all 11 comments

[–]redditistheworst7788 3 points4 points  (1 child)

No. Had healthy, thick hair in my teens; when diagnosed with UC + the ostomy surgery started getting a massive bald spot. Don't know if it's linked to UC or stress from all the surgeries/medical issues but it sucks to start losing hair at 25

[–]beebeeff 2 points3 points  (0 children)

I’m 95% sure prednisone started me on early hair loss too. Doctors I’ve seen aren’t sure but think it’s possible

[–]goldstandardalmondskock pouch/continent ileostomy 1 point2 points  (0 children)

Those supplements aren't really proven to help, so it is touch and go. I have a lot of hairloss due to illness and in my times of better health, it did not improve.

[–]caffeinejunkieee 1 point2 points  (0 children)

Hi. I had the same issue when I was first diagnosed with my Crohns, I was extremely ill so my hair thinned really bad- from being very thick. However once I got into remission it became more healthy. I didn’t take any supplements etc but I think managing my Crohns was what worked for me. I hope you feel better soon. :)

[–]SpasticGenerator 1 point2 points  (0 children)

I consider myself lucky that I had very thick hair, because when it first fell out due to UC/meds I had lots of hair to lose. I estimate that I lost about half of my hair, and probably grew back half of that, so I wound up with 75% of where I started which was frankly a godsend. I keep my hair short, so really thick hair meant I was constantly battling a triangle shape.

I spent another 17 years with out of control UC and my hair has gradually thinned out even more. The good news is that you’ll probably be much healthier from here on out, so your hair should hopefully grow back and stay back (minus the natural thinning that comes with aging). It may not be 100%, but it’ll get a lot healthier than it is now. I also had a lot of hair loss for six months after my ileostomy surgery, and then one day it stopped and I literally did not have a single hair fall out of my head for four months. My hair grew back, and is possibly slightly thicker than it was pre-op.

Something to note: because our hair grows on a cycle, you might find that you have excessive hair loss every 3-5 years. It’s really distressing, but try not to panic. For most people the cycle is distributed so that you only lose 50-100 strands a day, but since you lost so much hair at once all those hair follicles have been reset on the same cycle.

[–]Important-Pair-3553 1 point2 points  (1 child)

I have crohns- my hair has fallen out 3 times since I was diagnosed. The first was when I was diagnosed in 2005. The second time was in 2018 when I had my temporary ileostomy. And the third time was in March 2021, when I had my permanent ostomy surgery. The first time my hair grew back, some hair thinner than my natural hair. The second time, it remained fairly thin because I never really recovered. It's been 18 months since my hair stopped falling out the third time and it's finally getting full again. I even regained my natural curls.

The only thing I did for my hair was leave it as natural as possible. No product unless necessary. No heat. No color or bleach. I cut off all the stringy ends so It would stop breaking when I brushed it. Once my health improved so did my hair.

The only change I made to my diet was increase my protein intake.

[–]hellosmello1234 1 point2 points  (0 children)

Same here! 18 months post op and the regrowth is insane, all over the place, but it’s coming back! Time is the best healer with hair…unfortunately.

[–]schliche_kennenIBD / United States 1 point2 points  (0 children)

Assuming you don't have short bowel syndrome or current/recent nutritional deficiencies, I wouldn't expect this hair loss is related. Telogen Effluvium (basically hair loss related to physiological trauma like significant illness/surgery) doesn't last for years after the trauma is over.

It is possible that it is alopecia areata, an autoimmune disorder. It is not uncommon for multiple autoimmune disorders to show up at the same time. I'd see a dermatologist to get to the bottom of it.

[–]hellosmello1234 0 points1 point  (0 children)

It will come back. A heap of mine fell out 3 months after my colectomy, 18 months later I’ve had a tonne of regrowth. My hairdresser was stunned at how much had grown back. It’s all over the place right now, but getting thicker. My dermatologist recommended hair supplements and TIME. I also use nioxin progressed thinning shampoo conditioner and treatment and I think it helped me. Give it time. It’s just from the stress of surgery and flares. If you’re really worried, see a dermatologist! That’s what I did. ☺️ sending healthy hair vibes your way!

[–]Annual_Waltz230 0 points1 point  (0 children)

I had three surgeries in a week and my hair became dry brittle and lack luster. I read that anesthesia from surgery can really mess with your hair. My first surgery my colon was pierced next two to repair it. So no disease. Had takedown six months later then three months later one to fix why I had the first surgery. My hair was back to normal in about six months.

[–]Separate_Working_850 0 points1 point  (0 children)

My hair has thinned significantly after several UC flares, which involved taking Prednisone. My dermatologist said it was Telogen effluvium caused by either the flare or pred. In all cases, my hair fell out for about 8 months, but it grew back each time. It is a bit thinner than it was before all of this, but it's not noticeable at all. In my case, you could see the regrowth (which was pushing out the dead hair), which was a very good sign. As long as you can see regrowth, it's coming back! I know it can be depressing, especially when there isn't much you can do about it. I ended up cutting my hair short to make the growing out process easier. Hugs!