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.

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!! 

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 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: http://dansharpibd.org/telogen-effluvium/

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

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.

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!

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

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!

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. 

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! 

I had a radical cystectomy for stage 3 bladder cancer in mid-Sep almost four months ago. I have no trouble eating, I take a daily supplemental multi-vitamin as prophylaxis, I exercise daily, my health has been good. My latest scans about a week ago show no evidence of cancer. Yay! Nevertheless, I am experiencing steady hair loss. I am shedding when I brush my hair and in the shower. Its not heavy loss, and I have fairly thick hair so it is not yet too noticeable. I am wondering if the loss of all my female parts with the surgery have changed my hormones to cause the hair loss. After all, hormonal imbalance in menopause is thought to contribute or cause hair loss (yes, I am post-menopausal too). My husband did some research on-line and could not find direct information about hair loss associated with women and radical cystectomy although there is much information about effects on intimacy. So I am asking if there are other women out there in a similar situation.  

@oneeyegirl...Hi there!  I'm so sorry you have gone through so very much. You are in the right place here though!  Having a hysterectomy plus is one thing that causes hair loss but your cystectomy & cancer thats a triple whammy!!  My heart goes out to you big time! I hope you are feeling a bit more like yourself these days to some degree. Take as much time as you need getting back on your feet, but do try and go for short walks outside if you can, adding to them every week, drawing back if you get too tired & drink plenty of water. It does help flush the residual meds out of our systems.  

Hair loss is a frustrating experience for anyone I think. But its worse when we are not feeling well enough & it becomes  more frustrating to deal with the thinning & trying to find a hair style that works.  We woman can't hide behind our hair if its not well either. 

I have been dealing with it for about 6 yrs now. I did loose a good 1 1/2 inches all around the outer circumference of my scalp. I felt like I was wearing a little beanie cap of mud length hair. Not pretty!! lol!  No issues with scalp that needed special treatment or anything, I was just in shoddy health & my body was rebelling thru my hair & telling me the best way it knew how.   

I had to have an emergency hysterectomy when I was 28 yrs  old. I lost a whack of hair then too. Since, I have  found after that anytime I had surgery, combined with anesthetic my hair took a hike in the opposite direction!!  Now, anytime something medical is going on with me my hair falls out.  I've learned to report it to my GP.  He always runs tests & calls me with results. It is very annoying but at the same time it is my thermometer to how my body is actually doing on the whole. 

I have an Ileostomy with short gut syndrome and deal with Interstitial Cystitis of the bladder.  I found out recently that I would have had a cystectomy by now, but my doctor held off because that would make me a double bagger. I'm not sure I'm ready for that yet!                          I have dealt with malnutrition again & severe anemia on an on going basis & this has been the more prominent reason for the fallout this time again.  However this round has been the most drastic of all.  My hairdresser is wonderful & up until covid has managed a good style for me that made it hard to notice fall out to anyone but me...well, untill I get caught in the wind! lol! 

I am on a prescribed Vit. B12 shot, I give them to myself &  my GP has me going for Iron Infusions on  a regular schedule with blood work & waiting for special approvals for the type of iron I'm on inbetween. I have an Iron sensitivity and require one normally given to patients on Dialysis, so this us the reason for approval. 

I have started taking a vitamin from the pharmacy that is directed for Skin, Hair & Nails. I also take a good multivitamin for woman over 50.  Being post menopausal I felt this was important. On taking this vitamin for skin, hair, nails,  I realized all over again the importance of reading the labels. I found out that if taken with milk or fats of some kind or a meal, they actually work better.  The Instructions are to take them  twice a day, but my budget dictates once! 

Since taking them with milk, now about 3 months in,  I have found that my hair line is actually starting to have this fine hair growth happening! Yay!!! At 1st it felt like a brush cut going on up there, but I've noticed the hairs are about an inch long & it does look like I cut my bangs myself. I don't mind this too much as long as it keeps on coming in! I also give myself a good scalp massage several times a week for blood  circulation. It doesn't just feel good, I really think it's helping a fair bit too. 

So, I hope this has been what you were hoping to here to some degree. It does help if we know we are not alone in these battles. I honestly did not know that either until I accidently stumbled across one of our Eric's wonderful Videos and followed him here to VO! No question is a dumb question.  Most of the time there are good folks reading & checking in to see if anyone here needs help or encouragement.