When did you start noticing that something was wrong?

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AndiGirl

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I was not diagnosed with Crohn's Disease until I was 32 years-old. As I look back now, I think there were many warning signs that something was not right with my digestion even from a young age. My parents, doctors, and I didn't know it then, but I am starting to see some possible connections and links to IBD. When did you notice that things were wrong with your health?

When I was between the ages of four and ten, I had numerous problems with my throat. I was constantly getting strep throat and tonsillitis. That was back in the 1970s and early 1980s when the usual treatment was a giant shot of penicillin in the butt. OUCH! My parents practically begged the doctors to remove my tonsils. No luck, though I did eventually get them out when I was in college. Back then doctors had changed their minds about tonsillectomies and were more reluctant to remove them than in years past. I must have averaged about three to five infections a winter. That was when I started hating doctors and hospitals. I developed a real fear of them. My mother was an RN (she didn't work at the time because she was staying home with us kids), but she usually left my doctor's visits particularly those involving shots to my father.

Around the age of six I developed a fever and body pains of unknown origin. It didn't last very long, but it really confounded my doctors and parents. When I was in the second grade, I had lots of problems when it came to eating. I frequently felt very nauseated after eating meals. At school, I had a very understanding teacher who let me lay down at the nurse after lunch. I would lay down for about 10-15 minutes and would be up and at em again.

I was pretty strong and healthy from the age of 8 until about 16. I noticed the nausea, body pains, and difficulty with eating and foods returning at 16. From then on it was downhill. I noticed that I would have periods of feeling good, strong, and healthy, then I would go through terrible indigestion, stomach upsets, and other symptoms. It make sense to me now.

I may not have had the active disease at a young age, but in looking back, my health didn't seem right even then. I've also noticed a pattern. My brother who also has Crohn's also had numerous throat problems. We both seemed to get strep and tonsillitis the same time. Our sisters were never bothered with it. I shared a room with one of them, who never caught it. They probably had two throat infections throughout their whole childhood. In reading I have discovered that Rheumatic Fever is considered an autoimmune disease. Strep is unfair in how it treats it's victims. I've read that some people can have it and not get treatment and recover on their own, while others will end up with a horrible case of Rheumatic Fever. I found out that my mom's sister, and one of my dad's brothers had Rheumatic Fever. It makes me wonder if all the throat infections were an indication that my brother and I had faulty immune systems. Pair that up with our family history of CD.
 
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When did you notice that things were wrong with your health?

When I wiped and saw nothing but blood on the toilet paper then got up and saw the toilet was full of blood. I was 9 years old and showed my mom then we went to the ER and the rest is history. Before then I was sick a lot with what seemed like the flu and it would last for months. My sister and I were being treated for problems like ear aches and leg aches as well as the flu but that was never what was causing it I'm sure.

It makes me wonder if all the throat infections were an indication that my brother and I had faulty immune systems. Pair that up with our family history of CD.

I don't think there's any doubt about that. Same thing with me and my siblings. My sister and I would get sick far more often than our other sister and brother. Two of us have Crohn's, the others are perfectly healthy thus far and let's hope it stays that way.
 
Let's just say I had no idea 1 bm/day was the norm.

When it turned to D and reached 10, 15, or more per day, I went to a doctor (this was the one who told me "it's just normal for some people"). That would have been the early or mid 2000s.

And then in 2008 I knew that I was having stomach problems, but it was just lots of discomfort and bloating and gas, not something that was serious enough to warrant a visit to a doctor, especially since we knew I was lactose intolerant.
 
In April last year I spent a week in agonising pain every afternoon and vomiting every night. I thought at first it was just a bug, but after a week my boyfriend took me to A and E.

Looking back, I have always had tummy troubles- attributed to lactose intolerance- and for about a year before becoming really ill I got every bug going, including colds, flu, tummy bug, throat infection etc. I spent more time off ill in that one year than the rest of my working life put together!
 
When I was 16 I didn't really eat. I was on the track team and practicing two hours several days a week on top of PE class and teaching snowboarding on the weekend. It finally got to the point where I was so exhausted I had to evaluate whether I really wanted to keep living like that or if eating was worth it to have energy. I chose to start eating again, but I've been exhausted ever since. Also that's when I started having daily hiccups.

Then I went to college and my dad died my freshman year and it all started getting real. I messed myself once while lying in bed. Not fun when you have to walk down the hall of your dorm to the shared womens bathroom. That's when it started being all bile-y too. I thought it was because popcorn consisted of like 50% of my diet. But apparently not!

After I graduated three years later I started working, and that's when the severe pain (thought it was my appendix) struck that led to my diagnosis.
 
i used to get kinda stomach aches cramp style pain in my late 20's and bouts of D.then i felt quite ill and was dx with gastricitis or whatever they called it.i got treated but a while later i starting loosing my appetite which for me was weird then the weight just dropped of me in weeks.about 3stone and i would sstsrt to get gurgling noises and severe pain.eventualy i would see a big lump sticking out my stomach which turned out to be the inflamed infected part of bowel.after the full dx to which i was glad of coz i'd convinced myself i had the big C or something.had my resection not long after and was in remmision for a few months then whack it was back with avengance.anyhoo things could be worse......
 
From the age of at least 16 my stomach was occasionaly very sensitive and I used to get, occasionaly, very bad stomach pains.
Then at 19 when I couldn't finish a single meal (apart from lunch as so empty by then) without running to the toilet, I knew something was wrong.

(mis diagnosed with IBS at 20, IBD confirmed last year, still waiting for exact dx)
 
I'm 31 and currently still undiagnosed. My health started doing some weird stuff the year I turned 20 - I remember that year well, I felt like I was becoming very old because of all the weird stuff that was happening to me! In that one year, I became lactose intolerant, developed motion sickness, and started getting recurrent UTIs. I also remember that I started getting anal fissures around that time and I had a somewhat "sensitive" stomach, but didn't have any other IBD-like symptoms until more recently.

Fast forward to late 2009. My "sensitive" stomach has been more sensitive than usual lately, and then suddenly one day in October I go from feeling fine one minute to being super sick the next. I am hit with a massive wave of nausea, abdo pain, dizziness, shaking. I went home sick from work, and a few days later was so sick I felt like I might just die. I went to urgent care and was told it's gastroenteritis and was given IV fluids. Eventually I start to feel somewhat better, but the gastroenteritis symptoms never completely leave me and after about 6 weeks I am hit with the same symptoms again and again. At that point I realize it's something chronic and I start to do research and get referred to a GI. And that's more or less where I'm at now!
 
I have often contemplaited the "before CD" years. As a teenager I had frequent bronchial infections and many rounds of antibiotics that I feel contributed to c-diff and the onset of crohns. The real kicker was my Dad passing away. The combo of a wiped out immune system and the stress of losing a parent was too much for me. I still feel like one day i will just feel better and it will all go away.
 
I was 11 years old when I started getting stomach cramps. Nothing big. it was a few cramps here and there for a few minutes. As the weeks went by they started to be more and more frequent and painful. I lived with my father and his new 18 year gf (I hated her LOL) at the time and she thought I was faking not to go to school. I was a 90% average student always were and very sport oriented. It was not like me to fake an ilness but she ws to stupid to realise it.

All this to say that after being in so much pain I finally decided to go by myself at the hopital and seek help. Lucky for my father it was our family doctor that was on call when I showed up. After checking me out he called him and told him I needed to be brought to the children's hospital for test. A few weeks later and tonsd of test I was told the good news... Unholy plague forever desease!!

They tried tons of stuff to reguklate me back in the late 1980 there was not much they could do. I was on pred 100 mg a day with a few other things I forget. They put me on a tube up my nose treatement without any solid foods. That worked I was not sick at all while on that treatement. As soon as I stopped though the pain came back.

When I was 13 they finally operated me and removed 2 feet of gut. After a few complications like poo coming out my drain I was cured. Never had any problems until I was in my early 30 when everything started up again. Now I am wiaitng for remicade I've had D for 4 weeks strait now... Snif snif

My poor story!
 
I'm 31 and currently still undiagnosed. My health started doing some weird stuff the year I turned 20 - I remember that year well, I felt like I was becoming very old because of all the weird stuff that was happening to me! In that one year, I became lactose intolerant, developed motion sickness, and started getting recurrent UTIs. I also remember that I started getting anal fissures around that time and I had a somewhat "sensitive" stomach, but didn't have any other IBD-like symptoms until more recently.

Fast forward to late 2009. My "sensitive" stomach has been more sensitive than usual lately, and then suddenly one day in October I go from feeling fine one minute to being super sick the next. I am hit with a massive wave of nausea, abdo pain, dizziness, shaking. I went home sick from work, and a few days later was so sick I felt like I might just die. I went to urgent care and was told it's gastroenteritis and was given IV fluids. Eventually I start to feel somewhat better, but the gastroenteritis symptoms never completely leave me and after about 6 weeks I am hit with the same symptoms again and again. At that point I realize it's something chronic and I start to do research and get referred to a GI. And that's more or less where I'm at now!

These sound like eerily familiar symptoms, and after discussing gallbladder issues with others to death lately, I have to ask: have you had yours out?

As for me, I'm undiagnosed, but I wanted to interject about the throat problems. I had them my whole childhood, along with pneumonia. I had a couple gut problems, but what's weird is I never really even vomited as a child, nor did I seem to contract viruses like norovirus. The throat thing has always been chalked up to the ludicrous amounts of second hand smoke I was subjected to, and that my immune system just couldn't handle it. I now have permanently swollen tonsils.

Looking back now, from the age of 11 onward, there were a few times I was struck with horrible pain around my navel for no apparent reason. I also have a history of getting intestinal symptoms with every single virus I get. I realize, though, that IBS can be triggered in virtually the same way as IBD sometimes, which is frustrating and bizarre.
 
I have only been diagnosed with crohn's for around 2 1/2 years but like a lot of others I think it went on for a lot longer.
Like Andi I had a lot of problems with my tonsils and had them removed. I have always had problems with my ear nose and throat and I am being referred back to ENT as they think I may need some surgery on my nose to help with my breathing.

I was also monitored from a young age because of my weight and height this to me makes me think it was my crohn's. My mum says that I would refuse to eat and I would only have yoghurt I don't remember this as I was only around 5. I also had problems with constipation from a young age and was terrified of going to the bathroom.

By the age of 12 I was doing a lot better put on some weight and started feeling better but I always had problems with my hips which I have now been told is arthritis from my crohn's , along with a few other places like chest, knees, ankles and fingers... Oh joy lol.

I was finally diagnosed when I was 19 after being ill for over a year, it started off with a lot of D after a holiday to Spain and thought it was a stomach bug. Going backwards and forwards to the docs until they finally referred me to the GI... Hooray.

Slowly I feel my symptoms have got worse and each time I flare now seems to be something new thrown into the mix, but hey it all goes along with it.

X
 
These sound like eerily familiar symptoms, and after discussing gallbladder issues with others to death lately, I have to ask: have you had yours out?

I have not had my gallbladder out - I've never had surgery of any sort. When I first became ill they tested me for seemingly everything and I believe they did check for gallbladder issues at that time. All my tests came back normal (except for one which said I have low sodium - the doctor literally told me "eat a bag of chips and you'll be fine").

My doctors seem to think I've got an IBD and I agree with them. My symptoms fit (in a flare I get the really fun symptoms like night sweats and joint aches) plus the fact that I respond well to prednisone and Entocort. Those don't work unless there's something for them to work on.
 
I have not had my gallbladder out - I've never had surgery of any sort. When I first became ill they tested me for seemingly everything and I believe they did check for gallbladder issues at that time. All my tests came back normal (except for one which said I have low sodium - the doctor literally told me "eat a bag of chips and you'll be fine").

My doctors seem to think I've got an IBD and I agree with them. My symptoms fit (in a flare I get the really fun symptoms like night sweats and joint aches) plus the fact that I respond well to prednisone and Entocort. Those don't work unless there's something for them to work on.


True that! Hope you can find out where it is soon.

KayleighMeek said:
My mum says that I would refuse to eat and I would only have yoghurt I don't remember this as I was only around 5. I also had problems with constipation from a young age and was terrified of going to the bathroom.

This was me to a T. I also had leg aches, always around my left ankle, but I've never really had lingering joint pain otherwise. It doesn't help I have Marfanoid habitus that gives me hypermobile joints, though.
 
Forgot this one! When I was in my late 20s my dentist noticed some sores in my mouth. He thought it looked like CD. I guess he had other patients with CD. That was before I was diagnosed, but was having plenty of digestive troubles.
 
http://www.youtube.com/watch?v=zEXqRth5FnE&feature=related

slight joking aside :) ^ that was me in school lmao

i started to have problems at about 17 getting toilet trips went through the roof almost overnight from what i can remeber of it , i was sick alot and thought nothing of it , until it got unbearable, led to a diagnosis of GERD and belly symptoms went quiet for a long time and came back last year an have continued since really..
 
In 2006 i visited the US for a holiday and had a horrible bout of diarrhea whilst there, this kind of continued for the following year and i would have some severe pain and blood too at times. I found it quite embarressing so insteasd of seeing a doctor i self diagnosed myself with IBS, i starting taking immodium quite a lot and even bought some IBS "Cure" tablets online, it was only after i had lost quite a bit of weight and started feeling ridiculously tired that i saw the doctor and was diagnosed after a scope.

Now i think back, when i was at college (2002-2004) i started feeling fatigued very easily and even before that i struggled with standing up for long periods without getting pain in my lower back.

I did actually have a period where i thought that during my trip to the US i had drank some 'bad' milk and thought the Mycobacterium paratuberculosis bacteria (MAP) was the cause of crohns so stopped drinking milk. I learnt my lesson, dont believe everything you read and dont self diagnose!
 
I got food poisoning when I was 17 and after that things were never the same (or maybe it wasn't food poisoning - who knows). After that I just thought I had a sensitive stomach. I always had canker sores. I never had the energy other people my age seemed to have. I didn't even complain about this to my doctor. I just thought that's they way I was. Then when I was 34, I got hemmorhoids and had them removed. The pathology report showed signs of Crohn's and they wanted to run more tests. I said no way I've got Crohn's (I had a friend who had it and she was soo sick, I didn't think I could possibly have anything wrong with me). They strongly suggested more tests and guess what - I have Crohn's. I still felt pretty well fine (or at least my definition of fine) until I was 37. Long story short - now I feel like crap and am waiting for surgery.
 
This is a fascinating thread. Thanks for starting it!
Many of the posts sound familiar to me especially about the tonsillitus. I was always an ill child and have had many illnesses as an adult. I always seem to get completly knocked out by any illness I get and take much longer to get over them.
When I was young I had recurring bouts of tonsillitus. My GP at the time didnt want me to have them removed even though I had so much time off school. It got to the point when I was 14 that I was getting tonsillitus every 3 weeks. So I had 2 weeks at school and then 1 week off ill. At this point I had my tonsils out!! I also kept having ear infections but don't believe theses were connected.
Fast forward about a 14 months and I developed what my GP believed to be ME (crohnic fatigue syndrome). I was 16 years old and could barely do "normal" activities. Friends would come over and I would just fall asleep on them and couldn't really walk anywhere due to the fatigue. I managed to still go to school but would return home and sleep until the next day. At the time I saw a homeopath who said that my tonsils had been the first contact of infections but as these had now gone the infections had gone further into my body (this makes sense to me but I'm not sure it does medically :) )
As an adult I have regularly had stomach upsets and often had crohnic diarrohea (not quite like it is now though!)
All of which leave me wondering if they were "signs" of what was going to happen but I guess I'll never really know
 
I'm really curious to know how many people on this thread, especially with the tonsillitis, grew up in homes with second hand smoke. Anyone?
 
I'm really curious to know how many people on this thread, especially with the tonsillitis, grew up in homes with second hand smoke. Anyone?

Not me - I never had tonsillitis and I grew up in a non-smoking household. But when I first became ill, it was about a year after we bought our house, and the previous occupants were big-time chain smokers. The house smelled like cigarette smoke for months after we moved in - it took a lot of airing out, painting over the nicotine-y walls, air fresheners, etc to get the smoke smell mostly out. I'm sure that wasn't good for me, and I do wonder if there was some sort of connection between the... third? hand smoke in my house and me becoming ill.
 
"Third hand smoke," that's too good. :D I have to remember that one.

I do know that my parents both pretty much chain smoked, and after my mom quit and my dad took it outside, I didn't have any more recurrent pneumonia or tonsillitis. My tonsils are now permanently enlarged, and the first to take the hit from any virus I get. Furthermore, every time I'm around smoke since, I've gotten sick for a week afterward.

I wouldn't be surprised if second hand smoke was also a big trigger in IBD. I'm convinced smoking was the trigger in my dad's Crohn's—he was a nicotine fiend!
 
Neither of my parents smoked. My grandparents didn't either and we were close to them. My brother and I still suffered a lot with strep throat and tonsillitis.
 
I suffered with tonsilitis quite badly from the age of 13, ended up having them out when I was 16. The d's started when I was in my teens, seems like any time I got nervous or a bit worked up I would have to run to the toilet. Then when I was 18 I started getting other health problems, I got pneumonia which put me in hospital, then a kidney infection which also put me into hospital. Things have gone downhill since then. Both my parents smoked, and I am also a smoker myself which doesn't help.
The thing I am worried about now is my son who is 5, he suffered with tonsilitis quite badly when he was little, he has already had his tonsils out so am wondering if this is a signal he might end up with CD. Every time he gets a tummy ache I worry that this could be the beginning of CD for him.
 
I'm really curious to know how many people on this thread, especially with the tonsillitis, grew up in homes with second hand smoke. Anyone?

Really interesting thread, guys. I would get tonsillitis every year, at least once a year, sometimes twice, while living at home. My dad was a heavy smoker.

Even after I was diagnosed with asthma at 16, he would not stop smoking around me in the house or car. It was miserable.

Guess what, I moved out when I was 19 - haven't had to use an inhaler since. I'm 28.
 
With the UC, it was bloody stools. That's all it took for my dx.

After my j-pouch, and six happy years, I started having very typical Crohn's symptoms - excruciating fatigue, joint pain in my hips, inflamed eyes, canker sores. Had I known at the time that these were very common and typical Crohn's symptoms, I probably would have caught it sooner and might not be sitting here with a bag right now.

- Amy
 
When I started waking up during the night with bloddy D, losing weight with no appetite and generally feeling awful.
 
At 19, it started with acid reflux type symptoms, moved to stomach pain, then to excruciating must lay down now, have a fever for about 3 minutes and then ok again pains, weight loss and pain after eating.

Bethany
 
It hit me as a bit of a bolt from the blue. Used to have a cast iron stomach ( or so I thought ) but I smoked for 30 years and will admit to being a total chocolate and cakeoholic.
Thinking back, I'd had a bit of D but no pain etc for about a year. Then last September, I woke up with a weird pain in my lower stomach and pelvic area and had two or three days of D and vomiting, followed by UTI symptoms.
My Mum says I had bad tonsillitus as a very young child and the docs suggested getting them out when I was a bit older, but it seemed to clear up.
No Crohn's in the family, but there is asthma, excema, arthritis, diabetes, Alzheimer's and heart disease!
Ah well, I always was a bit of a black sheep!!
 
I always used to take a lot longer recovering from stomach bugs than usual when I was about 6/7. My stomach would still feel bad two weeks later. I also used to get stomach pains a lot.

It's only when I was about 8 that I slowly started to feel more and more unwell and off my food etc. It was more family that didn't see me often that noticed my gradual decline though. People thought I was anorexic till I was diagnosed aged 9.
 
Never occured to me that something was wrong, I grew up in a non smoking home (my father is a non smoking Nazi till today) I never smoked myself, I dont drink alcohol (not even socially) I was drinking one - 2 coffees a day and I was overweight. Around 2004 I had some troubles with D, I had some blood work and they found I had a kind of salmonelosis, I got a round of antibiotics and I was fine. Later my GI said that this probably trigered Crohns.

I kept eating everything and having no problems till the summer of 2009 when I woke up with pain on the right side. The rest is history.

I have asthma since I was a kid but never suffered any problems with my throat, I still have my tonsils, never had an earache in my life, although I had tubes as a kid to remove fluid, never had strep throat or tonsilitis. Noone in my family ever had bowel problems of any kind (I know up to my great grandparents from both sides). I am the first to have the disease (lucky me).

The doc said that probably the amount of inhaled steroids I get for my asthma suppressed the crohns symptoms, another GI said that this is nonsense and sometimes Crohns hits hard and out of the blue. Either way I was asymptomatic pre diagnosis.
 
In the early fall of 2005 I had a bad chest cold which turned to an infection that required antibiotics. After I finished I was constipated and could not get back to normal even with fiber supplements...pain in the rectal area started as well as bleeding...popped a lot of advil to relieve the pain ut finally couldn't take it anymore and wemt to the hospital thinking I had a hemmoroid.
Doctor thought it was cancer and scheduled me for a biopsy, week later had it done, but started into a downward spiral of low level fevers and weight loss as well a swelling of right foot and pain starting in left one.
Lost 40 pounds in 2 weeks and got rushed into hospital when the doctor saw worsening symptoms. D had started as well and my left big toe was so painful they had to give me dilauded to relieve the pain. 8mg every 4 hours. Diagnosed with 1 fistula as well (were the other doc had done his biopsy.
Blood tests kept coming back that I had something going on infection wise but it was a mystery to the doctors there.
They tested me for gout because the toe had swollen twice the size in the joint and was locked, walking was painful, like I had sprained ankles.
No gout, but had to wait till the infection subsided to get a seton...
They never did tell me what it was that caused the swelling or pain but at the end said it was mild crohns...set me up for more tests after a while and everything was negative.
All was good for 6 years until a part of my seton came out, not sure if the whole thing did or not but developed 3 fistulas and 2 fissures...and the rest of the symptoms.
Now they want to put me on Remicade right away...
 

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