Hi there,
I was diagnosed with Crohns of last March and lurked on the forums until now. My Crohns started with mild pain near my appendix. I actually waited about a week in December before going in.
At first I thought I had appendicitis based on how I was feeling but I had a CT scan and I was told to go to the hospital immediately. Doctors saw that my cecum and illieum were thickened, but, that my appendix was above normal size too. I started on flygil and cipro for two weeks and then entercort. In February of 2013 I had a colonoscopy which showed ulceration and abscesses. Then another CT scan. Docs wernt sure but gave me a 80%ish percent chance it was my appendix. I went into surgery in late March last year and woke up to a confirmation of Crohns and part of my cecum and illeium removed.
I stayed off meds until June when I had a second colonoscopy which showed superficial ulceration at the anastomoses. I was prescribed lialda because of non-Hodgkin's lymphoma risk in my family and continued the medication until September.
In mid September I came home from work with perfuse rectal bleeding. I waited and it did not stop. With direction from the on call GI I went to the ER but there was little they could do until the morning. The morning after I had my 3rd colonoscopy which found no ulceration except one area with a staple sticking out. Up until this point I thought my resection was done with sutras. During the colonoscopy my GI removed the staple and cauterized the wound. I had concerns that the site would rebleed but was told that lightning shouldn't strike twice.
Despite my concerns, two weeks before thanksgiving I began bleeding again. I again went into the ER and again had to wait till the morning. This time I unfortunately passed out from either dehydration or blood loss and fell. In the process I cut my lip. I had my 4th colonoscopy which showed no ulceration except at the area where the staple was. My surgeon and GI decided it was best to revise the anastomoses incase my bowls were irritated by the staples. I took a capsule cam to ensure there was bleeding from nowhere else which it confirmed.
Like my first surgery, my second was done as open surgery. And it took me a week to leave the hospital. Things were fine all through December, unfortunately I again started bleeding... Fearing complications from surgery I went in again to the ER. In the morning I had my 5th colonoscopy in a months span. My GI was out at the time but his partner found superficial ulceration at the anastomoses which shocked me given it was a month out.
That brings me to today. I'm starting to slow off the entercort, I'm still on lialda, and I've gone through my second loading infusion of Remicade. Luckily I'm in good spirits and I feel it could always be worse. Despite loosing my illiocecal valve during my first surgery, I don't seem to have typical crohns symthoms. I can't tell that problems like bleeding are happening until it starts.
Thanks to this forum I've accomplished a lot research and came upon great information. I've been supplementing vitamin d after I had extremely low levels and also magnesium, zinc, vitamin k, and folic acid.
Anyways I just wanted to share my brief story and see if others were in the same boat as me.
I was diagnosed with Crohns of last March and lurked on the forums until now. My Crohns started with mild pain near my appendix. I actually waited about a week in December before going in.
At first I thought I had appendicitis based on how I was feeling but I had a CT scan and I was told to go to the hospital immediately. Doctors saw that my cecum and illieum were thickened, but, that my appendix was above normal size too. I started on flygil and cipro for two weeks and then entercort. In February of 2013 I had a colonoscopy which showed ulceration and abscesses. Then another CT scan. Docs wernt sure but gave me a 80%ish percent chance it was my appendix. I went into surgery in late March last year and woke up to a confirmation of Crohns and part of my cecum and illeium removed.
I stayed off meds until June when I had a second colonoscopy which showed superficial ulceration at the anastomoses. I was prescribed lialda because of non-Hodgkin's lymphoma risk in my family and continued the medication until September.
In mid September I came home from work with perfuse rectal bleeding. I waited and it did not stop. With direction from the on call GI I went to the ER but there was little they could do until the morning. The morning after I had my 3rd colonoscopy which found no ulceration except one area with a staple sticking out. Up until this point I thought my resection was done with sutras. During the colonoscopy my GI removed the staple and cauterized the wound. I had concerns that the site would rebleed but was told that lightning shouldn't strike twice.
Despite my concerns, two weeks before thanksgiving I began bleeding again. I again went into the ER and again had to wait till the morning. This time I unfortunately passed out from either dehydration or blood loss and fell. In the process I cut my lip. I had my 4th colonoscopy which showed no ulceration except at the area where the staple was. My surgeon and GI decided it was best to revise the anastomoses incase my bowls were irritated by the staples. I took a capsule cam to ensure there was bleeding from nowhere else which it confirmed.
Like my first surgery, my second was done as open surgery. And it took me a week to leave the hospital. Things were fine all through December, unfortunately I again started bleeding... Fearing complications from surgery I went in again to the ER. In the morning I had my 5th colonoscopy in a months span. My GI was out at the time but his partner found superficial ulceration at the anastomoses which shocked me given it was a month out.
That brings me to today. I'm starting to slow off the entercort, I'm still on lialda, and I've gone through my second loading infusion of Remicade. Luckily I'm in good spirits and I feel it could always be worse. Despite loosing my illiocecal valve during my first surgery, I don't seem to have typical crohns symthoms. I can't tell that problems like bleeding are happening until it starts.
Thanks to this forum I've accomplished a lot research and came upon great information. I've been supplementing vitamin d after I had extremely low levels and also magnesium, zinc, vitamin k, and folic acid.
Anyways I just wanted to share my brief story and see if others were in the same boat as me.
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