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Hello, 17 year old just diagnosed with severe Crohn's

Hello any and all sufferers of tummy illnesses~ I'm a 17 year old who enjoys long walks on the beach, sushi, and not being in the hospital, thank you very much! I've always had problems with digestion. My parents thought the reason I had diarrhea so often was just me being a nervous nilly. I discovered last month that this is not so. I'd never really taken my tummy pains very seriously until I developed a rather painful anal fissure (if you'd told me a year ago that I'd be typing something like this on a public site-- I'd probably just giggle because you said "anal"...) that wouldn't get lost. So, went to the doctor and found out it was filled with some not so good things, so, off to surgery I went. I was absolutely mortified. I'd never even been in a hospital before, let alone for a surgery of any kind. I was a wonder-child. Never thrown up in my life, never gotten sick aside from the odd cold or two every few years. Now, I was sitting in a cold examination room, stripped from the waist down, mentally preparing myself to let a burly male nurse stick his fingers in some not-so-casual places. Well, the procedure went fine. They found that a large hole was present in the inner wall of my large intestine. It was described as looking like an ice cream scooper told a bit out of it. They thought it was strange, but didn't see a need to follow it up with any testing. I was given a lovely cream and sent on my merry way. A few weeks later, my mother finds me delirious, ranting about pine trees on the couch with a fever of 104. After my mother demonstrated her rather colorful vocabulary, I was driven to the hospital. It had not quite healed like they'd hoped. I wasn't given an antibiotic after my procedure and it seemed to have had unforeseen consequences. I spend three days in the hospital after having it drained again. The number count for people who'd stuck their gloved fingers up my bum was now higher than dates I'd ever been on... I was then given a colonoscopy.I will never be able to eat anything orange flavored again-- colon cleanser is the absolute worst. The results were okay, they couldn't find much irritation in the large intestine, but the end of the small intestine was all kind of wrong. They then said they needed to give me an MRI to look at my small intestine. The results of that showed that I have one of the worst cases of Crohn's in my small intestine that my doctor has ever seen in person. She advised I get 45cm taken out of it. Just chopped away. My poor little small intestine-- I could never part with it-- I'd like to think we've grown rather close over the years. My butt-doc (as I've fondly named her) decided she wasn't ready to start chopping quite yet, so I'm starting Humira in a few days. I'm nervous, to be honest. I'm just trying to get this under control before college in fall.

So, um, hello! Geez, I hope I did this right.
 

valleysangel92

Moderator
Staff member
Hello muffin :)

Welcome to the forum, I'm sorry you've had to join us, but I'm so glad you found us, this place is full of people who understand what you're going through and we all do our best to support each other with whatever is happening, you have no need to be embarrassed with us, there isn't much we haven't seen (or felt) before between us all.

I am a little surprised that the GI wanted to jump straight to surgery, did they say anything about why they thought that would be a better option than trying meds? Have you had any steroids? This is the usual starting point to try and blast the flare

I know this is all scary. Humira is a scary drug, but honestly a lot of people here have found that it works really well for them. The prospect of untreated crohns is a lot scarier. Hopefully you will be well on your way to remission by the time it gets to next fall.

If you do end up with surgery, there are many here who can help and support you through that too, I myself had a resection just under six months ago.

You can check out our treatment section for some information on humira and have a look at other peoples experiences, if there's anything you aren't sure of just ask us.

Also check out our teen section in the support forum.


A few little tips -

Keep a food and symptom diary, write down everything you eat and any and all symptoms you experience, including severity. A lot of people find that certain foods will aggravate the symptoms, but this is different for each of us so it does take some trial and error.

If you have stomach pain or cramp, hot baths or heat packs are really good, they also help soothe aching joints.

You know your body best, if something doesn't feel right, tell your doctor, or ask us here, there's no such thing as too careful with IBD.

Remember that with proper treatment, there is no reason for you to not lead a full happy life, you may not be able to party as much at college or you might have to be more careful with your diet etc, but as long as you know your own limits, college is more than possible, and so are all the other things .
 
Oh wow! Thank you so much for the advice! I've already started a food journal-- first on the list: chocolate--so sad! I have a really large amount of bleeding in my small intestine, and my hemoglobin levels are extremely low due to it. I guess it's so swollen, she's surprised I can even eat solid foods without extreme pain. She's hesitant to start me on steriods because I have a family history of aunts, uncles, and my mother reacting badly to them. They tend to gain weight very rapidly and feel generally even worse. I'm on Pentesa at the moment (and wow are the headaches I get from that bad), as well as 7 vitamins and supplements.
I've joined the teen forum as well. I'm so glad there are so many knowledgeable folks on here, because I have no idea what I'm doing haha
 

valleysangel92

Moderator
Staff member
No chocolate does suck, but you'll be glad to hear that a lot of people find that when the flare is controlled they can start to *slowly* reintroduce the problem food.
I can understand the concerns, steroids can make us all feel horrible, but sometimes they are a necessary evil. There is a steroid called entocort which is generally better tolerated than prednisolone, so that might be something you could discuss.
A lot of people find that pentasa just isn't enough for them, it is one of the weaker drugs used in crohns and is more suited to mild flares and sometimes maintaining remission.

We all start where you are now, it's a steep learning curve, but you'll get there :) .
 

valleysangel92

Moderator
Staff member
Have you been told if they think the narrowing is from inflammation or scarring? That would affect the treatment options that are available and what's likely to work well for you.
 

valleysangel92

Moderator
Staff member
Okay, that means there's a much better chance of medication being able to help, its not 100% definite that you'll avoid surgery, but there's a good chance. You may need to fiddle around with meds getting the correct dose etc for a while.
 
Location
Birmingham
Whoa... that's one way to be diagnosed... not the most fun... friggin terrifying by the sound of it... I remember the first time I got hospitalized and I was all on my own, they thought I had appendicitis and wanted to cut me open, then when they listened/discovered I had Crohn's they realised it was just inflammation. But I've never had anything as bad as you had it by the sound of things... though colonoscopy's really aren't fun are they =_=; least we share that... Also keeping a food diary atm tho :3 I think milk is bad for me...
 
I'm so sorry that you have received this diagnosis. I got sick at the same age as you. I'm now 44. The good news is there are lot more tools today to deal with the illness than when I was first diagnosed. I hope that you will find a great deal of comfort talking to people who understand what you are going through and know you can live a full and happy life with the illness.
 
valleysangel92: That's always nice to hear! I'd like to avoid that surgery in any way haha.
Emmy: I'm glad to hear they found out before they poked around your appendix! I'm lucky in that I developed symptoms before I'm out on my own next year at college.
GIGI69: Thank you very much! I'm really grateful for the kind words. It means a bunch at the moment.
JoFowler: Really? I'll do some research and bring that up to my doctor if she decides she wants to go with the steroid route. Thanks!
 
Hi there, Im 17 as well and just recently diagnosed so I know what you're going through. I know it may seem scary at first but I always remind myself that it could be a lot worse. I don't know how much you know about Crohn's but I found it beneficial to research and learn as much about the disease as I could, to in anyway improve my treatment. I hope you find what works for you
 
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