Venting: I CAN'T TAKE THIS ANY MORE!

So after almost 30 years with Crohn's, I'm in the middle of another flare. I've never been easy to diagnose...never found much until they went to extremes to find it. Had undiagnosed GI bleeding for five years. Finally balloon enteroscopy revealed a stricture that required surgery (many transfusions, infusions and pain).

Now, one year after surgery, I'm back down the same road. Switched GIs. New tests all came back normal. Yay. Except for one problem... I'm STILL SICK!!! Pain, can't eat, joints ache, no energy, GI bleeding, etc.

I point out how I've never been diagnosed with the conventional methods and maybe I need another strategy like the balloon (capsule is out of the question---too many strictures). Doc says, "Well, if you're willing to take that risk..." REALLY??? I just want to feel better. I don't care at this point what we do. I'm currently on no meds at all. I'm waiting to see my doctor November 17th (soonest they could see me); however, her assistant told me to go to the emergency room since I had GI bleeding. I explained that this was par for the course (been there, done that, more tests that didn't show squat). And still no results. Anyone else hard to diagnose???? I just am so frustrated and sick I don't know what to do. I've taken lots of days off work and don't want to do anything. So tired and weak and bitter. Thanks for the kind ears!

I think all is different on how long it takes to dx but for me i believe i had crohns from about the time i was 12 years old and i wasnt dx intill i was 27 and i am 33 now and still i have doctors tell me that i dont but one is sure i do have crohns at times i have even had them tell me its all in my head and nothing was wrong ha even though i had 10- 14 stools a day blood stomach pain joint pain but yet nothing was wrong anyway try to find one doctor and stick with them i had to go about an hour at times more away to do that but it is worth the trip sometimes hard to get there but worth the trip the other problem with me is none of the different meds helped or i was allegic to them and that confused the doctor which dosnt take alot with some of them lol but now i am on a study drug and it mostly has been a god send

Hi Juliet,

I have the same problems with my Crohn's sometimes BUT my doctor's know that if I say I am sick, then they better pay attention. I have been right every time my symptoms start and they know it. You know your own body and if your doctor isn't listening to you then you need to get a new doctor. I know that I make it sound like an easy thing to do, but I know it isn't I am on my 3rd GI doctor. My doctors are with a teaching hospital so most of the time the doctor's will leave the hospital and leave me stuck with a new doctor. You have to stick up for yourself with those doctors because just because they have a dang medical degree doesn't mean they know how you feel. The test may not show right away where you are flaring but the doctors need to do like a barium swallow or maybe a barium enema to see if they can see where you are flared at. There are tons of tests out there so don't let him just give up. This is your pain and your body you make him keep doing tests until they figure out the test that works best for you!!

I wish you luck hun. I feel your pain and frustration.

I agree with nanners--no barium enema...I thought I was going to die..When my colonoscopy was unsuccessful due to rolling colon back in 02', they did this procedure I screamed and thought my intestines were going to rupture?? I gave had MRIs, endo, and CTs, and SBFT only since then..Gall bladder removal and resection in 04' have been my only surgeries..
Cindy

My problem area where i get blockages is also in my small intestine, out of reach of both a colonoscopy and a traditional upper endoscopy. Like you, the double balloon endoscopy is the only hope for seeing exactly what is going on, though we've never done one since I respond well to remicade. The pill cam is not an option.

Also, sometimes my c-reactive protein looks fine even though a CT scan shows active inflammation.

So, no great words of wisdom, but you are definitely not the only one who can be really sick but not in ways that make it obvious to doctors.

Once you have had a surgery, and the surgeon has sent whatever they took out of you and also biopsies from other areas to the pathologist, there should NEVER be a time where another GI isn't certain whether or not you have Crohn's just because your disease appears not to be active at the moment. The fact that you are complaining and in pain means that they should be prescribing medicine to help you right now.

My biopsies and all 10" or so of TI, cecum, appendix, ileo-cecal valve and part of my colon all showed scarring, active inflammation throughout many layers, and most important those all telling granulomas that scream SHE HAS CROHN"S DISEASE. If your GI can't hear that or see it when he is reading your old medical records please do yourself a favor and get another doctor. You mentioned that you have never been DX'ed with the normal methods, but the surgeon had to have sent your biopsies to pathology so you should try to get your hands on the results of those tests. I did, and mine were quite clear. There were even statements like "consistant with Crohn's" etc etc. There is no way that the hospital wouldn't have tested all these pieces sent up to pathology because they would also want to rule out cancer.

Another thing that you might want to reconsider is your idea to have "balloons". I'm not sure where your strictures are exactly but you have mentioned that you have had Crohn's for some time. My GI told me that as strictures age and become mostly scar tissue they also become more "brittle" and that using that balloon technique that widens the area could result in perforation. Something to avoid at all costs.

The other think that I feel is very important and was already mentioned is the fact that you should always be on maintenance drugs. There are microscopic changes happening even when we aren't in the middle of a flare. These drugs help to keep damage and inflammation down to a minimum if they are working for us. You haven't mentioned (I don't think) what medicines you have taken in the past.
NY VEGGIE

can you have miso soup? what about a shake? got a good recipe for one that isn't to hard on your gut I lived on miso soup and my mango peach tofu( sounds gross but it is really yummy) shake