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Crohn's Disease Forum » Your Story » 21 Year old finally diagnosed


08-12-2015, 11:26 PM   #1
CorvetteSteve
 
Join Date: Aug 2015
Location: Central New Jersey, New Jersey
21 Year old finally diagnosed

Hi all, I am 21 years old and a student at Rutgers university in New Jersey. Starting about 6 months ago I started noticing small symptoms of what I now know is Crohn's disease. For the first 5 months I never thought much of it and it was not life altering more so just annoying. Well within the last month things have become exponentially worse. I have been in a major flair and just had my first colonoscopy done this week and it was confirmed that I have Crohn's disease. Within the last 2 months I have dropped from 175lbs down to 140 which is under weight for me being 6'3. For my future career field (law enforcement) physical size is something that is some what considered so continuing to loose weight is not an option.

This disease has become an extreme struggle with eating. Food is something I have always loved my entire life. When dealing with difficult mental situations food is something I have always turned to. It has been the one thing that could always make me happy no matter what, and now my life is much different. I have had to quit my job because I can not handle working in a flare and would be extremely light headed and nauseous (job included some heavy lifting). I have been avoiding fried foods, dairy, beef, and spicy foods. Basically the only food I have eaten in the last 2 weeks is grilled chicken and rice which I do love, however, 2 straight weeks of only having that is having me sick of it. I look forward to getting to know other people that share this disease with me and the things that they have done to reduce symptoms. I was just prescribed 2(20 mg) doses of prednozone a day and it has only been 2 days so I do not notice much effect. The worst part of the disease will be dealing with temptations. Going to school in a city there are many delicious places to eat, ones that I have relied on throughout my college career and it will be extremely difficult to fight those temptations. Hopefully I can learn a lot from this forum and I really looking forward to talking to all of you!
08-13-2015, 08:40 AM   #2
Tesscorm
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Hi Steve, welcome to the forum (But, am sorry you had a reason to find us.)

My son, also 21, was diagnosed at 16 years old. Right off the bat, I'll tell you that once he began treatment, he began to feel better, gained back the 20+ pounds he had lost and then some and has gone on since then quite well. So, there is light at the end of the tunnel.

Pred is used to induce remission but does not maintain remission. You didn't mention any maintenance meds?? Some of the maintenance meds take some time (weeks to months) to reach therapeutic levels and generally these are started together with pred - so the pred can take you into remission and, by the time you taper from the pred, the maintenance med should already be working. If your GI has not discussed a maintenance med, do ask him/her - both which med and reasons for not starting now?

Re diets, food does not trigger flares, however, once in a flare, as you've found, certain foods can worsen symptoms. For now, try to eat low residue/fibre foods, which are easier on your system. Many have also found that they have (or developed) intolerances to certain foods - some common ones would be dairy, gluten, etc. There are members here who have found controlling their ciet makes a big impact on their crohns. FWIW, my son can eat almost anything without problem. He does not eat many fruits/veggies, only because he doesn't really like them, so I'm not sure if fibre would be an issue for him.

To gain/maintain his weight, my son drinks one to two Boost shakes per day. In his case, enteral nutritional (EN) (liquid diet) was the treatment used to take him into remission. He's now on remicade but continues with the Boost shakes for a number of reasons - maintains a steady inflow of vitamins/minerals (school diets are not always the healthiest! ), convenience (if he's tight for time, he just grabs a shake to 'eat' on the run), he has one each morning so it replaces a less healthy 'fastfood' breakfast and I've read a study that supplemental EN can help improve remicade's success rate (although the EN was at a higher level than my son's). It's a good substitute for a meal if you're not feeling well (in fact, when inducing remission, the nutritional formulas actually replace ALL meals for weeks).

Hope some of this helps...

Tons of great members here with lots of advice and support!!! Feel free to ask questions!

__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-14-2015, 03:08 PM   #3
fuzzy butterfly
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Hi, just to say that the supplement drinks can be very helpful when you have trouble with food. I have used them for two years ish. Great for when I don't really want to eat as I do get days like that, even though iv had surgery and can eat what I want now,I sometimes just don't feel like eating. Hope you get sorted soon n best wishes..
08-14-2015, 03:43 PM   #4
Ian_H
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Hey and welcome!

We all know how you feel. Unfortunate that it is, we are all here to help. I was diagnosed at 18 and am now 26. I have had terrible flares and thoughts that I would always be in pain. But there are some amazing maintenance drugs out there that can help you achieve remission. I am like you with food. I LoVe IT! But you can find foods that trigger flares and also eat relatively healthy and it be tasty if you just do a little research. It's a trial and error in the beginning with foods and meds but once you find a routine life is much better. It took 4 years to find a medication combo that worked for me but we did. Ask your doctor about maintained meds. Best of luck and feel free to ask any questions!

Ian
08-14-2015, 05:41 PM   #5
teeny5
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Welcome to the forum! You can try out some food options that are safe for many of us, check out this thread http://www.crohnsforum.com/showthread.php?t=17707

I usually drink Ensure or Boost drinks when flaring and can't or don't want to eat.
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-15-2015, 08:31 PM   #6
CorvetteSteve
 
Join Date: Aug 2015
Location: Central New Jersey, New Jersey
Thank you everyone for the replies! Seeing that I am not the only one that suffers from this, and seeing that people are able to reach remission is really encouraging. I go back to the specialist next week so I will talk about maintenance medications for sure. I purchased a bunch of ensure drinks, planning on starting with them soon. Really scared of having to get surgery done but from what I've read on here it can actually be a good thing. Look forward to interacting with everyone more thank you for the suggestions!
08-16-2015, 01:06 AM   #7
BrettxW
 
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Join Date: Aug 2015
Location: Wallingford, Connecticut
I actually was in the same position as you, wanting to go into law enforcement. I actually had to give that dream up because of this illness. I will give you one main advice.....Do not prolong treatment like I did. I was diagnosed when I was 13...I came out of remission when I was 18ish...I lost all my dreams because I was to damn lazy to fix myself. Just two weeks ago, I was flying (I fly planes) and I felt a flare up...Rather then just deal with the symptom I decided it is time I kick this illness in the butt and live MY life and enjoy it! I have let so many things pass up in my life because I did not want to deal with a flare up out in public. I'm done with that!!! Its my time now! So please...Do NOT just try to fight the symptoms...Fight the illness, do whatever you can to get into remission and stay there. You are still young and you can still live all your dreams! I'm 30 now..I still have some time but my days of being law enforcement are over. So I'll just continue to fly for fun and live the life I never got to live before!
08-16-2015, 04:44 AM   #8
fuzzy butterfly
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Hi, Brett is right you have to grab this particular bull by the horns and rag its head off .... before it gets you, please dont let lt get the better of you because your better than it best wishes..
08-16-2015, 03:36 PM   #9
buttER
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Hi Steve
Sorry to hear you story.
Fighting temptations. I know that. It's really hard, but self-discipline is going to help you ALOT. If it means watching what you eat, making sure you have enough rest/sleep etc.
Its not always fun or sociable - I had to sit through a long wedding meal a couple of weeks ago and watch everyone around me tuck in to amazing food, with the people sitting next to me not very understanding of my position (it did give me time to mingle with the other guests though!), and I headed home at midnight before the party had really begun. But I got to see a wonderful friend get married, and that was the most important thing for me.
Good luck!
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