I'm a newbie but I'm hoping maybe someone out there can relate to my case.

[Lizzabelle]

I'm 19 and was diagnosed when I was about 15. I had fissures that weren't healing, and for years I had been dealing with dull aches in my lower right quadrant. After failed treatment of the fissure my doc decided to check for a marker in my blood and got a positive result. Keep in Mind, my symptoms were very atypical. And I went through the tests and they saw some inflammation on my lower gi series. I think some biopsies may have come back normal..my point being that everything seemed too ambiguous for a definitive diagnosis. I went on lialda for a number of years and was great.now in college I was feeling off. Esophagus felt backed up and had some reflux. Doc did another endo and saw nothing until the biopsies. And whenever she tests for my CRP my levels come up normal. She said for some people that test doesn't yield accurate results. I wanna know why that would be, if there is inflammation. It's frustrating because my symptoms are so mild that I can't if they're symptoms at all. I would need invasive testing every time I had doubts cuz my blood is apparently unreliable. I wonder how much of what I feel physically is a result of my lifestyle or my supposed crohn's. Sorry for the long post.. I had a lot on my mind lol

 

[Loriebird]

Welcome to the forum. I hope your doctors can help you figure out what's going on. Crohns is so unpredictable, you never know what to expect. I know a lot of people get diagnosed during their college years or have serious complications during college because of stress. For a few years here, I have ended up in the ER almost every semester before finals. So it's quite possible that stress is a factor making your symptoms worse. Best thing you can do is take care of your body and communicate with your doctors when things start changing. I hope that your crohns stays mild and doesn't interfere with your studies I know it's hard balancing your illness with school. Keep us updated on how you're doing.

Have you had a colonoscopy? I know you mentioned a lot of tests but I don't know what a lower gi series is? Good luck!

 

[Loriebird]

Ps - pain in the lower right quadrant is normal. That's where my symptoms began. Ct scans showed inflammation and a colonoscopy confirmed crohns. People often confuse it with appendicitis. My pain kept intensifying until I began getting infections, absesses and fistulas, and the disease progressed to other parts of the intestine. If you start experiencing fevers or if the pain becomes more frequent or more severe, that's a bad sign. I hope they can get you in the right track soon!

 

[Lizzabelle]

Thanks so much! It's just weird because the way my symptoms are, it hardly seems like I have the disease. Never hospitalized. Never doubled over in pain, and no blood. I did have a colonoscopy and the lower gi was just the x-ray after drinking barium. I get very mild discomfort under my right ribcage due to my duodenum. But I can't really even call it pain. And my doctor moved me to 6mp last feb and put me on acid refugees. Since my symptoms were so vague to begin with idk how I can even tell whether or not I'm still flaring. And she doesn't call me to follow up..I have to call her if I feel the need. I just wish they could check my crp levels but it won't yield accurate results. I feel kinda bloatEd and my stomach has been a tad uneasy a few times past few days. And so much air in my gut. But that could be from IBS or not eating (I don't like the school food lol). But the duodenal sensation seems to be appearing a little more frequently. It's like a guessing game. I have issues with air and gurgling a lot

 

[Lizzabelle]

Acid reducers* gotta love autocorrect

 

[Loriebird]

Like I said, crohns is very unpredictable. I remember when I was first diagnosed, and I really empathize. I didn't feel like I had the disease either, but not knowing what was going on what kind of scary. When I was first diagnosed, the only symptoms I had were chronic constipation and occasional pain in my lower right abdomen then things very gradually got worse. Because it was so gradual, I didn't realize how sick I was getting until I ended up crashing and found myself in the ER. I was tired all the time, had no strength, and also ended up w pretty bad anemia. We get so used to being tired all the time and having occasional pain that we can be pretty bad at judging our own situations, so just be careful. It's different with everyone. Stat on top of your treatments, and if your pain is becoming more frequent or more severe, you need to talk to your doctor. My disease was always easy to spot in the CT scans. I guess I don't know what it's like to know something is wrong bur not to be able to see it! I'm glad you are being treated though. If you are on 6mp, you should be checking in with your GI regularly and getting frequent blood tests to check 6mp levels. Don't be scared to consult another gi if the current one isn't helping you get your disease under control. If it's getting worse, it's not under control even if it seems mild!

Good luck

 

[xJillx]

Hi Lizzabelle! I understand where you are coming from. All imaging test (CT scan, lower bowel series, MRI) and blood work have been normal for me. My inflammation has only been seen when I have a scope, being that it is pretty mild. So, like you, I have to have invasive testing in order to know what is going on inside. It kind of stinks, but I try not to dwell on it. It's important to stay on top of your health, and if it means regular scopes, then that's what must be done.

 

[Lizzabelle]

Thanks guys I called my GI and she said I should come and see her anyway since it's been since January. I am a little scared cuz I eat whatever I want and now it seems like my gut is reacting funny. The bloat esp. Sorta subtle but still suspicious. If the 6mp turns out to be unsuccessful I don't know what the next step would be :/

 

[Loriebird]

Well.. I had a reply written, but I accidently deleted it All I wanted to say was that 6mp can take over a year before it's fully effective, so I wouldn't worry too much if it's not working yet. I'm on remicade and 6mp.. eventually, once the 6mp starts working, I will weed off the remicade. Maybe you just need something a little extra until the 6mp kicks into full gear. I hope everything goes well with your GI. Let us know the prognosis!