I'm 16 yrs old. About a month ago I was diagnosed with Crohns Disease. I had been struggling with intestinal issues on and off for awhile. December of 2016 I began diarrhea, abdominal pain, nausea, losing weight, and lost all my energy. We started going to the doc. I was put on 2 prescriptions of Bentyl. The second time I took it didn't help as much. I ran a few tests. Nothing showed up except for a slight anemia. Those were some rough months! I had no idea what was wrong with me. I thought maybe stress was causing it so I cut back on my job a little. That didn't help. Then one day I had pain on my lower right side and started a fever. My mom ran me into the doctor. At that point we were thinking appendicitis. The doc sent us into the hospital for a CT scan. It showed possible appendicitis or severe Crohns Disease. When I heard Crohns Disease it kind of shocked me. We ended up in the ER cause it was a weekend. They ran some tests. My white blood cell count was 16,000. It was no question that they had to operate. My cousin was getting married that day so I had to miss that. I was disappointed about that. It took a couple hours till they had everything ready. When they operated they found a perforation of the bowel. It had started to abbcess. They removed 8" of my small intestine, a little of my large, and my appendix. CD was expected instead. My doc and nurses were awesome! I was in the hospital for 4 days. Home never felt so good!!! I was so happy to finally figure out what was wrong with me. My friends and family have been so kind to me. I don't know what I would do without them. At the moment I'm not on medication. And I'm doing fine without it. I have to keep an eye on my diet though. I'm waiting on an appointment with a gastroenterologist. Any tips for CD?????
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Any tips for CD???
- Thread starter KatieRose00
- Start date
- Location
- Sacramento
Welcome. Sounds like you have been through a lot. My advise would be to really watch your diet. Keep a food diary and calendar it with how you are feeling and bowel movements and what meds you are taking etc. I know your not taking meds now, but probably will again. Everyone responds differently to diet but it can make a huge difference. I'd suggest educating yourself to start with what most consider the gold standard: the SCD diet.
Remember this is a chronic disease, so don't get frustrated, it is just learning and growing and managing it the best you can. Find a good GI you trust and that listens to you.
Remember this is a chronic disease, so don't get frustrated, it is just learning and growing and managing it the best you can. Find a good GI you trust and that listens to you.
Hey Katie,
I'm CYY, I'm 16 and I was diagnosed in December last year too!
I'm sorry you had to join this forum, but rest assured that we're a bunch of encouraging and supportive people who'd lend you a listening ear should you need it. Cheer up; you're definitely not alone!
It must've been hell, all that you've been through. Crohn's is indeed very cruel, and I'd be very frank and tell you that it doesn't ever become kinder to your body. But, as you settle in to your new lifestyle, things would start to get better for you. You'd understand what you can and cannot eat, what you can and cannot do, and adjust your expectations accordingly. You'd learn how to deal with ignorant people, insensitive people, and mean people. You'd learn how to juggle your medical appointments, how to handle your time wisely. You'd become much more mature than people your own age. At least that's something you can look forward to, right?
Now, some tips as to how to deal with CD:
1) Adjust your expectations accordingly. With CD comes limitations on your life. Like restrictions on what food you can eat, skipping lessons constantly because of hospital visits, how much physical exertion you can handle, etc. You just need to accept and get used to the fact that there are some things that you were able to do before, but are unable to do now. I know it's easier said than done, but if you are able to pull this point off, you'd be a much happier person.
2) How to deal with people who don't understand. The answer is: putting yourself into others' shoes. When I was on EEN (I'm on EN now), I had to bring this special formulated milk to school. People were not used to seeing me drinking nothing but milk during recess, and I've gotten quite a few stares from people. Teachers often ask me why I'm constantly absent from school, and a teacher once asked me if CD was contagious. Sometimes, I feel that my parents don't understand how I'm feeling too, how it can be active at one moment and fatigued the next, how I can be happy at one moment and angry the next. Some of my friends think I'm pretending. All these insensitive and mean people. The list is endless. But, if you are able to think from their perspective, the fact that they know nothing about CD and the pain you're going through, then it doesn't make sense to blame them for their ignorance. It makes forgiveness so much easier.
3) Time management. With constant absenteeism from school, you're always playing a catchup game. I cannot stress how essential time management is. The hours that you feel well enough to do something is limited. When you have the energy, make use of every minute wisely. When I'm on the train on my way to hospital, I read my geography textbook. When I'm stuck in the hospital with nothing to do, I watch Youtube videos on a particular topic that is being covered in school. I admit, I do slack every now and then, but I often find that I've got to pay the price for that in an upcoming test or exam. If you can't read up in advance, then my suggestion is to at least not allow yourself to lag too much behind.
4) When consulting a doctor, come prepared with a list of questions you want to ask. Jot down (or at least keep in mind) whatever (new) symptoms have you been experiencing, regardless of how related to CD you think it might be. Keep track of all medication that you've taken. If you feel that a particular doctor is not doing you any good, get a second opinion, or even a third. But within limits, that is. Don't be afraid to Google search things up, but take it with a pinch of salt. Basically, to sum this point up, what I'm trying to say is that you need to be an advocate for your own health.
Hope this helps somewhat, if any at all ^^
Stay strong! You can do this!
Cheers,
CYY
I'm CYY, I'm 16 and I was diagnosed in December last year too!
I'm sorry you had to join this forum, but rest assured that we're a bunch of encouraging and supportive people who'd lend you a listening ear should you need it. Cheer up; you're definitely not alone!
It must've been hell, all that you've been through. Crohn's is indeed very cruel, and I'd be very frank and tell you that it doesn't ever become kinder to your body. But, as you settle in to your new lifestyle, things would start to get better for you. You'd understand what you can and cannot eat, what you can and cannot do, and adjust your expectations accordingly. You'd learn how to deal with ignorant people, insensitive people, and mean people. You'd learn how to juggle your medical appointments, how to handle your time wisely. You'd become much more mature than people your own age. At least that's something you can look forward to, right?
Now, some tips as to how to deal with CD:
1) Adjust your expectations accordingly. With CD comes limitations on your life. Like restrictions on what food you can eat, skipping lessons constantly because of hospital visits, how much physical exertion you can handle, etc. You just need to accept and get used to the fact that there are some things that you were able to do before, but are unable to do now. I know it's easier said than done, but if you are able to pull this point off, you'd be a much happier person.
2) How to deal with people who don't understand. The answer is: putting yourself into others' shoes. When I was on EEN (I'm on EN now), I had to bring this special formulated milk to school. People were not used to seeing me drinking nothing but milk during recess, and I've gotten quite a few stares from people. Teachers often ask me why I'm constantly absent from school, and a teacher once asked me if CD was contagious. Sometimes, I feel that my parents don't understand how I'm feeling too, how it can be active at one moment and fatigued the next, how I can be happy at one moment and angry the next. Some of my friends think I'm pretending. All these insensitive and mean people. The list is endless. But, if you are able to think from their perspective, the fact that they know nothing about CD and the pain you're going through, then it doesn't make sense to blame them for their ignorance. It makes forgiveness so much easier.
3) Time management. With constant absenteeism from school, you're always playing a catchup game. I cannot stress how essential time management is. The hours that you feel well enough to do something is limited. When you have the energy, make use of every minute wisely. When I'm on the train on my way to hospital, I read my geography textbook. When I'm stuck in the hospital with nothing to do, I watch Youtube videos on a particular topic that is being covered in school. I admit, I do slack every now and then, but I often find that I've got to pay the price for that in an upcoming test or exam. If you can't read up in advance, then my suggestion is to at least not allow yourself to lag too much behind.
4) When consulting a doctor, come prepared with a list of questions you want to ask. Jot down (or at least keep in mind) whatever (new) symptoms have you been experiencing, regardless of how related to CD you think it might be. Keep track of all medication that you've taken. If you feel that a particular doctor is not doing you any good, get a second opinion, or even a third. But within limits, that is. Don't be afraid to Google search things up, but take it with a pinch of salt. Basically, to sum this point up, what I'm trying to say is that you need to be an advocate for your own health.
Hope this helps somewhat, if any at all ^^
Stay strong! You can do this!
Cheers,
CYY
Thank you so much for your support and advice. I really appreciate it!! This is all so new to me. Eventually I'll get used to this new normal. Keep it up everyone!!!