Crohns diagnoses help?

[Whatsup101]

Hey everybody! Well basically I joined this forum because I really wanted advice from people who may have experienced what I have gone through or someone who understands all these different diseases. My problems started last October when I became very I'll to my stomach (diarrhea with blood though it wasnt bloody all the time) I started having to use the restroom 15-20 times a day and nothing over the counter seemed to help. Then I broke out with a terrible skin rash all over my body. Basically at this point I thought I was the unluckiest person in the world. Finally by December I gave in and went to see a doctor (I hate the going to see doctors and I avoid them as much as possible). I quickly had a colonoscopy done and even though the initial view seemed clean my biopsies came back "early crohns" positive. I was given prednsone and asacol. The meds seemed to help but I was still not back to normal. My doctor then wanted to prescribe me remicade. I noticed that there were some serious side effects with the medicine and I decided to get a second opinion on what medicines I should take
In early may I saw my new doctor who walked in and told me while looking at my report that he isn't convinced I have crohns and wanted to do another colonoscopy. The new colonoscopy only showed mild inflammation (I was still taking high does steroids at this point). I then had a ct scan done on my small intestine and a blood test looking for crohns and another for celiac. All of them came back negative. Now the doctor wants to do more tests looking for crohns.
Here is my problem. Since I have changed doctors my health has been declining again and now I am not taking meds for crohns anymore. I am getting sicker and I won't be able to get my next test done until August!!! What should I do? Should I go back to my old doctor or is my new doctor right. Either way I don't know If I can make it until august. Has anyone had this problem with two doctors saying two different things? Let me know what u guys think.

Ps I am on a gluten free diet right now... It doesn't seem to help any
Pss thanks for reading this thread and sorry I made it so long lol

 

[teeny5]

I am not a doctor but to me it sounds like Crohn's. You just never know, the disease can be hard to diagnose because it can have different symptoms in people, but I think it is also because not many doctors actually have dealt with the disease. I think my GI doctor only has 2 of us as patients. Anyway, I would push for treatment. You have every right to feel better and if you are off meds and feel worse then I would be the squeaky wheel about getting a sooner appointment. If you have a sudden bout of unusual pain or bleeding you need to go to urgent care. You do not want to get an obstruction. Doctors are there to help us but ultimately you have to take your healthcare into your own hands and not let them push you around if you are having symptoms again.

 

[xJillx]

Hi and welcome! I am so sorry you are in this awful limbo. I agree with teeny that is sounds like Crohn's. Crohn's can be very difficult to diagnosis. There are members on here where it took them years to get their dx. And it is very telling that the medication did seem to help and you have gotten worse after you stopped taking them.

So, should you go back to your old doctor? I am not too sure about that either. Though you are feeling quite ill, you obviously aren't too bad inside being that your current GI is doubting the diagnosis. And this does happen. My GI says sometimes the symptoms don't accurately reflect what is going on inside. So, why start Remicade as your first GI suggested if things aren't too bad inside? In my opinion, save the big guns for when it is needed. But some adjustment to your treatment is in order being that you are still so unwell. So what to do? Perhaps you can discuss other treatment plans with your first GI or you can seek a 3rd opinion. I know the later sounds daunting, but many Crohn's patients have gone through several doctors before finding the right one.

I really hope you can find the right GI for you and one who will help you to feel better soon. Hang in there!

 

[Whatsup101]

Medication question?

Thanks xjillx and teeny5! I agree that I should probably get a third opinion. I do have one more question for you guys. If I do end up having crohns and the steroids don't seem like they are working whats the next step in medication. Like I said my first doctor wanted to put me on remicade but is there an intermediate medication between the two (steroids and remicade that is). Thanks again!

 

[Gems867]

Dr suggestion

I'm in Columbus too and go to Dr John Ward out of Mt Carmel East. He is great and I highly recommend him. I do not know how he deals with diagnosing as I was diagnosed in emergency surgery but I had a different dr to begin with Dr John Tzagournis and did not care for him. If your insurance covers Dr Ward I would totally suggest giving him a try.

http://www.ohiogastro.com/index.php

 

[Gems867]

Also if you do try Dr Ward get all your test results and colonoscopy pics from the previous 2 doctors. When I left my first dr I brought in my tests and colon pics and he looked over them and then did an upper endoscopy and did blood work and adjusted my meds.

 

[Whatsup101]

Thanks Gems867 for the heads up! I'll check out Dr. Ward depending on how my appt. With my new doctor goes tomorrow. Lol

 

[Gems867]

good luck with the new doc