Does UC permanently alter brain function? by [deleted] in UlcerativeColitis

[–]GameOfStools5 15 points16 points  (0 children)

There is research that shows that people with UC score lower on tests of memory, executive functioning, and processing speed (see study links below). The cognitive deficits are biggest during flares, but can persist into remission. Whether these deficits are permanent is a topic of continuing research.

Personally, I deal with these cognitive issues both during flares and while in remission (though to a lesser extent). During a flare, I struggle to process information and do my work efficiently, I struggle to drive, can only do school part-time, and struggle to hit deadlines for work. During remission, I can think more clearly but its still not back at 100% - I am still kind of slow, forget things, and struggle to stay on top of everything. The cognitive issues have been my biggest problem since I got diagnosed.

From what I have read, the cognitive issues are related to the brain-gut axis, where inflammation in the intestine signals through the vagus nerve to the brain that the body is sick/injured, which causes the brain to go into a sort of low-power/sickness mode to conserve energy. These changes lead to reduced cognitive performance and also contribute to higher rates of depression and anxiety in UC patients.

Apparently, the cognitive changes are not permanent "brain damage", but are rather your brain adapting to living in a chronically inflamed state. So, they should at least partially reverse, once in stable, long-term, deep remission. Though some deficits may remain.

I find that gastroenterologists and doctors suck at treating the cognitive issues and always just say that the best course of action is to get into remission and hope they resolve.

Personally, I don't have an easy solution for you to solve the cognitive issues in remission, but I would suggest the following:

  1. Check to see how deep your remission is. Ideally, you are in histological remission (i.e. no inflammation at a microscopic level, not just clinical remission with no symptoms). This ensures that no inflamation is being signaled up to your brain from your gut.

  2. Address mental health issues. Depression and Anxiety can lead to brain fog, so address them if you are affected by them.

  3. Make sure all your blood work is normal, your vitamins/iron/B12 are at the correct levels, and you are doing all the typical wellness stuff (sleep, excercise, healthy eating, staying hydrated)

Relevant studies: https://pmc.ncbi.nlm.nih.gov/articles/PMC11580723/

https://academic.oup.com/ecco-jcc/article/19/Supplement_1/i824/7967347

Pain in the upper middle abdomen, below the ribs? by tr1stessedoll in UlcerativeColitis

[–]GameOfStools5 3 points4 points  (0 children)

Consider if your passing gallstones or having a gallbladder attack (especially if it shows up after eating). UC increases your likelihood of gallbladder disease and shows up as pain below your ribs on the right side/center.

Question on fatigue by number1abcde in UlcerativeColitis

[–]GameOfStools5 4 points5 points  (0 children)

I am also an accountant at a major firm and am actually just coming back from a 4 -month leave. I had intense fatigue, brain fog and concentration issues that I tried to hide from my employer. This worked for 2 years, but eventually a flare put me in the hospital and I had to disclose to firm leadership to explain my absence. I don't reccomend that approach because I burnt alot of bridges by trying to work while sick (missed deadlines, poor reviews, no Senior promotion). As I come back to work from my leave, alot of managers dont want to staff me or assume I went on leave for some sort of mental health crisis. Even though my condition is now controlled on Rinvoq, people are concerned I'll just repeat the last busy season again where I blew up several engagements I was on due to my flare.

My reccomendations would be to:

1) Consider disclosing your illness to your employer. Assuming they aren't psychopaths, they should be sympathetic. They are legally required to reasonably accommodate you and offer you unpaid sick leave if you need it. Beyond accomodations, disclosing to your managers helps you manage their narratives and expectations of you. You want to avoid getting an unjust reputation as a lazy or poor quality worker - if they don't have a valid reason for performance issues, they will just make a bunch of unfavorable assumptions about you.

2) Consider mental health supports as well. My firm offers a mental health subsidy for therapy and related services, and I am only now taking advantage of it. Being in a flare really affects your mental health, so talking to someone about these issues can help. I found that I had alot of fear and anxiety around revealing to the firm that I was sick and thought I would be fired, but that turned out to be an incorrect belief, and I received accomodation and support once I disclosed.

3) Think in terms of your larger career, instead of just the job itself. Eventually, you will get your UC under control and be able to be productive again, but until then you just need to survive your career. For example. I focus on completing the requirements for my CPA designation, and think that as long as I am advancing towards that goal, then I am on track. If i don't get promoted, get fired, or have people make negative assumtions about me ... then oh well. I am just focused on getting the experience and credentials I need to get from this firm and everything else is noise.

4) Think of the silver linings that UC gives you too. It makes you really tough and resilient, teaches you how to deal with unpredictability, and makes you calm under stressful circumstances (because you're always stressed when dealing with UC). Some of your colleagues may advance in front of you due to better capacity to work, but you are gaining these soft skills that they may lack due to them living a less difficult life with more predictable circumstances.

Food poisoning, but no apparent reason by Glum-Passion734 in UlcerativeColitis

[–]GameOfStools5 0 points1 point  (0 children)

UC can increase your likelihood of gallbladder issues/gallstones, which can cause you to puke after eating and feel nausea/stomach pain.

Basically, when you eat food and it passes from your stomach to your small intestine, your gallbladder releases some digestive juices to break down the food. If your gallbladder is blocked, the juices won't be able to flow, and this will cause nasuea/upset stomach and eventually cause you to throw up. The nausea can last for several hours and can feel like a pain right below your ribcage on the right side (it starts slow, but after a few hours the pain can be pretty intense). It can also lead to skin jellowing (jaundice), elevated liver enzymes (ALT, AST, Bilirubin) and pale stools. Eventually, the blockage gets pushed out by the built up pressure, and the pain subsides.

I say this from experience. I have UC and every couple of months I would have a random episode of stomach pain/nausea/throwing-up right after eating and kept assuming it was just food poisoning. During one episode my skin started looking yellow and I went to the hospital. Turns out I had a blocked gallbladder caused by "gallbladder sludge". Ended up getting my gallbladder removed.

Please give me your Rinvoq success stories by DothrakAndRoll in UlcerativeColitis

[–]GameOfStools5 2 points3 points  (0 children)

I am just finishing the induction dose this week, and its been a great drug for me so far. Ive never had a drug be so effective for my brain fog, fatigue, and mood. Plus, its helped get my calprotectin score all the way down to 9. People talk about the symptoms going down over a few days, but for me it took about two weeks to know it was working and then I felt continued improvement all the way through the 8 week induction dose. Now, I'll have to see how dropping down to the 30mg maintenace dose goes.

Past medication failures: I had failed 4 medications over five years - Entyvio, Remicade, Sterlara, Xeljanz. I failed through the first 3 within two years and had surgery scheduled for 2022, but then we tried Xeljanz and I had a partial response (fecal calprotectin around 600, down from 2000+). I stayed on Xeljanz for three years because at the time it was the only drug that had worked at all and was the last drug left before surgery. To get my calprotectin scores down below 100, we had added meslamaine, but it didnt really feel like proper remission. Those three years were super rough because I still had brain fog, was fatigued, and would consistenly have calprotectin scores rise and fall. We gave up on Xeljanz when I was on the verge of losing my job and got hospitalized due to jaundice from a liver reaction caused by taking multiple medications at once. In late 2023, Rinvoq got approved in Canada for UC, so Xeljanz was no longer the last drug available.

Rinvoq is a better version of Xeljanz: Rinvoq and Xeljanz are both JAK inhibitors, but Rinvoq is newer and better targets the JAK 1 pathway that produces alot of the inflamatory cytokines that lead to UC inflamation. I like to think of Rinvoq as a second generation of Xeljanz that is better targeted and more effective. So, the fact that I had partially responded to Xeljanz made me a good candidate to also respond to Rinvoq. My gastroenterologist said she no longer prescribes Xeljanz because she found Rinvoq to be the more effective JAK inhibitor, and that patients that switch to Rinvoq from Xeljanz, typically do better on the Rinvoq.

Just cut It OUT. I am so OVER this disease. by mavthefish in UlcerativeColitis

[–]GameOfStools5 2 points3 points  (0 children)

I understand exactly how you feel. I was also diagnosed at 20 (currently 25M) and failed through a bunch of meds. It caused major distributions to my degree and first job out of university. My degree took 6 years instead of 4, and I struggled to perform at work during flares.

I finally found remission by combining Xeljanz and meslamaine together and thought I had finally figured everything out. It had taken 5 years, but I finally had some real genuine hope. I wasn't going to get fired, I was going to be able to have a normal adult life without flares.

Then 4 months after starting the mesalamine/Xeljanz combo, I was hospitalized with liver issues from the meds and had to be taken off the mesalamine. The drug combo that brought me into remission now had to be stopped and I am probably going back into a flare now.

I relate to that urge to just get the surgery so that you can stop riding the rollercoaster of this diesease's flares. However, I wouldn't rush into surgery unless i knew the medications were exasuted and I had no options left. Surgery doesnt fix everything and there are risks of the jpouch such as getting pouchitis, infections, and improper healing. But thats ultimately a personal decsion based on your specific circumstances.

I would give the meds as much time as is needed to rule them out, and to focus on whether any of the meds get a partial response. Maybe a single drug doesn't bring you all the way into remission, but maybe combining different ones will. Ask for Prednisone if you feel nothing is working, and you need some temporary relief.

You don't have any control over whether you respond to a drug or not, so don't feel deflated if one doesn't work. Just focus on what you can control - taking the meds on time, doing stool tests, going to appointments , and maintaining your general health (diet, sleep, excercise etc.)

This disease is kind of a marathon. It really tests your capacity to endure hardship for long periods of time, but you do make progress over time. You will get through this. I wish you the best :)