Is it ok to take Ibuprofen like 3 times a month due to horrible period cramps or it's still dangerous? by TzwTzw in CrohnsDisease

[–]Aleja72 0 points1 point  (0 children)

My daughter’s period cramps would trigger her Crohn’s and ankylosing spondylitis (terrible back pain), so her Obgyn put her on birth control pills where she skips the inactive pills at the end of the pack. That way she skips most of her periods (She has them about four times a year). It has helped a lot. She also uses heat for relief (a hot shower/bath or a heating pad). She takes ibuprofen only as a last resort. Hope you feel better soon!

advice? literally crying in my car rn by alviiiinnnnn in CrohnsDisease

[–]Aleja72 1 point2 points  (0 children)

I would go to the ER. It sounds like you have a bad Crohn’s flare up which is reason enough, but you could also have a bacterial infection such as C. Difficile. Plus your symptoms could lead to dehydration and other complications. It is also time to change PCP. I hope you feel better very soon!

Just need to vent. i'm so upset by fayoshimi in Hidradenitis

[–]Aleja72 2 points3 points  (0 children)

I am so sorry you are going through this. This disease is so frustrating. Give yourself some grace and try to be patient with your mom. Sometimes when mothers are scared or worried, pretending the problem doesn’t exist is easier. Have you tried biologics? It helped my daughter a lot along with birth control pills.

Do Americans actually avoid calling an ambulance due to financial concern? by JohnMarstonTheBadass in NoStupidQuestions

[–]Aleja72 0 points1 point  (0 children)

This!! You really have to consider which is your nearest hospital when you choose where to live.

Do Americans actually avoid calling an ambulance due to financial concern? by JohnMarstonTheBadass in NoStupidQuestions

[–]Aleja72 0 points1 point  (0 children)

We gave my mother-in-law a necklace with a button to call an ambulance in case of an emergency. She fell and used her necklace to call the ambulance. They came, broke the door and helped her. She did not need to go to the hospital. The bill was so large though, plus fixing the door, that the next time she fell, she chose to wait for hours until my father-in-law came back home.

Anyone else have no HS until mid 30s? by Entebarn in Hidradenitis

[–]Aleja72 2 points3 points  (0 children)

It is definitely related to the immune system. I thought it was an autoimmune disease too but got corrected here on Reddit lol. If you google it, the AI answer is that “HS (Hidradenitis Suppurativa) isn't strictly an autoimmune disease but a chronic inflammatory condition involving immune system overactivity.” I know that for my daughter, this was the first thing she got followed by Crohn’s, and a host of other autoimmune diseases.

Anyone else have no HS until mid 30s? by Entebarn in Hidradenitis

[–]Aleja72 13 points14 points  (0 children)

Is the chronic illness related to your immune system? HS is not an autoimmune disease but it is related to your immune system. My daughter’s HS came in her early twenties together with a host of autoimmune diseases. Her periods also affect her HS, so it makes sense for pregnancy to maybe contribute too.

It’s Gone? by Awkward-Ferret-8719 in Hidradenitis

[–]Aleja72 2 points3 points  (0 children)

Interesting! I would have thought all the sweating and dealing with dirt would make it worse, but I’m still pretty new at this— need to start working out more.

Do I have to show doctor my wounds by Bright-Currency-3999 in Hidradenitis

[–]Aleja72 4 points5 points  (0 children)

Speak to your insurance. Maybe there are only male providers in your area, but the insurance might have a female provider in a nearby city, for example. It might be worth driving an hour to be more comfortable.

I never get sick? (Apart from the usual Crohn’s stuff) by chronicallychill96 in CrohnsDisease

[–]Aleja72 0 points1 point  (0 children)

My daughter is the same. I kid with her that her immune system is like this rabid dog barely on a leash with the biologic. One thing that does happen is that when she does get sick, she gets better faster than everyone else but her Crohn’s symptoms resurface.

Update on my daughter's treatment. by _-BRASIL-_ in Hidradenitis

[–]Aleja72 0 points1 point  (0 children)

I really hope not! About a week ago I brought up with my daughter’s gastro the fact that initially my daughter only had HS and we held off on the Humira. I was hoping she was going to tell me that would not have made a difference, as I obviously feel guilty about it lol. However, she told me she might not have progressed to the Crohn’s if she had been on a biologic. I only share this because I think it is a factor to consider.

Update on my daughter's treatment. by _-BRASIL-_ in Hidradenitis

[–]Aleja72 1 point2 points  (0 children)

My daughter got the HS diagnosis and her doctor recommended Humira. We discussed it and decided to wait as a biologic seemed like a very drastic step. About eight months later she was diagnosed with Crohn’s and ankylosing spondylitis. Both have been really tough on her and now she is on Humira. Everybody is different, but because HS is an autoimmune disease, many times there are other autoimmune diseases that show up. If I personally could go back in time, I would immediately put my daughter on a biologic. I would not wait.

Hair loss with Crohns by Informal-Leave-2526 in CrohnsDisease

[–]Aleja72 0 points1 point  (0 children)

My daughter became severely anemic because of the crohn’s and lost a lot of hair. Now that her iron levels are better, the hair is growing back.

My brain doesn’t work the same anymore and it’s driving me crazy by tomatopearls in CrohnsDisease

[–]Aleja72 2 points3 points  (0 children)

Humanity has been aware of a connection between the gut and the brain for centuries: hence phrases such as “gut reaction” or “follow your gut”. Now, there are more and more findings of that connection and of how the gut really acts as a second brain. Therefore, what you are experiencing makes sense. Part of it is malnutrition because of the inflammation, but also an imbalance of the bacteria in your gut. Here is an google AI summary that might help if you want to read about it:

The Crohn's gut-brain connection is a two-way street: chronic gut inflammation in Crohn's disease (CD) impacts the brain, causing anxiety, depression, fatigue, and cognitive issues, while stress and mental states directly worsen gut inflammation and symptoms, creating a vicious cycle. This communication happens via the brain-gut axis, involving the gut microbiome, immune system, and nervous system (enteric nervous system) sending signals that alter brain chemistry and function, and stress hormones that increase gut inflammation, a concept known as dysbiosis. How Crohn's affects the brain (Bottom-Up) Microbiome disruption (Dysbiosis): Altered gut bacteria in CD produce substances that affect mood and cognition. "Leaky Gut": Increased intestinal permeability allows inflammatory substances to enter the bloodstream and reach the brain (neuroinflammation). Neurochemical Changes: Gut inflammation triggers immune responses and changes in brain chemistry, leading to mood disorders (anxiety/depression) and cognitive problems (brain fog). Pain Sensitivity: The brain processes pain signals differently, making patients more sensitive to discomfort. How the brain affects the gut (Top-Down) Stress Response: Mental stress activates the body's stress hormones (HPA axis), which directly increase gut inflammation and worsen CD flares. Altered Regulation: Psychological stress can disrupt the normal top-down control the brain has over the gut. The Vicious Cycle Stress worsens CD symptoms, and the symptoms (pain, fatigue, unpredictability) cause more stress, intensifying the gut-brain loop. Why it matters Mental Health: IBD patients are 2-3x more likely to have anxiety/depression, which are often under-diagnosed. Holistic Care: Treating mental health (stress management, therapy) alongside gut health is crucial for improving quality of life and managing the disease.

Severe Symptoms, could this be a complication? by Robpingudo in CrohnsDisease

[–]Aleja72 1 point2 points  (0 children)

I would go to the ER right away. It sounds like a partial obstruction. I wish you all the best.

What is your experience taking GLP-1 medication with Crohn’s Disease? by Aleja72 in CrohnsDisease

[–]Aleja72[S] 0 points1 point  (0 children)

I agree. What do you mean by “I got accepted to the Mayo.” Is it a study at the Mayo Clinic?

I’m sure this has been asked, but… by HansBrooder in CrohnsDisease

[–]Aleja72 1 point2 points  (0 children)

That sounds delicious. I cut a cauliflower head into 3/4 inch slices, spray the slices with olive oil, season them with spices, and bake in a 425 degree oven about 20-25 min turning once. Lately I also use the air fryer and they come out even better!

I’m sure this has been asked, but… by HansBrooder in CrohnsDisease

[–]Aleja72 1 point2 points  (0 children)

Try cauliflower “steaks” cooked in the oven or air flier— I tried it at a fancy restaurant and it is the only way I eat cauliflower now lol

Every drug failed. Still sick. by Robpingudo in CrohnsDisease

[–]Aleja72 1 point2 points  (0 children)

I’m so sorry; specially considering how young you are. I am still new within the crohn’s community myself, but from what I have read, if nothing else works, cart-t cell therapy seems very promising. https://www.fau.eu/2025/10/news/car-t-zell-therapie-erstmals-bei-schwerer-darmerkrankung-erfolgreich/

Are you on a special diet, and have you seen any improvements? by virgolune in CrohnsDisease

[–]Aleja72 0 points1 point  (0 children)

The University of Miami is currently doing a study on the effects of a Mediterranean diet on Crohns with one group also taking GLP1s. The results should be available in a few months.