Hi Jshnet. Well, I have been pancreatic insufficient. (for yrs) had failure to thrive as a child. Always trouble gaining weight, My Gi issues, well name them, I have been diagnosed. my family thought for yrs I had Chrons? My stomach issues have had me so debilitated for yrs and problems to function a half way normal life. (all this also from not a proper diagnose or treatment for many yrs. Well finally in 2010, at 80 lbs. malnusorption disorder, etc. I found a GI Dr out of this area. I was already on Enzymes RX as Malnusoption disorder. Failed the fecal test. So the GI Doc did a SOD test. (he decided I needed surgery) The gastro Drs here where just letting me hang. (last 10 yrs prior to this and wasting away) at this point I was on 5 Stomach meds!!! Someone somewhere here also wrote on my records anorexia!! Which followed me. As if I was doing this to myself. No Dr following a other DR. I was getting sicker and sicker. This is why I am having such a hard time, not getting a diagnose from A CF Center with the multitude of problems I already have. The GI Doc I found, I feel he saved my life. My bile ducs where a mess. Prior test showed, chronic inflammation, current inflammation, etc. The New GI Doctor did a ERCP?? Serious surgery. I had a 10% risk of getting pancritis, and sure enough before I left the surgery room I had it!! So now I have Chronic pancritis! Again where I live, and the enzymes I am on, not sure if it is a proper dose? Not sure of anything at this point. Not sure how or why things would be treated different from a CF Center with a specialist in the GI end?? I just have read when it comes to the pancreatic insuffienciecy on this site, many say make sure you see a GI CF Gastro. So this puts me at a loss. My GI doc called me back the other day. Ok, have not seen him now for 4 yrs, again because of insurance reasons, and even now it is worse. He told me to make a appointment to come in. I am sure since the Doctor does not handle the insurance end, might not even know, if I can get in or not because of the change in my insurance. Just a other problem. He said he was not surprised I had CF. But does not mean he is well versed on the CF problems with the GI?? Maybe he is. He mentioned surgery again. SO that scares me, with no diagnose of CF at this point, not being seen at a CF center and I wonder if it is something as simple as Medications, and more Enzyems? (not that anything is simple) But I sure wonder now, what kind of health would I be in if I have had the proper care? You know, as bad as my health is at this point, Surgery scares me, and this should all be being addressed at a CF Center, I would think!! Make's me wonder over all the yrs, the destruction of my stomach bile ducs, how this has affected my overall health and the condition I am in now?? Imagine being just left hanging from GI test, which require treatment. I had, had 4 colonoscopy in these 10 yrs , and told, well no infection and no cancer!! I could not even keep liquids down. I dropped from 102. 110 tops down to 80 lbs. All food, fluids, I could not keep down at all. The Colitis was bad also. Blood in the toilet. Fatigue so bad, SOB, all of it. In and out of the hospital. Just given fluids, low of vitamins, typical test done, Drs worried about me, and telling me to follow up with PCP. No one helped though. All this was in 2010 when I was diagnosed with Thyroid Hashimotos. (one Dr told me later, he was sure I was probably in a thyroid storm} I ended up with a pace maker. Many symptom's. I have IBS, IBD, Gastritis , Colitis, Spasmodic Colon.. Chronic pancritis. I just looked at that most recent Disc for a CT angio. (Chest pains) from the ER. 9-2014, you know the report on the disc states I have inflamed ducs, mentions the past surgery's and states it needs future evaluation. So again, this is not on the hard copy report at all!! I just find it unbelievable , they find something and do not inform me as the patient, leave half the things out they on the report itself, and no Doctor takes the time, to request these themselves, to see them. Well again, I guess I can say, the CF center what I went to, that Dr ordered the Disc of these Er trips. But again, he does not seem to be to concerned with any of my stomach issues related to the CF. He did offer to run the test for the GI issues, along with the mapping. (Only because my daughter made that clear at the appointment) No one is following through with any of my health conditions at this time. I took it upon myself last month to call my GI Doctor, to ask about the surgery I had done and let him know I probably have CF. My cystic Duc was plugged. He is not surprised as I told you. I am on the phone trying to take care of this stuff when I have the energy and cannot tell you how much it takes out of me. Need to go to bed now. Thanks for letting me vent!!
