Cat-a-Tonic
Super Moderator
I thought I'd start a thread for updates about myself - I will also still post in the big mega-thread but thought I'd put all the key details in here. (Warning, this may end up being just as long as the mega-thread! I am known to ramble on. )
Here's a rundown of everything so far:
Mild symptoms high school and college, possibly even earlier than that. Stuff like "sensitive stomach" and recurrent anal fissures, also recurrent UTIs. Nothing besides the UTIs was ever bad enough to go to the doctor for, and they never ascertained the cause of my frequent UTIs.
Onset of acute symptoms hit Oct 9, 2009. Horrible nausea, weakness, dizziness, diarrhea, abdo pain hit me out of the blue. Symptoms lasted for weeks, was eventually (mis)diagnosed by an urgent care physician as having viral gastroenteritis. Felt somewhat better after getting IV fluids and anti-nausea meds.
Felt more or less okay for several weeks, although never quite felt like my old self ever again. Second round of bad symptoms hit in late Nov 09. Went to GP who thought it was unusual but not unheard of to have viral gastroenteritis twice in 2 months.
Round 3 of symptoms hit in Dec 09. My GP wasn't available so I went to see a different GP in the same clinic. She ordered many blood & stool tests. The only test that came back abnormal was a blood test indicating my sodium was low. I was told "eat a bag of chips and you'll be fine." Blood tests included celiac & thyroid, stool tests looked for bacteria or parasites. All these came back normal.
After having more flare-ups, my GP referred me to a GI. I first saw my GI in Feb '10. At the time he mentioned Celiac and Crohn's as possible suspects.
April '10 I had my colonoscopy. Scope was normal, GI took about a dozen biopsies which also came back normal.
June '10 I had a horrible flare. GI and GP were unavailable so I went to see yet another GP in the same clinic. This doctor was awful - he took one look at my chart & told me that I have IBS and that I "look depressed" and proceeded to offer me several anti-depressants. I was so mad, yelled at him that of course I'm depressed, anyone would be with symptoms like this and no answers! I then put my foot down and demanded to try prednisone. The bad GP agreed on the condition that I also try Dicyclomine (Bentyl), an IBS med. I agreed. Bentyl did nothing for me, and the prednisone worked wonders.
I was on 10 mg pred for 5 days and those were the most wonderful 5 days - I felt euphoric and my symptoms all went away! Symptoms came back with a vengenace after the 5 days were up, and my blood pressure plummeted. I ended up in urgent care again. After IV fluids and rest, my BP stayed dangerously low. I finally googled low BP and found that low sodium is a common cause, and I remembered the "eat a bag of chips" thing, so I had some soy sauce (high in sodium) and instantly felt better. I'm not sure if the pred or a flare caused my BP to drop like that.
I saw my GI shortly thereafter, and he was very upset that I had taken the steroids without consulting with him. He said he'd never give steroids to an undiagnosed person, that it wasn't safe. But when I told him how well the pred worked, he changed his tune. I don't think he fully believed that I had an IBD until I told him the pred worked. He ordered more tests for me, including an abdominal CT (not CT enterography). Again, this came back normal on my intestines (it did have an incidental finding that I have nodules on my liver).
July '10 (I think, I'm going by memory on these dates so I may be a bit off on a couple of them!) I had an ACTH blood test for Addison's disease, since Addison's can also cause gastrotinestinal symptoms and responds to pred. This test came back on the low end of normal and Addison's was ruled out.
Aug '10 I had an upper endoscopy with biopsies. Again, all came back normal, but this meant that Celiac was definitely ruled out.
Sept '10 I had the pill cam. I had very high hopes for this test, but once again the results were normal.
At some point around the same time period that I had the pill cam, I also had an MRI of my liver to check the nodules. They were diagnosed as benign focal nodular hyperplasias and not the cause of any of my symptoms.
Oct '10, one year after onset of acute symptoms, my GI decided to try me on Entocort, which is similar to prednisone but milder, not systemic, fewer side effects, and my GI felt it was safer to have me on it for a longer time. The only side effect I experienced was chronic headaches, which were controlled well by 25 mg of Amitriptyline. I started Entocort at 9 mg for 6 weeks. I tried to taper to 6 mg at the 6 week mark, but I flared up again so my GI put me back on 9 mg for another 6 weeks. After that 6 weeks I successfully tapered, and I stayed at 6 mg for 4 months, making 7 months total.
I successfully came off of Entocort in April '11 and have been in or near remission since then. I've had plenty of other related issues in my near-remission state, including migraines, acid reflux, gastritis, arthritis, bad side effects to meds (specifically Compazine and Hyoscyamine). If I get too stressed or eat the wrong thing my symptoms come back and hang around for a couple of days.
It's been a bumpy road, but I'm finally feeling somewhat well again and am again able to exercise, go out to eat, make plans, and just generally live a mostly normal life. I feel in a way like I'm a success story, that even if you don't get a diagnosis right away, you can still get into remission and live your life and feel well & be happy! I'm hoping the other undiagnosies here can get some hope out of my story. I've been through horrible depression, frustration, exhaustion and devastation with this miserable illness, but there is a light at the end of the tunnel! You just have to keep fighting to get there.
Here's a rundown of everything so far:
Mild symptoms high school and college, possibly even earlier than that. Stuff like "sensitive stomach" and recurrent anal fissures, also recurrent UTIs. Nothing besides the UTIs was ever bad enough to go to the doctor for, and they never ascertained the cause of my frequent UTIs.
Onset of acute symptoms hit Oct 9, 2009. Horrible nausea, weakness, dizziness, diarrhea, abdo pain hit me out of the blue. Symptoms lasted for weeks, was eventually (mis)diagnosed by an urgent care physician as having viral gastroenteritis. Felt somewhat better after getting IV fluids and anti-nausea meds.
Felt more or less okay for several weeks, although never quite felt like my old self ever again. Second round of bad symptoms hit in late Nov 09. Went to GP who thought it was unusual but not unheard of to have viral gastroenteritis twice in 2 months.
Round 3 of symptoms hit in Dec 09. My GP wasn't available so I went to see a different GP in the same clinic. She ordered many blood & stool tests. The only test that came back abnormal was a blood test indicating my sodium was low. I was told "eat a bag of chips and you'll be fine." Blood tests included celiac & thyroid, stool tests looked for bacteria or parasites. All these came back normal.
After having more flare-ups, my GP referred me to a GI. I first saw my GI in Feb '10. At the time he mentioned Celiac and Crohn's as possible suspects.
April '10 I had my colonoscopy. Scope was normal, GI took about a dozen biopsies which also came back normal.
June '10 I had a horrible flare. GI and GP were unavailable so I went to see yet another GP in the same clinic. This doctor was awful - he took one look at my chart & told me that I have IBS and that I "look depressed" and proceeded to offer me several anti-depressants. I was so mad, yelled at him that of course I'm depressed, anyone would be with symptoms like this and no answers! I then put my foot down and demanded to try prednisone. The bad GP agreed on the condition that I also try Dicyclomine (Bentyl), an IBS med. I agreed. Bentyl did nothing for me, and the prednisone worked wonders.
I was on 10 mg pred for 5 days and those were the most wonderful 5 days - I felt euphoric and my symptoms all went away! Symptoms came back with a vengenace after the 5 days were up, and my blood pressure plummeted. I ended up in urgent care again. After IV fluids and rest, my BP stayed dangerously low. I finally googled low BP and found that low sodium is a common cause, and I remembered the "eat a bag of chips" thing, so I had some soy sauce (high in sodium) and instantly felt better. I'm not sure if the pred or a flare caused my BP to drop like that.
I saw my GI shortly thereafter, and he was very upset that I had taken the steroids without consulting with him. He said he'd never give steroids to an undiagnosed person, that it wasn't safe. But when I told him how well the pred worked, he changed his tune. I don't think he fully believed that I had an IBD until I told him the pred worked. He ordered more tests for me, including an abdominal CT (not CT enterography). Again, this came back normal on my intestines (it did have an incidental finding that I have nodules on my liver).
July '10 (I think, I'm going by memory on these dates so I may be a bit off on a couple of them!) I had an ACTH blood test for Addison's disease, since Addison's can also cause gastrotinestinal symptoms and responds to pred. This test came back on the low end of normal and Addison's was ruled out.
Aug '10 I had an upper endoscopy with biopsies. Again, all came back normal, but this meant that Celiac was definitely ruled out.
Sept '10 I had the pill cam. I had very high hopes for this test, but once again the results were normal.
At some point around the same time period that I had the pill cam, I also had an MRI of my liver to check the nodules. They were diagnosed as benign focal nodular hyperplasias and not the cause of any of my symptoms.
Oct '10, one year after onset of acute symptoms, my GI decided to try me on Entocort, which is similar to prednisone but milder, not systemic, fewer side effects, and my GI felt it was safer to have me on it for a longer time. The only side effect I experienced was chronic headaches, which were controlled well by 25 mg of Amitriptyline. I started Entocort at 9 mg for 6 weeks. I tried to taper to 6 mg at the 6 week mark, but I flared up again so my GI put me back on 9 mg for another 6 weeks. After that 6 weeks I successfully tapered, and I stayed at 6 mg for 4 months, making 7 months total.
I successfully came off of Entocort in April '11 and have been in or near remission since then. I've had plenty of other related issues in my near-remission state, including migraines, acid reflux, gastritis, arthritis, bad side effects to meds (specifically Compazine and Hyoscyamine). If I get too stressed or eat the wrong thing my symptoms come back and hang around for a couple of days.
It's been a bumpy road, but I'm finally feeling somewhat well again and am again able to exercise, go out to eat, make plans, and just generally live a mostly normal life. I feel in a way like I'm a success story, that even if you don't get a diagnosis right away, you can still get into remission and live your life and feel well & be happy! I'm hoping the other undiagnosies here can get some hope out of my story. I've been through horrible depression, frustration, exhaustion and devastation with this miserable illness, but there is a light at the end of the tunnel! You just have to keep fighting to get there.