My story.

[k_no24]

Hello all.

I was looking for a place to tell people what I had been through and maybe get some insight from those who have some experience with similar issues. When I clicked this forum and the first section was called 'your story' I knew I had to sign up.

I still remember the very first time the stomach aches started. The night before Grade 10 started (stress trigger, anyone?). I was still 14 at the time, turning 15 that month. I had a bad stomach ache that just wouldn't go away.

After missing a ton of school in grade 10 with the daily stomach aches, obviously I had to go to a doctor. We went to our family doctor and he talked about the various possibilities. He set up an ultrasound and a colonoscopy. The ultrasound didn't take long, but they found nothing. I still remember researching it at the time and considering Crohn's as a possibility and making sure that I asked the Gastroenterologist about it when the colonoscopy finally came around.

It took about 6 months from my original doctor’s appointment to the date of my colonoscopy. By that point, I of course hadn't even had a stomach ache in the past 2 months or so (I can't remember the exact timeline, but it was something like this.) After the colonoscopy, I was told "We didn't really find anything. A little redness, but you're otherwise fine." I asked about the possibility of Crohn's and he immediately wrote it off. There would be other symptoms. I was essentially diagnosed as 'a kid with a stomach ache who wanted to get out of school' (Maybe I'm a tad cynical :P)

At that point, I didn't really care anyways. After all, the stomach pain had gone away at the time. When it did finally come back, I did what, in hindsight, I should not have done. I ignored it. I also hid it pretty well. As far as anyone knew, I was an average teenager. Aside from the fact that I had always been pale as a ghost, never got above 135 pounds (5'9") and I had/have what people would describe as 'Gekko fingers', which I later found out was called 'clubbing'. I've also had diarrhea for most of my life, which I never really thought anything of. If you don't know any different, why would you assume it's a problem, right? I never really asked what other people's stools looked like, lol. I assumed it was minor lactose intolerance and I definitely wasn't cutting dairy out of my diet.

More and more I started to isolate myself when the stomach aches came. I wouldn't want to go out because I was in pain. And I didn't have a medical reason to say I didn't want to go out. Eventually if you tell people enough times that you don't want to hang out because your stomach hurts, they assume you're blowing them off and they stop calling. I'm not trying to turn this into a sappy attempt at pity-seeking or anything, just saying what happened. I still have a core group of friends that I see regularly, but as I got older it seemed to make me a lot more anti-social than I had been in the past. Did this happen to anyone else?

If I remember correctly, I think I actually went fairly symptom free in my first year of college (I was 17 when I started the year, 18 when I finished). I don't really have a logical explanation as to why. I had quit smoking then, and I know that smoking is one of the worst things you can do to aggravate it, so that could have played a role (Like many smokers, I do intend to quit again. No lectures please. Lol).

When I was 20 and the stomach aches were still coming and going, they also started to be accompanied by swollen ankles. This never really bothered me because it didn't seem to hurt, just a minor inconvenience in comparison to the stomach pain. I asked my parents what they thought and they assumed that it was because I spent so much time sitting down; I needed to get up and walk around more.

The summertime was the breaking point. I was still 20 at the time. This was this past summer by the way. The intermittent pain came back and was worse than ever. It was no longer possible to act like I wasn't in pain in public. I would grab my stomach and have to lean over in order to ease the pain. I hate people feeling sorry for me or drawing attention to myself, so making the pain visible to everyone around me was driving me insane. I spent a lot of the summer in my bedroom, with my ex-girlfriend, since I was also unemployed from May-August. My will to actually go out and do anything had plummeted entirely. The swelling in my ankles had started to spread from my ankles. My feet and toes were entirely swollen, as well as my legs right up to my knees. I wore pants all summer, obviously :P. My elbows felt stiff but they weren't visibly swollen.

I got a job on a night shift in August. In September, one night, my manager noticed me clenching my stomach when I didn't think anyone was paying attention and she asked what was wrong. I explained, in a much more summarized version, most of what was said above, and then I showed her my legs and ankles. She insisted I go to the emergency room. I guess it was about time, lol. You're probably wondering why I avoided it for so long, but I really just didn't want to spend all night in an emergency room to be told it was nothing again.

That night they were actually fairly quick in the ER. I think it was only about an hour and a half before I was seen (this is not sarcasm, that literally is pretty quick). I explained everything to the doctor and showed him my legs. Again, the stomach aches were completely ignored and he focused on the swelling, which makes sense, because as a doctor it’s logical to treat the symptom that is right in front of you, rather than a vague description of abdominal pain. He also tossed around a theoretical diagnosis of Rheumatoid Arthritis.

He prescribed me Celebrex, for joint pain, despite the fact that I said my joints weren't actually in pain and I was more concerned with the stomach pain. I was then sent home. My Mom, concerned with the swelling, booked an appointment with my family doctor again. This time he sent me to a General Surgeon, who was honestly the best doctor I have ever had. It was the first time I had ever had a doctor listen to me. It was also the first time a doctor had ever acknowledged my (Very obviously) swollen fingertips. He booked the colonoscopy for the next day, which meant I had to start fasting immediately, but this was incredibly refreshing compared to the amount of time I had to wait for the last one. At least this way the stomach pain didn't have time to go into hiding.

Anyways, this post is already too long, so I'll try to summarize what happened next in point form for readers’ sake:

-a colonoscopy
-countless blood tests
-a referral by that doctor to go to the ER immediately (about 2 weeks after the procedure, while awaiting my CT scan)
-a terrible ER doctor who told me I should go back to my doctor because he didn't think my increasingly swollen joints were an emergency, despite looking like Fred Flintstone from the knees down
-a few weeks trying to self medicate with Endocet we had at home, which worked well for the pain, but obviously taking non-prescription opioids and trying to go to work isn't a good idea
-a few weeks on prescription Tylenol 3s, which don't work that well, but do more than over-the-counter pain meds.
-my doctor bumping me up to 'urgent' status so that the CT scan would happen about a month sooner than expected. Again, this doctor was awesome.
-another colonoscopy/biopsy

They diagnosed Crohn's disease, started me on Pentasa and referred me to a gastroenterologist (different one than I had seen 5-6 years prior). He wanted to reconfirm Crohn's before I got heavier treatment, so

-more blood tests
-a stool test
-an upper tract GI/Follow through procedure.

And I finally got actually diagnosed with Crohn's Disease! This was earlier this month. I should also mention that as a result of the loss of appetite that came with the more recent abdominal pain, I dropped from 135 pounds when I weighed myself in the summer of '08 to 118 pounds when I weighed myself in October. The Pentasa didn't do much, though it did seem to get rid of the swelling. I got my appetite back, but I don't know if that was because of the Pentasa or because it went into remission again on its own.

Once the gastro-doc had his diagnosis, he took me off Pentasa and I'm now taking Entocort (Steroids). He also refused to give me any kind of pain medication because I should "Go to the emergency room as soon as I feel any pain" in case it's a blockage or anything like that, but because of my past experience with ERs, and now 7 year experience with stomach aches, I'm a little hesitant. The stomach aches started coming back again on Sunday, but they're not nearly as bad as they were in the summer, so I'm not sure if I should take his advice and go immediately, or just wait it out.

Oh, and he also said that rheumatoid arthritis could potentially be on the table because the swelling in my fingers 'looks like something other than clubbing'. It's weird. I'd take a picture if i had a webcam hooked up. But the swelling in my legs/feet and ankles had to do with a lack of proteins.

All the while, I've been taking off time from work to do all these tests. They've been pretty understanding, as you'd expect, but I still don't like taking time off. I realize your health should be more important than your job, but it's not like I can just stop working because it's flaring up again. I like being able to pay for food more than I dislike stomach pain.

On the plus side, the steroids are making me gain some skin tone, and weight. However, they're also making my hips uncomfortable, which is just a slight annoyance when you are the type of person who sleeps on their sides. That's actually the reason I've been up typing this for the past couple hours. Literally could not sleep.

[k_no24]

Anyways, sorry this is incredibly long, I wasn't expecting it to be, but once I started typing and adding more and more details as I remembered them, it got kind of out of hand. I don't really expect anyone to read the whole thing, I just wanted to tell someone and vent a little. And what better audience than an unbiased group who have probably had similar experiences and can relate. Also, as a result of the lack of sleep, it may or may not be full of typos and chaotically disorganized, so sorry for that too.

Comments are welcomed if you have anything you want to ask or say. Preferably nothing too negative. I had a bunch of questions but I can't think of them off the top of my head, so I'll check back later. Thanks again.

Edit: By the way, I'm a 21 year old male from Ontario, Canada. Forgot to throw that in :P

[merrywidow]

welcome to the forum. you wont get lectured here about smoking! there is plenty of advice and help around here as well. so just ask away.

[imisspopcorn]

K_no24....This is a great place for information and support...Insomnia is quite popular around here too. I hope you are feeling better.....Feel free to ask as many questions you need.

[shazamataz]

Welcome to the forum! Sorry you have been having such a rough time! You'll find a lot of support here and many people who understand what you are going through, such as the insomnia which, as IMP said, is rather popular around here!
Come on in and make yourself at home

[k_no24]

Thanks for taking the time to read it

[tamesis]

Welcome!
I can deffinately relate to the long wait times with the Canadian medical system...I'm experiencing the same problems with trying to get a diagnosis for my symptoms, and the wait lists are ridiculous! Anyways, i am glad you finally got a diagnosis for your symptoms, and hope things start to improve for you soon.

[Jettalady]

Welcome K, and friendly Canadian lol. Wow, long post, I though only women did that LOL.

I had very similar problems but I was 32 when my hell broke out. I cant imagine someone so young growing into a teenager, it must be hard. Social issues are almost redundant because you are sick and you dont know when or where it's gonna hit ya. Sometimes the tests and scopes wear you out and of course going to lose weight, I did too 40 lbs in 1.5 months. Back then there was no forum for support (no computers for that matter) and not much information. One good thing being here , there is a lot of information and support, we will be your support family. We are always here (due to the disease) and keep us updated on how you are making out.

Hang in there, we are here for ya!

[k_no24]

I think my second trip to ER, the one where I was referred back to my doctor and was ultimately a waste of time (aside from the fact that they did a chest scan and told me I also happened to have a touch of pneumonia) took about 6-7 hours. It was quite brutal, especially when everyone around you tells you that there's something seriously wrong, except ironically the doctor in the emergency room who could do something about it.

That really is one of the downfalls of the Canadian medical system. As much as it is great to live in a country with free healthcare, it causes those of us who have legitimate medical problems to have to wait until those who are just being cautious have been helped. At least having to pay for healthcare acts as something of a filtering process for those who don't really need to go to a hospital. It didn't help that this occurred during the heart of the H1N1 scare, so everybody and their brother were lining up to make sure their sniffles were really just sniffles.

[farm]

Welcome!!!

[Brian]

Welcome k_no24!

You will find lots of great info and support from the good folks in this forum....I know I have!

[pain in the butt]

Welcome. Thanks for shareing your story. As far as anti-social sometimes I feel that way. Things get hard sometimes, this is a great place to be lots of info and help. Hang in there and keep us posted.