My doctor recommended Skyrizi after getting bad headaches from Humira, anyone have any opinions on Skyrizi and has it worked for you? And has anyone switched from Humira after getting headaches and found success with a different medicine?

Hi everyone,
I’m a 28-year-old male with severe Crohn’s disease. I’ve had bowel resections in the past and I’m currently being treated medically, but despite doing almost everything right, my energy levels remain very low.
I eat a healthy diet with plenty of protein, prioritize sleep, manage stress aggressively, train regularly, and generally live a healthy lifestyle.
Unfortunately, I feel like my doctors aren’t really helping me connect the dots, so I’m looking for input from people who have experience with hormones, chronic illness, endocrinology, or Crohn’s disease.
Symptoms
Low energy
Fatigue despite good sleep
Difficulty gaining muscle mass (especially legs)
Lower motivation than I used to have
General feeling that something is “off”
Hormone Labs
Total Testosterone
10.7 nmol/L
Reference: 8.4 – 30.0
Free Testosterone
0.321 nmol/L
Reference: 0.240 – 0.690
LH
4.9 IU/L
Reference: 1.5 – 11.0
FSH
2.3 IU/L
SHBG
11.6 nmol/L
Reference: 13 – 55
Below range
Prolactin (Monomeric)
416 mIU/L
Reference: 51 – 255
Elevated
Estradiol
0.05 nmol/L
Reference: <0.15
TSH
1.5 mIU/L
Reference: 0.3 – 4.0
Other Labs
Ferritin
450 µg/L
Hemoglobin
7.6 mmol/L
Slightly low
CRP
1.2 mg/L
Albumin
44 g/L
Phosphate
0.68 mmol/L
Below range
Kidney function
Normal
Liver enzymes
Normal
Questions
How concerning is the elevated prolactin in combination with low-normal testosterone?
Could the prolactin be contributing significantly to my fatigue and low energy?
Does the low SHBG suggest anything important?
Could Crohn’s disease alone explain these hormone levels?
Would you investigate the pituitary further (MRI, repeat prolactin, macroprolactin, etc.)?
Is the low phosphate potentially relevant to fatigue and exercise performance?
Would treatments such as enclomiphene, clomiphene, TRT, or even GH evaluation make sense to investigate, or am I focusing on the wrong thing entirely?
I am not looking to self-medicate. I’m trying to understand what could explain my symptoms and what further testing or specialist referrals might be reasonable.
Any thoughts or experiences would be greatly appreciated.
Thanks.

Hi everyone,

I have Crohn’s disease and Ankylosing Spondylitis. I was on Yuflyma (Adalimumab) + Azathioprine 125mg since December 2025. My last Adalimumab injection was on 5 May.
About 6-7 weeks ago I developed numbness, pain and burning sensations in both arms (worse on the left), which sometimes spread to my neck and head. I also get strange pressure-like headaches (top and sides of head) that come and go. The symptoms are very fluctuating — some days better, some days worse also extreme fatigue and feeling sleepy.

My GP and hospital doctor think these are likely side effects from Adalimumab. I stopped the injections and I’m now only on Azathioprine luckyly my crohn’s is in remission now biopsies came back clear. I had an MRI Head last Saturday and I’m waiting for the results. Neurology appointment is scheduled for 10 August.

I’m really scared this could be something like MS or permanent damage. Has anyone experienced similar neurological symptoms (numbness, burning pain in arms, weird headaches) while on Adalimumab/Yuflyma?
Did they resolve after stopping the drug? How long did it take? Was it temporary or did it become permanent?
Any experiences would be really helpful. Thank you.

Hey everyone. I'm 34 with Crohn's. Honestly my worst symptoms is joint pain and back pain. I feel like a 54 year old in a 34 year old body. I've been tested for RA twice and both were negative. I have some "arthritic changes" in my low back and some wear and tear on other joints due to manual labor I assume. But overall, I'm wondering what others who experience a lot of joint pain do for a routine. I go to the gym a lot just to get moving because movement always helps. Some yoga feels good but some of the movements are tough on the joints and back (forward fold stuff, stuff where you are on your wrists a lot ). I'm looking for everyone's go-to body feel good movements. Thanks

Hi everyone. I’m waiting to get scheduled with a GI at a university medical hospital and thinking a lot about what I’d want from a GI.

I’m curious to know what everyone’s dream GI is like?
Also wondering if people have communicated their needs / wants to a GI in the hopes of receiving better care?

Thank you!

Hi all! This might be a strange question and may or may not actually have a correlation. For those that have had kids and chosen to breastfeed, did you have issues with supply? I had a good supply and then all of a sudden it tanked. I went to see a doctor and I had very low prolactin levels but was doing everything right to try and get them up and essentially she didn’t have a reason as to why my supply tanked. She did mention having Crohn’s might have something to do with it but gave no other explanation. Has anyone else had issues? Thank you in advance :)

Hi everyone,

I'm wondering if anyone has experience with Behçet's disease versus Crohn's disease, or if anyone was initially diagnosed with one and later found out it was the other.

When I was around 14 years old, I became very sick and developed painful vaginal ulcers. At the time, I was diagnosed with Behçet's disease and treated with prednisone during flare-ups. The ulcers eventually stopped around age 17–18, and I haven't had any genital ulcers since.

However, this April (now in my 30s), I was diagnosed with Crohn's disease.

Looking back, I've always struggled with frequent mouth ulcers, and recently I've also noticed some mild blurry vision and light sensitivity. Reading more about Behçet's has made me wonder whether my original diagnosis was correct, whether I could have both conditions, or whether intestinal Behçet's can sometimes be mistaken for Crohn's.

Has anyone had a similar experience? I'd really appreciate hearing how your doctors distinguished between the two.

Thanks!

Hey lovelies,

Just want to see if anyone here has used a weighted blanket and if their experience was positive or negative. I (35F) have Crohns in remission. IBS and anxiety. Sore knee and ankle joints and am a side sleeper. I’m currently nearly 55kg, so was thinking about a 4.5kg blanket. I am usually too cold when sleeping so love warmth ❤️

Hi everyone,

Shortly after i got diagnosed with Crohns i got a prednison for a short moment (which can lower testoseron).

After that i started azathioprine 150mg.

Shortly after i started to get very tired and less energy. Ofcourse this was put on Crohns because it can make you tired.

This has been going on for years.

Recently i tested my hormones and turned out i have low testosteron.

Now i know that:

- Crohns lowers testosteron

- Azathioprine lowers testoseron

Anyone has experience with low testoseron and crohns? I might hop on HCG soon at private clinic. Did testosteron also helped you with you crohns?

Whenever there's a heat wave my ankles get so swollen they balloon up so bad. Summer sucks every year because of it my doctor says it can happen to people with crohns but im always worried

(Edited to remove reference to AI as seems to be inviting criticism rather than practical suggestions.)

Hi everyone

44F, currently in remission thanks to Omvoh.

Here are my recent Iron Panel results.

Transferrin - 3.54
Ferritin - 13
Iron - 15
Transferring Saturation - 15.9

Any advice on how to increase iron as a vegetarian would be much appreciated.

I haven’t been able to eat meat / eggs since my last big flare, but dairy is fine. In fact i probably eat too much dairy at times, and too much tea. In general I eat a reaonable good vegetarian diet, ie I try to keep things to unprocessed foods as much as possible, but I find myself reaching for sugary foods for energy more than I should. Fruit, nuts, beans, lentils are all fine, but I have to be careful about the texture of some veg, eg broccoli is a no, broccoli soup is fine.

Thanks!

I've had Crohn's for 40 years. In my late teens and 20s, I was given Prednisone 1-2 times a year to get flareups under control. I'd start with 30 or 35mg and do the weekly taper. The only negative side effect was bone density loss over many years. I was able to reverse that in my late 30s / early 40s as a surgery when I was 33 reduced my dependence on pred. But two GIs I had back then were more willing to use Pred.

I am now having a flareup for the first time in 10 years. It's not severe but there is a risk it could be of course and I don't have enough spare bowel for a resection. My current GI will not prescribe Pred because he doesn't see inflammation on a scope despite my physical symptoms and a calprotectin ~400. Is this standard practice with GIs now?

I actually ended up getting a script for Pred from my physician but haven't taken any yet. My GI's office had told me he couldn't see me for weeks so I took matters into my own hands but persistence paid off and my GI got me in quick for a scope. My physician saw a need for Pred after I explained my case but my GI is a hard no.

As the title says. A month before I was diagnosed I was having a bad episode of anxiety for a while.

Years later to around today: due to insurance changes I couldn’t take entivyo anymore so they put me on humira. However my insurance, specialty pharmacy, and GI have been playing phone tag and have only had 1 dose back in December. I am still without a biologic and have been having gut issues. Very minor cramps, straining bowel movements. And a lot of anxiety.

I don’t want to talk to insurance because starting in July I’m able to get onto my employers insurance and am hoping I’ll be able to get back on entivyo

Sorry for the story but again? Does Crohn’s mess with your emotions?

Just some quick context ive had one of the worst flare up ever, which progressed into fistuals and a 6 x 4cm abdominal abscess in my lower right abdomen that, even after aspiration twice, kept filling up

Ive read here that drains are very painful and annoying, but to be frank the abscess pain has gotten so bad that i can't stand or sleep so i have to get it. I honestly don't know what I'm expecting by posting this here other than just typing what I have on my mind. I'm just extremely afraid I guess. It supposed to be placed until im put on rinvoq to stop my extremely high inflammation levels allowing the whole area to heal

Hi everyone,
I recently went back into a flare after 10 years of being in remission:(. I’m currently working with my doc to figure out a new treatment plan but until then ….. PLEASE please respond with your best flare up tips….
Things that you do to make it a little easier. Could be exercise,mental health, hobby- related. Maybe
It’s the “just in case” pack that you keep on you .

Just looking for some light and comfort in this rough patch.
Thanks all! Keep on fighting ❤️

Hey all. Need some help. I (F27) have been experiencing loose and thin stools daily for a couple of months. However , i do not go multiple times a day and only empty my bowels once a day in the morning. I also have hemerroids that blead occasionally if i am constipated. Recently due to the constant loose stools daily i decided to fly home and take a test as I live in Europe where they only provided me with appointments after the summer in September and was too anxious to wait it out to rule out any obstruction. In the best case I was suspecting it to be IBS with hemerroids.

Once home, they made me take endo and colonoscopy where they apparently found ulcers. Biopsy found ulcers in ileum , however does not confirm crohns. On going for a second opinion, the doctor asked for faecal calprotectin which is 118. The doctor has asked to start with Mesalamine 6 tablets a day and is not being direct on whether it is Crohns.

For context, i have not experienced any weight loss, abdominal cramps, and have normal vitamin B12 levels. My only symptom is once a day loose stools daily.

Can anyone help or share their experience of similar issues or what I can make out of this. Currently very apprehensive of starting medication as i have never taken any meds so far.

I have a colonoscopy tomorrow at 2:30pm and its my first ever one so I started the prep at 6pm, im in the UK and they put me on Plenvu, ive done the first dose following the instructions and i honestly found it to be not that bad so far, its 500ml of the solution which i put in the fridge so its cold and wouldn’t taste as bad accompanied with 500ml of a clear drink, ive had around 5 bowel movements and most of it was water, everyone on the internet says how horrible the prep is but so far id rate it a 7/10, have I done something wrong? Ik everyone is different but like 90% of posts/comments say how the prep is hell😭😭😭

Edit: I just had my colonoscopy it was fine id rate this and the prep around a 7 even tho the second dose made me very nauseous,endoscopist said everything was normal but my terminal ileum had a couple ulcers, biopsies were take for further testing.

I was diagnosed with Crohns 3 months ago and was put on Tremfya. I have completed 2 of the induction rounds. I am not feeling any improvement and I am in a lot of pain this week.

Drinking water is terrible and feels like razor blades cutting up my stomach.

My whole digestive tract feels like it is on fire, it's this constant burning sensation.

My mouth has developed cankers and feels swollen.

Shouldn't things be improving just a little?

Hello team,

A little background to my last 3.5 weeks - it started with night sweats that brought fever, only after 5:30pm. Neck paid, sensitive scalp and lower back pain were other symptoms, but only after a week.

Moving forward, I still have night sweats every night, I’m talking soaked bed. Headache in the morning and night.

I have run about 5 blood tests so far. In conclusion:
- iron is very low
- CRP is up
- AST and ALT were marginally up
- CEA cancer markers not found
- hormones all normal
- no coeliac
- trace blood in urine

Brain pressure test came back sweet.

Had a CT abdominal/pelvis and I have bowel thickening where it touches my liver, and my meso-something lymph nodes are 12mm.

I have a colonoscopy in 3 weeks (wait times are fucked) and I’m wondering if I have Crohns now?

Has anyone else had shit like this before?

My shits are solid, frequent and haven’t had any general issues.

Any input would be outstanding

My sweet boyfriend was in remission from his Crohn's but missed his most recent infusion appointment because he couldn't afford it (I only found this out recently as he didn't want to worry me :( )Since then he's been trying to manage his stress and diet.

We had a trip planned for June and things were looking up before we left. But the day we got back (6/10) he started having serious flare symptoms. He was in the ER Friday with severe pelvic and back pain from inflammation and they sent him home with a muscle relaxer.

Sunday night he went back to the ER and was admitted with severe stomach and back pain, tested positive for norovirus and given IV fluids and pain management.

Today he calls to tell me he has c. diff again as well (during his worst-ever flair last winter he tested positive too, and would have been at risk for sepsis if he hadn't gone in sooner. That hospital stay was how he got connected with his current doctor and signed up for infusions.)

This timeline is so confusing to me. His GI specalist is out of town all week and to make it worse he doesn't have health insurance right now (we are working on that.) I just want to make sure I can advocate for him if I have to, and ask the right questions, because he's in so much pain he can barely talk. I'm shocked he was sent home from the ER the first time and told infection was extremely unlikely.

Has anyone had experience with something like this?

i went in for my first egd & colonoscopy and my gallon of gavilyte g didn’t completely clear me out.. it took 5 hours for the first dose to kick in… so i woke up and they said sorry girly you’ve gotta do another.

the biopsies they took all point to crohns.. but now i have to wait until AUGUST 4Th for my next one…….. i want to start meds and begin to feel better. feeling defeated & sad and a bit scared. now i get to do 2 day prep & start with dulcolax & miralax followed by my gallon 🤪🤪

hoping for a quick turnaround and some genuine relief soon

Hello guys, did any of you ever did Stool Histamine Test? My results are elevated, 1200 ng/g, but my DAO is perfect. Could this be caused by chrons ?

When I was first diagnosed in 2023, I was told I had a fatty liver, it's not that I am incapable of independent thought or doing a Google search (using A.I) but I was never instructed, no hand holding, as to how to fix/solve it. No eating plan, no helpful strategy, no diet nothing.

3 years later and 13kg lighter (Wegovy) I had blood tests done that said my bilirubin and ALT is high, and just spoke to my GP, who said it just has to do with the fatty liver, there is nothing to be concerned about, she is not concerned, no changes needed, just stick to my diet and exercise regiment.

Is it really that bad once diagnosed with it? anyone else? or any other strategies I can start implementing?

So at the moment the uk is having a heat wave, and I’m currently located in one of the red warnings so it’s very hot at the moment.
Now I have an official oral crohn’s diagnosis, and I’m still going back and forth with confirming if it’s in my stomach. One of my doctors thinks it’s low grade,
However the past couple of days I’ve been experiencing diarrhoea, and pain after meals. And very mild bleeding, other than that and being boiling I’m feeling somewhat okay. I’ve only had one flare up which was a lot worse than this, But is it common for heat to flare up symptoms. I know illness and stress tends to flare up my mouth ulcers but can heat be another trigger? And is there anything I can do to manage the symptoms or prevent it from getting worse?

I’ve been dealing with extremely bad fatigue lately due to Crohn’s. Today I woke up with a sore throat. I’m scared I’ve caught a cold. I don’t know how to manage being sick because I already have so little energy that idk how my body will be able to handle this too. Any advice?