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Crohn's Disease Forum » Support Forum » Adults Who Were Diagnosed As Children Support Group


 
01-04-2015, 10:01 AM   #31
DavidL118
 
Join Date: Jan 2015
Location: Woodside, New York

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I was diagnosed in 98 when I was 9 years old. I'm turning 26 in a few weeks. I chronicled my whole story in the "Your Story" section on this site.(http://www.crohnsforum.com/showthread.php?t=69410). Its a bit of a read and I'm posting this on my phone right now but that is a pretty detailed account of what I've gone through.
02-28-2015, 11:35 PM   #32
CrohnsinMa
 
Join Date: Nov 2014
Location: Carver, Massachusetts

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Hi all! This was originally posted in the new member area, but now that I've discovered this group-seems fitting to introduce myself once again!

Hi there! I'll keep this as short as possible.

I've had Crohns for the past 36 years. I was diagnosed at 13 by Children's Hospital in Boston and was treated by the amazing Dr. Richard Grand. I wonder what he's doing now? Anyway, while under his care we were trying all the mainstay and still used medications(sulfasalazine, prednisone, asacol and many others!).

At 22 and a couple of resections later, I finally received a total colectomy/partial ileostomy-best decision I could have made at the time-and a brave one at 22!

Over the years I had the usual partial and painful blockages until my stoma ulcerated and I needed a revision of the stoma. Excellent! Not really.

After surgery my surgeon(wonderful man who meant well) was headed on vacation and wanted to see me happy etc...and removed my NG tube too early. This did NOT go well....my intestinal tract failed to "wake" and I ended up in cardiac arrest and staph Infection/steptic.

Yet another revision along with troublemaking adhesions removal a few days later would ultimately solve the problem-but leave behind enterocutaneous fistulas on the belly where the scar was located. Egads!

At long last, REMICADE started in 1995 and proved to be my savior as far as meds go. Other than occasional partial blockages, I've been doing wonderfully until I started receiving strange bouts of indigestion of late.

Hope you all are doing well!
03-13-2015, 11:16 PM   #33
grahamburgers
 
Join Date: Mar 2015
Location: Rhode Island

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Hi all!
I was diagnosed at 16 (that's still a child, right? Right.) back in April of 2004. (April 1st, actually. Heh.) Spent my junior and senior years pretty much in and out of the hospital.

The bright side to all of this was that my teachers pretty much decided not to give me any schoolwork and my GPA like skyrocketed. If you were a college looking at my transcripts you were thinking "look at this kid, turning his life around!" That was nice. :P

They gave me all kinds of medicines, but 6MP was the one that finally got me in remission. Even though I stopped taking it in college. (Kids, don't stop taking your medicine in college. Do what I say, not what I do. :P) Still, I didn't flare up again until 2012 -- they put me on Humira and that's been working pretty well. (I've had occasional symptoms since then but nothing really notable.)

My mom thinks I had symptoms when I was a very tiny kid but apparently the doctor just told her I ate too much cheese and didn't drink enough water.
05-05-2015, 06:08 PM   #34
sehart717
 
Join Date: Apr 2015
Location: Inverness, Florida

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I was diagnosed at age 7 and I am now turning 25 in July. I have tried almost every medication except for Naltrexone and Imuran. I am trying Entyvio currently because Humira and Remicade have quit working for me. I am very lucky because I only had one surgery colon related an illeocecalectomy 11 inches laproscopically and a gallbladder removal laproscopically.

Past Meds
Prednisone-hate this drug but only thing that helped inflammation at first
Pentasa-allergic
Cipro-did nothing
Flagyl-did nothing
Rowasa-not enough coverage for my affected areas
Canasa-same as above
Entocort-same as above
Levsin
Bentyl
Lomotil
Phenergan
6MP-first med that worked
Humira-7 years
Methotrexate-never seemed to work, just made me really tired
TPN-1 year
Remicade-tried twice with years in between, worked each time for a period of 4-5 months then quit working at the normal dose range, second time I have built up 4 times the normal antibody markers.
08-24-2015, 09:31 PM   #35
Corry
 
Corry's Avatar
 
Join Date: Aug 2015
Location: NOTL, Ontario

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I was first hospitalized at age four from extreme pain. They were aware of my immune system being out of wack but no answers. Coming from a family where sleeping excessively is frowned upon and constant pain and side effects never understood, I was made to eat foods that caused me pain and pushed myself harder then I should of.

The worse was the lack of understanding from Teachers for missing allot of school days, falling asleep in classes. The one thing I did have on my side was I could absorb and retain everything I heard, even though I excelled, the teachers still pushed and got angry.

Dreams of making the swimming team soon dwindled. The depression set it big time. No answers for anything. I was not raised on any processed food of any kind, which I'm sure helped immensely, didn't even know what kd was, lol.

Later when suspected, age 24, pregnant, I was so kindly, I'm being sarcastic, told, I would not carry any children to full term. Well I had four healthy beautiful sons and was a military wife and moved every year or two to another province.

Although the hard pushing and not understanding the pain, my God, the PMS! Painful periods twice a month... I think it forced me to get up and get moving and not feel sorry for myself, stay in bed and not dwell on it. I also went to college, have two diplomas and several art certificates.

Well, several surgeries later, and nearly fifty years old, its slowing me down and frustrating me beyond belief. My specialist told me once that 'i have never known life without pain', didn't even know anyone felt really good every day, never thought about it.

So, the one downfall was I pushed so much, no one was aware of what I was doing to myself, never mentioned the pain, hid it as much as I could unless when I'm anorexic.

So whatever path anyone out there chooses, its entirely up to them, I have much success and along with it allot of misunderstanding from family. They just cannot accept it or don't understand it. At this point resting, staying really hydrated and eating softer food, like, baby pabulum, makes a difference.

Wish someone would have told me, about allllllll the other side effects that would come. Not one doctor did, all over this country. Not one.

So I research myself, ask all my own questions and I'm learning that my limitations just mean I have to take a different path. Sounding too positive? Only because I'm trying to convince myself more then anyone else.

I honestly wish everyone out there so much luck and great care. Do what is right for you and keep researching everything. Its all out there. Who knew it would finally end up in my nose, down my throat and around my privates. Awesome right? I'm crying more, but I'll work around it, its the not knowing what's coming next that angers me the most.
08-25-2015, 01:51 AM   #36
Jennifer
Adminstrator
 
Jennifer's Avatar
Sorry I haven't been keeping up with this group. Thank you everyone for sharing your stories.

Corry, what's going on? Seems you got upset towards the end.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-24-2016, 01:46 PM   #37
penny3
 
Join Date: Sep 2009
Location: Berlin, Germany

My Support Groups:
I was diagnosed when I was 15, now I'm 28. I'm happy to have found this support group. I don't see any recent posts, but I'll subscribe here anyway just in case.
05-24-2016, 01:51 PM   #38
penny3
 
Join Date: Sep 2009
Location: Berlin, Germany

My Support Groups:
Hi all!
I was diagnosed at 16 (that's still a child, right? Right.) back in April of 2004. (April 1st, actually. Heh.) Spent my junior and senior years pretty much in and out of the hospital.

The bright side to all of this was that my teachers pretty much decided not to give me any schoolwork and my GPA like skyrocketed. If you were a college looking at my transcripts you were thinking "look at this kid, turning his life around!" That was nice. :P

They gave me all kinds of medicines, but 6MP was the one that finally got me in remission. Even though I stopped taking it in college. (Kids, don't stop taking your medicine in college. Do what I say, not what I do. :P) Still, I didn't flare up again until 2012 -- they put me on Humira and that's been working pretty well. (I've had occasional symptoms since then but nothing really notable.)

My mom thinks I had symptoms when I was a very tiny kid but apparently the doctor just told her I ate too much cheese and didn't drink enough water.
I had a very very similar experience! pretty much the same years and ages too! I wish i knew someone else was going through the same thing as me at that time!
03-30-2017, 12:26 PM   #39
Nadia96
 
Join Date: Mar 2017

My Support Groups:
Hi. I'm new to this site and obviously to this group. I thought I'd join to meet people who are going through similar things as me.

So I basically I was diagnosed with Crohn's Disesase when I was 9 (I'm 20 now). After two months of loosing 2 stone and having severe diarrhoea and refererred between three hospitals, I was finally given the diagnosis in December 2005. I struggled a lot when I was a child. When I was first diagnosed, I missed the first half of my school year and that time I had just moved schools, and the same again the year after as I was still new to the disease. I was quite an active young girl and to have this disease, changed my life. I went from playing football and hockey, to practically being bed ridden.

I tried all medication. I was on mesalazine, azathioprine, prednisone, the liquid diet and then finally remicade. My childhood and my teenage years were quite difficult. I still somehow managed to finish school despite missing thre majority of it with being hospital.

That was until 2014 (I was 18) when I took a turn for the worse. I had many relapses throughout my life, but it was never like this. I was on all the medication that I mentioned above and I had just started remicade. It was making me tired and I wasn't responding to it. I was in my first year of college and I was just about to finish for summer when I was suddenly admitted to hospital. They did scans, colonoscopies and all sorts of tests and all the doctors came up with was "we can only give you prednisone at the moment". A week later I was back in hospital and they put me on the liquid diet. I was off for 7 weeks in total from college.

Later that year, in October, I had another relapse. It was a Sunday even ending, I was at home and I suddenly collapsed from the pain and I was rushed into hospital. Over the next few days they did the same tests and then on the Thursday that week, the doctors came up to me and said "Im sorry. There's nothing more we can do other than perform surgery." A total colectomy at that time sounded so scary and I was an 18 year old girl who was about to have life changing surgery. That afternoon, the surgeon then explained the procedure and said that he wants do the surgery the next day as I was deteriorating quite rapidly. I had 4 hours to decide whether to have the surgery or not and in the end I went through with it.

It was a long road to recovery. I was in hospital 2 weeks and then another 3 at home before I went back to college part time. It took time to adjust to having a Stoma and colectomy bag and I had to have help from my mum for the first few months.

I am better now, although I was due to have surgery this year to join everything up, but they did some tests and I am unhealthy to have it as I am having flare ups. So they're going to put me on a new drug called vedoluzimab which I am going to start soon.

Sorry for the long rant lol
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