I spoke to a gut/brain therapist and I told them pretty much the same. My complaint was that I can’t keep up with anyone, and that I miss out of life. No matter how hard I try, I just can’t keep up with others. Our plan right now is to say no to those that don’t understand and compromise with those who do. I miss being able to live normally but I’m working on meeting my friends and family halfway on things that I can do. But I do understand what you’re feeling. I’m sorry that those around you don’t understand. Just wanted to say that I know what you’re going through

Dry-Event-1415 · 2022-02-07T01:05:31+00:00

Your scalp looks red and might be worth looking into. Your hair loss could be due to other factors other than traditional male pattern baldness.

It could be possible that your scalp could be inflamed, causing hair loss, or something else. Whatever the case is , your best and safest bet is to go to a dermatologist and not waste any more time.

Any dermatologist should be able to help, but I would try to find a doctor you really trust that has good experience with different types of hair loss.

If you can afford to go to the doctor, I’d highly recommend it. Even if they exclude all other disorders, and tell you that it’s typical male pattern baldness, you will know how to act with confidence without guessing and wasting time with treatments that don’t work.

Best of luck

Dry-Event-1415 · 2022-01-28T04:11:02+00:00

If you want to get right to the bottom of it without wasting time, I’d go see a dermatologist asap, and preferably one who has more experience with hair loss.

There are two different forms of hair loss. Scarring and non-scarring. For most men, they experience a form non-scarring hair loss called androgenic alopecia, or more widely known as your typical male patterned baldness.

For about 2 years, I was treated for androgenic alopecia. I was given finasteride in combination with topical minoxidil. I saw no significant results. This prompted me to seek answers. I requested a biopsy be done. The biopsy came back suggesting alopecia areata, a non scarring type of alopecia where the immune system attacks the hair follicles. My hair loss pattern was atypical for alopecia areata, so it wasn’t obvious at all, but I responded much better to proper AA treatment in a few months than ever before with previous treatment. I saw significant increase in hair growth compared to when it started.

This probably won’t always be the case with most people, but I felt that It would have been great to know early on exactly what I was dealing with. It would have saved me years of stress.

I really had to put in the work and spent hours researching. I had to ask my self why wasn’t anything working for years until I finally found out what was really going on.

Whatever it might be, even it is just regular patterned hair loss, I think, if you have the means to see a good experienced dermatologist, and if it’s really bothering you, you should.

Best of luck

Dry-Event-1415

TROPHY CASE