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08-29-2012, 02:30 PM   #1
EJSC
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Hi everyone! I'm glad that I was able to find this forum, I don't feel like I'm sufferring alone anymore. I've posted this in another area on this forum but I feel that it gives a pretty decent background so I'll repost here. Thanks again for any advice


Iím new to all of this, so Iím not exactly sure where to start. So far I havenít been diagnosed with anything so Iíve been hesitant to post anything because I donít want to feel like Iím making a big deal out of noting. However, my Doctor (Primary and GI) believe I have Crohnís Disease.
Iím coming to all of you because Iím frustrated and now sure where to turn, so Iíll 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 í06). 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 wasnít 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 ďwasted his time because this obviously wasnít a urological problemĒ and stormed out. I was starting to lose patience. I go back to my primary and his reaction was ďhuhĒ Iím not really sure whatís wrong with you but maybe itís Crohns Disease. He refers me to a GI I have my first appointment with the GI and Iím 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 Iím 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 ďhuhĒ from my original primary I changed doctors). Primary says I need to have a Heart Cath ASAP just to make sure this all isnít 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. Iím either running to the toilet constantly or I canít go at all, when I eat I feel ill, if I donít eat I feel ill, pain has become a constant part of my life and I canít deal with it anymore. Iíve 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 doesnít 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) Iím concerned about not only the colonoscopy but any medical tests. I donít know what to do and Iím ready to just give up.
Iím looking for advice...
Thanks,
08-31-2012, 11:41 AM   #2
Cat-a-Tonic
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Hi EJSC, sorry your post was missed for a couple of days! Welcome to the forum and the club. I saw your post in the "My Story" section too and it looked like others there were telling you it might be time to switch GIs, if she won't see you until you have the scope and she won't listen when you say that you had a bad reaction to prep. I concur - it sounds like it's definitely time for a new doc! What prep was it that you had the reaction to? I'm wondering if you tried a different prep, if that might go better? Have you ever tried Miralax (over the counter laxative)? That can be used as a prep, I've done that one twice myself. It made me pretty dehydrated (I needed IV fluids both times) but otherwise it's easy to get down and hopefully wouldn't provoke a reaction.

Don't give up, keep fighting for answers. It definitely sounds like the first step is to find a doctor who listens to you and works with you (rather than one who refuses to see you or even return your phone calls!). Sometimes it takes a few tries to find a good GI who cares and knows their stuff. There are doctor reviews here on the forum, so have a look through that section and see if you can find a better one in your area. Good luck, and keep us posted on how you're doing. And again, welcome!
08-31-2012, 12:34 PM   #3
EJSC
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Join Date: Aug 2012
Location: Myrtle Beach, South Carolina
Hi Cat
Thanks for the welcome  This last week has been bad for me pain wise, a few times it was so bad I thought I was going to die(or I was hoping that I would). My partner has been a real trooper but sheís at her wits end. Her suggestion has been going to the ER, but those trips never go well, they keep running the same tests over and over again with no answers. Itís also a 4-5 hour wait and when youíre in pain sitting in a waiting room for 4 hours isnít high on lists of things to do.
I used Suprep for the Colonoscopy. I knew it was going to taste bad, dad doesnít cover it, and it was putrid and only got worse the more I drank. I had been feeling bloated (in general before I started and the all liquid diet for the 3 days before the prep didnít help) so it was difficult for me to drink the gallons of water required during the prep. It was difficult and I have hypertension (but no heart disease) one of the restrictions with the prep is not be used by anyone with a heart related condition (I donít know if the beta blockers I am taking had anything to do with the reaction I had. Thatís why I want to talk to the GI that isnít returning my calls). I also need someone to put my mind at ease that I wonít have a similar reaction again. At this point Iím refusing to have another Colonoscopy only because I havenít gotten a good answer on what happened the first time and no suggestions on using a different prep(if I was offered something else Iíd be willing to try.) Iíd also like someone to sit down and explain why Iím in blistering pain most of the time, so far all I have gotten is ďwe think itís Crohns and that can be painfulĒ...comming from a doctor that doesnít have it. Painful isnít the word, a toothache is painful, the pain Iíve been having I have a hard time describing...yeah itís been that bad)
Iím in the process of finding a new GI, as I have said previously I have an appointment with my Primary next week, Iím going to bring all my questions/concerns to him and see if he has a suggestion on a different GI. If he doesnít I hope he can give me something for pain and something to help manage mood swings until Iím able to make an appointment with someone else. Iím suffering and no one in the medical community seems to care.
Excuse my rant but like I said, this past week has been just awful.
08-31-2012, 03:24 PM   #4
Cat-a-Tonic
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So many doctors just don't "get it" when it comes to pain and awful symptoms like ours, I don't know if it's because doctors see people claiming to be in pain day in and day out and they just sort of tune it all out after awhile or what, or if they think everybody's just a pain pill addict or something and nobody's pain is actually real. I've seen some terrible doctors who totally blew me off, and I've seen some great doctors who acknowledged my pain and symptoms and did their best to help me. It just comes down to luck I think, to find a doctor who actually cares and tries to understand. I once saw a doctor who, upon learning that I am still undiagnosed, he looked me right in the eye and said something along the lines of, "I just want to take a minute to address how awful that must be, to suffer without answers for so long. That must be really difficult and I'm sorry." Well, I lost it right there in the office, started crying! I had never had a doctor say something like that to me. He wasn't my regular doctor, and although I really like my regular primary care doctor, I kind of wanted to switch to this guy because he was so compassionate. But I guess he doesn't work at that clinic anymore and I can't find him (can't find him on google either as he has a really common name), but he really left an impression on me that I'll never forget. Every doctor should be like that! Just take one minute to recognize that your patient is a human who is suffering! Anyway, rant over. Long story short, I think unless doctors suffer from something like this themselves, they really have no idea and most of them don't appear to try imagining what it's like for people like us. Particularly the undiagnosed folks like us who suffer without any treatment. I'm one of the really lucky ones in that my GI decided to treat me for IBD, and the treatment worked and I feel much better nowadays. Most doctors wouldn't do that. I'm rambling again. Anyway...

I wish you lots of luck with the primary care doc, I hope you can get some answers and a new GI referral out of him. And I hope you feel better soon too - in the meantime, hang in there! And honestly, if it were me and I couldn't get my GI to return my calls, I would be tempted to just go into the office and not leave until I got some answers. Sometimes my GI takes a week or so to get back to me, but he's never actually refused to respond - that's just crazy! Anyway, good luck, I hope you can get some answers soon!
08-31-2012, 05:26 PM   #5
EJSC
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Join Date: Aug 2012
Location: Myrtle Beach, South Carolina
Cat,
Iíve been undiagnosed for so long sometimes I feel like Iím going crazy. I canít feel as bad as I think I feel because if I did the Doctors would have found something, or if I was in in much pain as I think they would surely have given me something for pain. Then I realize Iím not one to run to a doctor over every ache and pain and Iím not one for taking pills (just donít like how they make me feel). Now, Iíll take anything that will ease the pain for even a few hours. This last week has been so horrible I havenít been able to function sitting around the house or staying in bed all day(because being flat on my back was about the only place where I wasnít in pain) isnít like me, I used to be a go getter and relatively active. Now, I donít do much except wait for the pain to start all over again. I had a Cardiologist tell me I was having medical problems because Iím fat and lazy, to start feeling better I needed to exercise. I told him I used to be active until I had gotten sick, I didnít get sick because I wasnít active.
I hate Doctors, I hate the way they treat us. Why canít they seem patients as people instead of pay checks? LOL Iíll stop now before I go on a rant on the nature of medical care in the U.S.
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