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Crohn's Disease
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Posted 9/30/2014 9:00 PM (GMT 0)
Hi! I just joined this forum. I'm 16 and I was just diagnosed with Crohn's at the end of the summer. I was put on Remicade almost immediately, and luckily it's been working, but there was too much inflammation already in my stomach and I need to get a resection. My surgery is on Thursday and I know next to nothing about it. confused I would really appreciate any advice about overnight stays in the hospital in general and about surgeries, especially about how to manage school during a surgery (I'm taking 4 AP classes). I'm hoping my stomach pain will go away soon!

Post Edited (crohns1234) : 10/18/2014 7:13:59 PM (GMT-6)

Posted 9/30/2014 9:14 PM (GMT 0)
Welcome to our forum, crohns1234. I'm sorry you have gotten this diagnosis but I'm glad you're getting good care.

My advice is this: you are almost an adult, and you are old enough to be able to engage your DRs directly. With your parents by your side, schedule a phone call with your surgeon and ask him/her these exact questions. Your doctor should have already explained to you what to expect and how long your recovery will be. Since you are asking us, I'm guessing this conversation hasn't happened yet. Don't let him/her off the hook!

This is a chronic illness and you are going to need to communicate with DRs about your symptoms and worries for a very long time.

I'm sure other people here will respond to you about their experiences with surgery - I haven't had a resection so I will not add any thoughts on that.

I'm really glad you joined here and I look forward to hearing about your recovery!
Posted 9/30/2014 9:23 PM (GMT 0)
Hi and welcome to HW. I'm sorry that you are needing to have surgery. There are a lot of different types of surgery, so it's hard to answer your questions. You are probably having resection surgery on your intestines and not your stomach first of all. You might look at the Crohn's and colitis website and explore so you can learn more about it. Here is one of their articles that might help> http://www.ibdetermined.org/ibd-information/ibd-treatment/ibd-surgery.aspx I agree with everything Kazbern told you. Your surgeon should be having a talk with you to tell you exactly what to expect and how long you will be off school. I was in the hospital for about 5 days and off work for about six weeks. You probably will feel well enough after the initial surgery to do your work at home, but you definitely will miss some classes. You may want to talk with your teachers and school counselors in advance to plan for extra help. Good luck with everything and ask us anything you think we can help with.
Posted 10/1/2014 3:03 AM (GMT 0)
I agree with the above. If I were you I would get more info about this surgery directly from your surgeon. How are you feeling? In my opinion (and take it just as that), surgery should only be for when medications fail and your quality of life is poor enough to justify an invasive surgery with possible life-long side effects. I would hate for you to have regrets because you were not informed enough. If it is a resection, which is when they cut out the diseased portion of the intestine and reconnect the intestine to healthy tissue, the first thing you will want to ask is whether it will be done laproscopically or open. open surgery takes a lot more time to recover. Once your surgeon specifies, ask him/her to go over in detail what it will entail, touching on the risks and possible side effects of the surgery. I would also ask why there is a rush for surgery when you just recently started treatment with Remicade. Remicade lowers your immune system and it is usually recommended that you be off it for 6 weeks prior to a major surgery. If you are young and your parents are making this decision for you, I would recommend talking to them about the surgery and asking them to make you an appointment with your surgeon prior in order to go over everything. Good luck!
Posted 10/1/2014 3:45 AM (GMT 0)
Hi,
* I would speak to your counselor at school. Let them know that you will be having major surgery that will likely keep you out of school a week (more of less).
* ask a friend to take notes for you in your classes. If you can't do this ask the counselor to ask someone to take notes (you can send the counselor an email explaining this)
* realize that although you are taking 4 APs you don't need to take all 4 tests. Think about where you want to focus.
* there may be some quizzes you don't do well on. Think about what classes are cumulative - so if you don't think you are going to take the AP test and/or the information is not going to be needed in the next section (say, in English class you are missing a book discussion and then you will move on to something new) take the B on the test to get caught up.
* sometimes in the hospital you don't want to see people (especially with a nasty NG tube bringing up green bile). Then people come and you feel in better spirits. They may even be fascinated by the bile especially if they like biology
* maybe they are dropping a laparoscope to check things out. Or doing a resection ?
* if you have "failed" remicade the doctors will likely be looking for a new drug to get you into remission.

Take your phone charger with you to the hospital !!!!
Take your own twin mattress cover if you hate the plastic mattress
Don't be afraid to tell the nurses you are in pain, that's why they prescribe pain medication. As long as it is prescribed by the doctors, you can ask for pain relief help. pain meds will not keep you in the hospital longer.

* possibly ask your doctor for a referral to a dietician when you have recovered from surgery
* carefully consider what Popsicle flavor you will want when you get to eat again.
I'll be thinking of you!!
Posted 10/1/2014 3:58 AM (GMT 0)
One more thing... Consider bringing pj pants (fuzzy?) the hospital ones are giant, even in pediatrics. Shampoo, conditioner, comb, tooth brush/paste. Magazine(s) for when you start feeling better.
Posted 10/2/2014 5:33 AM (GMT 0)
Not only have I had 5 resections I also work in a hospital. The main thing I can tell you is the first couple days stink. By the 3rd you'll start to feel better and want to move around. Take walks in the hallways, and do deep breathing exercises, very important. It's ok to close your door at night. Nurses are loud talkers at night! Bring your music with you like an IPOD to help you sleep. Good luck to you sugar, we all wish you a speedy recovery.
Posted 10/2/2014 10:12 AM (GMT 0)
Thank you! I met with my doctor and surgeon yesterday and I know exactly what's going to happen now. I'm getting my pcc line in soon and then I'm going in surgery. I realized that I didn't explain my surgery well before. I made a typo and said I was having a stomach resection instead of a terminal ilieum one! I feel so much better now that I know what's going to happen (I found out I needed surgery days before it was scheduled) I'm lucky to have an amazing doctor and surgeon
Posted 10/2/2014 2:07 PM (GMT 0)
Hope you have a speedy recovery.. Hospitals can be scary no matter what your age (48 and still get scared).. Don't hesitate to ask for pain meds.. Never feel like you're a bother.. The nurses are there to help.. Keep us posted on how you're doing.. So many people here do care.. <3
Posted 10/2/2014 2:26 PM (GMT 0)
good job getting the information you needed, crohns1234. Best wishes on a successful surgery and an easy recovery.
Posted 10/2/2014 4:30 PM (GMT 0)
Good luck with surgery. We'll be thinking of you!
Posted 10/19/2014 1:12 AM (GMT 0)
Thank you for all of the support! It was so stressful knowing very little about my surgery at first, but my GI doctor and surgeon were amazing and answered all of my questions while putting me at ease about my surgery. My surgery was going to be laproscopic and was just going to be a terminal ilieum resection, but my surgeon found that I had a big stricture that was 99% closed! None of my tests ( upper GI, MRE, colonoscopy, endoscopy) showed that it was there. Luckily my surgeon double checks the whole intestine after she finishes surgery- otherwise I would've been facing a possible full obstruction. After 15 days in the hospital I feel a million times better than I did before my surgery.
Posted 10/19/2014 1:24 AM (GMT 0)
I'm glad you are home and got through the surgery. Take it slow with your recovery. I hope you recovery quickly and feel better soon!
Posted 10/19/2014 1:51 AM (GMT 0)
Crohn's1234,

Really hope you're feeling better soon. With the combination of the resection and Remicade, you should do quite well.

Surprised they didn't do a Small Bowel Follow-thru. That's the standard diagnostic procedure for a good look at the Terminal Ilium.
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