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Old 04-21-2014, 02:38 PM   #1
GleepGlorp
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Struggling with Crohn's

Hi everyone, I know I haven't posted too much here on these boards but I was hoping to get some support and tell my story in case anyone else out there is struggling with the same thing as me. I have Crohn's disease. I'm 26 now and I was diagnosed when I was about 13. In my 13 year struggle with this disease it's mostly been a losing battle. I've had most of my colon removed about 2 years ago because they told me I could live symptom free and basically have a normal life. After a 3 month recovery from surgery my Crohn's instantly came back. I've gone through just about every drug they can prescribe at this point with little to no avail. I've been severely allergic to all biologics they use to treat Crohn's as well. April 2 I was admitted to the hospital with dangerously low iron levels and what turned out to be a fistula in my rectum. I'm now stuck at home,unable to work or really enjoy anything because I have a drain in place down there called a seton. It hasn't all been doom and gloom though, because of this disease my mom was able to make my dream come true twice by bringing me to Disney World. Through all of my hardships with being chronically sick Disney World is the only place where I don't have to think about it. It's where I can essentially be a kid again and feel normal for a brief week. We were supposed to go back next January but because I got sick again and my mom lost her job we can't afford it. But no boo hoo's here because I was just approved for drug called Stelara. I'm hoping it will drastically change something because I need to be able to get back to life and hopefully Disney soon. For anyone else on here who suffers or maybe knows someone who suffers maybe you'd like to share your experience with the disease? I'd love to discuss treatments or maybe even how to deal with stress or combat depression. Thank you guys for reading!
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Old 04-21-2014, 11:46 PM   #2
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Gosh, that certainly sounds like a lot to go through, and you are so young.. I am sorry to hear that.

My father is now 75, and has Crohn's as well, nothing like yourself.. He is controlled (mostly) my meds..

Hoping someone can chime in with more experience, if not feel free to post away in need of shoulders, or all around support.

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Old 04-22-2014, 02:42 PM   #3
Christine
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I don't have anything to share but just wanted to say that I feel for you.

My cousin's husband was diagnosed at age 48, which is rather late in the game. Came on suddenly and intense. He hasn't had anything removed yet but is well on his way. His life has changed drastically and he is often very fearful. Many of the medications do not work on him.

It is an awful disease to live with and I'm sorry you have to go through this so young.
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Old 04-23-2014, 05:30 PM   #4
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Thank you guys for the replies. Christine- I'm sorry for your cousin's husband. It is very scary. I have the same problem with meds not working and I've been through them all at this point. I've been severely allergic to most of them. I truly hope he finds something that works for him before he has to have any surgeries.
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Old 04-23-2014, 05:50 PM   #5
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Sympathetic Ear

Hello, I understand what you're going through!

I have Ulcerative Colitis (UC) and it definitely changes the way you view the world and how you plan your daily activities.
I am in the process of planning a trip in early June and my main concerns are where will our hotel room be in proximity to the main hub of PC and where are the bus stops? Where are the RR's in the resorts? What SCD (med. diet) food is available for me to eat?

I'm hoping to receive a ground floor room next to the pool in the 60's. The phone agent said no guarantees and I could have a room next to the elevator. But I can't wait for an elevator, if I have to go... I'm trying to plan for a worst-case scenario. If I have to use the bathroom, I have about 1 minute before an accident occurs. Hopefully the management will be understanding. I look perfectly healthy but have extreme fatigue and the bathroom issue going on so I'm pretty sick.

Regarding food, fortunately, I know DW is super accommodating with food restriction menus. I ate at the Crystal Palace last fall and a chef personally walked me through all of the food, making recommendations to me, which was great!

Also, we ate at the Beauty and Beast restaurant that just opened in MK and the chefs again were able to create a special dish for my daughter (Who has similar issues I do) of just plain chicken and veggies with nothing on them.

I am also taking my sister with me to help watch the kids if I have a "D" attack and need to break for the RRs! I'm grateful I can take her and glad she has the time off to come with me.

I wonder how many other's visit DW and deal with the same issues...
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Old 04-23-2014, 09:31 PM   #6
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I feel for ya. I have been battling with Crohn's for about the same length of time. Was diagnosed at 14 and am now 25. I deal with more moderate symptoms but flare ups can stop by with no warning and it seems like life just shuts down for a while. I try to eat as "clean" as possible and like to use exercise/running as an escape and it seems to help battle the Crohn's as well. I couldn't imagine going through all you go through. It's always nice to find an escape, glad Disney gives you that chance! Stay strong!
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Old 04-23-2014, 10:04 PM   #7
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My DH was dx'd with Crohns almost 10yrs ago; he's 39. He's had two surgeries for it, in 2004 & 2007. Meds have mostly managed it until about 2 yrs ago, when he went thru this big ordeal with changing drs, meds, etc. he's finally seeing a specialist at Northwestern in Chicago. He also finally got on Remicade, after a year & a half battle with the insurance company on which need they would cover, etc. (makes me furious when the ins co thinks they know better than a doctor!!) since starting the Remicade, his disease has gone into remission, hooray! He still has symptoms, bc as one doc said, he'll never be "normal" again. He finds that when he travels, it often has a positive effect on his symptoms, not sure why but he'll take it! He always is scoping out the route to the bathroom no matter where we are. We prefer to stay at All star Music in a family suite so that we have two bathrooms available. Makes us all feel better to know that none of us would prevent anyone else from having toilet access.

Crohns is a tough disease and many don't understand the effects since it's largely "invisible." I'm sorry you have had such an extreme case to deal with! I hope you get a chance to go back "home" sometime soon!
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Old 04-23-2014, 11:31 PM   #8
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My mom was diagnosed the week after my now 25 yo daughter was born... mom was 42. Back then the mode of practice was high doses of prednisone and sulfa drugs. Yeah well she was allergic to the sulfa. Never did have surgery but they wanted to, unfortunately she was taken in 2000 at the age of 55 by a bad heart. She did fight hard, the best 6 months of her life she said was when the doc put her on paxil, I was able to get her to go to Disney for 5 nights, Universal where she helped chaperone a Girl Scout trip, and even on as short cruise. Before the Paxil all she wanted to do was stay home.
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Old 04-25-2014, 08:54 PM   #9
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Thank you guys so much for the replies. I had never even heard of Crohn's before I was diagnosed but it's shocking to know that there are a lot of us out there. I had a very bad allergic to Sulfa drugs as well. I'm glad that people are responding to the Remicade positively. I took it for 6 months and it was the best 6 months of my entire disease "career". Unfortunately I was allergic to it. I'm hopeful with the Stelara though. I'm having my first injection May 6th!
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Old 04-26-2014, 05:58 AM   #10
Christine
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Quote:
Originally Posted by GleepGlorp View Post
Thank you guys so much for the replies. I had never even heard of Crohn's before I was diagnosed but it's shocking to know that there are a lot of us out there. I had a very bad allergic to Sulfa drugs as well. I'm glad that people are responding to the Remicade positively. I took it for 6 months and it was the best 6 months of my entire disease "career". Unfortunately I was allergic to it. I'm hopeful with the Stelara though. I'm having my first injection May 6th!

I've been allergic to sulfa since I was a baby. It is one of the most highly allergic antibiotics out there. It seems to run in my family too.

My cousin's husband has been on Remicade and Methotrexate (sp) for the past 6 months and he's been doing okay. For some reason, they are pulling him off the Remicade. I think they believe (and I don't know how they can tell) that the Remicade is not really working for him, but the methotrexate is.

Of course, he is better but not better. He has a lot of mucous (sorry I know this is gross) that is just coming out all the time and they don't know why. It gives him that feeling of urgency all the time and he's just very miserable.
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