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BetterBowels
(@betterbowels)
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June 27, 2018 9:12 pm  

Hello all,

I need a little help. I've been losing hair by the handfuls (no exaggeration). I've always shed pretty heavily, but now my hair is actually thinning. A little background: I'm 23, my ileostomy was less than two months ago, and I had a very terrible infection that led to sepsis. I'm fine now, but this hair loss is crazy. I've been taking Hair, Skin and Nails for about a week or so. No change yet, although I didn't expect it so soon anyway. 


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Zvitusk
(@zvitusk)
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June 27, 2018 10:28 pm  

Hi! 

Just listened to you and my first reaction was tp beg you to see your doctor. If he/she is not familiar with your symptoms,  GET A CONSULT with a dermatologist. 

Trust my gut feeling , please.  I could be wrong but I  usually am not. Please seek expert help.

 


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Marcie
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June 27, 2018 10:44 pm  

Hi B.B.  ( do u mind?) For one thing DONT cover your head all the time!!  You have to have air on your head..  My husbands aunt was a nun, and they wore those head things all day except for sleep and bathing.  they lost most of their hair for life.

I am sure your at wits end with this!!  (I was )God love you!  I pray that this reverses itself ASAP!!  You don't need this too now. 

(I was) = When I was in a 2 month coma and in the hospital for 7 months, they never brushed my long hair.  So it got knotted u bad, then they decided to comb it.. tore my hair out of it roots on one side and back. Painful !! It took so long for any growth to show like 6 months- not normal as growth shows al the time. But  I did have 5 different infections and medications during the 7 months tho-- My hair finally grew and when it did? it kept up. A  bit on the thinner side than it was before, but I always had thinning hair as of my age.. But I will take it.. Good luck!! 

 

 

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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LK
 LK
(@dlkfiretruck)
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June 28, 2018 1:12 am  

Good evening...I am with Zvitusk here.  See your doctor.   I am Vit. B12 deficiant and one of the symptoms is hair loss.  Your body has been thru a lot and it is not worth it to not see your doctor.  Do not take B12 first, you need to be tested.  Supplements will fool with a test.  One of the first signs of deficiency is hair loss and if need be a shot can help with this a doctor needs to order it.  It is important to start keeping track of these things either on a calendar or in a journal designated to changes  as you notice them...ex. fat loss, hair, tingling anything not normal should be seen by your doctor. 

Be safe.

Linda


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VeganOstomy
(@veganostomy)
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June 28, 2018 11:50 am  

I wouldn't say that hair loss is normal or expected following ostomy surgery, but it is normal and expected if you have any deficiencies and/or are taking certain medication.

A blood test should rule out deficiencies. 

As Linda suggested, take a journal of what's happening (I kept a health log that became invaluable to me and my doctors) and speak with your physician to see if anything else needs to be ruled out. 

EDIT: I just realized that you also have UC. A friend of my mine wrote an article about hair loss with IBD, and I think you might find it interesting at least:

Telogen Effluvium Hair Loss in IBD

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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BetterBowels
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June 28, 2018 2:29 pm  

Good advice, Z. I definitely will get an appointment to see my dermatologist. I have an appt with the general surgeon who completed my colectomy, so I plan on asking him about possible causes. However, I'll see the derm anyway, because I have to get some basal cell carcinoma removed anyway.

Marcie, thanks for sharing. And you can call me Darla. That's terrible you received poor care during that time. It's sad to think people who are in charge of our daily care can't be bothered with consideration. I'm not too afraid about it. I figure, I'm young and it'll grow back if the problem isn't serious. In any case, wigs are always an option too!

Hello again, Linda. First, thanks for the advice. My doctor tested me for deficiencies before I started taking the vitamin, and she recommended I take it. She said it wasn't low enough to be concerning, but I'm going to ask the surgeon tomorrow if he has another opinion. I hate to miss something important due to incompetence. Oddly enough, my nails have been growing faster and are much stronger. If I'm not mistaken, keratin is responsible for hair and nail growth, so I would assume my nails would be brittle and grow slowly as they did before my surgery. 

And finally, Eric, thanks for the link. I'll check it out for sure. As I mentioned, I've always been a "shedder." I've always had thin hair that seems to grow rather slowly. I do have another disorder that I guess could possibly be related. It's called hyperparathyroidism. Basically, my parathyroid glands over produce a hormone and cause my bones to lose lots of calcium in my blood (presumably responsible for my kidney stones). I'm wondering if this is related. It causes terrible tremors and an endocrinologist suggested I need parathyroidectomy. However, she only listened to my symptoms for a moment and hadn't seen any results or ordered any testing. I'm gonna get a second opinion. 

But, I digress. Thank you all for your responses. I'll let you know what the surgeon says tomorrow.

Darla


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LK
 LK
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June 29, 2018 1:08 am  

Eric, this article is amazing and sure explains a lot.  Thank you for making us aware of it. I have had three hair cuts to hide such thin spots in five months, and after reading this it all falls into place...not just my hair.

Linda


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BetterBowels
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July 11, 2018 10:50 pm  

Update: The doctor says my hair is falling out in preparation for new growth. Apparently, this is similar to what happens to a woman when she gets pregnant. Hopefully, the new stuff will get moving in soon!


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LK
 LK
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July 12, 2018 3:13 am  
Posted by: Linda Knelsen

Good evening...I am with Zvitusk here.  See your doctor.   I am Vit. B12 deficiant and one of the symptoms is hair loss.  Your body has been thru a lot and it is not worth it to not see your doctor.  Do not take B12 first, you need to be tested.  Supplements will fool with a test.  One of the first signs of deficiency is hair loss and if need be a shot can help with this a doctor needs to order it.  It is important to start keeping track of these things either on a calendar or in a journal designated to changes  as you notice them...ex. fat loss, hair, tingling anything not normal should be seen by your doctor. 

Be safe.

I have to ask...DID your doctor run some blood tests and test your for B12 Vitamins.  I asked my doctor for B12 shots after my hair kept falling out. I new what the problem was, and, was sure it was happening again.  I was right and the tests proved it. The blood works is what will tell him for sure.  I went a whole year without the shots ( I give to myself,  prescribed by my doctor) and,  I now have a whole lot of hair that needs to grow back and a hairline that needs to grow in about an inch all around...and it is still falling out like crazy! It looks rather ratty and thin, and I go to great attempts to cover it up. I would hate to see that happen to you especially when it can be helped. 
Never be afraid to be direct with your doctor. Gentle, but direct as he is the one who went to college.  However, they are wrong sometimes.  A good doctor will admit or apologize when they know they are wrong. I think it is important in the doctor patient relationship, especially when dealing with a chronic illness. I have to see my doctor often and am most always having blood work done for one thing or another.  I waited too long to press the issue with my doctor and I was sorry about that. The numbness in my hands and feet  are the truth of that.  I figure if a doctor gets insulted because we have asked a further question or said I would feel better if... than he is not treating the whole patient. If no blood tests were done and your hair loss is enough to cause concern, I think I would drop in at a clinic for a second opinion.  I hope I am wrong.  Stay well.

Linda

Linda


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VeganOstomy
(@veganostomy)
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July 12, 2018 10:27 am  
Posted by: BetterBowels

Update: The doctor says my hair is falling out in preparation for new growth. Apparently, this is similar to what happens to a woman when she gets pregnant. Hopefully, the new stuff will get moving in soon!

That's a good explanation! Best of luck to you!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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June 30, 2019 4:43 pm  

I know this is an old topic, but I had almost all of my hair fall out in the 4 months after my surgery. I was extremely malnourished by then, so the drs attributed it to that and the stress my body was under. It is growing back now. I have been taking lots of vitamin B and using essential oils on my hair and it has helped a lot. 

-Liza
“May your day be bright and your bag be light.”


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VeganOstomy
(@veganostomy)
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July 2, 2019 11:39 am  
Posted by: SqueakyandLiza

I had almost all of my hair fall out in the 4 months after my surgery. I was extremely malnourished by then, so the drs attributed it to that and the stress my body was under.

I wouldn't be surprised, but I'm glad it's growing back! That's a sign that your health has been improving! 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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