New Here

[EJSC]

Hello Group,
I’m new to all of this, so I’m not exactly sure where to start. So far I haven’t been diagnosed with anything so I’ve been hesitant to post anything because I don’t want to feel like I’m making a big deal out of noting. However, my Doctor (Primary and GI) believe I have Crohn’s Disease.

I’m coming to all of you because I’m frustrated and now sure where to turn, so I’ll start from the beginning. About 14 months ago I started having pain in my upper right abdomen with nausea and a general feeling of being. Off. After 3 days of pain I went to the ER, they said I had kidney stones, I was tested for kidney stones(negative) the Doctor then insisted that it MUST be my Gallbladder(I have my gallbladder removed in ’06). After that the Doctor insisted that it MUST me my pancreas (again negative). Long story short after 2 days of testing I was told that I had an ulcer and needed to follow up with my primary if the pain persisted. A week of terrible pain goes by before I make an appointment with a primary Doctor. This doctor swears that I had something called NASH disease(liver disease) and had high blood pressure(he was right on the hypertension),

I was tested again for liver disease as my white cell count was elevated and no one could explain why. Turns out it wasn’t liver disease or NASH disease or anything else. All I knew was I was in pain and no one could tell me what was wrong. After about a month the pain went away and I forgot about it. Then the pain came back and I went back through the tests and no answers. My primary finally felt that it was diverticulitis. A week of antibiotic treatment later I thought I was going to die. Another trip to the ER...more negative test results. My primary referred me to an Urologist, I explained my symptoms and the Urologist became angry that I had “wasted his time because this obviously wasn’t a urological problem” and stormed out. I was starting to lose patience. I go back to my primary and his reaction was “huh” I’m not really sure what’s wrong with you but maybe it’s Crohns Disease. He refers me to a GI I have my first appointment with the GI and I’m told that it most likely is Crohns Disease and I would need a colonoscopy (that is scheduled for a week after my initial appointment with the GI). The night I start the colonoscopy prep I have. What I can only describe as an allergic reaction. I was sort of breath, sweating, and crushing pain in my back/chest. This means another trip to the ER where they believe I’m having a heart attack (again everything came back negative) but I still had to spend a day in the hospital and had to cancel the colonoscopy. I spent a week having chest pains. Made an appointment with the Primary (a different primary because after I got “huh” from my original primary I changed doctors). Primary says I need to have a Heart Cath ASAP just to make sure this all isn’t being caused by my heart. Before that test I told the Cardiologist I was allergic to the Iodine Dye. He laughed it off. So I had a reaction after the procedure. To the point where even the nurses felt guilty I was having such a horrible time with the Cath.

This brings me to my current problem. I have been having unbelievable upper left abdomen and back pain, I mean close to the worst pain I have ever felt. I’m either running to the toilet constantly or I can’t go at all, when I eat I feel ill, if I don’t eat I feel ill, pain has become a constant part of my life and I can’t deal with it anymore. I’ve been calling my GI for 2 week and have played phone tag with the office. Today I got a phone call back from the office. The GI basically doesn’t want to see me again until after I have the colonoscopy, well after my last experience(the reaction I had with no one being able to explain what happened) I’m concerned about not only the colonoscopy but any medical tests. I don’t know what to do and I’m ready to just give up.

I’m looking for advice...
Thanks,
EJ

 

[liv]

Dear EJ,
What a horrible ordeal! I find my story was very similar to yours; even with every single Crohn's side effect it took almost 8 months to get a correct diagnosis. It took 3 doctors to figure out I had Erythema Nodosum (a common Crohn's side effect) and 2 specialists after that to tell me I had Crohn's. Just thought I'd let you know HANG IN THERE! It will get better!
So just some thoughts on how they can maybe diagnose you.. What exactly did you react to during your colonoscopy prep? Have you asked your GI if there is an alternative to what you did before so you can have a proper scope? And if all else fails can he diagnose you through a CT scan or MRI? I had a colonoscopy, and gastroscopy and they ended up having to do an MRI anyways just to "confirm".
Sending lots of support! Let us know what you find out

 

[EJSC]

Hi Liv,
Thanks for taking the time to reply Finally I don’t feel like I’m going through all of this on my own. For a while I felt like I was the only one in the world with this problem (when they say Crohn’s rules your life. No joke it really does. At least it has mine).
I don’t know what caused the problem with my Colonoscopy prep as I haven’t been able to see my GI yet. Getting an appointment with my GI is almost like asking for an act of God. I’ve been playing phone tag with the office for a week now. Today I got a message from the GI’s office, saying that the Doctor is insisting that I need to have a colonoscopy and she (the GI) isn’t willing to see me in the office until I have it. They don’t seem to understand/care that I had this strange reaction. My biggest thing is after everything I’ve gone through I’m terrified to have more testing.

 

[Angrybird]

Hello and welcome to the forum

I must say I find the care (if you can call it that) you have been given so far is appalling, I would say if the current GI is not going to be professional and continues to refuse to see you I would make an official complaint against themand then ask for a referral to a new GI. Someone needs to clarify what caused a problem for you with the last prep so they can see if there is an alternative prep they can give or sort out some alternative tests to be done. You certainly need to be able to see a doc who understands your concerns.

We do also have an undiagnosed club so do check this out as there is a great bunch here who can also offer advice and support: http://www.crohnsforum.com/forumdisplay.php?f=75.

I will be keeping fingers crossed that you can get an aswer soon, pls keep us updated on how you get on.

AB
xx

 

[EJSC]

AngryBird,
Hi and thanks for the reply. After another night of unbelievable pain(and I’ll be honest more than a few tears where I was praying I wouldn’t wake up in the morning just so I wouldn’t be in pain anymore) I made an appointment with my Primary. I was able to speak with his nurse (she was willing to listen to my concerns and said that while the colonoscopy was going to be necessary I needed to see if I can have an alternative test or use an alternative prep). I’m also going to see if I can be referred to the Medical University (I’m self-employed so I have no health insurance and doctors hate having to treat self-pays).
On the GI front I left a message yesterday afternoon and have not received a call back, I did call the office again today and got voicemail, I didn’t even bother to leave another message.
Thanks for the advice,
EJ

 

[David]

Hi EJSC,

Have you been given a CT Scan at any point during this?

Have any of your blood tests come back abnormal? If so, which?

I'm sorry you're having to go through all this I hope you're able to get the colonoscopy soon!

 

[EJSC]

Hi David,
I have had several CT Scans (both with and without contrast) according to the ER Doctors they have all come back normal. My blood work is abnormal, my white cell count is high, my liver functions are abnormal and my primary ran more blood work a little over a month ago, for the life of me I can’t remember the test he ran but he said it indicated that I had inflammation(a good indicator for Crohns..At this point I’m not sure what to think).
Because of the reaction to the colonoscopy prep I need to speak to my GI, but she’s not returning my calls because she isn’t willing to believe I had an issue with the prep she though I canceled the procedure because I was afraid of having it.

 

[David]

It seems to me that getting a new GI might be in order. If she's not returning your calls now, I think that's a sign. And doing it early can be better before they've dealt with your disease for a long time. Find a GI you really click with.

 

[EJSC]

David,
I made the decision to find a new GI as soon as I had to argue with the nurse about an appointment. I have an appointment with my primary next week. I hope he can refer me to a different GI. It’s getting through the weekend. I’ve been in a lot of pain. But I’ll get through it; I’ve done it this long.

 

[David]

Good for you! I'm glad you're not putting up with BS.

 

[EJSC]

After 14 months of this I’m not willing to treat the Doctors like they know everything. I’m also not willing to be treated like I’m a disease instead of a person. I’m a person with a disease, not a disease with legs. I’m done being treated like a doormat. If a Doc(any Doc) can’t treat me like a person I’m not going to deal with them.