Hair Loss and B12 Deficiency?

Hello fellow ostomates, it's good to have a place to ask questions with people who have also had ostomy surgery. I am 5 months post-op, Ileostomy, was in the hospital for 3 months, had a whole bunch of drugs every day, which surely takes time to get through your system. I used to have very long and thick hair. Now my hair is so thin, you can see my scalp. It has been coming out in handfuls the last 2 months. I've lost a lot of weight, owing to everything tasting awful, although I can eat some things. My nails are fine (so far!). It's been suggested my B12 is the cause. Can anyone suggest anything? Anyone else have this experience?

Hi Susie,

Any major trauma or stress (such as surgery) can cause hair loss, often months after the event. I had short hair at the time of my op (about 10 years ago) so probably didn't notice any loss at the time, but once I started to recover, started putting back on weight after being severely malnourished with Crohn's (once the appetite returns you'll be amazed at how good food tastes!), and no longer had to take medication, I started to look human again. And my hair grew long and thick like it was when I was quite young. A lot of the meds taken don't help (particularly with Crohn's don't get me started on the dreaded Prednisolone - just masks the symptoms and lets the disease progress in my opinion).

But definitely up the B12 which is a must with an ileostomy anyway, and maybe a multivitamin. Personally, I try to get my nutrition from whole foods with plenty of protein - eggs, meat, chicken, dairy (particularly full-fat yogurt), some fruit, and veg.

Give it time, after several years of being extremely sick, it took me a good 6 months after surgery before I was ready to take on the world!

Jo

Susie,

I doubt very much that the vit B12 is a cause. My guess is that the combination of all the meds (almost like a chemotherapy effect) is causing your hair to fall out. Give it some time, you'll be good as new.

X_

Susie....have you consulted Dr. Google?

Or even better, consulted a real doctor.....a specialist perhaps?

No expert but I suspect the 'Persian rugs' (drugs) to be the cause.

Good luck.

V.J.

Susie,

I too had long thick hair prior to ileostomy surgery. Between the stress, drugs, and nutrient loss, my nails got brittle and chipped easily and my hair started falling out in handfuls. Every time I washed and brushed my hair I cried. I cut it very short and started researching. I found Nature Made Hair, Skin and Nails, a supplement available in pretty much every grocery store and pharmacy. I get mine at Walmart, which had the best price- about $13.50 for 120- a three month supply. It did wonders for my hair as well as reducing the ridges and brittleness of my nails and helped with the dry skin issues. There are different brands and different dosages but I have researched most and decided on a once daily soft gel by Nature Made because of their reputation for quality testing. Some of the ones I've seen advertised require 3 a day, so read before you buy. Hope this helps and works as well for you as it does for me.

Peace

Nancy

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

This same thing happened to me. For me, it was new hair growing in. Apparently when you are so ill, your body shuts down a lot of processes that are unnecessary for our survival. And when we start to get better, there is new hair growth. It was terrifying but it is coming back in.

Look up telogen effluvium.

I would suspect it's a side effect of meds. Methotrexate thins my hair, so did Remicade and now I hear Stelara will too.

Be careful with the "innocuous" B vitamins! After the cancer treatments (chemo and radiation), I developed peripheral neuropathy in my feet (numbness, tingling, feeling of ants crawling all over them, can't keep them still sometimes). After researching Dr. Google (love that expression!), I found a recommendation from the Dana-Farber Cancer Institute about vitamin B12 and B6, which research showed could help with the neuropathy. My oncologist had no recommendation either way, so I followed their recommendation about dosage and did not do anything other than exactly follow their recommended dosage. A few months later, I noticed my eyes becoming dry and irritated. I didn't think too much about it, just got some eye drops. It kept getting much worse, my eyes developing light sensitivity along with desert dryness - I literally could not cry, I had to wear super-dark sunglasses in order to go outside on even the most overcast days - it was a nightmare. My ophthalmologist found nothing wrong. My GP ordered a battery of tests, including for vitamins B12 and B6. My B vitamin levels were double the upper end reference value, and I was told to stop taking the B vitamins altogether (my general multivitamin was OK but nothing else). Within a week, my eyes started getting better. Within 2 months, they are now almost completely back to normal and getting better daily.

This effect was not listed anywhere on the internet as a possible side effect, and it was difficult finding any information on strong side effects of any kind of the B vitamins. Totally scary, especially when I realize I could have permanently lost my sight! Before taking any B vitamins, make sure your doctor is on board with this and monitoring your levels. The really scary thing is these vitamins at this level were freely available over the counter without having to take multiple pills to reach the recommended dose!

I always had thick, curly hair. It was about 5 months after my surgery for ileostomy that it came out like crazy. My doctor explained that all the stress on my body was the cause. It all grew back just as thick. Be patient. I look at pictures from those days and I am amazed at how thin it was.

Hey Berri.

I had long hair as well! Mine turned dry and brittle and was breaking something awful.

It wasn't coming out from the roots, it was actually breaking in the middle of the strand. I kept trying to cut the dead part off, but it wasn't doing any good. It would just start breaking again, so I got it all cut off down to where I thought the new growth fought the new growth was. I only had about 1 1/2 inches left. I'm glad I did because the dead hair was preventing my hair from growing.

It's deal short, but it's growing thick and healthy.

I am going through the same exact thing. It's scary. I don't know what to do. I thought it was just me. My hair is my life!

If the hair is dead, you don't really have a choice. In order for your hair to get healthy and start to grow again, you're going to have to get rid of the dead hair.

It will grow back!

Hi Susie,

I have suffered hair loss as you describe twice. The first time was after giving birth to my son and a very difficult birth. A couple of months later, my hair started to fall. In the end, I decided to cut it really short and eventually it recovered.

The second time was nearly 4 years ago when I had my ascending bowel and 3 yards of small bowel removed after it died, which was emergency surgery. It was a very stressful time. I was fed through my vein and could only eat ice cubes for a while and lost a lot of weight. My body responded by me losing my hair again. It was long before all this but at times like this, I think your body puts all its energy into keeping us alive and not on the things we don't need to survive. Again, I had very short hair but now it has grown back only it is dark blonde rather than medium brown, but I don't mind that. With that surgery, I lost the part of my bowel that absorbs B12, so now I have injections every 12 weeks which I supplement with B12 patches after about 6 weeks for a boost, plus I try to eat a healthy diet. Lots of protein and veggies but no sugar or simple carbs. My hair is nearly shoulder length now. It's not quite as thick as it used to be but fortunately, it was thick to begin with. I think cutting it really short helped both times and also I hated it when it was long and so thin.

All the best, Beshlie

I have good news for you! It will come back. I had three surgeries in very close succession. One was planned and two were emergencies, one of which was my bowel removal. My hair fell out in handfuls. I wept like a baby! However, it has started to grow back now and looks much better. Get some special shampoo and conditioner at the store called Noxinol. I am not sure of the spelling. It is specially made for thinning hair. It really helped mine a lot.