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Posted 1/25/2011 1:22 AM (GMT 0)
First off... I feel confused... I was first diagnosed with Crohn's now they are telling me colitis. I had three sections inflammed and now just one .. which i'm happy about.. but its kinda like I identified my self so much with this IBD..

 Plus, this 6 mp is making me lose so much hair. My doc lowered the amount to 50 mg ( but i'm still on a double dose or remicade only once every two months)... I've been on(6mp) it since early NOV. and lowered it three days ago.She said it will take three weeks to flush out.

My question is, has anyone lost hair and grew it back,  if so how long did it take?

It does grow back eventually, right?

Or am I stuck like this  (the 6mp does control my symptoms so I dont' wanna get off it completely)?

And,Is there anything anyone is taking to help hair loss? any special vitamins, food, shampoo?

I'm just getting depressed.. gaining weight and losing hair ... its not a cute look!!!

Posted 1/25/2011 6:11 AM (GMT 0)
Sending you a great big hug, DD003. I won't answer your questions about 6mp and hair loss because there are others on this forum who know much, much, more about that than I do, but I would encourage you to simply give it time, and do expect that your hair will grow back eventually.

This disease does take a terrible toll on our bodies and self-esteem, and between the change in diagnosis and the hair loss and the weight gain, I can understand why you'd be feeling so miserable.

My Mum had cancer and we went to a workshop on how to deal with hair loss etc, and there are ways to help contend with it and still look nice. You might like to buy some scarves and experiment with different ways of tying them (Jewish fashion websites sometimes have great instructions on this), and it's sometimes possible to find wigs in specialist haircare shops.

The weight is frustrating, I know, but on the plus side, it does give you an opportunity to buy and experiment with some new clothes. I know that only helps a bit, though: it's hard...

Hang in there.

Ivy.
Posted 1/25/2011 6:46 AM (GMT 0)
I can completely relate to the depression and frustration of a moving target for a diagnosis. I was first diagnosed as UC. I was like you... it's not that I *liked* having UC, but I'd finally felt like I'd "accepted" it. Then... one day the GI says, "We still don't know if you have UC or Crohn's!" What!? That was about the time I started showing skip patterns in the inflammation (mostly because some of it healed) and also a fissure. Later a fistula made it a clear diagnosis. I just wanted to "know" something. I hated being tossed back and forth in my mind which disease I have.

Like Ivy says, the disease takes a big toll on our confidence and esteem. We've always looked in the mirror and seen a certain person. We've defined ourselves by things in our lives that may no longer be things we can do... Having to give up hobbies is very difficult too. The meds make our cheeks puff out, our bodies change and our hair fall out. All my guy friends would tease me that "at least I knew my hair would grow back!" And... it does grow back. I wasn't on 6mp long enough for hair loss, but I lost about half my hair volume to steroids. (long term use) It's back now that I've been off for a year. It does take a while to grow back, sadly, but it comes back. All of the sudden you'll start to see baby hairs popping up around your partline. Finally they grow and your hair thickens over time.

Hang in there DD003... Hugs!
Posted 1/25/2011 1:33 PM (GMT 0)
I don't know about hair loss with 6mp, but when I was first diagnosed I was extremely anemic so I lost a lot of hair, I had balding spots almost, and I've had a thick head of hair. It has grown back and I have a healthy head of hair, I probably would say it took about a year for it all to grow back, but once I my blood count levels for back up and I was on a healthy tract with the right medicine I noticed my hair growing back pretty much right away.

I used a Full & Thick shampoo and conditioner and Hair and Skin Vitamin. I think those really helped.

Best of luck and I hope you get some answers soon!
Posted 1/25/2011 2:31 PM (GMT 0)
I take Asacol which causes alot of hair shedding. I am using a shampoo I got in Mexico called Follicure and added some Folic Acid into my med mix and the hair shedding has slowed way down. I really think the Folic Acid is doing the most good. Give it a shot, it can't hurt. Hugs!
Posted 1/25/2011 2:32 PM (GMT 0)
DD003- I know exactly what you are feeling! My hair used to be very long (down to my waist), thick and healthy but then I lost 75% of my hair due to medications, anemia and severe disease. I have gained about 45 lbs thanks to steroids and inactivity, but there is hope! You hair should grow back! After I lost my hair, I started taking Folic Acid and Biotin and that helped me. It took about a year for my hair to grow to my shoulders but it is as thick as it used to be before I lost it. I also switched to an organic diet. This helped my symptoms. As for depression, I recently went to my GP who tested my Vitamin D and I was very low so I have been on high dose Vitamin D and the depression is lifting. Maybe you can have that checked since us IBDers tend to have low level of vitamin D. As for the weight gain, I want to lose weight and stick with a good diet but for right now, I am just happy to be alive and still have my colon! That is my next hurdle! Best of luck!
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