I don't understand Crohn's... (My story)

[Caiten]

Hey, I'm 19 and at University.
I was diagnosed back during my GCSEs 4 years ago. I think as I get older I feel it's important to understand what I have.
I was told I had an 80% chance of a relapse in 3 years of diagnosis but I've been fine (thankfully).

I saw a thread about someone being completely prepared for an 'accident' - is this normal for people with Crohn's? Do people normally suffer alot from it?

Is Crohn's easy to mis-diagnose?

I want to join the army as an officer, but they list Crohn's as a barrier to joining. Is it at all possible to challenge my doctor into removing it from my medical record.

Maybe it's denial but I don't feel that I have it, I never really think about it and it's not bothered me since getting better.

Sorry for all my questions, my doctors never really explained it to me so I'm kinda new to trying to understand this properly.
Thanks,
Caiten

 

[Catherina]

As far as I know Crohn's can be in remission for ages. You didn't mention if you were prespcribed any diet, medication Why did you go to the doctor in the first place (back then) How did they diagnose it. If you have Crohn's it will not go away (it's easier to get rid of your spouse) but if you don't have any symptoms, problems, medications etc. it might have been misdiagnosed. If you decide to withhold the information about this first diagnose, what are the odds they find out later (cross your fingers) due to some reoccurrence that you have been diagnosed before entering the army? What would be the consequences of this? What are the consequences for somebody if he doesn't know (and withhold information) and is diagnosed while in the army (will he be discharged or will he be found a less taxing job). I think you should consider these things before enlisting. Off course and above all, you should consider the consequences of the job you seek for your health. If your symptoms at that time were severe, however willing your mind is, your body may not be able to follow. If Crohn's puts up its nasty head, things may become really very nasty and it speaks for itself that if you are physically a mess, you will not be able to deal with any legal or practical consequences for witholding information (if they find out). Difficult, extremely difficult but the only way to get out of this dilemma is to sit down and consider all possibilities (not forgetting how much you want this job). You are you alone can make this decision. Whatever decision you will ultimately make, I hope you will stay in remission and wish you all the best.

 

[Caiten]

I was fed by nasogastric tube for 6 weeks + took sulfasalazine. I've not taken any medication in 4 years.
They diagnosed it by using cameras to check the small and large intestines.
I went to the doctor's because I was having diarrhea and sometimes blood.
(One thing to note is that my stomach contained Alkaline and not acid - I do not know why).

I wouldn't withhold the knowledge from the army if it wasn't removed from my medical record.
Thanks very much for your reply

 

[xJillx]

Hi Caiten and welcome! I am glad you are doing so well, but please don't put your head in the sand. In my experience, a Crohn's diagnosis is not taken lightly; there are many on the forum who are still waiting for an official diagnosis. So, if you were diagnosed, chances are your doctor was quite sure in his findings. Therefore, you most likely do have Crohn's, but it is in remission. So, you should be on medication to avoid future flare ups. I have read story after story where people have stopped their treatment because they thought they were misdiagnosed or cured, and later they greatly regretted this. However, if you have doubts about your diagnosis, you have every right to seek a second opinion and further investigate.

 

[Caiten]

Thanks Jill,
Should I see my doctor about medication to prevent future flare ups?
It does seem like a good idea.

 

[xJillx]

Oh, yes, I would recommend taking a maintance drug such as the sulfasalazine you took in the past. It would help to keep you feeling good and to avoid any issues.

 

[Jules mac]

Please dont put your head in the sand and think you are fine. In my experience crohns has a habit of rearing its ugly head whitout any warning. I thought i was fine and a quick course of steroids when first diagnosed would sort it out. I was on mezelasine to keep in remission but really didnt take it seriously nor did i take my diet seriously and 2 years later it is back with a vengence!!!!

 

[Caiten]

I am fast approaching the 5 year mark with no relapse or symptoms and with no medication? Can it go 20 years with no signs?

 

[raechel]

wrong diagnosis

Hi! Glad to hear you have been doing so well for nearly 5 years. I just wanted to let you know that I have met serveral people who were misdiagnosed with crohn's. My gastro doc actually told me its one of the most commonly misdiagnosed diseases. I know you said you had a colonoscopy done that lead to your diagnosis. Do you by chance know if the doctors diagnosis was based soley on what he saw, or did he take biopsies that confirmed his diagnosis? If biopsies confirmed the diagnosis, I'd say it's likely correct. If it is soley based on his opinion of what he saw, maybe a second opinion would be warranted? Besides, with a history of problems, I'm sure a check up colonoscopy wouldn't be a bad idea.

 

[Caiten]

I was 14 at the time so they kind of left me out of the run and didn't explain much buuuut I'm fairly certain there was no biopsy =/