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New Member

Date Joined Jan 2010
Total Posts : 5
   Posted 1/26/2010 1:31 AM (GMT -6)   
I'm new to the forums. I figured I'd make an account here so I can get the answers I'm looking for about Crohn's Disease, instead of running in to dead ends all day using search engines! And, of course, to connect with others who have a lot in common :)

My name is Alex, and I'm 20 years old! I'm a nice guy from Michigan :D

Well, I guess I'll start with my first question and a little about myself!

I have this major problem at the moment, and it's driving me nuts! Hair loss!

I've been losing it all over, and it's growing back ever so thin and slowly.

I started experiencing Crohn's symptoms Mid-2007 at age 18, and went on for about 6 months without visiting the doctor. The symptoms became worse and worse, with extreme weight loss, fatigue, extreme pain, and all of the other nasty things associated with undiagnosed Crohn's Disease. In January 2008, I finally decided to visit a gastrointerologist. I was diagnosed with Crohn's 2 days later after a colonoscopy and endoscopy. After being diagnosed, I finally felt optimism, for myself and my future. I began a regiment of 60MG a day Prednisone, and 2400MG a day Asacol. I kept taking both medications for about 10 months, tapering down about 5MG every few weeks of Prednisone, and keeping my Asacol intake the same.

I did experience the weight gain, joint pain, headaches, moonface, etc. associated with Prednisone. But I felt great! After 10 months, I decided to stop taking both medications completely. By now, it was November 2008. I started to get back in shape, take care of myself a little better, and I've had no problems since. Well, no stomach pain, at least.

After stopping the meds, I began to lose my hair. Not very quickly, at first, but it was still falling out. I started eating healty, and exercising a lot. I lost all of the water weight within 8 months, and I was very happy about that, but my hair wouldn't stop falling out! The end of the Summer of 2009, I had lost a lot of my hair line, which was very discouraging. By now, I had been off of both medications for about 8 months. I was extremely happy to have no symptoms of Crohn's, and to hear that it was currently in remission. My hair loss isn't natural, at least, I don't think it is. My family has no history of MPB, and my siblings and family members my age have beautiful hair! I'm the only one losing it.

Starting in December of 2009, one year after the medications, I started to look at what I was eating and how I was treating my body. I treat my body very well, and I eat a healthy diet. The hair, it just won't stop falling out and shedding, and the cold weather doesn't help. Dry scalp =/

I've tried hair oil treatments, water washing, all sorts of stuff, but none of it seems to make a difference. It's slowly falling out, more and more each day. It grows back, but very slowly and thin. A lot of the time, the thin hair will fall out (about 1/4 of an inch) and grow back over a month, and repeat. I'm beginning to lose hope for my hair. So, it's been about a year and two months since I took Prednisone or Asacol.

I'm beginning to form a conclusion as to why I'm losing my hair, and this is what I think.

The Prednisone and/or Asacol was helping my body absorb the proper nutrients required for healthy hair growth. Now that I'm off of my medication, my body isn't absorbing the proper nutrients, and my hair is being effected. I'm just unsure why it's still falling out, more than a year after I stopped taking the meds. Is there something I'm missing? Maybe I should keep taking the Asacol?

Another theory is that the Prednisone is still lurking about, in my system, causing weird side-effects. I doubt this, but it's still a theory.

I've read a lot of hopeful stories about people growing back their beautiful, thick hair. I want mine back, and I know it will grow back because it keeps growing back and falling out again on the front part of my scalp. The back and sides are unaffected.

I don't know what else to put! I've basically explained my entire problem, and my Crohn's experience above. I'm not sure if it's the Crohn's that's causing all of my problems! I definitely think that's what it is.

Thanks for listening, and I greatly appreciate your input!

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 1/26/2010 9:52 AM (GMT -6)   
Hi Alex...welcome to the board...sorry you have to be here though! Sounds like you've done alot of research and have a good handle on your diet!

First, I'm a little concerned that you have chosen to stop taken your Asacol, however, some do choose to do so. None of us like the drugs and for some it is just not an option. Maintenance drugs such as your Asacol are important to continue to keep the level of inflammation under check in your body on a consistent basis. While you are in remission (Yeh!), the Asacol is a vital part of keeping you there! I myself only rely on the predinose as a last ditch effort when I just can't bring my symptoms under control. Usually, when I get to that point it's a given for me anyway.

As to your hair loss...many a patient has experienced this. Maybe someone will post better information than mine. However, I had extreme hair loss after my first flare. Much like you I was on high doses of pred. My gastro said alot of people think it is the drugs, however, what happens is that the body is under such stress/trauma that the hair folicles actually die. Not to fret...you get the healthy ones back in time "once everything is under control". Have you ever met a young person with a whitish/grey streak in their normally dark hair? This is what has happened to them also. I actually emptied the shower drain for "one" shower and took the gastro a ziplock bag of hair and asked her "what heck is this!" There are vitamins/supplements that you can get over the counter such as Biotin (check with your pharmacist on this as I think I'm telling you the right one). And yes, it is possible that you are not absorbing what you need. Some have even resorted to Rogaine with success. Anytime I have a variation in skin/hair/joint issues these are ,at least for me, a reminder that something is not quite on par and I need to make adjustsments either to my diet/rest/supplements and the like. Quite often this happens even when I think I "feel" fine. Only YOU know your body and what it responds best too. This takes time and alot of self-awareness. Which I might add most Crohnnies in general learn the hard way to do this. Good luck to you and check back often!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones, Carpel Tunnel & POST-menopausal (Hurray)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 1/26/2010 10:58 AM (GMT -6)   
First off with Crohns Disease itself you will have hairloss just because of all the vitamins and minerals we loose. But....I agree you need to get back onto at least the Asacol. Broomhilda is right, that the med is what will keep your remission going. I am currently in remission and take only Asacol as my maintainence med. I once thought I didn't need to take meds anymore either, did enjoy a long remission, but because I did not take my maintainence med I was having microscopic level damage being done and I didn't even know it was occuring until I completely obstructed and had to have emergency surgery. Very traumatic event for me, one I would like you to avoid. You can also add in some additional Folic Acid and if you can tolerate it some Biotin too. That will help to slow the hairloss.

Welcome to Healingwell, and we look forward to hearing more from you.

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 1/26/2010 11:12 AM (GMT -6)   
Alex. you have been given the best advise from Broomhilda & Nanners just wanted to say hi welcome aboard this great forum!!! Bev x :-)
Diagnosed with crohns at 13 now 43
Reversal of temp stoma Postponed till ???????
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

" I may not be there yet, but I'm closer than I was yesterday."

New Member

Date Joined Jan 2010
Total Posts : 5
   Posted 1/26/2010 2:27 PM (GMT -6)   
Thank you very much for the advice and kind welcomes! I'm glad to be here, and glad to meet you all!

Have a good day :)

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 1/26/2010 6:36 PM (GMT -6)   
just wanted to welcome you to the forum, you've heard great advice and I hope you return to a maint. med to keep you in remission.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Veteran Member

Date Joined Apr 2006
Total Posts : 1884
   Posted 1/26/2010 6:53 PM (GMT -6)   
If you suspect Crohn's is still active, you can have a blood test done and check for CRP and ESR (ESR is also known as "sed rate'). If either or both of these are high, then it would indicate ongoing inflammation. ANd of course the need for medication. Even if both are not high, there could be inflammation...the only way to know, for sure, would be a colonoscopy.
You can your levels of key vitamins and minerals checked via a blood test. Many Crohn's patients are deficient in B12, vitamin D, iron, and zinc.
Also, you could be low in folic acid, which would cause hair loss...you can try taking 400-800 mcg folate daily and see whether it helps.   
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 

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