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Era
Regular Member


Date Joined Apr 2006
Total Posts : 85
   Posted 9/4/2007 11:07 PM (GMT -7)   
I was beginning to understand this disease, something else pops up.  I was recently in the hospital and put on prednisone for flare-up.  I have tapered off the steroids (by the way, I will NEVER again take them) and all of my symptoms have come back with a vengeance.  I'm used to the D, the cramps, the accidents, not eating for days, throwing up, lack of energy...but, I've started to lose my hair.  I'm a 25 yr old woman and not overreacting.  I run my fingers through my hair and can pull out handfuls of it afterwards.  I would go back to the hospital, but I don't have insurance...
Nobody has ever mentioned to me that this could happen...is this being caused by the Crohn's?  Has it happened to anyone else?  What can I do about it???  Please help confused
 
Thank you guys!  I hope everyone's doing well!
 
Sarah

mrs.atohame
New Member


Date Joined Jul 2007
Total Posts : 9
   Posted 9/5/2007 2:49 AM (GMT -7)   

dear Era:

seem that you ignoring the treatment and you are surprising of all these problems!

you must think again about your choices to get well..

.(is this being caused by the Crohn's?  Has it happened to anyone else? )
YES.
 i hope you will get well soon ..keep in touch and tell me what's new.

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/5/2007 2:56 AM (GMT -7)   
Certain meds can cause this including pred and pentasa. I would definitly get a GI and possible get some sort of health insurance if at all possible. Your health is more important than anything else and money should not be an issue think of all of the homeless people that get treated for things as well as others with no insurance.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/5/2007 3:18 AM (GMT -7)   
Hi Yes I have had hair lost and without food or ensure not sure if it would of grown back in my hair lost began before the pred. I had low protien,potassium and B12 so that would not have helped keep hair on my head. You need to get your CD under better control with perhaps other meds that will help ,you not eating for days is not good for the body.Let us know what you do to get things better contolled.I used to do that before my DX but now can eat and feel better. lol gail

Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 9/5/2007 9:20 AM (GMT -7)   
It seems that hair loss is a major issue with many of us. It is quite common but don't worry, it's only temporary and I've never heard of anyone losing all of theirs. I only loss about 1/3 but it's growing in nicely now.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/5/2007 10:52 AM (GMT -7)   
Yes hair loss can be caused by meds, but even without meds it can occur mainly because our bodies are not able to absorb the nutrition we need, there fore effecting us from head to toe....that's another reason why it's so important to eat as healthy as possible, since the un-natural foods (processed and fast-foods) have little to no nutritional value, that too will affect our bodies...in a negative way.


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Era
Regular Member


Date Joined Apr 2006
Total Posts : 85
   Posted 9/5/2007 2:29 PM (GMT -7)   
I'm a little surprised at a few of the responses. I'm not ignoring treatment or in denial of my Crohn's. I'm broke and at a loss for what to do. I don't understand the point of the steroids as all of my symptoms came back and nothing was resolved by it. I need help and don't know what to do. How much debt can i incur? And another hospital stay would mean that I would lose my apartment, then I could really be on the level with all of the homeless people in D.C....
Sorry if I seem short tempered, but my hands are starting to hurt from clinging to the end of this rope...

Thanks for letting me vent!
Sarah

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 9/5/2007 2:39 PM (GMT -7)   
Hi Sarah,

Sorry you are having such a hard time. As others have mentioned hair loss can occur for a lot of reasons-- poor nutrition (or just not obsorbing the good things you eat) and some meds.

I know you never want to take pred again and I understand the feeling, but often it is the only thing that works in the short term. Plus since it is generic it is one of the cheaper options too. If I were you, I'd consider that again just to get through life and then when you can get on some form of insurance look into a different treatment that will allow you to stay healthy longterm. Usually you have to start with pred to get relief and then start something like 6mp or remicade to maintain your health. You're right, if you just start pred and then taper w/o maintenance meds you just get sick again.

I don't think that anyone was trying to hurt your feelings, but it is hard to offer help when you can't afford treatment and don't want to take the affordable drug that is out there. But really sometimes posting helps just to let you vent even if the rest of us can't really help.

I hope you can find something that will work to keep you out of the hospital (and in your apartment). Don't worry about the hair thing, it won't last. Focus on getting your health in control and that will take care of itself.

Good luck.
Currently in remission!

Post Edited (inflamed) : 9/5/2007 3:43:49 PM (GMT-6)


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/5/2007 6:42 PM (GMT -7)   
Hi Era:

Medication is not the only cause of hair loss. Hair loss can sometimes happen in response to extreme physical stress (serious flare, prolonged and severe dietary deficiencies, surgery etc.

I am not clear whether you have stopped steroids against medical advice or as a planned tapering process approved by your health care providers. If your withdrawal from steroids is abrupt it can also contribute to hair loss (and more serious effects of adrenal insufficiency).

I understand your reluctance to take steroids. They do come with often distressing side-effects. Unfortunately, they are also a very effective tool for getting a flare up under control. I hope you can find a way to access the health care you so obviously need. Perhpas you could reach out to public agencies for assistance in obtaining services and medications?
Belleenstein:

30+ years living with Crohn's.


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 9/5/2007 11:08 PM (GMT -7)   
Honey
You are very young to have to be dealing with CD, and hair loss, and losing your apartment, and worrying about being homeless. Other than Healing well....do you have any kind of support, family , friends....someone who can maybe help you through some of these extremely difficult times. Do you belong to a church group or youth group. Is there any free counseling in your area. Sometimes it helps to just vent, and cry and get it all out.....and sometimes when you are doing all that....a solution pops up. Prayer and meditation help also if you are inclined to that.
Meanwhile....hang in there. We at Healing Well are praying for you....Come visit often and let us know how you are doing. Know one should have to go through this alone....and believe me , you aren't.

Love and prayers

Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/5/2007 11:53 PM (GMT -7)   
Hi Sarah Just wodering if the drug companies would help if you cain't afford meds. It must be very hard for you with so much on your mind and all the symnptoms going on now .Hope things get better for you.We"re here for you hoping you have some good family support.lol gail

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/6/2007 10:27 AM (GMT -7)   
Hi Sarah I don't have any more answers than already provided. But wanted to send you ((BIG HUGS))). I think gacrohns has a good suggestion. Maybe you can go on Montel Williams site. He is a spokesman for some Prescription assistance program. (sorry can't think of the name). Maybe you could get some help to get some different meds to try. God Bless!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/6/2007 10:29 AM (GMT -7)   
Also many have gotten relief for the hairloss by taking Folic Acid or Biotin. They are over the counter and not expensive.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/6/2007 12:17 PM (GMT -7)   
Sarah :)

I hope you find relief in all areas soon, reading about your dilema sure makes me greatful for living in Canada, it's not perfect but our health care system certainly makes it alot easier then what americans have to deal with, I couldn't imagine having to pay for a hospital stay, keeping in mind, out government has been getting some funny ideas about private health care which scares the heck out of us being used to public health care so I hope it doesn't turn into the same situation like what you have to deal with.

I hope you find relief soon!

Just a thought, have you considered trying natural therapies? I know for me it was my only choice because I'm either allergic or non-responsive to traditional oral RX, I find it alot cheaper too...here's what I use:

Bee propolis (don't use if you're allergic to bees), it's a natural anti-inflammatory

Omegas 3-6-9, also a natural anti-inflammatory

Prodiem stool bulker (fibre therarpy similar to metamucil)

Probiotics (one called Primadophilus Reuteri made by natures way

Vitamins B12, A and C-Calcium Ascorbate

I buy pretty much everything from Purtians pride (bee propolis, vitamins A and C and the Omegas)

I buy the Prodiem from walmart and the Probiotics from a health food store.

I've found quite a bit of relief using this combination, along with a healthy diet and regular exercise.
 
ONE OTHER THING, check into canadian pharmacy online, alot of americans can get their RX this way for much cheaper from what I've heard.

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)

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