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


 
04-10-2013, 01:34 PM   #1
ProspectorsQuartet
 
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Adults Who Were Diagnosed As Children Support Group

About this Support Group

Hey everyone. This is a support group for adults to express how they managed the tough environment of childhood with IBD.

I myself started flaring up at age 12. it was very difficult to get through the day, especially the mornings. Worse of all, no doctor would touch me until I turned 18.

However, I used the struggle to motivate myself to focus on academics and extra-curriculars such as music to get through the battle.

In the end, I can say it gets better. Though I still have Crohn's disease, navigating life as an adult seems much more tractable than when I was a kid. But that is just my experience. I hope others can share theirs.

I hope to share more if interest picks up. And I encourage other adults to contribute their experiences. Anti-bullying is a much more prominent topic now than when I was going through school. To contribute in any little way I think will make a difference.

I'll also add the obvious which is this may also be a place for adults to vent about any painful memories that linger. That too is helpful. But if you do, please also share a positive story about how you have moved on from such events as an adult, or even when you were a child.

Last, the U18 club can also post, if the forum allows. Just make sure to have parental consent before viewing and posting!

Thanks!

-ProspectorsQuartet

P.S. I think it is important to keep a few things in mind when posting stuff that may be seen by younger viewers. This post says it best: http://www.crohnsforum.com/showthread.php?p=19260

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Last edited by Jennifer; 02-16-2014 at 03:37 AM.
04-10-2013, 01:49 PM   #2
emmaaaargh
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While I'm not an adult yet, I wanted to pop in here because I've been through this and come out the other side. When I was in primary school, I was teased quite a lot. At first, I ignored them - doesn't sound too helpful, but I threw myself into academics and am still using them to cope to this day! Eventually, though, I learned to give it right back. I think it shocked them a bit, but my literary skills came in handy for quick comebacks (;

My secondary's an all-girls school but I haven't really endured any cattiness there, only minor teasing about my height and intelligence. Everyone else seems fascinated (if slightly wary) of my Crohn's and my form group is pretty great when it comes to support. As for the short thing - well, these days I tend to hit back that since I'm growing extremely slowly/not at all, I don't have to go out and buy new stuff every few minutes!

But since I was young I've known that bullying is not a thing that has to go on forever. Showing them you're not to be messed with is quite a big part, I think, whether you do it by humour or by giving the insults back yourself. Still - it's definitely nothing to leave alone, because it IS serious, and it WILL have huge effects. I think the flare I had last year was triggered entirely by stress from school problems, where I'd come home crying every day because something happened and I had literally no friends.

Erm, there was going to be a point to this post, but I think I've lost it - so I just wanted to point out that you as a person know who you are, and you shouldn't have to become what bullies want you to be - because, let's face it, you're way better than that
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Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Humira 40mg fortnightly

Last edited by emmaaaargh; 04-10-2013 at 01:50 PM. Reason: autocorrect!
04-10-2013, 02:21 PM   #3
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I'll add that I had my share of fights. Luckily I was a decent fighter ( took Jiujitsu when I was very young before Crohns) and the results were always the same. The other dude got really messed up.

But I never picked a fight.
04-30-2013, 12:02 PM   #4
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While I'm not an adult yet, I wanted to pop in here because I've been through this and come out the other side. When I was in primary school, I was teased quite a lot. At first, I ignored them - doesn't sound too helpful, but I threw myself into academics and am still using them to cope to this day! Eventually, though, I learned to give it right back. I think it shocked them a bit, but my literary skills came in handy for quick comebacks (;

My secondary's an all-girls school but I haven't really endured any cattiness there, only minor teasing about my height and intelligence. Everyone else seems fascinated (if slightly wary) of my Crohn's and my form group is pretty great when it comes to support. As for the short thing - well, these days I tend to hit back that since I'm growing extremely slowly/not at all, I don't have to go out and buy new stuff every few minutes!

But since I was young I've known that bullying is not a thing that has to go on forever. Showing them you're not to be messed with is quite a big part, I think, whether you do it by humour or by giving the insults back yourself. Still - it's definitely nothing to leave alone, because it IS serious, and it WILL have huge effects. I think the flare I had last year was triggered entirely by stress from school problems, where I'd come home crying every day because something happened and I had literally no friends.

Erm, there was going to be a point to this post, but I think I've lost it - so I just wanted to point out that you as a person know who you are, and you shouldn't have to become what bullies want you to be - because, let's face it, you're way better than that

Openness and truthfulness is a good thing. Different people will handle it difference ways, but those who support you in your truthfulness must really be good friends!

I would have liked to have many more friends when I was in school, but I did have 2-3 friends that were my friends in-spite of my bouts with IBD. I was also perhaps more friendly than the average student with adults in school. That would include teachers, administrators and support staff like the lunch service people and the janitorial staff. I also got nice and friendly with the nurse for obvious reasons. I also talked with every teacher in the music department even if I was not in their class. (I really wish schools in the US would find a better way to deal with budgets and academic demands than eliminating music/art/theater/dance departments.) Btw, there are perks to being one of the few students who tries to get along with teachers and staff at schools (well, perks if you know the nice teachers.) For instance, one teacher used to feed me bananas at school because it was on of the few things I could eat at the time On top of that, I still keep in contact with some of those teachers even today, so there a long term benefits to befriending adults when in school.

I think that's why proper diagnosis is a very big deal. There are a lot of things you don't know about as a child, but to have a mysterious illness that you don't know how to characterize is really tough. I'm glad doctors are more aggressive in diagnosing these illnesses in children nowadays.

Last edited by ProspectorsQuartet; 04-30-2013 at 02:08 PM.
04-30-2013, 01:10 PM   #5
KWalker
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I don't have much to say right now but I was diagnosed at age 2 and am now 23.
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Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
04-30-2013, 02:09 PM   #6
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I don't have much to say right now but I was diagnosed at age 2 and am now 23.
No problem at all. Thanks for posting and checking out the thread! Feel free to share when the time is right.
05-04-2013, 05:12 PM   #7
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· Stoma
Vivid memories come to mind here:

1: Walking along the street at age 8 with my big sister (then 10) and my illeostomy bag fell off onto the foot path. My sister still laughs at how I just picked it up and carried on home, like it was the most normal thing in the world (I didn't want some poor passer by to find it...not exactly a pile of roses)

2: Telling my first ever crush Rory (he played in a band called limo reck, how cool haha) about my bag at age 15 and him lifting up his own shirt to reveal a huge chest scar before planting his lips on me

You know what... I have at least 2 good memories for every bad one, I would not change
a thing about my life xx
05-04-2013, 06:41 PM   #8
Cross-stitch gal
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Thanks for the site I'm an adult but went through some of the same things that Emma is going through right now. Will post more about that when I get the chance. Just want to let these teens know that I understand their pain.
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
05-21-2013, 10:04 PM   #9
Cross-stitch gal
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Here is my story and I hope this helps some.

As a kid I always was small for my age and underweight. In elementary school, it didn't matter as much because we all were fairly small and I seemed to blend in. However, in middle school things changed. Everyone was changing (growing up) and even though I too was changing, mine was a bit slower and I was still underweight and short. This was when I was teased constantly and even things were mentioned about my maybe having an eating disorder. It didn't help that I had pimples all over my face to boot.

High school was a little better, but not much. I was still teased & my self esteem never was very high. The summer I turned 16, I had my yearly doctor's appointment. Admitting at the appointment that I'd lost weight and answering a million questions, I was booked for test after test to see why. Even had medical tests into my Junior year in high school. I finally told my folks to forget it since nothing had been found & they agreed. Little did I know that if they would have done 1 more test they could have found my IBD. It was finally found just after I moved into the dorms at 18 & I had started bleeding from my anus. I'm still only 5ft and about 85lbs and am in my 30's. Don't have many friends, but do have a loving husband and family. So, I do feel pretty blessed
02-12-2014, 01:56 AM   #10
Jennifer
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Don't know how I missed this but I'm bumping it now.

I was diagnosed when I was 9 years old and am now 31 years old. I remember as a kid I was terrified of telling any of the other students about my disease. I wanted to tell the whole class at first but I was afraid of judgement. I told a couple of friends and they kept it a secret. As I got older (junior high, high school and college) it became a lot easier to tell people about my illness. For me it took a long time for me to accept that I had an illness that would always be part of my life and to get over my own embarrassment when it comes to some of the symptoms.

I have a lot of stories from when I was younger but I'll save them for another day so my post doesn't get so long to the point that no one wants to read it. :P
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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.
02-14-2014, 03:33 AM   #11
Jennifer
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I could have swore that we had a lot more members on the forum who are adults but were diagnosed when they were kids.
02-15-2014, 12:15 PM   #12
SarahBear
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Yeah, I think most of us just haven't noticed the group or misunderstood the title or something.

I was diagnosed at sixteen but I started showing symptoms at around age eight. Like Cross-stitch, I was always very small for my age. I attribute this only half to Crohn's, as genetics definitely played a part as well. I always looked very tired and wasn't exactly a picture of good health. In spite of that, no one took me seriously. For years, I would complain of stomach pain, and my mother would take me to the doctor… but only so that they would give her school excuses so she didn't look bad. She went in and told the doctor's I was faking it, so they dismissed me entirely.

I was never embarrassed to tell people about my Crohn's, although I was less open about it before than I am now. However, I never really formed friendships as a child because I was absent from school so frequently. I wouldn't really have had anyone to tell.
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Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

02-16-2014, 03:47 AM   #13
Jennifer
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I changed the title to this Support Group.
03-21-2014, 07:41 PM   #14
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I am new to this forum.

Here's my story. Male, turning 40 this year. Diagnosed at 12 with Ulcerative Colitis but always with a question mark on that diagnosis. Always usually 35 to 40 BMs a day. Lovely stuff.

At 13 ran away from Sick Kid's Hospital because my parents were signing paperwork for me to have an ileostomy.

Constantly picked on by those who thought they were stronger, better etc. all through High School. I still had some friends, but never anyone real close. No girlfriends til later in High School although I did send a letter to a girl I kinda of had a thing for which she decided to share with what seemed like the whole school.

Even got stuffed in a locker by a pile of guys on the swim team. Too Funny Right?

Repeated bouts with Steroid treatment and all the other fun treatments including transfusions and a Hep C scare. Early adulthood was somewhat of a decent time because it seemed like my diarrhea had disappeared. Now bowel movements were more formed but bloody when flaring, with the 'D' only when severely sick.

Diagnosis became Crohn's after I developed a Grapefruit sized abscess when I was 25. Had lost about 35 pounds in a matter of weeks. Drained, drained again, and healed, but I lost my job and benefits as a result of the scenario.

Started my own business from home in 2003 repairing Power Tools. Still doing it over 10 years later and business is good.

Next bout with an abscess came in 2006. Lost 55 pounds from August 1st til we spent my wife's 30th birthday in the Emergency Dept. on September 5th.

Since then, haven't really enjoyed eating any food because of such bad scarring at the ileocecal valve which shortly after that episode developed into an abdominal fistula with 2 tracts. One out the scar from the original drainage and appendectomy and the other tunnelling nicely through the muscles across the front of my right kidney and out the front.

About 4 and a bit years ago my GI who had been treating me since childhood sent me for a surgical consult. The surgeon said the colon was not totally destroyed, however, he needed something healthy to work with. Sent me back to GI (probably without specifying the suggestion for treatment with Remicade) but my GI's response were these EXACT words: "For Christ sake.. have the God Damn surgery or you are going to die. We are done dialoguing about this." (On a side note... this GI had sat and watched my mom die in 2004 of a B Cell Lymphoma that they could not pinpoint the origins)

Back to the surgeon who sent me to one of his colleagues in Hamilton and I have been on Remicade for the last 3 years. Now, after all this crap... the specialists have had me seek a surgical consult to which my only option is a Total Proctocolectomy with Ileostomy.

I have lived in so much pain and since childhood have feared what this surgery would do to my body. It doesn't help that my older brother used to call me Colostoboy growing up. I had self esteem issues all throughout my time with this disease but have never really let that get the best of me.

I have a wife (definitely supportive, but I'm scared how she will view me after this surgery) and 3 kids with 1 off to college in September.

I got a call 2 days ago with a surgical date of April 2nd which I had to turn down because I am still trying to prepare my business for a big shutdown, do taxes, and cope. Waiting to see a Psychaitrist in my clinic in Hamilton to help me organize my thoughts and hopefully give me some insight. The appointment from this past Wednesday was rescheduled for a month from now.

I am very sorry for being so long winded, but this is my situation. As a child I definitely felt low self worth. As an adult, I feel defeated as far as the disease goes, but I have to carry on somehow because of my family.

Thanks if you spend the time reading my whole story.
03-21-2014, 09:01 PM   #15
Jennifer
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Thank you for sharing your story with us PowerToolGuy and welcome to the forum!

I definitely had the same feelings as a child and often have those feelings of defeat as an adult. We're still here and doing the best we can after all these years. I'm sure your wife will adjust to the stoma as she loves you no matter what.
03-21-2014, 09:23 PM   #16
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Thanks Jennifer. My coming weeks and months are certainly going to be a challenge. Just glad I'm not a kid anymore.
03-22-2014, 02:20 AM   #17
Cross-stitch gal
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PTG, thanks for your story! Please keep us updated on how you're doing and how your surgery goes. Welcome!
03-22-2014, 03:36 PM   #18
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After last night (so much pain and fistula related skin irritation), I sometimes feel surgery is going to be my best option. It is such a daily struggle thinking that I am going to have to make these adjustments.
Then I read about possible new treatments. While these treatments won't take care of my fistuala, if I could get the Crohn's under control, I would be able to have resection surgery and possibly remain whole.
I guess I am still just that scared 13 year old feeling like I have to run away.
Not sure it's any easier for someone diagnosed as an adult, but, the only universal truth about Crohn's is that it affects everyone differently no matter what the age.
Thanks everyone for the support. I only hope I can offer the same words of encouragement after I have faced whatever my immediate future holds.
06-27-2014, 12:00 AM   #19
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Diagnosed on my 16th Bday 1992!!

Has anyone else ever felt as if they wrestling with time?

I always have with the Crohn's ya never know when it's gonna flare, so for me I have always rushed everywhere in my life, until recently when it got me and knocked me on my butt...pun intended.
06-27-2014, 09:42 PM   #20
Jennifer
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Has anyone else ever felt as if they wrestling with time?
All the time.
10-03-2014, 09:47 AM   #21
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Double posted... Deleted one.

Last edited by PowerToolGuy; 10-03-2014 at 09:50 AM. Reason: Double post
10-03-2014, 09:48 AM   #22
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Been away from things for a while. Have not had surgery, but going through a living hell with the thought of surgery. It is a daily struggle to try to keep positive thoughts.
My only surgical option given is Total Proctocolectomy with Ileostomy and removal of rectum and anus.
Have been seeing a Psychiatrist on a regular basis who now thinks I am on the fringe of depression.
I own a small business which is already in chaos if I miss a few days of working. Can't really have anyone do the work, although my son and nephew help out. Knowing that I will have a 3 month recovery means probably at least 1 month of no work at all.
I work from home so people will still always be knocking on the door which adds to the dilemma. My question to myself now is should I quit something that I have spent 11 years building up or should I just let it float in a life jacket while I spend time recovering from surgery? I work from home so people will still always be knocking on the door which adds to the dilemma.
Not sure how I have kept my sanity for so long, but I think I have become hardened having lived 28 years of this hell.
Anyone know what kind of results the QuBiologics study group are getting?
10-04-2014, 07:46 PM   #23
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Just found this group... thanks for being here.

Being a kid with this disease is an unfair pile of crap, eh? I was 15 when I was diagnosed but I had symptoms for years before making it official. First time I went into the hospital everyone kept saying "oh, it's probably just his appendix... not a big deal!". My dad and a couple brothers had their's out so I figured I was next in line. Tests were done... stayed in the hospital for a few days... a determination was made... then I was pretty much done being a kid.

I think that's the worst part of being diagnosed as a kid, right? Being forced to grow up so fast because of all the information that you're forced to absorb. I guess I was old enough that I really didn't consider myself a "kid" anymore but I know I wasn't old enough to easily accept what this disease meant in comparison to the rest of my life. I didn't even have my driver's license yet but I watched my three older brothers grow up and I had a pretty good idea of what I should expect with responsibilities and parties with friends and going out on a date and... all the normal stuff that people do. When I think back and compare my life from then until now to how I saw my brothers I feel 100% cheated. There's so many little things that I just don't relate to that all my friends and brothers still talk about that I wasn't around for because of some test or not feeling good. I feel cheated for this as well.

Since then I really turned out a little different from my brothers. Even at family gatherings I just feel like the odd one out, you know? There's just that elephant in the room that I don't think anyone in my family really knows how to talk about... so we don't. Same with the once every few years that I see an old "friend" from school. I know that people grow apart but it seemed to happen immediately after graduation. It hasn't so much happen with my family but I can't say that I really talk with my brothers outside of holidays. They all have kids now... I refuse to have my own with the thought of the possibility of passing this disease along to another kid who is forced to give up their childhood.
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11-09-2014, 08:01 AM   #24
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Ok... so here goes my recent story. Almost 8 weeks ago really started feeling lousy. Was still interested in fighting/avoiding surgery. Then for 2 and a half weeks before Canadian Thankgiving I pretty much didn't wake up because of all the painkillers I had to take. Turns out I had developed and abscess the size of an orange in my abdomen.

Got into my clinic where they sent me right over to see the surgical team and by the next day I had a drain tube in and was already feeling better. Having not eaten anything for about 4 weeks I had lost 35 pounds. I was weak and still am.

Fast forward to today. I have now decided that I will go ahead with the total Proctocolectomy with removal of all the back end. Nothing post surgery could be worse than the feeling I have had for the last 8 weeks of watching my kids and wife see me suffer.

I am still that little scared 13 year old that ran away from Sick Kids Hospital when I was 13 but this time I am going to face the demon. I am a 40 year old man who is tired of having this disease beat me down and force me to run away scared.

Will post the odd update of my progress as things happen, but can't have surgery because the abscess isn't 100% gone yet and that side of things is getting ugly.

Last edited by PowerToolGuy; 11-13-2014 at 01:52 AM. Reason: spelling
11-18-2014, 09:15 AM   #25
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Been in the hospital for about a week with a drain into another abscess site deeper. Had 3 sites they wanted to try to get drains into, but one had cleared out on its own the night before admission, the other was small and hard as a rock.

Had a PICC line in Friday afternoon and am receiving TPN. I am feeling much better than I have in the last 8 weeks or so and am in a holding pattern waiting for the all clear from the Surgeon that he can do my surgery.

Getting day passes every day so I can go home and see my family, the outside world and just get some plain old work done. Self employed and no assistance available sucks.

Hope the coming weeks go as smoothly as possible and I can be out for Christmas.
11-25-2014, 08:09 PM   #26
Carrie
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I think how I was diagnosed with Crohn's is unique based on the stories I've read on Crohn's Forum over the years.

I was diagnosed when I was five or six. During my pre-kindergarten physical, some blood work was done and the results indicated I was anemic. My primary care physician referred me to another set of doctors to do some investigations. At the time, there wasn't any real indication that something was wrong. I don't remember suffering any pain, and I don't remember feeling unwell until later that year (maybe it was caught prior to my first real flare?). When I finally began showing symptoms, I'd have uncontrollable vomiting and pain, but not much else, and things were mostly under control by the time I entered first grade. I think once I had a confirmed diagnosis (I underwent scoping and all the fun stuff--luckily, I barely remember!), the doctors were able to administer the appropriate meds, and my body reacted reasonably well.

I did fine until sixth grade when I had to have my first resection. I got my first PICC line at the time, and remember being relieved I didn't have to participate in gym class as long as I had it. Physical activity was always hard on me as a kid, and I think it was all due to my Crohn's. I did really well after my first resection, but started getting really sick again in my freshman year of high school. I don't remember having much pain at first, but my doctor was concerned I wasn't growing (I think I was under 5 feet and around 70-some pounds), so I was given another PICC line that January/February, which stayed in place until June or so. I started feeling really symptomatic shortly after the PICC line came out, and I had my second surgery just before starting my sophomore year. Luckily, that was the end of my major Crohn's drama during my school years.

Oddly, it probably wasn't until high school that I realized that my digestive system functions completely differently than most people's. For that, I am grateful. As an adult, I'm fully aware of all the embarrassing noises and smells that come along with this disease, and I stupidly let something I cannot control embarrass me. If only I could reclaim that innocence!

I've been mostly healthy in adulthood. I went 12 years before having another surgery three years ago (definitely the most traumatic of the three thanks to the NHS in England), and I've been mostly fine since (my doctor and I are still working out a few kinks).

I think to a twisted degree that it's better to be diagnosed at a young age, than it is to be diagnosed when your a teenager or adult. Crohn's has been my normal for as long as I can remember, and I can't really imagine it being any other way.
12-11-2014, 04:07 AM   #27
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So here is my final posting before I have my surgery. It has been a long month in the hospital and the day has finally arrived. I have been up all night with pain due to other complications that had arisen in this timeframe and one last hoorah from my Colon which decided to crap the bed while I was sleeping.
Don't know how everyone else is feeling right now, but my self confidence, and worth (or feeling lack thereof) have been running laps in my mind. Only another 2 hours before I am wheeled down for my prep then my operation. About time I said goodbye to my stupid prick colon and hope to have a healthy new relationship with my small intestine greeting me every day. Not too sure how I am going to pull through today, but I will be back around soon to check in with an update.
Til then... wish me luck
12-13-2014, 09:15 PM   #28
PowerToolGuy
 
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Join Date: Mar 2014
Location: Brantford, Ontario

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I am back and pulling through excellent according to my surgeon.

He didn't know how I was still functioning based on the garbage that he had to cut into. My right side was like cutting into cement. The rectum was totalled.

In all, surgery was 6 and 1/2 hours followed by 7 hours of hell for my wife in recovery. I was swollen beyond recognition and non responsive from a respiratory stand point. They had pumped me so full of pain meds that I was not coming around.

Within 18 hours of surgery I had my first walk. Today I have been out for 4 walks. My ostomy if functioning just as it should, my pain is very low and my confidence it through the roof.

It's amazing. Think my wife deserves the medal! Not sure she will ever tell anyone how she felt that day, but she has been right here by my side, helping me. Will keep everyone posted on my progress. Surgery was Thursday at 7 am and my expected discharge to home is Monday/Tuesday.

Thanks everyone for your continued thoughts.
12-22-2014, 07:53 PM   #29
Carrie
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Join Date: Mar 2011
Location: San Mateo, California

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PTG, so happy to see you're already feeling better and happier. I wish you a super speedy recovery!
12-23-2014, 04:53 PM   #30
glory_h
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Join Date: Sep 2011
Location: Portland, Oregon

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I was diagnosed while in high school. I started having symptoms early on, but it took them a while to figure out the problem. I was told (by doctors!) that I was depressed, or anorexic, or a myriad of other things. Finally I was diagnosed sometime in my late junior or early senior year.

I was so out of it for so many years that I feel like I essentially missed out on being a teenager. After my surgery (in college) I really had a tough time emotionally, trying to make up for lost time and do all the things that teenagers were supposed to do and experience. It was not a good thing!

Still have a hard time connecting to others who talk about their teen years...
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