Hello Everyone! Some of you know my story, but I wanted to add it to the undiagnosed club.
My name is Alisa, and I have had symptoms of an IBD for about 6 years now, starting at 15. My stomach would feel like it was ripping to shreds, and my parents just thought I was faking it or going crazy. Because of that I pretty much just ignored it. A few months later I went to the doctor, and she said, "oh, it must be acid reflux"...um, ok. Took the pills, nothing happened, went back. She realized she hadn't let me finish my symptoms, and then referred me to a GI. I was scared, so I didn't go. I went back to her at 17 to get some immunizations for college, and she asked about the GI stuff, and when I told her I didn't go, she freaked. She told me it is probably either crohns or colon cancer, and if I didn't go, it would get worse.
So I went, lol. The GI didn't even touch me, told me I had IBS, and gave me a prescription. He told me to come back in a month to see how it worked. When I came back, I explained that it didn't help much, and that my throat would close up on it. He called me a liar, said it must had been the flu. I told him I would not take it anymore, so he scoffed at me and wrote other RX. I never filled it and I didn't go back.
I lived with the symptoms for several years, knowing it could be something worse, but I didn't think anyone would listen. I hid it from all of my significant others, friends, and family.
Last January I ended up in the hospital from ab pain. It ended up being a ruptured ovarian cyst, with another one along side of it. It was detected by a CT scan, so my husband (BF at the time) said "you must not have crohns then, if the CT didn't show it!". 6 months later the abdomen pain came back full force, and I went to an urgent care to see if it was another ovarian cyst (I am on BC, so it was almost impossible that it was). He said it must be, gave me some antinausea meds and off I went. I ended up in two different ERs within a week because they kept telling me I wasnt dying and to go see a regular doctor (the pain was so bad, that I thought it needed to be taken care of THEN). The second ER diagnosed me with a abdominal hernia. I went to a surgeon later that week, and he found a hernia, but on a completely different area of my stomach than where I was in pain. I didn't understand, it wasn't even where the ER doc had poked me. I had hernia surgery (8 days before my wedding ~.~), and the rest I had from that made the other pain go away. So I assumed it was a hernia for so many years (which doesn't make any sense) and went on.
Last September the pain came back full force. I lost 12 pounds in one week, and I wouldn't eat for days. My husband was moving to Germany at the time (without me, I was in school, he is an officer in the US Army), and I was under a lot of stress. I went to my GI a week later, and he said this wasn't IBS, that I had an IBD or colon cancer. I was so glad someone was finally listening! When my husband found out, I was told to come to Germany to be with him while I got this sorted out. So within a week I was on a flight to Germany.
Since then I have had a colonoscopy and upper endoscopy (dec 10th), but the Army takes its sweet time to get things done. The GI who did my colonoscopy told me he saw nothing, but the army still hasn't released the biopsy results to see if it is microscopic. I had a doctors appointment yesterday (because the results were suppose to be in), and she said the next step, if the biopsies come back negative, is to either follow the GI's recommendations or go to a military hospital 4 hours away for a second opinion. I asked about the pill cam, and she said they wont do that, only exploratory surgery. I also asked for a "trial run" of crohns meds, and she refused that as well. She says I need to be on tramadol to keep the pain down until they diagnose me with something.
I think this is only located in my small intestine, because I have almost every symptom but the D multiple times a day, and I have seen that if it isn't in your large intestine, the D isn't as bad. I do however, have terrible inconsistency in my BMs. Mostly constipation, but D when I eat something that aggravates my condition. And when I do have it, it takes hours to get it to go away. Other symptoms I have is bad ab pain (about an 8 on the 1-10 pain scale) that is in a certain spot, lots of mucus in my stool, mouth ulcers, lots of gas, joint pain and muscle aches, fatigue, hair loss, hemmroids, and nausea. I'm probably forgetting something too, lol.
At this point, I just want answers. I am worried about the exploratory surgery, but if gets me a diagnosis, then I will deal with it. This disease, whatever it is, has pretty much taken my life from me. I went from a workaholic to a very slow individual, and I can't wait for that to change.
If anyone here wants to vent, at any time, my PM box is always open. I know exactly what all of you are going through!