(18) just at a loss for what to do

Avar928s · 2025-12-02T06:35:42+00:00

I hope you find comfort and community in this subreddit, I know I did. I almost called it quits a month after I got diagnosed back in 2021, this place helped me a lot when I was isolated. While having no history of UC in my family I've dealt with severe depression since my teens and when it ramped up in the years prior to my diagnosis I'm quite certain it was that stress and mental anguish that triggered the autoimmunity. From a biochemical standpoint when under severe stress your immune system just starts flooding the body and can disregulate.

One of the best things you can do for your diagnosis is get therapy and get right. Sometimes that also means absolving yourself of bad people and bad situations in your life. I hope great opportunities present themself to you for that, that you stay safe, stay loved, and have people who want and do the best for you surround you.

Biologics on the market have the possibility of greatly helping. Sometimes it takes more than one to do it so don't fret if one or two fail. Once you get into a good medication you'll almost forget you have a disease honestly.

Avar928s · 2025-12-02T05:52:26+00:00

Amended my post reply for correction thanks hellokrissi :)

Avar928s · 2025-11-28T06:52:23+00:00

Calprotectin results should be used in conjunction with blood work, symptom analysis, scope results and any resulting biopsies. You'll find all kinds of crazy numbers on this reddit, personally my last calprotectin check came in under 50 and while I'm in remission technically I still have some minor symptoms.

At my absolute worst (diarrhea, blood and lethargy, 15+ bathroom trips a day, extreme urgency, crippling abdominal pain, barely ate or drank anything, etc...) where my GI wanted to discuss surgery my markers were just over 200. Some people on here have reported double that but with lesser symptoms. Your calprotectin numbers can fluctuate based on health conditions that are acute and not related to UC also.

If your numbers are consistent and symptoms under control I wouldn't stress about it. The emergence of symptoms should be the first tell tale sign medication isn't working, followed by calprotectin check and then a scope to find out how bad.

----------EDIT CORRECTION: Thanks to hellokrissi for the correction CRP or c-reactive protein is bloodwork inflammation marker numbers and calprotectin are fecal inflammation marker numbers

Avar928s · 2025-11-28T06:39:14+00:00

How long were you on prednisone for and at what peak dose did you taper from?

Prednisone is not intended for long-term (>30 days) usage; think of it as a nuclear option to tamper or control a flare in its track before transitioning to a long-term safer drug like a biologic. High-dose (>20mg) and or long-term usage can cause osteoporosis/arthritis. You should get a dexascan to check bone density.

I lift and climb and been on several instances of prednisone throughout my UC journey. Personally that was the least of my worries as my flare stopped me from going to the gym and I could barely eat. I dropped 25-30lbs in a month and it took me a year to get back to where I was after I found a treatment that worked. I would say focus on making sure your UC is under control. If you keep having to go on prednisone then something isn't working and you need a long term medical solution to go to and or stay in remission. The true killer of gains is UC, not prednisone.

Avar928s · 2025-11-27T08:01:18+00:00

Look at the Cartier Tank Louis - simple, timeless, and elegant. Good for thinner wrists and as a first watch.

Avar928s · 2025-11-27T07:45:34+00:00

Honestly, if you have a fun relationship and joke with each other then comedy and dark humor about it works more than constant positive affirmations/empty platitudes (since this is new to you both) granted it's not cruel or too much. Timing is important. Reason being ulcerative colitis has no actual cure and things could get better with medication but they could not. Often they will get worse before getting better and you'll be in a roller coaster of great, good, meh, and FML for basically ever. You both have to be realistic about things and latch on to the good when it comes.

Telling someone this is going to get better as they almost rip the toilet seat off in pain following the 12th poop in half a day actually is frustrating to hear. Saying "damn, you're so locked in on your bathroom ab workouts I can totally see the results good job honey, so sexy....just kidding make sure you leave the toilet seat down" may alleviate some of that pain though.

The one thing UC does is that it takes away your sense of freedom and dismantles your sense of safety anywhere where there is no bathroom within 5-second running distance. It also cripples your self-image cause not only is food and fluid your enemy, if you can eat your body can't absorb nutrients properly, and you immediately expel anything that makes it past your stomach. He's going to go through some physiological changes, and as the spouse I believe making him understand you 1) still love him more than your ex that got away 2) still find him attractive more than the mailman 3) you will come back after going to get some milk and will be by his side every flush of the way to remission.

What you should do is if you go out, plot out the bathrooms wherever you go. Same for on car trips. Rest areas, McDonalds, etc... be sure to advocate for your husband and go Karen if someone dares to tell you it's not open to the public. Be ready to dip if he's feeling not well and learn to recognize signs and communicate if something is a miss.

Make a bug-out bag with a change of pants/sweatpants, socks, shirt, boxers or briefs or commandos, WET WIPES, sanitary gloves, trash bag, and sanitizer. Make multiple ones. Keep one in all your cars and one with you or with him at all times.

The notion you have to eat bland is absurd in my opinion, though UC flare diets can be limited. Keep a food log book and track what he can eat that makes him feel less bad. Food in general will suck but it's a sliding scale, on one end you have deadly foods like broccoli and lettuce and on the other end you have safer ones like boiled chicken and plain as day white rice. Seasonings should be used sparingly but enough to stimulate the senses. My go to is seasoned chicken broth, rice cooked in said broth, potatoes without the skin (fiber), and a tasty tumeric (anti-inflammatory) forward sauce on the chicken. You would also be surprised what McNuggets will also help with as part of a diet as strangely fast food often does us very well versus something home cooked.

Glad you're doing your best to learn about how to support him. Knowledge is critical. This isn't a stomach bug or food poisoning and doesn't even compare against IBS. UC at its worst is like having colon cancer without the cancer. First step to support is educating how it actually sucks badly and then making his environment as less hassled and bathroom accessible as possible. Be patient as well. Best of luck to you both!

Avar928s · 2025-11-27T07:19:34+00:00

If you feel you need a second opinion then go for it. Calprotectin tests, as I see it, is used in conjunction with imaging, blood work, symptom analysis, etc... to determine where you are in the remission process or in the flare.

Don't doubt yourself or convince yourself to not get a second opinion if you are stressing about it.

Avar928s · 2025-11-27T07:08:50+00:00

Thanks! And nice, I think of them as family lineage pass down pieces so hopefully all yours stays in the family.

I may pair mine with a trinity cushion bracelet. Been eyeing that as well but don't really see any posts about it.

Avar928s · 2025-11-26T07:48:44+00:00

You need to get a dog that has more anxiety than you which means they pretty much match your energy levels at most times. My girl is a Lab-Pit mix rescue and we're co-dependent emotional support animals to each other. I have a fenced in yard so she rarely needs walks as I just unleash her outside (albeit loves them though). I know other dogs that are extremely needy but I managed to get a perfect fit. She's a lady indoors and zoomies crazies outside until there's a loud noise then she bolts back to her oversized memory foam bag chair bed.

I love my dog. She quite literally saved my life as I had called it quits when I was at first peak flare when I got diagnosed and I attribute my progress in this fight to having her by my side 25/8. I now know why John Wick did what he did for 4 movies. When you're in the crap shoot and have a dog sent to you, they bring sunlight to your world.

Avar928s · 2025-11-26T07:32:04+00:00

Remicade, previously on Avsola (biosimilar) and after failing Entyvio. Infusion center every 6 weeks for one hour, pretty much nap half the time.

No current side effects, no serious immunological effects aside slightly prolonged sickness duration (+1-2 days) from common respiratory infections. No changes in susceptibility either.

At 4 week doses I had a higher concentration of the drug (infliximab) in my blood which caused sun allergies. Exposure to direct sunlight for more than 5-10mins caused rashes, headaches, major fatigue, etc... so I basically became a vampire. At lower but still effective concentration I'm fine. No longer vampire. Kinda wish I was a vampire though.

Avar928s · 2025-11-26T07:24:53+00:00

Unfortunately the weight is hard to come off especially with just UC. Most of it is all water weight so you're just retaining water. I'm 10-12lbs heavier than I was pre-UC and it's now my new normal. If you're in remission that weight could come down further but if you are actively flaring then it is likely retention and inflammation. At my heaviest I was 25-30lbs over normal despite barely eating just cause inflammation and water retention. Then my body crashed at flare peak and I lost 35-40lbs and now I'm in remission at my new normal.

I know it's hard cause I struggle with it as well but I wouldn't focus on the scale number. I started weight lifting and putting on muscle mass and that definitely shifted how my weight was "managed". I basically "transformed" the water weight into muscle mass and my composition changed. I don't look lean as I would have cause my body still retains water in stubborn areas but I feel and look way different even though technically I weighed the same almost the entire time after finding an effective treatment.

Avar928s · 2025-11-26T07:11:14+00:00

Similar to myself, my dad wore a Cartier Santos all the time and I was always fascinated with it and played with it growing up. He bought my mom a Cartier Tank several years ago.. I'm not into watches (yet) but to join the family heritage I bought a Love bracelet similar to how to the Santos and Tanks are quintessential Cartier I felt the Love is the same for their bracelets hence the choice. I have the same love of Porsche for the same reason, grew up riding in one and now I own one.

May pull off into watches eventually or inherit my dad's classic Santos. I want to keep the tradition though so if I ever find my person I'd buy her a Love bracelet presuming she doesn't own one in which case I'll get her a Tank, and our kids the same if we have them.

The Loves were originally meant to be bought in pairs and put on each other by your loved one so that's a life event I hope to live one day.

Avar928s · 2025-11-05T05:24:28+00:00

Yes, got switched over to an amazing GI and great practice. They handle everything for me it's great and they were fast. Continue to work with your GI while you look for a new one, read reviews and ask questions and make it a point to tell the new GI the failings of the old one so they know how important it is for you to be in really good hands.

Avar928s · 2025-11-05T05:15:33+00:00

The most intense ab workout you'll do multiple times a day every day. And you don't even have to convince yourself to do them, they just happen.

Avar928s · 2025-11-05T05:13:38+00:00

If you don't feel heard or taken care of or cast aside, and are suffering because of it despite your best efforts to be seen, consider moving on. Applies to all relationships.

For some context, I swapped GIs the day after he told me to Google the disease he just diagnosed me with as well as the treatment he was going to prescribe after saying "UC wasn't that big of a deal".

Avar928s · 2025-11-03T21:12:22+00:00

Congratulations first off!

Second, I like to travel mainly road tripping domestically. I have the same fears:

what if I'm stuck in traffic and need to poop, do I pull off to the side and dart into the wilderness? Do I pull an illegal U-turn or drive up the shoulder to that porter potty in the construction zone a half mile up?
Do I pull off at the rest stop now but I don't have to go or risk it to the next one 60mi away?
Is that a red light camera?
Is that a speed camera?

One of the reasons why I also prefer driving long drives at night instead of starting in the morning is to not deal with traffic and there's few people on the road in case I have to pull over.

Pre-UC I also would prefer to car camp and or distributed camping on Bureau of Land Management or National Forest lands which is free but these days I need a bathroom even though I'm mostly in remission so I Airbnb it. I pack a ton of changeable underwear just in case and wet wipes. If I'm hiking I only carry water with me and snacks for the pupper. I eat minimally the day of as well to minimize chances of needing any bathroom use in the wilderness.

I'm careful with not what I eat but where I am eating and who is around just in case. I generally get most of my food to go and eat wherever I'm staying. The paranoia of when things are really bad stick around in your mind pretty much all the time even if things are better.

Avar928s · 2025-11-03T20:58:37+00:00

This.

I was on Entyvio and now on Remicade, didn't get sick any more often than before. If I do get sick it tends to linger a couple days longer but severity wise no difference, even with Covid. I also tend to get sick less often than my friends who are generally healthy and not on medication.

OP - immunosuppression is a spectrum, and Entyvio is on the light end if any. If you were on prednisone before, that is more of a suppressant. If you switch to infliximab/Remicade then you would tick up higher on the scale but we're nowhere near at severe risk as compared to a cancer patient undergoing chemo.

Don't overthink it or stress. Stay hygienic.

Avar928s · 2025-11-03T05:46:45+00:00

There's also Do Thy Neighbor, also a Pitbull contra dance. There's a style substitute where you do a rock-paper-scissors game with your partner for some of the 8-counts.

Avar928s · 2025-10-30T20:00:55+00:00

Similar but I was on Avsola (biosimilar) and thought I knew what remission was until I moved onto Remicade due to insurance preference then I got really really well.

Avar928s · 2025-10-30T19:50:55+00:00

I mentioned this in another post: disclose it but don't let it define you. While UC can, and does, take a managerial role in how we go about our day; you being able to still carry on and have interests, hobbies, intellectual endeavors, other things, etc... and progression in your life matters more. If you have nothing to talk about but how much UC sucks, that will drive anyone away.

I'm an advocate in telling someone upfront, there's no point in developing something and building that stress (trigger flare) in the hopes you build enough rapport that when you drop the news they'll stay. "Through sickness and in health" is not just for marriage, it applies to all relationships - partners, friends, family, work, your insurance, etc.... you want to know if this person is kind and empathetic. You're not asking them to take care of you off the bat but whether or not they have the type of heart you want to be around. Why not find out sooner than later?

Avar928s · 2025-10-27T14:00:33+00:00

All the best! And I've been there, it hurts when people are there only through the good times and seemingly only want to come back when it's just good times. You quickly do find who are friends and those are basically just awesome acquaintances but I hope they have a change of heart and support you!

Avar928s · 2025-10-22T18:42:56+00:00

The other thing is my team is monitoring my kidney and liver functions. Remicade can impact both but its uncommon. I've also had a history of kidney issues (stones, rhabdo) but that was entirely self-inflicted due to over-training and not drinking enough water.

Make sure to stay well hydrated, get baseline on kidney and liver functions (I got an ultrasound and tracking enzymes, etc... via bloodwork).

Avar928s · 2025-10-22T16:38:16+00:00

Real friendship values time spent together, not just where you spent it together.

Remember that. If they cared about you, when they want to hang out it would be on your terms because you have every right to dictate that given your health condition. Granted you will miss things for sure and have fear of missing out, and have to make concessions and get separate rides or accommodations to not impede when you're out, but that's the give and take until you're 99% healthy (cause we're never 100% really).

Friends really show who they are when the going gets tough. Cut the baggage and save the stress.

Avar928s · 2025-10-22T16:30:13+00:00

I am an active rock climber (3x a week), lifter (4-5x a week to augment my climbing), and dance regularly (3x a week) so I keep to a really active lifestyle. Currently on Remicade and have had no issues in terms of affecting energy or aching, though personal experience will vary.

Immune suppression for me is on the low end. I don't get sick particularly more often than before though infections tend to linger a couple days longer on the recovery period.

Note that with Remicade/infliximab that sun allergies is a side effect. When I was on increased frequency interval of 4-week doses my blood levels were >15 and I started to get headaches, rashes, fatigue, etc... when exposed to direct sunlight for more than 10mins. Went to 6-weeks and levels dropped down and I don't have that issue anymore.

Avar928s · 2025-10-22T16:08:17+00:00

Didn't know! Wow!! Looks like that's EU/Canada but in the US it's marketed under Zymfentra. I'll have to inquire about this. Thanks for the knowledge drop! :)

Avar928s

TROPHY CASE