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My "Story"

Before I start my "story" I would like to thank everyone that posts on here! I get so many tips when I have a question!

So here's my story:

About a year and a half ago, I started getting sick whenever I ate. Not vomiting sick, running to the bathroom because your just went straight through you sick. At first I didn't really think anything of it, which is bad, I know. I thought I had just ate something bad, but after two weeks I became worried. I was 16 almost 17 at the time. The most I had been sick before is an ear infection or strep throat. Common things, you know. After awhile my parents started worrying that I had an ulcer. They were about to take me to the doctor after about a month after this started happening, when all of the sudden it stopped.
After that, I got it for about a week or a couple days every month, usually when I had my period. I searched online and found that it was sometimes normal for women to experience that during their cycle. So once again, I thought nothing really of it. So this continued off and on for several months.
Then, this summer everything changed. It can back and it sure did come with a bang. After being sick for the majority of the summer, my parents finally took me to the doctor. I went to my family doctor since that was the only doctor I have been to my whole life. He thought it was an ulcer or some infection. He scheduled an ultrasound and then I had to take some stool samples at home (having to poop in a bowl, even alone, scooping your poop into a tube, and then carry it through your house to the fridge is one of the most embarrassing things I have ever had to do). The ultrasound and the stool tests came back normal. He then told me there was a couple of things it could be, and he named them off, but he said he didn't think it was Crohn's Disease since I hadn't lost any weight. I felt like I had gained weight even though I barley ate anymore.
I was the transferred to a Gastroenterologist about 2 hours away. They didn't think it was Crohn's either. They thought it was IBS. They were going to put me on medicine for that and see how it worked out and then if it didn't I would have a colonoscopy and endoscopy. Since I was just a couple weeks shy of turning 18, my mom was with me. She told them that her mother, my grandmother, has Crohn's and she had to suffer for 3 years before they found out that she had it. She told them that she didn't want me to suffer the same way that she did if they were wrong about the IBS.
So, a week after I turned 18, I had both the scopys. Happy Birthday, right?? Compared to the prep, scooping my poop out of a bowl was nothing. Since we lived two hours away, we had to stay in a hotel room that night. I have never felt so low in my life. I threw up once, when I had 2 more glasses left, and I just cried. I couldn't take it anymore. But of course, after regaining myself, I had to finish. The scopys themselves weren't that bad. Perks of being put to sleep. When I woke back up, the doctor came in the room. He showed me and my parents the pictures they took. My colon was fine, but my ileum had lesions. They took samples just to make sure, but they were almost positive it was Crohn's. Guess what? They were right. I guess mom's really do know what they are talking about.
I was immediately put on Pentasa. At first it was a God sent. I went from having episodes every day to once or twice a month. A month later, I got this bump on my butt. It hurt constantly and then it stopped hurting, but started bleeding. I started freaking out. I was a healthy teenager living a normal life. I went back to the doctor and they told me I had a fistula. Guess what? More meds. I was taking 5 to 6 pills a day. I don't know if that is a lot to some people, but let me repeat myself. I was a healthy teenager who had at most an ear infection or strep throat. Rarely! I went to the doctor maybe once every 4 years, if that.
I didn't really have much self confidence to begin with, but what I did have went down the drain. I didn't realize how much of a emotional strain this would be.
Two months later, the fistula had went away and then reoccurred again. My symptoms got worse. I was back to having flare ups for weeks at a time.
This is now. Later this week, I'm going back so they can increase my "therapy". More than likely, I'm going to have to start giving myself a shot everyday.

I honestly don't know how to handle this disease. I never know what to eat. One day something won't bother me, and then the next day I'm running to the bathroom. I can't win. The fact that I'm going to have to deal with this the rest of my life literally makes me cry sometimes. I don't know how people do this. I don't know how I am going to do this.

But God has a plan for me. He wouldn't bring me to it if He couldn't pull me through it. There is a reason for this. A reason why I have this. I just wish I knew what it was.
 
Welcome to the forum.

What meds are you on now? I'm not sure what shot you would get every day. A biologic like humira is one shot every 14 days, cimzia is once a month shot and remicade can be every 4-8 weeks but it is an IV infusion. There is also methotrexate which is an immunosuppressant that can come in shot form but it is once a week.

Biologics work well on fistulas so they may be a good option for you.

My son was 15 at diagnosis and will be 19 soon. He has been on remicade + methotrexate which eliminated most of his symptoms but there was some stubborn inflammation that required surgery. He is now on humira.

I hope you find the right med and relief soon!
 
Right now I'm on Pentasa. I'm not for sure what medicine they are considering. My mom thinks I don't understand what is going on or something so she makes all the decisions on what I'm doing. That is just what she told me about one of the medications they are considering.
 
Sorry to hear what you've been through. It's a rough road but luckily there are some good meds out there to help out. I'm on Remicade and it's been a lifesaver! I'd suggest making a food log of everything you eat everyday and seeing how it affects you. Best of luck :)
 
Hi maddiepaige,

I think it's good that your doctors and mom are looking for you to be on another med as well as (or instead of) pentasa but since this is something that you will be dealing with for your whole life (or at least for now that's how it looks as they may in your lifetime find a cure and I think that's a hope that you can hold onto while still pursuing treatment now) I think it's important that you are involved in the decisions and know all about your treatments. After all one day you will need to take over making all those treatment decisions - if not alone because we all need our families and it's good to talk things through, you will at least be taking the major role in deciding how to manage your own medical condition.

I'm sure your mom and your doctors want to protect you and are trying to take some of the burden of dealing with this disease but you are already dealing with the physical effects and you will have to continue to deal with those and the treatment so I think you should be involved in the decisions. Participating in the discussion about decisions over treatment can be a big part of feeling like you are taking back some control of your body and also ownership over this disease.

It sounds possible that they are talking about the SSI vaccine - which would involve a shot every other day. That's just a guess but as Clash said I can't think what other med would involve daily injections. Unless they want you to do daily b12 shots.

My point is it's good to know what choices you have. It does all feel very confusing and there aren't easy answers but knowing about potential choices for treatment doesn't mean you have to make the decisions alone - you can still talk it over with your mom and anyone else whose opinion you value.

Because it does all get so confusing at times and because you never know when you need this information to hand, something to consider doing early on in this journey is to make a record of the tests you had, any reports or lab results, meds that you've tried. You could ask your mom to do that with you or go over it with you if she has done that already. And then you'll know where all that information is if you ever need it, if you change doctors or need to review your treatment and how well you are responding.

And hopefully one day you'll be able to archive that record because they'll have found a cure and it'll just be an interesting historical document of a disease that doesn't exist any more. There isn't a cure now and we might have to wait patiently but I think there are some promising treatments coming through and I think we can hold out a little bit of hope that a cure will come and hope can help a lot. In the meantime we have to find the best treatments we can to stay healthy and try to stay strong. There are people here who know what you are going through and I hope that you can find some strength in that too.
 
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