I've been browsing around in the last couple of days, and it looks like there's a lot of good support and information here, so I decided to sign up.
I was officially diagnosed with Crohn's Colitis at the beginning of October, after having been tentatively diagnosed with Ulcerative Colitis in July.
As a kid, I had some stress-related stomach problems, mainly mild pain and nausea, that only lasted about a year (age 6). I've had some trouble with depression/dysthymia officially from when I was 15, but potentially as far back as age 8; I mention this, because I have read in a few places that there seems to be a correlation of pre-existing conditions such as depression, schizophrenia, etc, and Crohn's.
At 21 I became mildly lactose intolerant. A few slices of pizza or a bowl of ice cream was ok...taking a lactase supplement would help with anything more, and I switched to non-lactose beverages for cereal (Almond milk having become my preference).
About 3 years ago (I was 25) I had what I think was my first real flare-up. I was going through a stressful move, and started having diarrhea, which later became bloody. I was given antibiotics, went to a GI specialist, and almost had a colonoscopy, but the bleeding seemed to come and go with Zyrtec--I stopped the Zyrtec in prep for the colonoscopy, and the bleeding stopped. When my allergies started to bother me again, I asked if I could resume it and was told it was ok. The bleeding came back when I started the Zyrtec again, so I stopped it, and the bleeding stopped, too. I did a little research and found it as a rare but documented side-effect. The GI doctor said that was probably the cause, and I figured that was the end of it.
This past June (just a few days after my 28th birthday--my body seems to like giving me health problems as birthday presents) I started with bowel problems that took a path much like 3 years ago. Initially I thought I had overdone dairy and such--the night before the diarrhea started, I'd had taco bell for dinner, and then ice cream later on. When it persisted, I went to the doctor, and they gave me an antibiotic. I called them back when it didn't improve for a few days (and I was seeing blood by then, and having bad pains in my gut), and they switched me to something stronger--Metronidazole, I think. Every few days I seemed to be back and forth with feeling better or not. I finished the course, feeling a little better, and then got worse again...that time when I called the doctor, he said go to the ER.
I spent 19 days in the hospital. Basic blood tests were inconclusive, the colonoscopy looked like Ulcerative Colitis to the GI doctor, but the biopsies didn't give results for anything particular. Pretty much my entire colon was ulcerated and inflamed. They had to slowly rule out various sorts of infections before they could do much. A sigmoidoscopy showed some signs that were looking more like Crohn's, but another blood test had a weak positive for Ulcerative Colitis. In the midst of all this, they had to give me percocet for the pain. They also started giving me Asacol and Prednisone. I was also on a liquid diet for most of the time.
They started me on Remicade, which had me starting to improve by the next day, started giving me some semi-solid food, and within a few days of that I was discharged.
I'm a teacher, so I didn't have to worry about missing work or having to go back right away, which was a big relief. I had Remicade treatments over the following weeks, but I found myself tired and achy in the days before the next one would come. My GI doc also ordered a prometheus test to check for genetic markers...ultimately that came back positive for Crohn's, and he changed my diagnosis then. Looking at my symptoms and my bowel movements, things seem consistent with that diagnosis.
I've been switched from Remicade to Humira, since the Remicade seemed to be wearing off too soon, and an injection at home, even though more frequent, seems more convenient to me than taking a day to visit the hospital.
I'm tapering off the Prednisone...I had been almost off of it before, but with the Remicade wearing off too soon, the GI brought my dose back up. At this point I'm trying to be careful with my diet...I get the occasional twinge in my bowels and more gas than I used to, but otherwise that seems almost back to normal--it's close enough that I can deal with it. I had lost 30 pounds in the hospital, but gained it all back--a bad thing in my case, since I'm overweight. I'm hoping it's because of the Prednisone... I'm also having recurring problems with aches and fatigue, some days more than others...I haven't noticed a pattern yet. Also losing a lot of hair...it isn't obvious to look at me, maybe since I have a lot of hair, but way too much comes off when I brush it, wash it, or just run my fingers through it. GP said it's not unlikely from the medications and my condition. Emotionally, I think I've gotten through the worst parts for now...it's just the frustration of the ongoing things, not always having energy, and the responses I imagine getting from other people (stuff like "but you're still young," which thankfully hasn't come about yet).
I was officially diagnosed with Crohn's Colitis at the beginning of October, after having been tentatively diagnosed with Ulcerative Colitis in July.
As a kid, I had some stress-related stomach problems, mainly mild pain and nausea, that only lasted about a year (age 6). I've had some trouble with depression/dysthymia officially from when I was 15, but potentially as far back as age 8; I mention this, because I have read in a few places that there seems to be a correlation of pre-existing conditions such as depression, schizophrenia, etc, and Crohn's.
At 21 I became mildly lactose intolerant. A few slices of pizza or a bowl of ice cream was ok...taking a lactase supplement would help with anything more, and I switched to non-lactose beverages for cereal (Almond milk having become my preference).
About 3 years ago (I was 25) I had what I think was my first real flare-up. I was going through a stressful move, and started having diarrhea, which later became bloody. I was given antibiotics, went to a GI specialist, and almost had a colonoscopy, but the bleeding seemed to come and go with Zyrtec--I stopped the Zyrtec in prep for the colonoscopy, and the bleeding stopped. When my allergies started to bother me again, I asked if I could resume it and was told it was ok. The bleeding came back when I started the Zyrtec again, so I stopped it, and the bleeding stopped, too. I did a little research and found it as a rare but documented side-effect. The GI doctor said that was probably the cause, and I figured that was the end of it.
This past June (just a few days after my 28th birthday--my body seems to like giving me health problems as birthday presents) I started with bowel problems that took a path much like 3 years ago. Initially I thought I had overdone dairy and such--the night before the diarrhea started, I'd had taco bell for dinner, and then ice cream later on. When it persisted, I went to the doctor, and they gave me an antibiotic. I called them back when it didn't improve for a few days (and I was seeing blood by then, and having bad pains in my gut), and they switched me to something stronger--Metronidazole, I think. Every few days I seemed to be back and forth with feeling better or not. I finished the course, feeling a little better, and then got worse again...that time when I called the doctor, he said go to the ER.
I spent 19 days in the hospital. Basic blood tests were inconclusive, the colonoscopy looked like Ulcerative Colitis to the GI doctor, but the biopsies didn't give results for anything particular. Pretty much my entire colon was ulcerated and inflamed. They had to slowly rule out various sorts of infections before they could do much. A sigmoidoscopy showed some signs that were looking more like Crohn's, but another blood test had a weak positive for Ulcerative Colitis. In the midst of all this, they had to give me percocet for the pain. They also started giving me Asacol and Prednisone. I was also on a liquid diet for most of the time.
They started me on Remicade, which had me starting to improve by the next day, started giving me some semi-solid food, and within a few days of that I was discharged.
I'm a teacher, so I didn't have to worry about missing work or having to go back right away, which was a big relief. I had Remicade treatments over the following weeks, but I found myself tired and achy in the days before the next one would come. My GI doc also ordered a prometheus test to check for genetic markers...ultimately that came back positive for Crohn's, and he changed my diagnosis then. Looking at my symptoms and my bowel movements, things seem consistent with that diagnosis.
I've been switched from Remicade to Humira, since the Remicade seemed to be wearing off too soon, and an injection at home, even though more frequent, seems more convenient to me than taking a day to visit the hospital.
I'm tapering off the Prednisone...I had been almost off of it before, but with the Remicade wearing off too soon, the GI brought my dose back up. At this point I'm trying to be careful with my diet...I get the occasional twinge in my bowels and more gas than I used to, but otherwise that seems almost back to normal--it's close enough that I can deal with it. I had lost 30 pounds in the hospital, but gained it all back--a bad thing in my case, since I'm overweight. I'm hoping it's because of the Prednisone... I'm also having recurring problems with aches and fatigue, some days more than others...I haven't noticed a pattern yet. Also losing a lot of hair...it isn't obvious to look at me, maybe since I have a lot of hair, but way too much comes off when I brush it, wash it, or just run my fingers through it. GP said it's not unlikely from the medications and my condition. Emotionally, I think I've gotten through the worst parts for now...it's just the frustration of the ongoing things, not always having energy, and the responses I imagine getting from other people (stuff like "but you're still young," which thankfully hasn't come about yet).
I'm so glad you're doing a lot better now though. Long may it continue 