What do you do when all results have been normal?

[Jackie010307]

So far I've had a colonoscopy just over a year ago, I've had bloodwork for ibd, celiac, and crohns, stool tests, and an endoscopy. All that has come back normal, including all the biopsies. The only think that has ever come back not normal are b12 (don't remember the levels) and vitiman d (it was 17 but was said to be due to living where there isn't a lot of sun). I know there is something wrong with me, and the more I read about crohns the more it seems to fit. I'm just not sure where to go from here. The endoscopy did show inflammation of the stomach, but the nurse at the gi office said it was just heartburn and called in some meds for that. I don't have heartburn, or any pain in the stomach area at all, it's all lower left and lower right abdominal accompanied by diarrhea. I tried telling her this but she didn't listen. I go back on the 1st and my plan for now is to see if he intends to try more to figure this out. If not I will probably be making an appointment at the Cleveland clinic. Just wondering if there is anything I should be requesting that he do next?

 

[PVail]

Hi Jackie
Ive had 3 colonoscopies, 2 ct scans , 2 barium follow throughs and they cant find the source. They have put me on Asacol for inflamation and amytiptyline for pain from cramping. I have had this for three years but still no diagnosis.
My Doc say basically until they can find a definte marker he sticking with undetermined something . Its funny im on these meds since they are for Colitis /crohns but they wont say it. I think the best you can hope for is that you can persuad you Doc to give you some proper medication. Its a bit of trial and error but these meds im on now have reduced my symptom by say 20 %. Above all dont loose heart.

 

[Jackie010307]

I'm hoping for some relief soon. Right now it's the worst it's been in many years. I forgot to mention that I've also had a ct scan with contrast that was normal. The symptoms fit, the family history is there also, I really feel like its just a matter of figuring oh where it's hiding.

 

[PVail]

Jackie I know where your comming from here . Its very frustrating and really pissed me off for a long time . I started taking steps myself to see If i could help . I made a food diary , marking down foods that had an effect, then avoid them. This does make a difference as I love coffee and crries and all the stuff that tastes nice but now i have learned to do with out. Its the eat now pay later syndrome. Also reducing the size of your meals will help.
I still have pain and D every day but I know I can atleast have some control by avoiding the trigger foods. i know its not an answer but sometimes we have got to take steps ourselves while we wait for medical help.

 

[mickey]

Food can cause inflammation in the body, which then causes disease. Perhaps you have some food sensitivities that you did not realize? If you can eliminate carbonation, dairy, sugar, that can help reduce bloating, inflammation and can be a good start for you. You have a warning sign that something is wrong, so keep searching! You know your body better than anyone and don't let them make you forget that. Good luck! Try starting a good probiotic and perhaps digestive enzymes to give you a little boost.

 

[Jackie010307]

Sorry, double post!

 

[Jackie010307]

I've kept a food diary for years, but I haven't had the best results. In the beginning it seemed like the problem was milk products so I cut out lactose, and it seemed to help but only for a short while. Next it looked like bread/wheat was a common thread so I went gluten free. Again, it only seemed to help for a while. I still dont eat or drink much with either. Right now I'm not eating much of anything, just trying to stay hydrated. Funny thing is though, I really haven't eaten much in the past week but I don't seem to lose weight. I don't want to lose weight due to not eating, but being that I'm overweight I find it odd. I have been checked for thyroid problems but none were found. That's pretty much the only symptom, or lack of, that doesn't fit with crohns, but I think it's the main reason the doctors don't listen to me. My sister had the same problem, she was overweight so they wouldn't listen. Took her years to get a diagnosis.

 

[Fozzyboy]

Went through the same thing. I was passed from doctor to doctor and had teat a-z. The key is finding that one doc who really listens and knows what steps to take to help you. I had had 15 colonoscopies that showed varying degrees of inflammation but nothing significant and the biopsy were coming back normal, mind you they were border line normal. Then I had a bad flare and my GP wanted me to go to a particular hospice so I did thank God because that is where I met my current GI who did an emergency colonoscopy and with in 10 minutes he was in the room talking to my family and he said your daughter has Chrons Disease. My mom said well are her biopsies said she didn't and this doctor took her hand and said I don't care what the biopsies show I care about her symptoms and what I saw when I was in there. She has Chrons. He asked how the ulcerations were so blatantly missed and the explained that every time I would get bad they would put me on meds and wait 6-8 weeks to do a scope. To this the dr replied well that is just stupid of course their gonna miss it she is better by then.
Needless to say he has been treating me ever since. Love him

 

[Jackie010307]

Your location says youngstown oh, makes me wish that were closer! I'd go to the same doctor! As it is I would be making a visit to my in-laws to go to the Cleveland clinic but I've done that for one of our kids before and I was very impressed with their doctors. I hope it doesn't come to that, but something has to give soon.

 

[cb323]

I understand your frustration. Many test (expensive). All but the CT's have been normal. I don't know whether to keep searching or not. I feel like my job and friends are starting to question if I'm really sick. The only foods that seem to trigger the pain are high fiber foods. The GI did start me on Pentasa a few months ago and it did reduce my symptoms but I've had a really bad weekend with pain and fever. I'm like you, I know there is something wrong. This can't be normal. But, how long are we supposed to search when test are not showing anything? I hope you find answers soon.

Pvail, I know what you mean by being frustrated and starting to get pissed off. I'm not frustrated with my doctors, they have been very thorough with looking for a cause. They were convinced of Crohns, just can't find any proof. I go back for follow up on 3-2 to see what he suggest now. Best wishes to all.

 

[mickey]

I know you said you eliminated some things and it temporarily worked, but keep going at that. It may be quite a few things you are sensitive to and will have to keep eliminating things and keep them off your diet for a while. I was amazed to find corn gluten noted on the ingredients in a bag of frozen peas. You really need to read labels. If you can reduce the inflammation caused by your food sensitivities/allergies, you can help your body heal and reduce pain. Also look at what you are drinking...eliminate sugars, carbonation, alcohol, and drink only pure teas or water...or pure juice. Much juice also has preservatives as well. It is a tough go, but you can do it! That can help you while you search for answers in your road to recovery. Good luck!

 

[Cat-a-Tonic]

Jackie, sometimes heartburn meds can help with inflammation of the stomach. If there's extra acid in your stomach, it can aggravate inflammation that's already there, so heartburn meds can help with that. But, I also agree that heartburn/acid sure doesn't sound like it's the root cause of your illness and you should keep fighting for answers. It is incredibly frustrating when every result comes back normal - I have been through the same thing and am still undiagnosed myself. I fought to try medications for IBD and I responded well to those, and I didn't respond to meds for other things like IBS. So based on which meds I respond to, my doctors treat me as though I have IBD. My main doctors, GI and GP, have both always taken me seriously and treated me as though I have a legitimate illness (and not "just IBS"). It sounds to me like your doctor isn't listening and it probably would be a good idea to go to Cleveland Clinic like you said and get a fresh set of eyes on your case. Good luck with it, I hope you can get some answers and relief - and a doctor who listens and takes you seriously.