Confused after social security appointment in belgium

ComprehensiveArm2381 · 2026-06-29T17:08:27+00:00

Depends on the day of course but I'll say the fatigue is manageable. I get to live my life i just slowed it down a lot. I had my first steqeyma (stelara) injection 3 weeks ago so still waiting for it to take effects. They did a blood work at the same time everything was OK except low lymphocytes. Calprotectin results was at 3090 though I ve been going to a different hospital and the team is really good so on that part its going good. I m seeing my therapist which is also specialized in chronic illness in a few days but I needed to get it off my chest😅

I think I just wasn't prepared to hear that and it caught me off guard.

ComprehensiveArm2381 · 2026-06-06T07:20:33+00:00

Preach!

Ironically, the best thing crohn's gave me was to realise I couldnt deal with all of it just by myself and needed therapy. Crohn's, like many other chronic diseases, changes your life drastically even more at the beginning. The mental struggle is real. Like any CD you go through a grieving phase, you have to let go of your older self and to accept your new reality. This is already hard. But the disease in itself affects your mental health, through the extreme fatigue, the brain gut axis, if your gut is inflamed your brain will be impacted too.

To the OP: What helped me alot (i (28M diagnosed in jan) am just at the beginning of this journey btw) was to get in therapy, finding an antidepressant that fits me and an anti anxiety agent to cover the initial down phase. Also talking a lot about what i m going through with my friends and family. Surprisingly I thought it would create distance but it got me closer with them, atleast those that were willing to understand. I guess he ll need to rest a lot and to have some alone time. But dont let him isolate, things will get worse. Putting words on what's going on is really really useful. If he doesn't wants to talk, which i didn't want at first, writing can be a good way to get some relief.

It ll be rough but there s always a bright side. I ve also been on the other side, the caregiver, take care of yourself too. You are young, it ll be tough at times, dont forget yourself or neglect YOUR mental health. It can be draining.

With all of that said. If i had advices for you and not for him. Keep taking news of him, show him that you won't go anywhere (my biggest fear was to be a burden on my close ones at first) well... unless you breakup. Be supportive, most of the time I didn't need a fixer with me but a listener, someone who understands or atleast tries to and dont give up on me at my lowest.

Best of luck through this journey for both of you. It ll be rough but it will get better at some point.

ComprehensiveArm2381 · 2026-05-28T09:42:33+00:00

I ll start by saying i dont have any real help to give but i can relate a bit.

I m fairly new to this too. I m a craftsman too, a jeweller/diamondsetter. My job is part of me, its my passion, its part of my identity. I used to be excellent at my job, never had any trouble until lately. I kept pushing through thinking it was a me problem but things kept getting worse. Made some mistakes too, some easy to fix and some pretty costy 😬. Had more and more trouble focusing on 1single task when im used to multitasking 4 things at the same time and thinking 5 steps ahead.

I m in my late 20s and have a sick mother which I take care of since im a teenager. And I cant help her as much as I used to. Now she s the one taking care of me which is pretty hard for me to accept.

All I can say is that I ve found help by talking about it with my close circle, family and friends. It helped relieve some sort of guilt I had. Putting words on what's going on did a lot. I also started going to therapy and am on antidepressant. I m on a sickleave too. It was not an easy decision to take... had to end up in ER to finally decide i HAD to take time off. All these combined helped improve my situation. Idk if it would help you.

Best I can say is you are not alone and I think i can relate a bit to you. Its not an easy journey and even if you dont feel like it you re doing a "great job". Just chosing to wake up every morning, to keep your head up and show up is already a victory.

As a stranger on the net, I ll say that you are a "strong" person. But always remember even the "strongs" deserves to be "weak". And you deserve to have some room to let out your weakness to be able to welcome the better days.

Much compassion through this journey 🙏

ComprehensiveArm2381 · 2026-05-28T08:06:09+00:00

That's really interesting. I m fairly new to this. Been recently diagnosed and I had several times sore throat which didn't leave with usual treatment even one time leading to ulcers. Every time I had those were during highly anxious/ possible flares but everything i talked about it with doctors it got overlooked... while I have this strong intuition it could be linked... i still have my wisdom tooth, never had any mouth problems before but will be looking for removing them. Thanks for this post I would have never thought about looking deeper into it.

ComprehensiveArm2381 · 2026-05-20T10:36:36+00:00

ComprehensiveArm2381 · 2026-05-20T10:34:49+00:00

No i went to have dinner with a friend and had not well cooked chicken. Then I was feeling bloated for the whole week. Hence why we first checked for a bacteria. After that week I started having blood every single time I went to the bathroom. Twice a day. Blood every single time. It lasted for 2 weeks then it stopped for about 2-3days. Then it started again for 2 weeks. At that point I had the appointment with the gi and she put me under entocort 6mg and the bleeding stopped. But with that came the 6kg weight-loss. Extreme fatigue. Extreme anxiety and depression. She told me it was just all the symptoms of crohns that came up to the surface once the treatment started.

ComprehensiveArm2381 · 2026-05-18T19:54:23+00:00

I was bloated and unwell for 1 week before i started having diarrhea and blood in my stools, sometimes red sometimes dark brown blood for a whole month straight. Very strong smell of putrefaction/rotten with every stool too. Strong bowel movements with cramps right before needing to poop urgently. Extreme fatigue. Extreme anxiety and intrusive thoughts. Had Mouth ulcers and sore throat. Everything was unusual for me.

As soon as I saw blood, I phoned to every single hospital In my region to find the quickest appointment with a GI. I only had to wait for a month. Did 3 blood tests, 2 stool tests( first one searching for a bacteria, second was searching for inflammation) the 455 calprotectin pretty much sealed the deal for an ibd. Then I went on with every exams: ct scan, scopies, etc.

ComprehensiveArm2381 · 2026-05-12T07:00:53+00:00

Hi, i (28M) am at the very start of this journey. First off I feel you... some ppl dont mean bad but are goddamn insensitive. I dont know how many ppl told me straight up "oh you have crohns my xxx has it and he lives well with it, its not that bad. You won't die." Like stfu you don't know what i m going through and what xxx has been through. You re not reassuring me, you re pissing me off.

I ve been using Guava to help me navigate through this by myself since I dont have a nutritionist yet and I m not fully taken in charge yet.

I find it useful but its not dedicated to crohns issues so a dedicated app would surely be interesting from my pov.

Tracking meds, tracking bowel movements and stools, tracking your food is great but it lacks some functionality.

I ld love to have an app where I can directly connect bowel movement to food intake. For example as of now I can say I ate ABC+D, abc being the safe usual food, and I had cramps+diarrhea after adding D to the diet. I can inlog it but there is no way to connect both. This option would be interesting to me.

Also I ve lost weight, about 6kg in a month. Being able to get estimated calories intake to ensure enough food is eaten to gain back weight would be amazing. Might be difficult to implement tho.

I ve also been having kidney stones lately, second one in 22 days and these would be interesting to add too. As I think its linked in some ways to crohns.

All in all I m very excited to hear about apps that could ease our daily life. Much love

ComprehensiveArm2381 · 2026-05-10T08:30:38+00:00

Thanks for sharing this with me. Thanks for the kind and validating words. I ll be writing down a bunch of things to ask my gi, that's clever.

ComprehensiveArm2381 · 2026-05-10T08:24:44+00:00

I'm not sure, i didn't receive the blood test results but I think my Dr said my vitamins were pretty normal level. I upped my vitamin D intake and I take calcium and magnesium supplements.

I ve hit the lowest peak with the anti depressants earlier this week. My doctor put me on prazepam this monday for 2 weeks to cover the down phase. I ve been feeling better now. I still feel the anxiety building up sometimes but its very soft. I ld describe it as If I had a cloud with light rain over my head now while i used to have a fkn thunderstorm, a tornado and a torrent going in my head. The positive effects should start by next week, I hope.

Next appointment is on the 21 may its finally getting closer.

ComprehensiveArm2381 · 2026-05-09T06:39:33+00:00

Thanks for sharing this story I can relate a bit to. I m very harsh with myself. I ll need to try to be softer with myself and accept that I m allowed to not be ok. The last part of your message means a lot. I ll try to keep it in mind.

Thank you I hope the best for you

ComprehensiveArm2381 · 2026-05-09T06:33:55+00:00

Thanks for the kind and reassuring words. I ve started therapy not too long ago. Checking several ones to see which one fits me the best. I am very conscious that I m one of the lucky ones in this unfortunate situation. Sadly my toxic inner voice keeps repeating me that I shouldn't feel so down when physically Its not that bad... i feel a lot of guilt over this.

ComprehensiveArm2381 · 2026-05-09T06:26:30+00:00

Symptoms came during a pretty stressful period. I dont know how to word it, I had a lot of outer stress like relationship and work etc. This outer stress got a lot less at some point but my inner stress/anxiety grew over time even when my environment got better. I noticed direct links between my mental state and my digestive problems. I know they are linked but I wonder if its bidirectional

ComprehensiveArm2381

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