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Crohn's Disease Forum » Your Story » My story. Can I have some help?


11-15-2017, 12:21 AM   #1
Strong_
 
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My story. Can I have some help?

So, I never thought I'd ever join a crohns forum, but times change right? Anyways, I'd like to share my story and ask for some help as well. Thank you.

I was diagnosed with Crohn's disease when I was 6 years old. After that I have a successful journey with humira, but when I neared my 13 birthday, it stoped working. In fact, I spent my 13 birthday in the hospital. From then I switched meds to entivio, which also didn't work for me. I have been through a lot this last year.

I when through pain and struggles finding medications that work for a year and still to this day. I've have reactions to remacade. I've been poked with every needle in the book. I've had 2 surgeries for ostomys, 1 of which was on the Fourth of July. I've have so many hospital stays I can't even count how many I've had in the last year. I become dehydrated very easily so when I get my blood drawn, I get poked at least 6 times. I had to drink ensure drinks for 12 weeks. Nothing else. No food. Just 8 bottles of ensure a day. I had giant ulcers in my large intestine, I had to have 12cm if colon removed. All this made my mind think about a way to end everything.

I've convinced myself that I'm never getting better. I will never be in remission. I will never be okay. I will always feel pain. I even thought about suicide and called myself names because I know I'd never have the courage to kill myself. But sometimes I think about suicide a little more and think it'll put me out of my pain.

I also have a rough time in school. I have major trust issues due to having friends and then turning their backs to me. I learned that I can't trust anyone. Which is another reason I think about suicide.

Right now, I am in pain, wondering if there is any other solution to the problems I have. I know so much people have much more severe cases than I do and I apologize to them. I am 14 years old and I just want some help. Many of you guys are older than I am and I just want some advice to help me push through this. Thank you.
11-15-2017, 03:18 AM   #2
Sophabulous
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Wow, you have been through so much so young. You’ve had a rough time by anyone’s standards you poor thing.

Please tell someone you trust how you are feeling, nobody would want you to suffer in silence like this. I know it must feel like nobody will understand, but I think you really need to tell a doctor, and make sure you have some support around you.

Take care x
__________________
Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
11-15-2017, 07:35 AM   #3
Pilgrim
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My heart breaks for you. It is too much for a girl your age to have to suffer. Please be strong for the young girls coming after you, don't give up. Your friends at school may never understand (How could they?) I hope you might meet some other teens who have IBD. Then at least you have people to talk to who have a clue!
Maybe someone can chime in here with a support group link?
Keep talking. Talk to parents, doctors, counsellor. Remember that once you find another treatment that works, you will get your life back but it takes time, sometimes.
You sound like a strong person, reaching your limit. Don't give up.
11-15-2017, 07:43 AM   #4
valleysangel92
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Hello, welcome to the forum.

You've certainly been through a tough year, its no wonder you're struggling. Do you have anyone you trust to talk to about this? I'm in the UK so its a little different here but in our school we had counsellors we could speak to when things were bothering us, and it was sometimes a bit easier than talking to our parents. We also had a buddy system where we could be paired up with other students, usually older than us, and they would help us with day to day school life and help us make friends.

I know its a very difficult time for you right now, but you're not alone. Everyone here knows what its like to struggle with illness, and we are all here to support each other. I started having health problems as a child, and can understand how difficult it is going through your teenage years with an illness.

I know it doesn't feel like it right now, but those "friends" did you a favour by walking away. Life gets hard sometimes, and the only people you need around you are people that are going to stand by you when things get rough. Those people clearly didn't care enough to stick around and be there for you, so now you can find people that do.

I can't promise you this is going to be an easy ride, but I do think it will get better. It's really hard to keep positive and can be really tough to keep going when it feels like its a constant battle, but there are lots of people out there who will try to help you, and there are lots of people who are in the same position as you.

There are lots of drugs being developed right now, there are a few coming out in the next few years that look really promising, so there is definitely hope of better treatments and longer lasting remission. Please don't give up and please try and talk to someone, even if it's just us for now.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
11-15-2017, 09:45 AM   #5
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
So, I never thought I'd ever join a crohns forum, but times change right? Anyways, I'd like to share my story and ask for some help as well. Thank you.

I was diagnosed with Crohn's disease when I was 6 years old. After that I have a successful journey with humira, but when I neared my 13 birthday, it stoped working. In fact, I spent my 13 birthday in the hospital. From then I switched meds to entivio, which also didn't work for me. I have been through a lot this last year.

I when through pain and struggles finding medications that work for a year and still to this day. I've have reactions to remacade. I've been poked with every needle in the book. I've had 2 surgeries for ostomys, 1 of which was on the Fourth of July. I've have so many hospital stays I can't even count how many I've had in the last year. I become dehydrated very easily so when I get my blood drawn, I get poked at least 6 times. I had to drink ensure drinks for 12 weeks. Nothing else. No food. Just 8 bottles of ensure a day. I had giant ulcers in my large intestine, I had to have 12cm if colon removed. All this made my mind think about a way to end everything.

I've convinced myself that I'm never getting better. I will never be in remission. I will never be okay. I will always feel pain. I even thought about suicide and called myself names because I know I'd never have the courage to kill myself. But sometimes I think about suicide a little more and think it'll put me out of my pain.

I also have a rough time in school. I have major trust issues due to having friends and then turning their backs to me. I learned that I can't trust anyone. Which is another reason I think about suicide.

Right now, I am in pain, wondering if there is any other solution to the problems I have. I know so much people have much more severe cases than I do and I apologize to them. I am 14 years old and I just want some help. Many of you guys are older than I am and I just want some advice to help me push through this. Thank you.
I am 45 years old. I was dx when I was 42. That year I lost my father, got out of an abusive marriage. When I was 43 I was rushed to a hospital 150 miles from home. 6 hour surgery. I lost 2ft of intestines removed along with most of my colon and now have an ilieostomy bag. I lost my job, my home and my boyfriend. I thought suicide would be a good idea. It ISN'T! Now I'm getting my life back, I'm starting school the boyfriend is now my best friend! IT WILL GET BETTER!! I laid in that hospital bed for 5 months. Missed my granddaughters 1st birthday. I got a central line for my 44th birthday! I was so far from home i was alone. I thought I would never get over it. I AM SLOWLY!!! I am seeing a therapist. I keep my mind occupied. In time you WILL look back and say this was the darkest hour but I survived! DO NOT GIVE UP!! My son is deaf, when he was 15 an awesome athlete. He had college scouts looking at him. He was accidentally shot with a 20guage shotgun through his upper right arm. 26 hours of surgery. Told he would have LIMITED use. He has full use!! So see things can get better. They do get better! I don't think your friends turned their backs, they just don't know how to help. That's what happened with my bf. Now he's my BFF. I hope this helps. I'm praying for you! Never give up.

11-15-2017, 10:25 AM   #6
ronroush7
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I am sorry for all you have been through. You can always come here for support.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-17-2017, 09:46 PM   #7
David
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Hi there and welcome to the community. We will always be here for you but the first step you need to take is tell someone how you're feeling. Whether that's a parent or your doctor, please tell someone you trust about your thoughts about suicide. It's not something to be ashamed of, it's something you simply need help with. You WILL get better but you need better emotional support too and that can only come if you open up to others.

We're here for you.

*hugs*
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It's good to be back
11-17-2017, 10:27 PM   #8
cmack
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Welcome Strong,

I agree with everyone else, you should share your feelings with a doctor or a councilor at school. I'm so sorry to hear how badly you are feeling.

If you ever need someone to talk to, I will listen.


Best regards,

Chris
11-18-2017, 05:59 AM   #9
OleJ
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Hi Strong
Please believe things will be better. They will. You WILL get back into remission.
I am sorry to hear the biologics stopped working. I hope your GI is trying out other drugs that can bring you back in remission?
I think getting the disease under control would be important for your psychic well being.
Have your GI mentioned Methotrexate or 6MP? Those drugs are often used as a long term therapy when biologics fail. I hope you will get well soon.
11-18-2017, 08:35 AM   #10
scottsma
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Hello Strong...I can't add anything to all the above posts, but I just wanted to tell you that we have a "Young Adults" thread on the forum which you might like to look at.
I understand how low you feel,crohns is a terrible and often lonely disease.because some haven't heard of it or have experience of a chronic illness.Please tell someone how you're feeling.The first step is always the hardest.Sending hugs to you sweetheart.
11-18-2017, 11:35 PM   #11
lisadc1
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Praying for you! Please find someone, a teacher, an adult who will listen, anyone, to discuss your feelings. Being emotionally well will help with what you are/have been experiencing. Not an easy thing, Crohns, but you will look back and be amazed how this journey will open other doors for you. God Bless you with peace and good health!!!
11-19-2017, 08:02 AM   #12
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
Praying for you! Please find someone, a teacher, an adult who will listen, anyone, to discuss your feelings. Being emotionally well will help with what you are/have been experiencing. Not an easy thing, Crohns, but you will look back and be amazed how this journey will open other doors for you. God Bless you with peace and good health!!!
I fully agree go TALK to some one. Even if you just have to vent. I have a friend who isn't ill but has a high stress job. We vent to each other almost every day. Yell out the frustration and cry out the anger. I also see a therapist who has experience with chronic diseases. I'm praying for you. NEVER GIVE UP. When things level out you will see how strong you are.

11-19-2017, 10:27 PM   #13
my little penguin
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Completely agree with others talk to an adult
School nurse /gi /pediatrician/ parents
Most GI offices have a therapist just to help kids cope
Your GI could set it up
Ask to join CCfa
They have camp oasis
A summer camp just for kids with Crohns
To offer each other support
Kids who get what your going through

My child was dx at age 7
It is hard especially in the beginning
He is now almost 14 but doing so much better with his Crohns
Tell your docs what isn't working
What is causing pain etc...

Tagging
Jmrogers
Clash
Tesscom
Crohnsinct
Maya142
Farmwife
Mehita


All parents of kids with Crohns
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11-19-2017, 10:53 PM   #14
Maya142
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Hi and welcome! You are one tough kid who has had quite a journey. I also want you to try and talk to an adult - a counselor at school, a teacher, your mom...anyone you trust. It can really help to have someone listen.

My younger daughter was diagnosed with Crohn's at 16. Luckily, her Crohn's has been relatively mild, but she also has a form of inflammatory arthritis that is severe and has been very hard to control. She also has many other medical issues, including Gastroparesis and Adrenal Insufficiency.

It has meant many hospital stays, MANY different meds (she has been on a total of 8 biologics!) and many specialists. Lots of missed school - she has missed a year and a half of college now . Multiple feeding tubes because she became so severely malnourished - she even had to go to school (high school) with an NJ tube for 3 months. She was on 85% formula, 15% food. Now she has a G and a J tube, which have made life much easier.

All of this has been very hard on her - she misses her friends, going to school, having a social life - having even a "semi-normal" life. Every week is filled with doctor's appointments and physical therapy. In the last 3 days, we have been to ER twice for severe pain.

But we have hope that things will turn around - one day, we will find the right combination of medications for her and she will get her life back. There are lots of new drugs in the pipeline and there are researchers working really hard to figure out ways to control the disease.

We just have to keep working at it and hang on till we find the right meds.

She has found meeting other kids/teens/young adults with chronic illnesses (with arthritis or IBD or both!) very helpful. There are camps run by CCFA for kids and teens with IBD. You will find many kids like you there - you are not alone. Kids who have had multiple surgeries, PICC lines, feeding tubes, who have done the formula only diet, for months at a time. It doesn't make it all better, but it does help to know that you're not the only person out there dealing with this.

If you go to a children's hospital, they may also have a support group for kids and teens with IBD. Another option would be seeing a psychologist. My daughter was VERY against seeing one but thankfully, her GI insisted. It helped a LOT - just to have someone to talk to, someone who understood. Her psychologist works specifically with kids and teens with IBD and other GI illnesses.

Finally, does your GI know how you are feeling now? There is another biologic that was just approved last year - Stelara. That might be an option for you.

Hang in there. Things WILL get better.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-20-2017, 01:54 PM   #15
crohnsinct
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Just another voice adding to the chorus here. You young IBD kids amaze me. It is hard enough being a teen these days that when you add a chronic and out of control illness on top of it, it is extremely hard.

My daughter once said her life sucked. But when we sat down and really talked about it we came to the conclusion that her life didn't suck but what she had to deal with sucked. You have had some good remission times so I hope that you are able to also see that right now sucks but there is hope that you will experience those good remission times and that life is good.

There are lots of studies that show that there are far reaching psycho social aspects to this disease and many GI's and hospitals are recognizing and addressing this with their patients. I encourage you to talk with your GI and ask if there are trained professionals who can help you with everything you are dealing with. You don't need to go it alone. Let your parents, a teacher, a guidance counselor, pastor, youth worker etc help you.

Good luck and keep us posted! We are all here for you!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
11-24-2017, 02:34 AM   #16
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I'm new here so I don't know anything. I just wanted to wish you good luck. I know this is hard. Super hard.

Have you talked to your doctors about other potential treatments? (I'm still at that "researching all the things" stage.) I've read some good things about several different treatments we'll be looking into, like hyperbaric, MAP, fecal transplants... (sounds silly I know, but can't be worse than anything else...) I don't know if any of those are good but maybe they will be, who knows?

I wish you luck.
11-24-2017, 09:16 PM   #17
cmack
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Welcome Pangolin,

Feel free to come here often. There are a lot of smart and helpful people on this forum.


Your new teammate,

Chris
11-28-2017, 09:52 AM   #18
Jmrogers4
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So sorry I did not see this sooner, you have already been given some great advice. My son was 10 when he was diagnosed and is 18 now. I will say one of the biggest things that helped him was Camp Oasis where he was able to meet other kids dealing with similar issues. The support they have provided to each other over the years is nothing short of amazing even though they live in different states they are able to stay in contact through social media, skype, face time, etc. They also plan mini reunions throughout the year.
He has one friend who was just released from the hospital after 50 days as a patient and they skyped weekly. It's nice to have people who "get it". Find people to talk to - we are always here.
Keep going forward new therapies are always being researched. Please keep posting.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
11-28-2017, 12:13 PM   #19
Guerrero
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Hi strong, i've had crohns since i was young too, and i'm in my 30s now... had some bad time and some long years of remission. I''m sure you'll find a treatment that will work as good as was working humira for you before..
New innovative treatments will come soon, don't loose faith.
Hope you'll feel well soon.
12-10-2017, 12:21 AM   #20
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I was diagnosed when I was 10 (now 26). I had switched schools the same year I was diagnosed due to a long distance move. I decided that I would just tell everyone right from the beginning that I had crohn's and explained a bit about what it was. It worked out for me because everyone sort of knew what to expect. Anything abnormal I did they just assumed it was from the crohn's, and I never had to really explain myself, it helped a lot.

I'm not sure if the same method would work for you. Friends always jump around and turn their backs on you in high school, happens to everyone. Just know that it doesn't have to be a secret to "trust" people with. In most cases people will be more understanding toward you and demonstrate a little more patience rather than turn away from you.
12-13-2017, 10:45 AM   #21
erk
 
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Hello Strong, really hope you can get to talk to your doctor, or attend counselling of some sort to explain how you are feeling, as many people have said you do not have to suffer alone with your issues.

I'm 28, new to this forum and new to IBD. I have no idea what you must be going through being so young and facing these issues.
If my advice is any help at all: I was bullied for a long time in school, throughout that time I didn't have friends, I self-harmed, eventually I did attend counselling.
School is one chapter in your life, it may be giving you hell right now but the future will be better, I like the ethos that hardships we face make us stronger. Hope you're OK.
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