POSTERBOY for Crohn's Disease looking for insight

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Friars4
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/28/2009 9:03 PM (GMT -7)   
Hello,
 
I am seventeen years old and was diagnosed with Crohns disease in September of 2007. It began with deep soars inside of my mouth and diarhea up to 6 times a day for about three weeks until i went to a local GI, had a colonoscopy, and was told i had  Crohn's. My life has not been the same since. I was an extremely competative soccer player and every dream I had of playing soccer in college was shot down when i lost thirty pounds in the beginning of my sophmore year (went from 155 to 125) and was never the same. My strength was gone and my Crohn's consumed my life. I would have never thought it could have gotten any worse. After being taken to some of the so called "best doctors in New York City" i was given a drug i had never heard of called Prednisone(Dec07-March08). My symptoms improved while i was slapped with 60miligrams a day for the time being but as time went on and as i slowly reduced the amount of prednisone i then developed a perianal abcess which after being drained turned into a fistula. Throughout this time i was put on drugs called 6mp,asacol,metronidazole (Flagyl), (Cipro), and entocort. None of which helped me attain any sort of remission.
In about April of 2008 I had a ceton put in to drain my first fistula and still had diarhea (3-10 times a day), mouth sores that prevented
me from being able to even eat/swallow, and a fistula that drained constantly and required me to wear pads inside my pants that
help maintain the constant infection/blood coming from my perianal fistula. When the ceton seemed to be helping the fistula and all
it seemed to be draining less and less, i developed a second fistula (August08) and was then told i would be put on remicade. My first
dose was (Sept 08) and at the time remicade seemed like the miracle drug. First ceton was taken out and the first fistula healed and
the second fistula seemed a bit better. But after the initial 5 good weeks of feeling good, each infusion of remicade lasted shorter
and shorter sometimes 3 weeks and sometimes 4 weeks. Overall i would get a few good weeks and then i was back going to the
bathroom and being sick for another 3 weeks till my next infusion. My doctor kept increasing the medicene and he simply said that
my body just eats up the medicene. I didnt even build up resistance to the remicade!Now its July09 and i am about to switch to Humira and i am
nervous not only bc of the side effects but also bc this is kind of like the last straw. I havent heard of anything higher than humira
and it seems nothing will ever defeat this disease. My life is not normal and i am finding myself upset and angry more and more. i
now have a ceton in the second fistula which wont seem to go away and i am still always flaring up with soars,constant diarhea,
and just feeling horrible. I would just like to hear some stories or be given any advice because im starting to lose all hope. I cannot
play soccer or do the normal things a guy in high school should be able to do and its just depressing. If anyone is on humira or any of
these i would love to hear your story and i really would appreciate any tips that may have helped you. Thank you very much!
 
*edited your title as it caused the forum to be wider*

Post Edited By Moderator (Nanners) : 7/29/2009 7:28:30 AM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/29/2009 12:41 AM (GMT -7)   
First of all, a great big hug and a very warm welcome to you. It sounds as if you're having a horrible time there, and I hope you'll be able to find a lot of support and friendship on this forum as you search for a path to better health.

I always think that it's the sporty people who have a harder time adjusting to chronic illness, as they can lose a lot of their dreams and hobbies. I'm not surprised that you're finding things so hard right now, and hope that we'll be able to help you construct a new sense of identity, and find some different hobbies and interests to sustain you through this hard time.

It sounds to me as if you have a good doctor who is following every mainstream treatment strategy available. Please don't despair and think that Humira is your last medical option. There's another drug called Cimzia - quite similar to Humira and Remicade - that you can try if the Humira fails, and there are a few other promising drugs in trial & development.

You might like to click on the two links in my signature and do some reading about your various medications, and some other diet & nutritional therapies that might be available to you. Again, I hope this gives you some assurance that you are *not* at the end of the road yet, though I do know how discouraging it is to keep trying and failing so many different treatments.

How are you coping with school, and "life" at the moment? Do you have somebody - other than us here, I mean - that you can talk to about the anger and other emotions that you're feeling?

It's really lovely to meet you,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 7/29/2009 12:48 AM (GMT -7)   
friars4.. dude, you can still do all the things you want. just dont let it consume your life. lots of us havent.. im still kicking and so are most of us. sure its a hard trudge sometimes , but it aint all bad. (ok it is) but not if you dont believe it! check out my website below for some crohns insight. randy
randynoguts 



     http://www.geocities.com/randynogutsweb/


littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 7/29/2009 3:24 AM (GMT -7)   
Hi Friars 4

Welcome to the site. I am sorry to hear how difficult things are for you at the moment, it must be very difficult when suddenly you cannot play sport. I never been sporty as such but I did used to work out a lot and that had to stop. I am on Remicade and it helped give me my life back to some extent. I think one of the hardest thing you have to do when you have crohns is to adjust your life to take the crohns into account. Most of us on this site will have done that. You will find other things that are more within your scope. And as Randy says keep fighting.
Diagnosed 2005.
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 7/29/2009 5:02 AM (GMT -7)   
You might consider enteral nutrition (special liquid diet used to induce remission), that is described in some of the threads to which Ivy provided the link. It can sometimes work when nothing else will, and it is excellent for weight gain (also for growth, if you are not yet at your full anticipated height). Best of luck.

Friars4
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/29/2009 6:22 AM (GMT -7)   
Thank you all very much. Im definately going to take a look into some of these special diets. I really wish there was one set diet that a doctor could give you and say here this will work but all my doctors tell me is that diet plays no role in this disease. My parents are always trying to get be to eat things such as yogurt etc and avoid milk and all that stuff. A few months back my mom really wanted me to see somebody to talk to and i didnt really love the idea but i went anyway. After two sessions with the women she said that she thought i couldnt have handled what i have any better. Crohn's sucks plain and simple. But sometimes i feel like im the only one with what I have because no one in my family has ever heard of it so coming on this website and hearing all of your suggestions and support means a lot to me. I do have a very hard time gaining weight and that gets to me. Everyone is always asking me why I am so skinny and going from the guy who was bigger than everyone to the guy whose 135lbs in his senior year of high school who was 155lbs coming in as a freshman is tough. As for school, i am doing really well i have kept up a almost a 97 average over my three years and i so far have a 1330 on my sat out of sixteen hundred. My parents have always stressed school and even though i get crazy with anxiety and g et overwhelmed during the year i thank god i have that to fall back onto. I was told i would play division one soccer for a top school two years ago and now theres no way. And thats fine with me crap happens and you have to deal with it but now that im starting to look into colleges the problem that i cant get outa my mind is am i going to be able to go away for school. Im still sick, i missed almost twenty days of school this year going back and fourth to doctors, and i still have these fistulas that require me to wear pads in my pants twenty four seven. Its frustrating. The problem for me isnt when i am with my friends hanging out or at a party or in school, the problem for me isnt even that i cant play soccer anymore, its when am i going to be semi normal again if ever. The thing about me is i am probably the last person that anyone besides my family would think has Crohn's. When you have things that can take your mind off of this neverending illness its great and thats what im looking for. Thank you all for your help and support and believe me when i tell you your insight/support means more then you can imagine

BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 7/29/2009 6:25 AM (GMT -7)   
The best thing you can do at this point is make sure you find a specialist in Crohn's, not just a GI IBD doctor. My wife and I found a doctor out of Pittsburgh who practices only Crohn's/Colitis. That was the best move we made.

about the medicine. My wife is on Humira and 6MP for her moderate to severe crohn's. It allows her to live a normal life. My wife also has colitis and IBS and her ileum was removed, so diarrhea is normal for her. But, her average times in the bathroom are 2-5 times a day.

My wife was diagnosed when she was 15. She has two bachelor degrees, an associates degree. She works for one of the larger companies in Pittsburgh as a team lead. She makes good money, more than myself which I am proud of. She was able to have two healthy kids with a normal pregnancy and delivery.

And get this, David Garrard, a quarterback for Jacksonville Jaguars, was diagnosed with Crohn's. It didn't slow him down.

http://ibdcrohns.about.com/od/dailylife/p/guessgarrard.htm

The doctors will get you on track and your life will adjust. But, there is no reason to believe you can't live a normal life. Yeah, you might eat something that your stomach doesn't agree with. You might have surgeries down the road. You might have flare ups and spend a couple days in the hospital.

But you still have a normal life. You just have to watch what you eat and make sure you always keep Crohn's in mind. My wife just had a flare up this past weekend, and I think it was because she ate something she shouldn't have. She was feeling well and didn't think it would bother her.

I live in the Pittsburgh area. I can recommend our doctor if you are close.
Wife was diagnosed with moderate to severe Crohn's in '90 through exploratory surgery. Resection in '90 and '06.

Current meds are Humira, 6MP, Prilosec, Folic Acid, and vitamins.

Able to have 2 naturally born, healthy children in '02 and '05.


loki23
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/29/2009 11:26 AM (GMT -7)   
First I would like to say that I am new to the sight as well.....and you will find so much support, information and knowledge here that will help you through this tough time. I am amazed by the perseverance and strenghth of everyone here. I hope to contribute what I can.

I have been on Humira for almost 3 years(?). I can never remember when the different drugs start and stop anymore. It has helped me quite a bit as long as I stay on the prescribed regimen AND severly modify my diet AND take quite a bit of enzymes and supplements AND decrease stress and hopelessness through meditation. I know this doesn't work for everyone since it seems every Crohns patient is different. I was diagnosed 10 years ago with moderate to sever Crohns in the last 12" of my colon and rectum. In January I had a relapse and lost 15 lbs in 2 weeks (this was prior to the diet change and added supplements). While I am eating healthy and feel great....I have not been able to add any weight. So, I was put on medical food. I know it sounds gross, but it isn't. It comes in a powdered form (you just add water) and there are many flavors to choose from. I take UltraMeal in Dutch Chocolate and InflammX (which has helped stop the bleeding and inflammation) in Pineapple/Banana flavor. Both are produced by Metagenics. I get them through my father-in-law who is a chiropractor.....so I am not sure where you would get them if you were willing to try them. I am willing to share my diet with you.....but it is a complete lifestyle change. Convenience is no longer a word in my vocabulary.....it takes time and commitment. I have modified recipes, found substutions, weekly menus and spreadsheets of where I can buy everything for the least amount of expense. Because, eating this way is not cheap....but it is cheaper than all the meds I could be on.....or Dr visits I would have to be at. I felt I had no other choice being only 38 and wanting to avoid surgery and end up with an ostemy bag. While being overwhelmed initially......it is now so incorporated into my every day schedule that I rarely think about it. I am able to live a fairly normal life most of the time. Meditation has also helped to quiet the anger, frustration and everything else that resides within my heart, mind and spirit regarding this disease. I find that stress can severly increase the symptoms of Crohns. Now, at 17, are you going to want to meditate and eat like I do? Probably not.....but I don't know you either...so maybe you are. But you can live a very active and long life.....you have a lot ahead of you to experience.....but the mindset has to be there and be accepting of your situation.
I hope this helps....I tend to ramble and for that I apologize.

I wish nothing but the best for you......and anything I can do to help....I will.
Lissa
 
38 yr old female diagnosed with Crohn's in lower colon in 1999 with one stricture
Also have anemia and Crohn's related inflammatory arthritis
 
Currently on Humira, one injection a week for the last 2+ years
Vitamin D, Fish Oil, Bio-Dophilus, Glutamine, Glutegenics, Caprylate Complex, Inflammase, Ultramax InflammaX, Ultra Meal
 
Past drugs:  Asacol, Pentasa, Prednizone, Remicaid, Methotrexate, Imuran, 6mp
 
"Yesterday is gone. Tomorrow has not yet come. We only have today. Let us begin."


Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 7/29/2009 11:32 AM (GMT -7)   
http://www.climbing.com/exclusive/otw2/volume3/10withshawndiamond/

an interview with shawn diamond, a 26 year old that has Crohn's and has had 14 (!!!) surgerys but still manages to climb at the top level... the man is my inspiration since i'm also in rock climbing

btw ... I know times are tough but you have to roll with the punches... find a diet that suits you and a doctor you trust and eventually you'll get in remission... I can't tell you when but when you do, use the time well ;)

kyle Nelson
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 7/29/2009 3:33 PM (GMT -7)   
I thought it was interesting how you said that doctors tell you that diet has nothing to do with it. That's a pretty narrow-minded dismissal imo. Diets may not work for everyone, but my diet (along with very specific supplements) has put me in remission far better than any drugs have.

I do no gluten, no lactose. This is by far the toughest part of the disease
I supplement w/ two probiotics, proboulardi and lactovidin (they contain other strains too, but these are the important ones)
I take a good digestive enzyme before each meal
I am on ultrainflamX from metagenics as well.
Thank goodness for my naturopathic doctor.

Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/29/2009 5:50 PM (GMT -7)   
You sound pretty similar to me, except I'm a squishy gamer type. I was diagnosed at 16, over christmas break, and was almost immediately put on prednasone. nasty stuff. after that got the initial inflammation under control, they blitzed me with so many drugs so fast I can't remember them all. After a few months they settled me into remicade, and like you, it worked great... at first. over a couple years it got progressively weaker, and I had to switch to Humira. By this time I was out of pediatrics (i miss the colorful band-aids), and my dad's insurance plan was about to drop me, so I enlisted in a clinical trial, but after a little under a year i was still not in remission. the Humira helped, but not enough to put me in the clear.

Fortunately, I live very close to Mayo Clinic's main campus, and they have all kinds of neat trials going on. I'm currently in a trial for ABT-874, which is not FDA approved yet but is working very well... when I get the dose. As part of the trial, they are trying to figure out how often and how much to dose people, so when I start feeling better they hold my dose until I flare again. It's all worth it though- free meds, I get paid at the end of the study, and most importantly, it helps other Chronies get access to a drug that works.

But anyway, you want to know about Humira! Well, there are a couple ways to take it. Injection Pens, and Syringes. It's mostly personal preference. Pens give the whole dose at once, syringes can go at whatever pace you want. Like any injection, it hurts. As a minor, you might get to have a nurse inject you, but as an adult you will probably need to self-inject... unless you can get a friend or family member to do it. Many people say it burns. For me, it was more a feeling of this foreign object forcefully expanding itself inside my skin. Painful, but nothing a little jaw clenching can't handle. As for side effects, I never noticed any. I'm not sure what side effects other people have had. It's kinda hard to distinguish side effects from new symptoms.

While your diet doesn't have anything to do with Crohn's itself, it has a HUGE impact on your symptoms. Doctors tend to forget that. I find that if I'm doing very poorly, Spaghetti with Mozzarella Cheese melted on top helps a lot. Don't drink caffeine, its a bowel irritant even for normal people. Also, if your bum makes it uncomfortable to walk around or even sit, I highly recommend Calmoseptine. It's an ointment that you put on the affected area, and it "protects, soothes, helps promote healing." This stuff is what makes my life livable. You can get it over the counter at any pharmacy, however most don't keep it in stock, so you'll probably have to ask them to order it.

As for alcohol, because it will come up, most Chronies can't tolerate it. I've only recently started trying to figure out if I can or not. Anyway, I don't recommend it. Not just because youre not 21, but also because it will probably make your symptoms much worse.
21, Male, diagnosed over Christmas Break of my Junior year in High School.

Post Edited (Grukar) : 7/29/2009 6:57:18 PM (GMT-6)


Friars4
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/29/2009 8:29 PM (GMT -7)   
Thank you for all of the responses I really appreciate all of the insight. My first humira treatment is tomorrow at a local hospital and the doctors have said i will be getting four injections one in each arm and two in the stomach. I try to stay away from milks,sugars,nuts etc and in the next few days i am definatley going to research more on what things could induce flareups. Im hoping that the humira will do the trick but i am also happy to know that there are other options after humira. I also agree that stress plays a major part in making me sick and i am trying everyday to try to reduce my stress. I began playing soccer over the summer again with my old team and all was going well. i went to a tournament with them in North Carolina after doing well in training for a month and a half and i think my nerves got to me and i became sick and could not play the last two games. I still like soccer very much but ive finally realized that my health is more important and that playing and being frustrated that i cannot play at the level i used to isnt helping. I guess when a person is told they have whether its cancer, diabetes, crohn's etc they wonder why they are the ones who have gotten it but i really believe it makes you a stronger person. I think with the medication, watching what i eat, and a positive attitude things will get better. It just bothers me when i think that i am going to have this for the rest of my life. i wonder if eventually having this disease for so long will take its toll and i might not live very long or that i might get some sort of cancer from these new medications. I look around at some of my friends and other kids who worry getting beer for then night or if their parents will let them take out the car and i wish it could be me worrying about stupid things like that instead of worrying about what i have to eat, whether or not im sick yet, whether my medication is working, whether or not ill have to continue to wear pads in my pants the rest of my life, or why i cant gain weight or do normal things. My parents are devestated over what I have and i worry that their constant worrying over me is going to make them sick. Im sure one day ill look back and say you know now i realized why this happened or maybe this all was part of gods plan but as for now i dont understand why we are stuck with what we have. I am happy to know that I am not alone in this and i truly appreciate all of your support. I hope each and every one of you get better and i hope that we can continue to talk and share our stories.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 7/29/2009 8:31 PM (GMT -7)   
0h and friars, there are professional atheltes that have CD and UC... and many stressfull jobs and carreers. so dont lose hope.
randynoguts 



     http://www.geocities.com/randynogutsweb/

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