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Posted By : TIKIITI - 1/29/2017 2:39 PM
Sorry I might be in the wrong category, but I could not find anything on Sepsis. My question is regarding hair loss after sepsis.

I just turned 42 and have always been a fit and healthy female. Now three months post sepsis, all of a sudden my hair has started coming out at an alarming rate! I am absolutely devastated at the thought of going bald! I even started washing my hair only once a week because I can't bear to see the amount of hair that comes out each time I wash it. I am already dealing with ailments such as abdominal pain, sleeplessness, weakness, depression and fear of not healing and now I have this on top of everything. I am really worried that it will not stop and I will become bald! I have a hard time being patient so I had some blood work done and my ANA numbers were slightly elevated so now I'm worried that I may have lupus or something rare and untreatable which is causing my hair loss. My general doctor says not to worry... that elevated ANA levels can mean nothing and we will do more blood work in a month. She said my hair loss is normal for all I've gone through and it will stop and come back. My husband keeps telling me that my body went through a lot and I almost died... lost a ton of weight... all my muscle tone and became skeletal looking, and right now all my energy is going to the healing of an open wound I still have on my upper right abdomen.

I am hoping the hair loss will stop as I get healthier. I decided to stop all pain meds a few weeks ago and already gained ten pounds, but have ten or fifteen more to go. I cannot do my runs and rides yet, but I have started going on walks and back to work. I am taking a bunch of vitamins and multivitamins for hair and my immune system and eat lots of protein. The wound on my abdomen is healing and closing up nicely with the help of a negative pressure therapy wound vac. Given how serious sepsis is I feel very fortunate to still be here, but I cannot stop obsessing about my hair.

Just some background on my sepsis...
Last October, my bowel got nicked during a scheduled surgery to remove a benign endometrioma tumor and a cyst. A couple days later I was back at the hospital for emergency surgery and an infected body. I was in ICU for over a week, TPN (total parenteral nutrition) IV for three weeks, received 3 units of blood and stayed 40 days in the hospital. Because of the massive swelling or Peritonitis in my abdomen, coupled with how thin I was, the surgeon could not close up my abdomen for weeks. There were liters of fluid drained out of my abdomen, which was obviously infected. I had 9 more surgeries (one every 3rd day) with full cavity washouts and was finally closed up with the help of the ABRA system. Unfortunately the surgeon was unable to close up the smaller wound from my initial tumor removal... which is still in the process of healing. They said the only reason I survived is because of how fit I was. I truly believe my strong heart and lungs hung in there for me. I also had cylinder extensions which started to tear out my real hair while in ICU, as the nurses were moving my body around to prevent bed sores. I had them removed while still in the hospital, but am left with three dime size bald spots on the back of my head.

I know my body was in a dire state for weeks and the hair loss is probably from prolonged malnutrition while I was "out of it". But I guess I'm just looking for answers on whether it will stop and grow back. I am so upset and feel totally alone with this fear. I go to work (which I use to love) and put on a brave face, but I'm struggling to find my drive. I use to be so vivacious, driven and healthy and now I feel so "off" and ugly with all my crazy scars and a big ol' open hole in my stomach... and now this hair thing got me spinning out of control. It's scary to feel like my best days are over at such a young age and I am worried how all this is affecting my marriage. My husband is the best strongest man who literally did not leave my side. He moved into my room at the hospital, set up a little office area for work, and stayed the entire 40 days! I know my crazy moody self is not fair to him as he's also dealing with a lot of anger issues due to all of this. I need a break to be a better me and a better wife! I just want to get past this to my normal again, but the hair loss is a constant reminder that I am not doing so well.

Thanks you in advance for any help and advice.

Posted By : (Seashell) - 1/29/2017 3:25 PM
Loss of hair after severe trauma or surgery is due to the endocrine effects and stress response.

Have no fear. The hair loss is temporary.

The hair loss appears just as your has, at about the 3 month mark post stress, as the lifespan of a hair follicle is about 4 weeks.

Your hair will rebound. The hair loss is temporary as a response to the endocrine stress response.

Post Edited ((Seashell)) : 1/29/2017 3:03:03 PM (GMT-7)

Posted By : straydog - 1/29/2017 3:37 PM
Hello & welcome to Healing Well. Every person that comes here has a story to tell. After reading your story it is obvious you have overcome a lot but you have a ways to go too. You have a lot of control over getting your life back too. Above all keep moving forward with your healing.

I am getting the feeling you are having a lot of anxiety issues going on which I would imagine is understandable considering everything you have gone through. In all reality, you are very lucky to be alive. With that being said you need to listen to what your husband is telling you. It is going to take quite some time for your body to make a come back from the sepsis & get every thing internal to heal more or less get healthy inside & reset so to speak. As far as your hair goes I am not surprised that it is coming out. Stress alone can cause bad hair loss. You have a lot going on & perhaps you need to try & focus more on getting yourself healthy not only physically but emotionally too. Yes, emotional healing is part of it too.

Your depression & anxiety are both very much treatable & if you are not getting professional help, by all means consider getting some help. The what ifs will eat your lunch & just keep the anxiety at its peak. In stead of telling yourself I will never be the same again or my best days are over at such a young age, all you are doing is setting yourself up by letting negative thoughts take over. Use that energy in a different direction that is productive for you. Stressing over the elevated ANA, listen to your dr. Think about what your system went through time is your new friend. The added stress of the what ifs will take a toll on your body & lets be honest, your system has been taxed enough. Maybe talking with a good psychologist would be a consideration.

From what you have written about your husband he is indeed a good man. How you perceive & project yourself to him will affect him. You said he never left your side while in the hospital. This entire ordeal has also had a profound affect on him too. You are having concerns of this affecting your marriage, please do not let this happen. Counseling may be an optional for both of you.

Take care & keep us posted....
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 1/29/2017 10:50 PM
I share with you a common thread of having survived a severe intestinal perforation with sepsis.

Susie is correct in pointing out that you are embarking on a dual pathway of healing, encompassing both emotional and physical healing.

As you proudly mention, you have always been a woman of health and vigor, who valued physical activity and exercise as a foundation of wellness. That is, until surgery to remove an endometrial cyst and tumor that went terribly awry. From reading your post, my sense is that you are in unfamiliar waters in feeling and processing the waves of emotions that accompany a serious and life-altering illness/accident.

Five years ago, I sustained a severe intestinal perforation owing to long-term use of coritcosteroids that thinned the tissue integrity of my GI tract. The entire length of my large intestine "unzipped," spewing digestive food contents and coercive digestive enzymes into the otherwise pristine abdominal cavity. I was given a 5% chance of survival.

I survived, by grace of God/Higher Power and the combined skills of a team of amazing medical providers.

I would be remiss if I remarked that the subsequent recovery was simple and straightforward. It was not. The recovery was a long and grueling process, not for the faint of heart. Recovery was not a steady upward trajectory of improvement but rather an undulating process punctuated by a series of set-backs and small victories. Progress was measured in weeks rather than in days.

I was hospitalized for an initial 56 days, with two subsequent admissions due to complications tacking on an additional 16 days. Final length of stay: 72 days. Staggering.

In the first hour after the dramatic failure of my intestinal tract, in the emergency room, I experienced a near death experience. I was neither here on earth nor elsewhere in Heaven. I was in the spiritual in-between. I am an Episcopalian by baptism and faith and consider myself gently spiritual. I would not be someone who would normally be believing of a near death experience. The experience was real and has had a profound influence on my prism through which I now view and live life.

For me, the emotional healing of my mental and spiritual self had a longer time frame than the physical healing of my body's tissues and surgical scares. I think you can expect the same. That your emotional healing, adapting, and coping will extend well beyond the physical healing of your surgical scars. PTSD can be part of a serious illness with prolonged hospital stay and ICU course.

I agree that counseling can be immensely helpful. You would not think of trying to heal your surgical wounds without the care of your medical team. The same logic applies to your emotional wellbeing. I encourage you to consider working in partnership with a psychologist, social worker, case manager, or other mental health professional to address your emotional needs and pathway for total body healing.

A profound illness/accident/injury can oft serve as a valuable "pause" or "re-set" button, giving one the allowance to slow down from the hectic pace of everyday life and to adopt a more measured and reflective stance. Use this opportunity to an inward study of yourself and your core values and to how your are living your life. Are there changes that you would like to make? How do you want to live your life, given this new opportunity to do so? How do you want to make a difference in the immediate world around you? How do you want to experience the key relationships in your life with family and friends?

Bottom Line: Use this unfortunate happenstance and unexpected health crisis of the endometrial surgery and intestinal deficit to leverage the benefit of a "pause" or "reset" button. Spend time in quiet reflection of your own life and how you want to define your life moving forward.

To wit . . .

I am hoping that your preoccupation with your hair is a temporary coping mechanism and not something that will carry forward as a primary concern and awarding of sense of self. You have come through too great of a threat to your in surviving systemic sepsis to become narrowly focused on the appearance of your hair.

Yes . . . hair is an important part of how we identify with self. We look in a mirror and see a reflection. When we look in a mirror we have an expectation of what we will see, an expectation born through years of keeping to a certain style and cut of hair. We expect to see the same self image when we look into a mirror. Hair is more than a tuff of keratin and cuticle that sits atop our head and scalp.

But hair is only one aspect of how you portray yourself to others. Only one aspect. Your personality, your wit, your intellect, your emotional connection-ability with others, your use of language and articulation, your eye contact, your body language . . . all interact to make you the "you" that others come to know.

My most sincere of advice: Always be genuine to yourself and to others.

Hair falls to the wayside of importance.

Final For Your Information tid bit: The phrase "telogen efflovium" is the clinical identifier for hair loss due to severe/sustained stress. You can Google "telogen efflovium" to learn more as to why the body's stress response and release of stress hormones (cortisol, norepinephrine) causes hair follicles to go into a resting/hybernation phase.

Sincere best wishes in your continued recovery,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : TIKIITI - 2/4/2017 8:21 PM
Thank you everyone for your advice. I am truly humbled by all the time you spent to write back in such thought out detail. In some cases, it's more time than even the people I call friends. I never in a million years thought this would happen and I am just really scared to be going through it alone. It's reassuring to hear from a community of other Sepsis survivors that can relate.

I cried a whole lot today because handfuls of my hair came out at my hair dressers salon. But I am doing better now that I re-read all your posts. Thank you again and God bless...

Posted By : (Seashell) - 2/5/2017 9:02 AM
Your hair loss is due to the stress response and release of stress hormones due to the severity of your surgery/sepsis experience. The stress hormones (cortisol, epinephrine) cause the hair follicles to go into a resting phase . . . the result is hair loss which is most pronounced in the months following the actual illness/surgery as the hair follicles once again become active and growing.

Your expression of tears is likely a release of emotions larger in magnitude than processing the loss of your hair. Your tears likely are representative of the enormity of all that you have been through psychologically in the lengthy hospitalization and multiple surgeries and protracted recovery.

Find ways to process and express feelings that you are needing to process. For me, getting outside and resuming my daily walking was an integral part of my emotional recovery. Listening to the sounds of my breath, the methodical rhythm of my feet taking steps against the ground cover, the sights of nature in abundance around me . . . walking was an integral aide to my emotional recovery.

I encourage you to connect with a hobby or avocation or interest or volunteer engagement that will give you a medium for emotional processing and recovery.

For thought . . . You were fortunate in not needing a temporary stoma and ostomy to divert your intestinal tract while your intestinal anastamosis healed. How would you have reacted to a stoma on your abdomen and the need to adapt to an ostomy pouch?

I pose the question of a stoma as a means to redefine your hair loss to be less all-consuming.

Point Being: What you are experiencing is less about your hair and a whole lot more about psychological trauma and recovery.

Use your unexpected surgery/recovery as a means to take a pause to slow the immediate world around you so that you can take time for quiet reflection and inventory of your life. Take time to explore what is most important to you in life and in life's relationships. We each have but this one life.

- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : Missrunning - 5/17/2017 1:37 PM
Hi sepsis survivor too, hair shedding 3 months post surgeries. Was wondering how much was lost for perspective and any tips on how to manage. I know there are so much worse issues we all have experienced and continue to, but I have to admit this one strikes a nerve! Thanks for any suggests.

Posted By : straydog - 5/17/2017 1:47 PM
Missrunning, we have not heard from the original poster since the above date. However, please read the response above from Seashell, there is some good info in them. Not sure if Seashell touched on this or not but every time I have had surgery, the anesthesia also caused hair loss.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 5/19/2017 6:14 PM
Loss of hair after a severe stress or injury to the body is referred to as telogen efflovium. You can go to Wikipedia to get a review of the hormonal/endocrine effects that underline the loss of hair after a serious illness, surgery, accident, et al.

Telegenic efflovium occurs in cases where the body is in a heightened state of stress. The body's stress response and release of the hormone cortisol has the effect of putting the hair follicles on a state of temporary hibernation. The hair follicles are temporarily inactive.

Typically, the first noticing of hair loss is 8-12 weeks after the onset of the serious illness, surgery, or other stressor. The hair loss is not permanent.

The hair loss begins 8-10 weeks after the stressor. The delayed effect parallels the life span/life cycle of a hair follicle (which is approximately 8-12 weeks).

Your hair will begin to grow back as the body heals from the instigating injury and the stress response lowers in intensity. Some people even report that their hair grows back thicker, stronger, and healthier.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : luv10es - 5/24/2017 5:22 PM
My daughter had Peritonitis with sepsis Jan 20-Feb 8, and is just now seeing hair loss. As a mom I am freaking out, becuase there is no reason yet on why she got peritonitis in the first place. So any new health sign and I am feeling worried again. Seeing this helps.. but I need to know one thing.. is it just thinning hair or is it 'bald' or what is happening???
Thanks everyone.

Posted By : (Seashell) - 5/24/2017 10:10 PM
No worries that your daughter will go bald. The hair loss is not that dramatic.

The loss of hair is typically experienced when showering/washing one's hair or brushingnone's hair or running one's fingers through his/her hair. The hair loss can also be seen on the pillow case when getting up in the morning.

When I experienced this, it was about 10 weeks after I suffered an acute intestinal perforation. I was washing my hair and felt as though I was holding handfuls of hair in my hands (it wasn't as much as it seemed) as well as accumulated hair sitting at the bottom of the shower drain. It really did throw me for a loop, as I had no expectation that this might occur.

I have a thick head of hair. I did not show any patches pattern baldness or of hair loss. The hair loss was not noticeable to anyone.

As quickly as it came, the hair loss stopped.

Things to help protect your hair during this phenomenon:
Use a high quality shampoo for sensitive hair or damaged or color treated hair.'

Avoid shampoos that have sodium laural sulfate as a primary ingredient.

Avoid shampoos with parabens. Parabens are chemical stabilizers added to many cosmetic products. They are known to heighten auto immune problems as well as contribute to dermatitis (inflammation of the skin)

Be gentle with your hair. Use a soft towel to pat the haIr dry after showering. Do not agressively towel dry one's hair. Use a comb/brush that promotes itself as being tangle free.

Use a quality conditioner.

Be gentle with use of the hair dryer, flat iron, curling iron. Avoid high temperature styling tools.

Be patient. The loss of hair is transient and a temporary phenomenon.

Best wishes to your daughter in her recovery, and to you as her support Mom. When the chips are down, Mom's are awesome.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : luv10es - 5/29/2017 8:44 AM
Thank you Karen, it's definitely coming out as you described, mostly showering, brushing, etc. She's handling it much better than I am. Always worried. ❤ I really appreciate your time and information. Joanie

Posted By : Maire31 - 9/17/2017 7:16 PM
Tiki and others,

I too lost fistfuls of hair exactly 3 months after my emergency cholysysectomy (gallbladder removal) January 15, 2017 and subsequent appendectomy and sepsis diagnosis January 21st. It was April 15th - Tax Day in the USA - 3 months to the day! I was also in ICU for several days then moved to a regular room. I had to have a wound vac because of dihesence (the surgical incision stitches split open!) I also had my abdomen washed out 2x because I had a pelvic abscess that would not quit! 40 days straight initially with additional admissions, a few days in May, a week in June and another week in July. Had a PICC line placed while in the hospital because my veins were destroyed and didn't get it removed until mid August! I was on IV antibiotics and antifungals for 7 months.

I was so very lucky and blessed to survive relatively unscathed in comparison to what many contend with. I began taking 10mg (not mcgs) of biotin daily and making sure to get enough protein and my hair has been growing better than ever! It's been 5 months since the hair loss and start of biotin and I've had to get my hair cut/trimmed to shape it with all the new growth. Someone named the condition in another post - telegenic effluvium - that's exactly what it is. My doctors weren't even aware of it! It's not very common, but it's not rare either.

So please don't worry, it will grow back. Ask your doctors about Biotin and protein to make sure it's okay for you and your individual condition.

I will say the one thing I am having issues with is continued pain and feeling tired often and not sure what to do about it. I did have cognitive fog but returning to work (gradually) in April definitely helped invigorate my brain and mood.

It all still feels so surreal...2017 doesn't seem real for me. I lost so much of the year. It's strange how there seem to be a few of us that went through this in January of this year. I also know others who had their gallbladders removed in January, but thankfully no sepsis for them.

Healthy wishes to all of us, cheers to things only getting better moving into 2018!


Posted By : luv10es - 9/18/2017 10:05 AM
Thank you Marie,
Gosh, my daughters experience was very similar to yours, only not as bad. I am so happy you are alive and getting through that terrible experience. She had septic shock, wash outs, abscesses, Picc Line. Here we are in September, and her hair has grown in about an inch. So its very thick at the scalp and super thin everywhere else. She is only 15 so hair is pretty important, as I guess it is to everyone!. We have good days and bad days. She was anemic after the hospital, so yes protein was super important for her and we did start Biotin and Iron.. ours is 10k per day for Biotin (2 pills). Her existing longer hairs is very course.
Thank you for your story, and here is to hoping for good hair this time next year. smile

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