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Old 04-21-2014, 03:38 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 04-22-2014, 12:46 AM   #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, 03:42 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, 06:30 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, 06:50 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, 10:31 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, 11:04 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 04-24-2014, 12:31 AM   #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, 09:54 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, 06:58 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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Old 12-29-2014, 03:33 PM   #11
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GleepGlorp

Sorry, you have been having such a hard time. I hope you are doing better on Stelera.

You remind me a lot of my younger sister. She was diagnosed with Crohn's at 15, but looking back, we think she actually first got it at about 13. We just didn't recognize her early symptoms, skin and hair problems, eye issues, weight loss. We just assumed any changes that were occurring were normal puberty. It wasn't until she started to get sick to her stomach that we realized anything was wrong, and even then, it was months before anyone realized she wasn't just getting bad cases of the flu or a nasty bug. We were pretty lucky, though, compared to other stories I've read because it only took us about 4 months to get a diagnosis once we realized something was going on.

Then the fun started. She actually has a pretty rare form of Crohn's. I was told that less than 3% of people with Crohn's have it like she does. We spent almost 4 years trying to find someone who knew how to treat her. We were in and out of the children's hospital, and she was on more medication than I can count, and each doctor kept telling us to find someone else because they had never seen a case like hers before and weren't qualified to treat her. In my experience, most of the GIs out there are not very familiar with Crohns beyond the basics, and the ones that are are used to dealing with mild to moderate cases, not severe ones. Even at the children's hospital there was a lot of misinformation being spread around from the doctors.

Finally, it got so bad she was down to 80 lbs and so week she couldn't walk across the room. It was awful, and the doctors weren't offering any help. We were at the point of contacting the Mayo clinic when she was admitted to the children's hospital again. Because her case was so severe, they were able to get her into a specialized program at another hospital that is by referral only and takes only the most severe Crohn's and Colitis patients. It was like an answer to a prayer.

She now has a team of specialists who all specialize in Crohn's and UC. They are not regular GI doctors, and they only see the most severe Crohn's/UC patients, so they were prepared to deal with a complicated case like hers. The program also provides a nutritionist and a phycologist who both specialize in Crohn's/UC. It is amazing. From the first visit, I was like finally we are getting somewhere. These people actually know what they are talking about.

For instance, when we told the nutritionist about her issues with taking nutrient drinks like ensure, she immediately knew what was going on. This had been a long standing argument with all her old doctors who felt that forcing these drinks down her throat would solve all her problems. But no matter which brand she tried, she just couldn’t keep them down. They always made her violently ill. At first, we thought it was the high levels of sugar in these types of drinks as sugar is one of her triggers, but we tried the sugarless ones made for diabetics, and it didn’t make any difference. The nutritionist explained that there is a certain ingredient in all these drinks that some people are allergic to, and it will make them very sick. It was such a relief to hear someone else acknowledge that we weren’t crazy. She actually couldn’t physically take these things.

In the end, it took about 9 months to get her into remission with a combination of diet, regular drugs, IV supplements, and biologics. She’s been in remission since this past spring. She still takes half the pharmacy, but she is doing well right now, and we are hopeful it will last. For now, we are making every moment count and trying to make up for everything she missed out on these last few years.

So I guess my point is no matter how bad it gets, just don’t give up. Be your own advocate; look for a new doctor if you aren’t getting the help you need. It will get better eventually.
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