New Girl

Hello, I just found this site and was so thankful that finally some others I can talk to about Crohn's Disease which I have had since Dec 2008. I am 45 years old and nobody in my family has ever had any problems relating to IBS or anything like this period. I was first diagnosed with Ulcerative Colitis in Dec 2006 and then two years later to the exact date, I was diagnosed with what the doctor said was a severe case of Crohn's Disease. My life has been miserable to say the least. I have been on more medicines than I can actually remember. I have not had surgery, nor do I want surgery. I would just like to know if am I missing something maybe a certain diet or certain medicine I am not aware of.
The Remicade has made my hair look like a Halloween witch wig. Fuzzy, dry. Basically, it looks like I stuck my finger in an electrical socket and I always have to wear it in a ponytail of wear a hat which I absolutely hate, but what do you do? I would have never dreamed that medicine could do this to you.
I will stop short here. Just wanted to introduce myself to everybody.

Hi there, I hope the Remicade working for you! For your hair, I use a primrose capsule in my conditioner and helps get rid of the frizz and residue in your hair as well as medications, that could help.

I am allergic to Remicade but Pred is nasty to my hair too. The age thing dont help either . My family is heavily IBD related and therefore very hereditary. Check out the low residue diet. Avoid dairy, hard cheddar cheese old style seems to be ok at least for me. Most people avoid fibrous foods too. I rarely eat beef. Hope you are taking enough calcium and vitamin D for yourself. Welcome to a great community. Hope you stick around and join us!

Hi there, thanks so much for the info. I did not know about Primrose, but will definately get some and try it. I take a multi vitamin, also B, calcium, L-Glutamine, Iron, but I don't take D, but I will now that I know. I appreciate the help so much.
Thanks

Hello SOS, welcome!! There are very few with more experience than Penny, so I'll just say welcome to the forum!! Good luck!!

Hi sickofsick and :welcome:

Wow, freaky about the diagnosis days. I understand about you not wanting surgery but I gotta say it was a godsend for my daughter, gave her her life back in more ways than one, so it may not be so bad if it ever comes to that. Heaps of info and support here for you so please stick around as you will be a most welcome addition. Good luck and welcome aboard!

Take care,
Dusty

sickofsick said:

Hi there, thanks so much for the info. I did not know about Primrose, but will definately get some and try it. I take a multi vitamin, also B, calcium, L-Glutamine, Iron, but I don't take D, but I will now that I know. I appreciate the help so much.
Thanks

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Vitamin D3 is probably the most important Vitamin you can take!! Most people think they got Crohns because they were Vitamin D deficient.

Hi SOS
and welcome

Have you tried the Specific Carb Diet? My friend with UC has had great success with it.
Meds have changed my hair too, I wake up looking like someone has permed it in the night, all curly and frizz bombed!
glad you found us, lots of friends here for you, understanding and support.
lotsa luv
Joan xxx

Astra101 said:

Hi SOS
and welcome

Have you tried the Specific Carb Diet? My friend with UC has had great success with it.
Meds have changed my hair too, I wake up looking like someone has permed it in the night, all curly and frizz bombed!
glad you found us, lots of friends here for you, understanding and support.
lotsa luv
Joan xxx

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Thanks for the welcome:>) I don't know about the carb diet. Could you possibly get some info for me on that? I would greatly appreciate it. Have you found anything that will help your hair. I'm going nuts with mine. I can't do anything at all with it. I'm ready to shave my head and wear a wig.

http://www.crohnsforum.com/wiki/Specific-carbohydrate-diet

Here you go, here's a thread about spec carb diet.

And have a look at these products that I use for my hair too!

http://www.johnfrieda.com/products/product_family.asp?productLine=frizz_ease

xxxxxx

Hi New Girl,
Welcome aboard! I've also had problems as of late with my hair. It has always been very long, or for a least for no less than the past 10yrs. I'm taking Sulfasalazine every 6hours for at least the next year, and what seems like a plethora of others.. (ok, it's quite a few). Anywho, my hair has gotten worse over the past month. My ends are breaking, and my hair is so flippin dry! I wash my hair and fix it every morning for work. And have noticed my hair is super duper tangled all the time! So frustrating! <-- especially since my hair keeps breaking every time i brush it.

Well SOS, I really wanted to say hello.. and best wishes! This forum is wonderful! Great people! Loads of info! And PS... if you find some miracle hair product that works for you please let me know!

Hey girlygirl

How about you ask to change to mesalazine! Asacol, Lialda or Pentasa, these are sulfa free, and less side effects.
xxx

Thanks Joan! I will be sure to ask! Had an apt w my Primary Care Phys today. She's ordered more labs, gave me a b12 (thank goodness!), and I asked her about taking hair skin and nail vitamins for the hair breakage. She said it wouldn't matter and its a normal side effect of the sulfasalazine. Get to go and pick up a few more rx's. Yay. And seeing the surgeon for another follow-up tomorrow. But - my PCP did refer me to see a GI specialist in addition to my colorectal surgeon. Super duper YAY! It feels like forever to know somethings goin on in your body but seems like forever to get everyone in line to come up with definative answers! Ah, and the chest pain I've been having could be a diffect effect from something going on in my intsetines. She mentioned transferance? Or something like that. To feel pain in one place that originates from another.

There seems like there is no end to this madness somedays, but I make it. And I love all you guys abd girls so much! It takes a strong persin ti handle this all in all!

Welcome SOS. This is a crazy disease that's for sure. Sounds like your on the right track with seeing all the docs. I wish you the best. Hang in there and keep us posted on your progress.

Astra101 said:

Hey girlygirl

How about you ask to change to mesalazine! Asacol, Lialda or Pentasa, these are sulfa free, and less side effects.
xxx

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Hi Joan,
The Surgeon did give me the Apriso to take instead of the sulfasalazine, said it was a more pure form that didn't contain the sulfa which is what causes a lot of the side effects!
Thank you so much! (ah, the best part - 4pills 1x/day, so no more 500mg Sulfasalazine every 6 hours) Yippee

Hey Girly

that's great! hope you're gonna be free from side effects!
xxx