Crohn's Disease Forum » Your Story » Teen in constant pain

07-12-2015, 11:09 AM   #1
danialys's Avatar
Join Date: Jul 2015
Location: New York
Teen in constant pain

Hey! So I'll just start out by telling you a bit about myself. I am a teen starting High School this year. I love to read, write and draw. I am actually a published author. I have always just wanted to be a normal kid, but with all my medical problems, that doesn't seem like its ever going to happen.

My entire life I've had medical problems, but this year I was diagnosed with Lymphocytic colitis. I am in extreme pain every day. I missed four months of school this past year, forcing me to repeat that grade.

I have tried every medicine possible. I am an almost 100% vegan diet, as well as a no-gluten diet. I have come to the point where going to the doctors is pretty pointless because all they tell me is to keep waiting to see if my medication eventually works. Honestly, I'm tired of waiting.

From what I can tell, teens don't usually have lymphocytic colitis, and if they do its usually not that severe. (Am I wrong?) I honestly really hate being the "odd case", the person that has all of the medical problems that the doctors can never figure out. (I also have severe asthma, celiac disease, bursitis and major panic attacks). I am so tired of being sick constantly. Does anyone else know the feeling?

Symptoms: extreme stabbing pain in stomach that stops me from doing anything but lay down, constant nausea making me eat barely anything, constant dizziness, massive headaches at night
(none of the above are taken away by medicine)

How have you learned to handle the pain? Is there any pain medication that seems to work on you? What is a good way to distract yourself from the pain? Are there any activities that are easy to do when in pain? How do you continue participating in school while in pain? Is there such thing as a doctor specifically for lymphocytic colitis? (I have gone to about 4 different GI doctors in the past couple months and they've all been pretty useless.)

I have so many questions and it seems like no one has the answers.

Anyways, I feel all of your pain. Its so hard, but we just need to stay strong.
07-14-2015, 09:21 AM   #2
Join Date: Jul 2015
Firstly I would like to give you my deepest sympathies, I couldn't imagine what it must be like to be a teen in your social prime and have to experience the pain you go through. You asked a few questions about how to handle the pain or distract. Well it all honestly depends on how servere it is when your experience it. After about a year of being much like yourself letting the pain control my life I started to gauge the amount of pain I was in. If I could continue doing what I was doing without crying,shitting myself of puking all over then the pain I was experiencing was just a load of bullshit and it will pass. I can't say that it will work for you but it's what I do. You need to remember one thing with your sickness, all the people that are normal fuctioning people with normally fuctioning bodies are in my mind weaker tha n even the frailest one of us, the amount of courage it takes just for us to leave the comfort of our homes fearing accidents, pain or any other detriments we have to endure the amount of strength it takes to endure the pains of our angered bodies. We are truly resultant.
07-14-2015, 09:43 AM   #3
Join Date: Oct 2012

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I don't have lymphocytic colitis, but I have a lot of very unusual medical problems, I'm another "odd" one. My painkillers are: codeine - it works but it's addictive (as with all the stronger opiates, they work for me but they work too well!); amitriptyline - this is an antidepressant but it has many other uses besides, one being that it helps with pain, including some types of abdominal pain. But for me it helps with the pain because it's a sedative, so it allows me to sleep even when I'm in some pain, rather than treating the pain directly as it can do for some people.; and a very simple but effective one - a hot water bottle for stomach cramps.

What painkillers have you tried? What about anti-nausea meds?

What do you eat? Have you tried a soft, low fibre diet?
07-15-2015, 01:18 AM   #4
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Caitlin84's Avatar
Join Date: Jun 2015
Location: Milwaukie, Oregon

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How many specialists has you seen? It seems like they should be able to be managing your symptoms better. No one should have to be in pain like that all the time. Hope you find some support here.
07-16-2015, 07:15 AM   #5
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irishgal's Avatar
Join Date: May 2015

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I first got Crohn's disease at 14, so I know what it's like to try to go through high school in constant pain with weird symptoms that no one wants to talk about and wreck your social life. The mental pain of disease was sometimes worse than the physical pain for me, which is really saying something! I'm not familiar with lymphocytic colitis, but I'd advise you and your parents to keep looking for a GI who will truly address your issues and not just manage it with pain meds. I have a rare form of Crohn's, and the GIs seem to ignore me because they honestly don't know how to deal with it!

If you're at the end of your rope and really can't find someone in your area, you may want to call Dr. William Chamberlin. He helped me and is one of the smartest GIs I know. Plus, he's not the thpical condescending doctor. He treats patients with AMAT, but may know more about your disease than most GIs. If money is not an issue, you may also want to look into Dr. Borody in Australia. Another pioneering GI who runs a centre in Sydney with alternative treatments. Sadly, you'll have to be your own best advocate, which is hard to do when you're feeling so sick. I truly hope you find an excellent doc who can help manage your disease better! PM me if you want contact info for Dr. C.

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