Awaiting Official Crohn's diagnosis

[crohns sucks]

I have been dealing with right side pain for 2 years. I have had every test possible except a capule endoscopy. I even had my appendix out because they didn't quite look right. About 6 months ago, I woke up in the night with stomach pains. After a few visits to the bathroom I started to bleed with my stool. I had noticed slight blood streaks in my stool prior to this but basically ignored it. This time I was losing what seemed like a quart at at time. I went to the doctor (general practice) and they diagnosed it with IBS and gave me some antibiotics. This cleared it up. About 2 months later I had another flare up with blood. I was sent to a Gastrologist and he did an upper GI and another colonoscopy. No Crohn's (irregular cells) present. After yet another flare up, I had a CT and found dirticulosis. The gastrologist says this could be why I had right side pain but not why I am bleeding. He truly believes I have Crohn's in the areas of the small intestines that the upper and lower GI cannot see. Thus he wants me to have a capsule endoscopy. I am currently in a flare up and awaiting my insurance to approve it. I have read everything I can on Crohn's and I am 99% sure this is what I have. I have visited this site at least 10 times to figure out if certain foods bother other Crohn's sufferers or not. BIG help. I started the food log too. I literally started crying to hear all the supportive comments on this site. This disease really does suck. It affects your personal life. I use to be the life of the party and now all people ask me is "How are you feeling?" or "More issues?". I try to not let it get me down but the disease is controlling me instead of me controlling it. I look forward to starting medication to treat it!

 

[JDTM]

I would be remiss if I didn't reply to a fellow 'Sconnie. (Well, I only lived there for 9 years, but I feel like I've got the whole honorary midwesterner thing going. My wife was born and raised there, so that's gotta count for something!)

Anyways, I don't have too much to add, but I wanted to welcome you and tell you to hang in there! I'm relatively new to all of this, and this forum has been a pretty big help. Keep us updated on your progress, and use this board as a resource -- feel free to ask questions!

 

[marjaw]

I'm sorry you're so frustrated. I'm dealing with the new diagnosis too and get the "are you ok looks" all the time. I see you are located in Wisconsin. If you are near West Allis/ Milwaukee and not happy with your GI guy try to see Dr Dan Geenen at GI Associates. Very knowledgeable, whole staff listens and offers advice. He told me it didn't matter what I eat. If the inflammation is there it will be a problem. They can treat the disease effectively but have no idea what causes it to flare. Yay Autoimmune! However, you can have trigger foods that won't necessarily start a flare but may cause upset in other ways. Mine is tomato which sucks because I love pizza (and no, white pizza is not the same :-(
Hang in there, dealing with it while waiting for diagnosis/treatment plan does suck but it will get better

 

[marjaw]

I would be remiss if I didn't reply to a fellow 'Sconnie. (Well, I only lived there for 9 years, but I feel like I've got the whole honorary midwesterner thing going. My wife was born and raised there, so that's gotta count for something!)

Anyways, I don't have too much to add, but I wanted to welcome you and tell you to hang in there! I'm relatively new to all of this, and this forum has been a pretty big help. Keep us updated on your progress, and use this board as a resource -- feel free to ask questions!

Dude, It's Cheesehead not 'Sconnie lol:biggrin:

 

[Angrybird]

Hello and welcome to the forum :bigwave: I am pleased that your doc is still pushing for further tests to be done - many don't. It is right that a colonoscopy can only look so far so the problem may be further up. I am glad you are already finding the forum helpful, pehaps check out our undiagnosed sub forum to say hi there to get further info on what can help when at this stage of the process: http://www.crohnsforum.com/forumdisplay.php?f=75. Wishing you all the best and I hope you can get some answers soon - pls keep us updated on how you get on.

AB
xx

 

[David]

Hi there and welcome to the forum!

First off, you know that doctor that diagnosed you with IBS when you had blood in your stool? I would suggest never setting foot in their office again.

With that out of the way, I get the feeling that your current gastroenterologist is pretty darn good Let's hope that your insurance approved the pill cam as that does indeed seem like the next logical step.

We're here for you