22 and trying to live with chorns disease

Hi everyone my name is Candice im 22 and 12 months ago I got diagnosed with crohn's. I also have Ankylosing spondylitis which my father has. recently been told that is how I got crohns.

I'm not a person who usually struggles with what gets thrown my way, I was sick for three years and had countless doctors suggest it was appendicitis or it was all in my head. I ended up almost septic and lost 12 kilos in two weeks and had no control over my body as you would all know. and because I can't afford private health and the public system is so slow I ended up paying nearly $1000 to get a colonoscopy asap. Now 12 months on I am struggling with side effects from the drugs to keep it at bay. I'm currently on Pentasa twice a day and I take vitamins. But now I have gained nearly 20 kilos more then I was before all of this began.

I go to gym 4 days a week and try my best to eat healthy food that doesn't cause pain ( still figuring the list out ). I already had fine hair and now thats falling out and my skin is horrible, tried everything on the market to combat that and cant find a solution alot $$$ spent there with no relief.

I'm just frustrated that I cant seem to be myself anymore with always something coming against me. Im in my early 20's and just recently got engaged and this should be the time in my life to experience all there is and have no regrets. But instead I feel stuck in a cycle I cant seem to break.

Sorry if these seems so melodramatic but as a young girl my hair is falling out and I am nearly bald, on top of that my face with cystic acne is a massive problem with everything else i cant control.

What i would love is some advice and similar experience's from poeple dealing with what I am. My friends and family try their best to help but no one knows how it can feel unless you've lived through it.

Thanks for listening

Welcome to the forum Candice,
Sorry you had to join the Crohn's club. I do not have Crohn's my hubby and my oldest son do. My hubby was diagnosed at 23 just as we got engaged 20 years ago. He was put on Pentasa as well for him it was not enough to control the disease. Once we found a combo of meds/diets that worked for him things settled down.
Is Pentasa the only med you are on? Did you do a course of Prednisone as well?

Hi Jacqui,

Yes i'm only on the pentasa for my crohn's and i did a short course of Prednisone when i came out of hospital when i was diagnosed just over a year ago, i've told my specialist that my hair is falling out and she just says its stress lol. My reply is i'm not stressed about anything but the fact that my hair is falling out.

How old was your son when i was diagnosed, as my partner and i are thinking of starting a family in the near future but that is what is holding me back.

For about a year i was suffering really badly with my tummy horrible cramps and really bad pain. i eventually got taken in to hospital and they came to the conclusion it was pelvic inflamitary disease and they said it would go away. It never did the pains got worse the diaroreah came and i lost lots of weight. My gp finally refferd me to a gastroentologist and i had a colonoscopy and endoscopy. straight away from what he saw he said i had crohns disease. my older sister has it so i pushed to be refered as i know how bad it can be. She has had two bowel ressections, a stoma for a year and had it rejoined. She is now in remission. so from seeing my sister i recognised the symptoms.
ive been in hospital about 7 times in the past 2 years having bad flare ups. also i had a little boy nearly a year ago too. Ive just recently had a small bowel resection. I feel like a new person. No pain or feeling ill. Im now back in work after 4 weeks. I hope that im in remission now and it never comes back . I'm on azaphioprine at the moment and this is making my hair fall out xxx

Candice,
He was 10 when he was diagnosed, one thing to keep in mind is chances are greater your child will not have Crohn's. We also have another child who does not have Crohn's.
Have you had a fecal calprotectin test? Blood tests lately? Possibly still inflammation going on and Pentasa is not enough to control it.
You might also think about having your vitamin levels checked specifically Vitamin B12 and Vitamin D, these are low in many Crohnies and I believe B12 deficiency can cause hair loss.

Annimaz - Glad you are feeling well and your baby boy is absolutely adorable!

hey bud, sorry your feeling crappy, im from brassy too, 24 yrs old, all I can say is pentasa probs isn't doing much, the lovely ppl here have given you great advice, ask your GI for a cal protectin test I think, depending on the results maybe its time to change meds... (I think it would be anyways, pentasa by itself isn't very strong as pentasa only works topically and crohns is transmural). hope you feel better soon.

My hair was falling out too and i started taking biotin soft gels. They melt so they get absorbed. I also take B12 and complex soft gels everyday and also B12 injections every month(Dr. can prescribe). I use Garnier Fruitiss Fallfight shampoo and conditioner and other brands are coming out with similar so your hair doesn't fall out. Mine seems to have stopped now, thank God.Be very gentle on your hair especially when wet. That is when it is most vulnerable. Comb gently or brush with antitangle type. If you blow dry ,be gentle and don't pull up or out on your hair. Everything you can do to keep it from falling out helps. Hope this helps you hon! Try some old fashioned "Witch hazel" for your face and see if it helps. It helps when I get those nasty cyst like pimples.

Hi Candice! I'm so so sorry you're going thru so much. It is a lot to take in with the disease and what the side effects of meds can do to not only your appearance but emotionally too. When I was 22 I already had two kids and been living with Crohns for 7 yrs and was married. I was a fighter I tried my hardest to be the best mom/wife I could be. But seeing my hair fall out and swollen eyes and skin rashes plus my episodes w/ crohns to have to go to work like that and feeling miserable and exhausted....I cried!! I tried to talk to my drs bout how I looked but they told me to stop looking at how I appear but rather look at it in the long run. For months I felt like a monster. But don't give up. I wish I was on this support group so much sooner. Bc I hear some great advise that I wish I had at your age. I'm 33 now and cont to learn new meds n diets on here. Gives me hope. Hope it helps you feel more comfortable talking bout def not alone. I'm sure you're a strong woman and not play to be the victim. I certainly wish you all the best to get bk on track.

On a s/n: Congrats on your engagement!

Hi! I am 21, so a similar age, and was diagnosed when I was 16. I am blogging about my journey with Crohn's, which might be helpful/nice for you to read through. It is always great to know people who are going through the same thing as you.

www.giftofthegab1.blogspot.co.uk

I have struggled with a lot in the past few days both with the physical and emotional side of having Crohns. My hair has also fallen out and thinned a lot. So i really do know how tough it can be.
Keep on smiling and try to stay positive, i know its tough but things will get better.
Its very normal to have ups and downs with this disease.

xxx

Crohnzie Girl, thanks so much for the advise, i have a friend with crohn's and she has had resection 6 months ago and tends to be in more pain than i, but she hasn't had the same problems as i and she has lovely long thick hair. I already and thin fine hair so it is becoming more and more noticable that i can't bare to leave the house at times. I know that it isnt as horrible as having a flare but it tends to have the same impacted. How long did it take for you to get it under control??? :smile:

723crossroads, Omg someone has some answers lol, where do i get biotin soft gels? I will definitely ask my Gp for the B12 injections. xx :smile:

Joshuaaa, Just saw my GI two weeks ago and dont go back until August, she just orders the routine blood work and fecal sample. wont know more until then but i've been on the Pentasa for 14 months hoping to change but worried that if i do and don't respond to the new meds i might flare badly. Thanks ill take it on board when i see her. :ysmile:

Jmrogers4, I have just done those tests don't go back until August, i will be asking my Gp for the B12 injection and hopefully fingers crossed that will help.

How do you cope with two in the household i know my partner has a rough go of it when i was in a bad flare. :smile:

GEC, omg i don't even know where to begin, i've just read most of your blog. I don't know what to say :eek2: You're stronger than i'll ever be. I will probably be a life reader of your blog. Thanks so much for writing to me and you are dealing with this with such poise :smile:

Hey Candice, I think jmrogers4 has the better advise than mine. As, a matter of fact, I'm gonna look into it myself. Lol I don't recommend you do what I did. I was on Humira and 6mp. After 6 wks I developed medically induced Lupus, I told the drs I quit taking ALL meds. He was very upset w me. Lol. I was a nut!! Thankfully, I kept trying to eat things I knew wouldn't affect my belly. Did ok on my own. My hair alil fuller. After my 3rd baby my Crohns came bk full blown. Another Dr prescribed Cimzia and Aazathioprine. My hair still very delicate. I'm very careful in the shower I don't comb it I jus let the conditioner sit and when I brush my hair I do it in sections. Good Luck and keep us posted if your taking the vitamins!

candicecrowhurst said:

723crossroads, Omg someone has some answers lol, where do i get biotin soft gels? I will definitely ask my Gp for the B12 injections. xx :smile:

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I buy them at Walmart where the vitamin section is located. I take two a day. Also there is biotin in my B12 complex gel I take. It really did make a difference to me.

GEC said:

Hi! I am 21, so a similar age, and was diagnosed when I was 16. I am blogging about my journey with Crohn's, which might be helpful/nice for you to read through. It is always great to know people who are going through the same thing as you.

www.giftofthegab1.blogspot.co.uk

I have struggled with a lot in the past few days both with the physical and emotional side of having Crohns. My hair has also fallen out and thinned a lot. So i really do know how tough it can be.
Keep on smiling and try to stay positive, i know its tough but things will get better.
Its very normal to have ups and downs with this disease.

xxx

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Read some of your blog and really got a kick out of you and your quirky sense of humor! But your passion for making life better is really to your advantage! I am in awe of you and your positive attitude. I am sure you are blessing many people with your blog who also have a stoma.
I will continue to read your blog and hope and pray for the best for you!:ghug:

Hi! I'm so sorry you're going through this! I was diagnosed in Feb. I had an emergency resection and I was septic...I now have a stoma named Ginger. I too am experiencing the hair loss. I have fine hair, but it was thick and long. It's starting to come back in and I have found vitamins with iron helpful. It's really helpful that I have a great family and friends and any awesome hubby. When I struggle with it, I think about how lucky I am to still be in this world! Things were really bad in Feb, so I feel blessed to be here. your hair will grow back in time. In the meantime, I use fun head bands to "dress up" and make me feel more like a girl. Good luck to you!! It will get better!