Just Diagnosed - 28yrs old

[endrwign]

Hello All! The following is my story and my questions to you all:

On December 2012 I awoke in the middle of the night feeling painful cramps. At first I thought it was a gal stone. I waited it out for a bit (not wanting to wake my wife up) but then the pain just kept getting worse until I finally began vomiting. I NEVER vomit. That is when I knew something was not right so I had my wife take me to the hospital (I have also never been to the emergency room or had any surgery).

They had me drink contrast and did a scan which showed a partial small bowel obstruction (the ileum portion). The kept me under observation with IV and morphine and it soon went away. Every doctor kept asking if I had had surgery before to which I answered "No". They then decided that it must have been enteritis due to some virus.

Fast forward to May 2013 and I wake up one morning feeling some slight cramps. I try to ignore it hoping it will just go away. I spend the rest of the day at work with the pain getting progressively worse but not unbearable. I go to sleep that night and then the next day the pain is still there. Go to work and the pain starts getting worse. By the time my work day is over and I am driving home, I am in real pain. I get home, hope that it goes away, and then I begin to vomit. Not again! So my wife takes me to the hospital. This time, its a full bowel obstruction and they need to insert the dreaded NG tube! :ymad:

This has, so far, been the worst experience. I know it probably doesn't compare to what most people have gone through on this forum but for me having that NG tube for 2-3 days was torture! I do not wish that on my worst enemy. Being that this is the second time I get a bowel obstruction, the doctors are more worried and order Crohn's tests after I tell them my aunt had Crohn's. I believe it is the C-Reactive Protein blood test.

I am told by my GI that this test came back negative but am then told that that means nothing. Basically, if its positive it means nothing, if its negative it means nothing. Okay lol

Throughout all of this, none of the doctor's I have seen think I have Crohn's because I am not suffering from any of the symptoms except for the two bowel obstructions. Apart from those days when the bowel obstructions occurred, I feel fine. After the second episode, I would say my stomach has not felt 100%. I get the occasional mild discomfort/cramp (feels similar to when your stomach hurts because you are hungry).

The NG tube was a horrible experience and it convinced me to start keeping a Food Journal to try and eliminate foods that cause me diarrhea. Dairy seems to be the main culprit so I eliminate this from my diet (even though my favorite food is pizza).

Fast forward to Feb 2014 and I wake up to slight cramping pain similar to the last two episodes. Immediately, I am pissed! I want to fool myself into thinking this is nothing and it will pass but deep down inside I know where this small pain will lead so I refrain from eating anything the rest of the day. Sure enough, by night time, I am in severe pain and go to the hospital. This time, the emergency room is packed and they make me wait for over an hour. By the time I am given a room, the pain has subsided and I do not feel nauseous so I ask them not to give me any morphine and just give me fluids. They eventually do the scans but by then the obstruction is gone and all they are able to see is slight inflammation of the small bowel.

That leads me to today, March 26 2014, when I had my enteroscopy (double or single balloon I believe, since the inflammation is occurring in what the GI claims is the hardest part of the bowels to see, the ileum). The procedure went perfectly fine. Got there, they knocked me out with drugs, and I awoke to my GI telling my wife I had Crohn's (and her crying). They took a biopsy and in 48 hours I will be able to call my GI to ask about the biopsy and schedule a follow up appointment to ask all the questions I may have.

On the one side, I am happy to finally know what it is I have, on the other, I am a little disappointed that it's Crohn's (I was hoping it was a popsicle stick or toy soldier I had swallowed when I was a child lol).

I know that was long but my question to you all is: I don't seem to have "severe" Crohn's symptoms. Between the episodes, I am perfectly fine. Is Crohn's something that gets worse with time?

Thank you all for reading my story. I can only hope it helps someone in the future in some way.

 

[Saralr]

I have had symptoms on and off for 15 years and was told it was IBS. I never suspected Crohn's. My GI didn't either. And after my colonoscopy I was told it looks like early Crohn's. I'm very lucky for that but confused too. Just from reading this last month, I see that everyone has a different story. Some get bad fast, some stay in remission for years. I don't think there is a way to know how bad your Crohn's will get. It seems the best you can do is take care of yourself and cut foods that aggravate your Crohn's.

 

[vivaelbirdo]

[I know that was long but my question to you all is: I don't seem to have "severe" Crohn's symptoms. Between the episodes, I am perfectly fine. Is Crohn's something that gets worse with time?

Thank you all for reading my story. I can only hope it helps someone in the future in some way.[/QUOTE]

Yes, Crohn's can absolutely get worse unfortunately. Flare ups can cause scar tissue to build in your intestines, which will not reduce and may require surgery to remove that portion of the small intestine. Now, obviously there are a whole host of drugs and treatments in the meantime to prevent it from getting to that point less I sound alarmist here. That's why monitoring your symptoms and getting a good GI you stay in touch with are extremely important.

In my case, I was diagnosed almost immediately...and then UNDIAGNOSED by 4 other doctors over the years who said the first doc was nuts. Meanwhile, every six months or so, I would be out of commission with a day of stomach pain that would usually pass in 24 hours. I learned to live with it...until late last year. All of those "bad days" built up so much scar tissue in my intestine, that sections near my terminal ilieum were less than a centimeter, making me extremely ill and putting me on the operating table.

It still makes me angry and I realized that most Docs don't take the long view of your symptoms...they want to give you some drugs and quickly get you out of their office. My best advice to any new Crohn's patient: *If you feel rushed or dismissed by your Doctor tell him so or find a new doctor*.

 

[Kero]

:welcome: to the forum! Glad you found us!

From what I understand, there is no textbook steps of progression for Crohn's. There is only one thing I have seen as a constant for symptoms, and that is bowel inflammation. Crohn's can affect any part of a person's digestive tract, from mouth to anus. Everyone is different, affected in different parts of the bowel/digestive tract, what foods set people off, etc. You can also be symptom free but have it raging inside, or have lots of symptoms with hardly any diseased bowel.
Your best bet is to find out what works for you. Keeping a diary has helped for some, there are even phone apps to help keep track of symptoms and food intake. And this forum! This place is absolutely amazing. Pretty much anything this disease can throw at you, someone on here has gone through it It really helps when you can talk to people who really get it, know what I mean?