Crohn's Disease

[Wikipedia]

Gah, I wasn't going to post this here but I really feel an urge to have this talked out with people of many different opinions and backgrounds. Please respect me with posting personal information.

I have Crohn's Disease, for those that don't have an idea of what it is here is a little summary: they don't necessarily know what causes Crohn's Disease and they don't have a cure. Although, doctors have an idea that this autoimmune disease is onset genetically. It causes inflammation in the intestines and ulcers to develop throughout the GI tract, the worse the case you have the more ulcers you will have. I had ulcers going from my mouth all the way to my butt.
If you really want to learn more just glance over the wikipedia article:
http://en.wikipedia.org/wiki/Crohn's_Disease

I was diagnosed with Crohn's Disease when I was in 3rd grade.
Most people with Crohn's receive symptoms at about 18 years old and later. I have a very severe case of Crohn's Disease, in fact, my doctor is a GI specialist for Oregon, part of Washington and Idaho, he has had hundreds of Crohn's patience and he says that I have one of the top ten worse cases he has ever seen. To put the disease in remission I had to take a very strong steroid medicine called prednisone which has many, many side effects. They include increase weight gain, facial swelling, stunted growth, night sweats, increase hair growth, and joint pain. Just an idea of the kind of extreme weight gain; before the symptoms I was 87 pounds, after the ulcers developed and it become painful to eat I weighed 60 pounds, after taking this steroid I weighed 105. All in a matter of 3 months which is hard on a body of only 8 years old. After a year of taking this medicine I weened off of it and now take a daily 100 mg tablet of a different medicine just to make sure the disease stays in remission.

So, now this is my predicament.

I have been keeping the disease in pretty good control for the past 8 years. However, due to not taking my daily medicine very well during all of my summer travels my disease has been starting to reveal itself again. It is believe that the stress of school, I might have the hardest schedule of anyone at my school, has catalyzed the return of the disease as well. I had a colonoscopy last Wednesday and they found a couple feet of puslike ulcerations in my small intestines.

I have two options now for medicine.

Take that awful steroid medicine. This would make my face swell, I would gain a lot of weight, my soccer career would be over, and I would hate to think what people would think of me gaining weight so fast "Oh man, he's really let himself go!" Not to mention all of the other unpleasant side effects.

The other option is to take monthly infusions. This has very little side effects which include a very small chance of developing lymphoma or liver failure. It is a very strong medicine, probably the second best medicine they have out there for Crohn's Disease (I'm allergic to the best medicine they have for it, what luck, right?) Sounds like a dream right? I get this great medicine with no side effects. Well with the nature of the medicine I would have to go to the hospital to take these infusions every month for a year. The problem? I'm a senior in high school and I had plans to graduate and go to Utah to attend BYU. However, I can't just drive to my hospital in Oregon to take the treatment when I am in Utah. Also, after taking this medicine my body will become immune to it. I can never take this medicine again if I use it now. The day that I do the first infusion my body will start developing an immunity to the treatment, they have to get all of the sessions of treatment out of the way before my body becomes fully immune to it. My worry is that I will have an even worse flare up later in life, probably when dealing with the stress of dental school, and I won't have this treatment available. But at least if I take it now I will attain complete control over my disease.

So here's the question:

Do I go for the medicine that will ruin me physically and possibly emotionally (I'd hate feeling that fat and being made fun of) or do I take the medicine that will ruin me socially (I will not be able to go to college of my choice and with my friends).

Thanks, you guys, for putting up with my early immaturity on this forum and for allowing an environment where I can talk about my personal life like this. Either way, there is going to be a big change in my life and school needs to be a priority so I don't get stressed out by it when I get behind. This might mean considerably less time on smashboards.

Even if no one reads this wall of text, it feels good to just write it out.

 

[Xanthyr]

First off, I am terribly sorry to hear that you have such an ailment as this. I can't even imagine the discomfort and pain that you must have felt and are feeling, especially with this dilemma at your feet.

Personally, I would do the steroids. Perhaps you can find that other treatment at a closer location than Oregon, if you're that lucky. The main point is that you should save the big guns for where you're going to be living, or at least have a very consistent way of receiving the treatment. Perhaps once a month, you spend a week in Oregon via plane if you have proper accommodations.. I'm sure you can receive leeway from BYU so you can take some course works with you on your trips.

If you can't acquire proper means of getting the infusions without missing one, then I wholeheartedly suggest you stay with steroids and swallow your pride. If your friends make fun of you because of the weight gain, they're not your friends at all. And, what're you going to be doing? Being a dentist, or playing soccer for a living. I'm sure you can hold off on the soccer a little bit (even though you can still play) until you're settled in and can switch medicines.

Bless you my brother, I wish the best for you.

 

[Wikipedia]

Maybe I didn't clarify. I live in Salem, Oregon, it would only be an hour drive to the hospital in Portland, Oregon. I would have to drive up there once a month for the infusion. I want to go BYU in Utah when I graduate at the end of this year which would involve me moving from my home here in Oregon to Utah. If I start the infusions I can't be away from Oregon for more than a month because I have to get the infusions which means I can't go to college because that would involve me going away for more than a month.

 

[Xanthyr]

Ah, my apologies, I had thought BYU was in Idaho. Though it is still a state way, is a lot closer than Utah.

 

[Jammer]

I feel for you, Wikipedia. My mother has Crohn's. It isn't too bad for her, but it's still really annoying sometimes. She often has "tummy problems" in the morning, which sometimes make her late for work. It's really sad to see her going to the bathroom every ten minutes, holding her stomach.

I don't think your predicament is really one that you can let other people choose for you. I mean, we can point out pros and cons to both sides, but you're the one who has to do the weighing and make the decision.

I think medicine is advancing so rapidly that you are likely to have more options in the future, even when your body becomes immune to the medicine you're thinking about taking. I can't promise anything, but you may want to take that into consideration.

Being fat isn't all that bad. Since I'm quite fit, I know that saying that is a bit hypocritical, but I don't think you'd have to worry about being made fun of for your weight, especially when people find out it's because you're taking steroids to hold off a disease. Unless you're really into soccer, or really put a lot of value in your body image, I don't think being fat would be that big of a deal.

You said the steroids would make your face swell, right? I guess, again, it depends on your feelings how much that should weigh in on your decision. Pregnancy makes many women's faces (and bodies) swell with extra fluids, but that doesn't really stop them from wanting to have a baby.

I guess all I can say is that I'm sorry this happened to you. Good luck with whichever treatment you choose.

 

[#HBC | marshy]

First off, let me say that I probably have a little more experience with this than others, as my stepfather is constantly battling this disease.

Gah, I wasn't going to post this here but I really feel an urge to have this talked out with people of many different opinions and backgrounds. Please respect me with posting personal information.

I was diagnosed with Crohn's Disease when I was in 3rd grade.
Most people with Crohn's receive symptoms at about 18 years old and later. I have a very severe case of Crohn's Disease, in fact, my doctor is a GI specialist for Oregon, part of Washington and Idaho, he has had hundreds of Crohn's patience and he says that I have one of the top ten worse cases he has ever seen. To put the disease in remission I had to take a very strong steroid medicine called prednisone which has many, many side effects. They include increase weight gain, facial swelling, stunted growth, night sweats, increase hair growth, and joint pain. Just an idea of the kind of extreme weight gain; before the symptoms I was 87 pounds, after the ulcers developed and it become painful to eat I weighed 60 pounds, after taking this steroid I weighed 105. All in a matter of 3 months which is hard on a body of only 8 years old. After a year of taking this medicine I weened off of it and now take a daily 100 mg tablet of a different medicine just to make sure the disease stays in remission.

All right, it's hard to help you out if you're going to joke about your age like that, I know you're 18, but it makes me doubtful if that's your true weight or not. I get the point though, you've been up and down since taking this medicine, so I'll base my advice on that.

I'm going to be brutally honest about this, but you need to know what my stepfather has gone through at his age(56), to show you that you should take a different path than he did because it seems like he has made the wrong choice. He's had this disease for 2 years, and it is getting the best of him.

Take that awful steroid medicine. This would make my face swell, I would gain a lot of weight, my soccer career would be over, and I would hate to think what people would think of me gaining weight so fast "Oh man, he's really let himself go!" Not to mention all of the other unpleasant side effects.

This is what my stepfather is taking right now, prednisone, and from looking at my father, you're exactly right about the side effects. My stepfather has always been a little husky though, but I'll tell you that he's gained at least 10 pounds since being on this for nearly 2 years. Then again, he's 56, and you're in your teens, so you probably have more metabolism.

The other option is to take monthly infusions. This has very little side effects which include a very small chance of developing lymphoma or liver failure. It is a very strong medicine, probably the second best medicine they have out there for Crohn's Disease (I'm allergic to the best medicine they have for it, what luck, right?) Sounds like a dream right? I get this great medicine with no side effects. Well with the nature of the medicine I would have to go to the hospital to take these infusions every month for a year. The problem? I'm a senior in high school and I had plans to graduate and go to Utah to attend BYU. However, I can't just drive to my hospital in Oregon to take the treatment when I am in Utah. Also, after taking this medicine my body will become immune to it. I can never take this medicine again if I use it now. The day that I do the first infusion my body will start developing an immunity to the treatment, they have to get all of the sessions of treatment out of the way before my body becomes fully immune to it. My worry is that I will have an even worse flare up later in life, probably when dealing with the stress of dental school, and I won't have this treatment available. But at least if I take it now I will attain complete control over my disease.

So here's the question:

Do I go for the medicine that will ruin me physically and possibly emotionally (I'd hate feeling that fat and being made fun of) or do I take the medicine that will ruin me socially (I will not be able to go to college of my choice and with my friends).

OK, it may sound harsh and brutally honest, but I strongly suggest you do the following. Take the presnidone right now, because this disease probably will pop up later,(not that it'll disappear, but it may take more out of you when you're older than now) so you'll need the other medicine later in life.

Let me use my stepfather as an example. Like I said, he's 56 years old, and is overweight. He's under a stressful job with strict deadlines(newspaper, don't judge), so this only adds to the stress he endures. His body had a lot of trouble with this, as he was in the hospital for a week after being diagnosed(most patients aren't in that long). Right now, he is still on the medication, and is still constantly working. He's gained more weight and his face has swelled up a little bit since first taking it(though the swelling has recessed, he almost looks like he originally did).

Do I go for the medicine that will ruin me physically and possibly emotionally (I'd hate feeling that fat and being made fun of) or do I take the medicine that will ruin me socially (I will not be able to go to college of my choice and with my friends).

You shouldn't be embarrassed about this, if that's what you're getting at. Also, if you're friends and peers are immature enough to make fun of you for your condition, just do yourself a favor and explain the situation to them. You're nearly 40 years younger than my stepfather and seem to be athletic considering that you play soccer, so I think you'll be able to handle it better than he did. It may be necessary to drop soccer though(I know that this probably sounds crazy, playing sports myself, I know how you feel), as you will be fatigued when you take it. You need to be strong about this though, because while it may have its nasty side effects right now(they'll lessen as you adjust), it'll be worth it in the long run. It's safe to say that my stepfather would much rather be using the monthly medicine if he could, as he frequently gets shots of pain throughout his body.

Also, I got separated from my friends a while back too, but I made new ones and still stay in touch with my old friends.

Thanks, you guys, for putting up with my early immaturity on this forum and for allowing an environment where I can talk about my personal life like this. Either way, there is going to be a big change in my life and school needs to be a priority so I don't get stressed out by it when I get behind. This might mean considerably less time on smashboards.

Even if no one reads this wall of text, it feels good to just write it out.

No problem, and if you choose to take my advice into account, consult your physician about what I said, as this disease may be a little different between you and my father.

I'll probably update this post later with more information, in a bit of a hurry right now.

 

[Tryptomine]

Sorry to hear, must suck, etc (I don't mean to sound callous, but I'm sure you get plenty of that already, and it seems you posted this for opinons to help you decide, not sympathy).

Anyways, Jammer is absolutely right in that it's your decision and no one else's, but if I were in your shoes I think I would have to opt for the steroid treatment. Neither option sounds terribly good, but the consequences of the monthly infusions sound far more permenant to me.

I can sympathize very easily with hating being fat, since I myself went from dangerously underweight, to significantly overweight, then finally back to underweight again through my childhood. But as bad as the steroids are, they sound to have temporary effects when compared to the infusions, which would force you away from the college of your choice and permenantly disable your "best weapon" against combatting the disease.

So all in all, I'd say temporary extra discomfort over the long term effects. However, I don't know how important your "soccer career" is to you or how bad taking the steroids will mess it up, but since you only mentioned it in passing I kind of took it as being closer to a hobby. If it really is such a big deal to you, and taking the steroids really will harm it that much, I might have to change my answer to the infusions. Since in that case the steroids might cause the biggest long-term harm to you.

 

[forkgirl]

man, i'm really sorry

I have two friends with crohn's disease and it must be really hard.

like everyone's been saying, we can't really make this decision for you, but i think being out of school for one year wouldn't be THAT bad. many people take time off from school, or go to Europe after high school before college, etc. If they're pretty sure the monthly infusions would help you "attain complete control over my disease," then i'd say it's pretty worth it. one year out of your life to get healthy for many more years. It's never too late to go to college.

based on just the info you gave, i would choose the monthly infusions

good luck with whichever you choose and i wish for the best

 

[GoldShadow]

The other option is to take monthly infusions. This has very little side effects which include a very small chance of developing lymphoma or liver failure. The day that I do the first infusion my body will start developing an immunity to the treatment, they have to get all of the sessions of treatment out of the way before my body becomes fully immune to it.

...

Do I go for the medicine that will ruin me physically and possibly emotionally (I'd hate feeling that fat and being made fun of) or do I take the medicine that will ruin me socially (I will not be able to go to college of my choice and with my friends).

Is option number 2 the medication known as Remicade (Infliximab) by any chance?

Anyway, I say go for #2, without a doubt. As it stands, the steroids, besides being less effective than the infusion, will cause many unpleasant side effects. I don't care what anybody here says, one's appearance is one's identity and is directly related to self esteem. It seems like you'll definitely feel self-conscious about any weight gain, and chances are, others will realize it too.

The infusions are a better solution and a stronger treatment. It will work better and with fewer side effects. Also, are you sure that it's not possible for the hospital to ship the medication to a hospital closer to BYU? If worst comes to worst, you don't attend BYU but instead, go somewhere closer; as long as you're not pessimistic about the whole situation, you'll probably be just as happy elsewhere as you would be at BYU.

Your health is the most important aspect of your life. Without it, you can't do much; poor health will make you miserable. You already know that. Therefore, it makes sense to go for the best treatment possible, that is, the treatment that will improve your health the most.

However, due to not taking my daily medicine very well during all of my summer travels my disease has been starting to reveal itself again.

Always, always, always take medication like you are supposed to. Otherwise, you'll find yourself right back in remission.

My worry is that I will have an even worse flare up later in life, probably when dealing with the stress of dental school, and I won't have this treatment available. But at least if I take it now I will attain complete control over my disease.

Whoa whoa, slow down! Have ambition by all means, but also take things a bit more slowly. Dental school? You're not even out of high school yet; you have no idea whether you'll want to do that several years down the line. Your priority should be getting your condition under control. You were right about one thing though, it may flare up again later in life; no matter where you are later in life, it will be frustrating if it does flare up. That's why I think you should grab Crohn's by the horns and give it your best shot. Not later, but now.


Anyway, those are my thoughts. I'm not you though, and you definitely need to talk to your doctor and family and close friends about this. Hopefully you will come to whatever decision is right for you. Best of luck man.

 

[Wikipedia]

I appreciate all of the thoughts and concerns.

Goldshadow, the medicine is Infliximab. And I have known since I was seven that I want to pursue dentistry.

But I wonder if I could have enough self control to just not eat when I am tempted when on prednisone. I wouldn't be able to stop the facial edema but at least I'd still be able to play soccer.

 

[commonyoshi]

So does the medicine simply increase your appetite? If it does then there are many ways to control yourself. The best would be to avoid the temptation altogether. When you feel like eating, do something to busy yourself, preferably outside.

However, I hope you're not thinking of becoming annorexic. That is the last thing someone who wants to play soccer should do to get in shape.

Good luck with it all. If it were me, I'd take the medication and go to college. meh