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Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/11/2011 12:26 AM (GMT -6)   
One more question before I head to bed:) At 8 months post-op, I am still experiencing hair loss. It really peaked at around 3-4 months post-op and has slowed down some, but I am still losing more than normal. I have lots of tiny hairs growing back in... so no worries about regrowth. I just fear that all my old long hairs are going to fall out leaving me with a head full on short new sprigs of all different lengths. My pony tail is half the width of what it used to be:( I had really low protein levels around the time of surgery due to being malnourished from UC... not to mention being on Prednisone, Remicade and just the stress of surgery, recovery and being sick in general for a while before surgery.

Anyone have experience with hair loss? How long did it last?
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/11/2011 6:40 AM (GMT -6)   
I had the same thing. I had been losing my hair for YEARS before the surgery, and then it continued about 8-10 months after the surgery. It is now starting to grow back and I only just stopped wearing wigs.

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 7/11/2011 9:56 AM (GMT -6)   
Yes, my daughter had the samething. Hers started before sugery, she had her hair in pony tail and put her hands through it, I couldn't believe the hair that came out in her hands. Called the doctor and she said it was normal from her being so sick that even your hair gets sick. I know what you mean with the ponty tail not as full as it used to be. Her doctor recommended bioton she has been taking that. Three months post-op and now she can take a shower and the tub isn't full of her hair. Hers is also growing back. Hers just thinned out never lost any of her long hair. She had a couple of places where it was really thin. Could see some of her scalp. When she does pull it back you can see the baby hairs growing in.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/11/2011 12:37 PM (GMT -6)   
Thanks for the input. I am glad to see mine coming back in, but it will take forever to get to be as long as the rest... if that doesn't all fall out first! Yeah... I have a few places on top where you can see my scalp. Argh! I have pretty fine hair to begin with too, so this has made it really thin. I used to sometimes wear my hair in two braids... but now they are so scrawny it looks ridiculous. I have always loved hats, but now I like them even more. My hubby has bought me some very cute ones lately:)

I will look into the Bioton. I could see losing my hair when I was sick and then right after surgery, but at 8 months I thought it would stop. I guess there is just a delayed reaction because I feel so strong and healthy otherwise. There does seem to be a little less in the tub lately. I will hope this is a sign that the hair loss is coming to an end.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 7/11/2011 2:39 PM (GMT -6)   
Do I understand it right; that it is common to have a hefty phase of hair-loss after a collectomy? Or after a run of collitis? Because I had surgery in April and for the last month have been losing tons of hair all over the place, also have some short new hairs sticking out of my head. Looks frizzy. And a year ago the same thing happened after a flare and a round of cortisone. Is this really related to surgery?

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 7/11/2011 3:20 PM (GMT -6)   
According to my daughter's GI it is normal. It is the new hair pushing out the old. When it was coming out, we tried not to put it in a pony tail. Only when she had to. Her hair is long also. She just got a couple of inches cut off. I combed her hair for her cause she hated to see the comb full of hair. But none comes out anymore when it is combed. I think that is a sign the less you see in a tub.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/11/2011 4:02 PM (GMT -6)   
I use a biotin b complex shampoo. Google it and buy it! it's in a blue bottle and only like $12 with shipping. Also taking biotin orally is good.

I've heard that hair is a little behind the body, since it's dead cells from your body. Don't worry if it takes a while. Your body has been through lots of trauma with sickness, medication, and surgery.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/11/2011 4:36 PM (GMT -6)   
Do people have hair loss elsewhere, or just on the head? Somewhere along the line, I lost most of my underarm hair. I don't much care about that.... never had tons, and haven't shaved since I was a teen.... that kind of hair loss is a bit of a bonus.

But I'm not sure if that had anything to do with my disease or surgery. Honestly, I'm not sure exactly when it happened, wasn't paying attention. My mom has had almost no underarm hair her entire life, so it could be genetic, but I used to have a lot more. Hair on my head (always very thick) and legs seems to be about the same. Weird.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/11/2011 4:55 PM (GMT -6)   
Blueglass- for a while after surgery I hardly had to shave my legs as the hair wasn't growing much. Still had to shave my underarms though. It is weird. Body, can I trade the underarm hair for some on my head please?!
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/11/2011 5:55 PM (GMT -6)   
Oh, if only such requests worked a little better ...... then we'd all have functioning colons and our docs would have to find something else to do....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/12/2011 7:34 PM (GMT -6)   
     While on some meds with the UC, I did experience some thinning of my hair.  My hairdresser suggested Nioxin and it does work.  I use the shampoo and conditioner.  about 4-5 months post op my hair really starting falling out.  I noticed little bald spots  in places.  Thank God it was winter and I purchased a wig.  I went to the dermatologist with my husband in January and mentioned my hair problem to her.  She said it was from the anesthesia and it should start coming back in around April.  She was right on target...it did start coming back in April.  I no longer have any bald spots and my hair seems even thicker than before my illness!
     Blueglass...you mentioned the fact that the hair under your arms seems less.  I noticed you are 48 yrs old.  I believe it is hormonal.  When I went through the change, I was done with my period by age 44, the hair under my arms ceased growing altogether!  Wish the hair on my legs would rolleyes ...lol.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/12/2011 8:33 PM (GMT -6)   
Interesting, Christine .....thanks. I kind of wish that change would come..... on coumadin, I am so miserable for about three or four days a month.... I'm fine w/no more underarm hair, though.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 7/13/2011 1:06 PM (GMT -6)   
I was just talking about this subject yesterday.  3/4months post op, I was horrified with my hair loss.  I was otherwise OK, hemoglobin still borderline low and platlets high, but OK and wasn't on meds.  I brushed my hair every few hours, the brush was full.  When I would take a shower, the dead hair would get tangled in with the others and couldn't brush/comb my hair out after due to tangles.  Couple times I had to cut my hair loose like when a child gets gum in her hair.  Also, all that hair in the tub and all over me was disguisting.  So, I would only wash my hair once a week.  Would pull on my hair and clumps in hand, even brushed my hair outdoors.  3 weeks later, I saw my primary physician for a follow-up and spoke my concern.  She told me it would just have to go through it's course.  But I told her that I would like to start taking extra Selenium (did this regarding the hair loss, which wasn't nearly this profound, after the birth of my 2 children) and Biotin.  She approved my suggestion and started taking them that day.  1 Week later improved drasticly.  I have always had very long, straight, full hair.  To loose 2/3 of it was amazing and the little new hair growth were spikey all over, my beautician had a hard time highlightening it.  12 months now, not full, new growth is about 4/5 inches, it's getting there and will get there for you too!!!

Subzeromambo
Veteran Member


Date Joined Sep 2009
Total Posts : 1143
   Posted 7/13/2011 8:57 PM (GMT -6)   
I did a little research and found that the top symptoms in adults for biotin deficiency are hair loss, red-scaly skin and brittle nails. I have all three plus two more that may also indicate biotin (vitamin B7) deficiency.
Long term TPN (more than 1 week) used to be connected to biotin loss but now all TPN is supposed to contain biotin. Biotin is processed in both the small and large intestine. The most common cause of biotin loss in adults is antibiotic use.
I have been a little frightened by losing more than half the hair on my scalp and body. I started taking a biotin supplement of 35 mcg. According to a couple of sources cooked eggs and liver are the highest source of natural biotin.
Thank you for bringing this up blueheron and thank you to Windy City for suggesting that biotin may help. It only takes a few days for the extra biotin to start working. I can't wait!
Szm

Post Edited (Subzeromambo) : 7/14/2011 12:23:55 AM (GMT-6)


blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/15/2011 9:12 AM (GMT -6)   
Hope the biotin helps quickly. That's really interesting, thanks. I eat a lot of eggs, that might have helped me avoid this complication.....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 7/15/2011 3:43 PM (GMT -6)   
Blueheron:

1) Prednisone, 2) lack of proper nutrients, 3) all the "stuff" used in surgery = hair loss.....

It's weird, I've had hair grow back on my legs (both mid-thigh and calves area) and lost on the top of my head.....

It will pass for all of us!

jimmy

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/15/2011 6:23 PM (GMT -6)   
Thanks for the suggestions everyone. I ate a lot of eggs before and after surgery, as it was one thing my body tolerated very well both with UC and then after the surgery plus I was trying to amp up my protein levels. Doesn't seem to have made a difference for me. Oh well. I will try the Biotin and see how it goes. It is reassuring to know it will grow back eventually.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Subzeromambo
Veteran Member


Date Joined Sep 2009
Total Posts : 1143
   Posted 7/16/2011 10:54 PM (GMT -6)   
Biotin is working for me. The red scaly rash is now a slightly pink area of rough skin. My hair is no longer filling the hairbrush after four strokes! No new hair growth but I feel much less fatigued.
I didn't lose my hair with mega toxic colitis or other intensive care surgery but Jimmy's suggestion does make sense.
Szm

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/17/2011 11:10 AM (GMT -6)   
It's usually a result of our sick bodies, meds and the effects of anesthesia and shock of surgery.

SZM glad the biotin is working. B-12 does wonders for growth, too.
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

courtneyfox1
New Member


Date Joined Sep 2011
Total Posts : 13
   Posted 9/22/2011 10:34 AM (GMT -6)   
Has anyone considered treatments such as wigs or hair replacement methods instead of medicines?
Courtney x
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