My story:
I started having GI symptoms about 8 months ago (symptoms that were bad enough for me to finally acknowledge), and the pain was becoming progressively worse & more frequent. I saw a GP finally around Christmas time. He listened to my symptoms, poked on my belly for a minute, diagnosed me with IBS, gave me a prescription for Bentyl & sent me on my way. At that point in time, the pain was so bad that I was diaphoretic, and the location was more indicative of gall bladder issues. A few weeks later, I was in the ER with RUQ pain & epigastric pain that was bad enough to frighten me. Nothing was found in my lab work & they ordered an ultraound of the gall bladder. I saw a new GP shortly after that (having sense enough to know that the previous doctor was an idiot), and I was ordered a few more tests to rule out gall bladder disease. The GP said that if my tests came back negative she would immediately refer me to a GI physician.
Of course, the tests were negative, and I started seeing the GI doc at the end of January. The GI doctor ordered some labs & CT scans & scheduled me for an upper GI. This test revealed GERD, esophagitis, and erosive gastritis. I was started on Nexium & told to follow up in 6 weeks. Before the 6 weeks was up, my lower GI problems had worsened. The D had become so severe, and the pain had increased to the point that I could no longer eat solid food. After a few weeks of popsicles and jello, the doc was able to get me in for a colonoscopy. This showed inflammation in the terminal illeum. She ordered a small bowel follow through, which confirmed the inflammation of the illeum.
I was initially started on Entocort and had almost immediate relief of the D, but I had an allergic reaction to it & had to stop taking it. Then, I was started on Pentasa.
Since being on Pentasa, I am able to eat solid food again (I guess I should view this as an improvement). My diet is very limited right now: I basically live off of carbohydrates and vitamin supplements. I cannot eat vegetables, most fruits, red meat, or large amounts of any meat (without a worsening of symptoms). I am still having symptoms such as D and pain. Some days it feels as though an ice pick is stabbing me in various places throughout the abdomen. The fatigue has been pretty bad as well.
My GI recently ordered a blood test to look for active disease. She is considering starting Remicade, since I am still having symptoms. The blood test was negative (not sure what this means for me...wrong diagnosis or continuation of symptoms despite inactive disease). Now I am waiting for her to decide if she wants to proceed with a pill cam test or keep me on the Pentasa that is not effective at treating my symptoms. I have been very frustrated with this situation. I want to feel better and have my life back, but it doesn't seem to be an urgent issue for the doctor. I just sit here praying for things to improve. I am starting to come to the realization that this could be my life from this point forward, considering I have been diagnosed with a chronic illness. I wait patiently for answers and results. I am very thankful that this was caught fairly early, but I am unsure of what to expect in the future.
Thanks for reading my story. Sorry it is so long. Obviously I have kept this business to myself for quite some time.
I started having GI symptoms about 8 months ago (symptoms that were bad enough for me to finally acknowledge), and the pain was becoming progressively worse & more frequent. I saw a GP finally around Christmas time. He listened to my symptoms, poked on my belly for a minute, diagnosed me with IBS, gave me a prescription for Bentyl & sent me on my way. At that point in time, the pain was so bad that I was diaphoretic, and the location was more indicative of gall bladder issues. A few weeks later, I was in the ER with RUQ pain & epigastric pain that was bad enough to frighten me. Nothing was found in my lab work & they ordered an ultraound of the gall bladder. I saw a new GP shortly after that (having sense enough to know that the previous doctor was an idiot), and I was ordered a few more tests to rule out gall bladder disease. The GP said that if my tests came back negative she would immediately refer me to a GI physician.
Of course, the tests were negative, and I started seeing the GI doc at the end of January. The GI doctor ordered some labs & CT scans & scheduled me for an upper GI. This test revealed GERD, esophagitis, and erosive gastritis. I was started on Nexium & told to follow up in 6 weeks. Before the 6 weeks was up, my lower GI problems had worsened. The D had become so severe, and the pain had increased to the point that I could no longer eat solid food. After a few weeks of popsicles and jello, the doc was able to get me in for a colonoscopy. This showed inflammation in the terminal illeum. She ordered a small bowel follow through, which confirmed the inflammation of the illeum.
I was initially started on Entocort and had almost immediate relief of the D, but I had an allergic reaction to it & had to stop taking it. Then, I was started on Pentasa.
Since being on Pentasa, I am able to eat solid food again (I guess I should view this as an improvement). My diet is very limited right now: I basically live off of carbohydrates and vitamin supplements. I cannot eat vegetables, most fruits, red meat, or large amounts of any meat (without a worsening of symptoms). I am still having symptoms such as D and pain. Some days it feels as though an ice pick is stabbing me in various places throughout the abdomen. The fatigue has been pretty bad as well.
My GI recently ordered a blood test to look for active disease. She is considering starting Remicade, since I am still having symptoms. The blood test was negative (not sure what this means for me...wrong diagnosis or continuation of symptoms despite inactive disease). Now I am waiting for her to decide if she wants to proceed with a pill cam test or keep me on the Pentasa that is not effective at treating my symptoms. I have been very frustrated with this situation. I want to feel better and have my life back, but it doesn't seem to be an urgent issue for the doctor. I just sit here praying for things to improve. I am starting to come to the realization that this could be my life from this point forward, considering I have been diagnosed with a chronic illness. I wait patiently for answers and results. I am very thankful that this was caught fairly early, but I am unsure of what to expect in the future.
Thanks for reading my story. Sorry it is so long. Obviously I have kept this business to myself for quite some time.
to hear you have been through so much these past months, I hope you can find a 'normal' you are happier with than what you have now. I am at a point where I haven't been diagnosed fully either, bits of my story are around, and so I definitely can understand your frustrations of not wanting everyday to be painful and wanting your life back. Something I have learned here is that CD is very illusive and blood tests can come back normal even when someone is in severe pain and flaring. But take care and keep us posted on how things are going for you.
