J
Jackie
Guest
Hello All - first I want to say how grateful I am to have come across this forum. Don’t know about anyone else, but sometimes I feel so incredibly alone in my venture and am so glad to read all of these personal stories that mirror what I am going through or have gone through.
I am 38 years old. For probably the last 10 years I have had troubles off and on with being constipated for several days and then horrible diarrhea for a day or two. Sometimes I would be fine and go for weeks with no problems and then it would rear its ugly head again. Doctors kind of told me the same thing. Reduce stress, need to drink more water, eat more fiber, exercise more, maybe you might have a slight case of IBS so we can think about Zelnorm if you want to try....blah blah, blah. About 2 1/2 years ago, I started to bleed when I would poop. Thought I just had internal hemorrhoids which I have had before, but since I have family history of colon cancer, I got a little scared. Called a gastroenterologist and they scheduled a colonoscopy. I was a little out of it when I came to and all I heard was "No cancer, found ulcers, did biopsy, small internal hemorrhoids and will call in one week if anything". (This is kind of important for what came to be a few weeks ago). SO, I thought nothing more except that I was very relieved about the no cancer and have frustratingly "lived with it".
Back in February I got really sick with a fever and developed all of these ulcers in my mouth and back of my throat. Without the very, VERY long story behind all of that, for the past four months I have been on several courses of antibiotics, had my cheek swell repeatedly (PLEASE tell me someone else had/has that happen) and have been on tons of steroids for the swelling. I saw two doctors, got pushed off to two ENT's, a dentist, an oral surgeon and finally an oral pathologist. He did a biopsy on one of the swollen places in my cheek as well as one of the ulcers that never would completely heal. He calls me the next day and asks me if I have ever had problems with my stomach. I begin to tell him what has gone on with me for the last several years (Didn’t ever mention my tummy problems, because I never, ever thought that my cheek swelling and ulcers in my mouth had anything at all to do with my other end!). He proceeded to tell me that my ulcer had granulomas - YIKES - and that was something that usually was present in someone with Crohn's disease. And that a lot of times those ulcers are something that will happen. Well, I made an appointment with a gastroenterologist that some friends recommended (one of them has diverticulitis and has seen him for years). I got a copy of my old colonoscopy report and it said that I was supposed to call them in one week for lab reports. WOW! I about fell over. There were ulcers around my ileum, lymphoid aggregates, ileatic swelling and some granulomas...and a few other weird fun things. It said outside possibility of Crohn's and that I should repeat a colonoscopy in a year. I am mad they never called, but it was my responsibility to follow up on my health as well. And it is nothing I can do anything about now in the present day.
So, yesterday was my first visit with the gastroenterologist I will be seeing. He is very nice and won't definitively come out and say it is Crohn's, but insinuates it highly. He said that we will go through a ruling-out process to make sure that it isn’t something else like Ulcerative Colitis before he is even willing to discuss treatment plans. They took a whole lot of blood yesterday; I have a small bowel series set up for Friday and then another colonoscopy in early August, which seems so far away. I am tired. I run a low-grade fever off and on and feel slightly ucky all the time. Am sick of whining and feel pretty alone in this whole deal. My husband understands, but I think he is frustrated as well with my face swelling, recurrent ulcer deal and in general just being grumpy.
While I am grateful to that pathologist that finally gave me a possible answer, it is sure not what I really wanted to hear. I wanted someone to say, "Oh! Here is what is wrong, here is a prescription, you will be better in two weeks." I haven't had the horrible diarrhea that I have heard so many have and then get the weight loss and all the problems associated with that. I actually tend to go the other way with days of constipation and then the diarrhea. If what I have going on is definitely Crohn's, I hope that is something that I don’t have happen, but I do fear it.
I would love to hear similar stories and find out about how long it took for some to finally get that final diagnosis so that you could get “treated”. Anyone out there had the cheek swelling thing? Anyone have more trouble with constipation rather than diarrhea?
Just kind of scared, frustrated, and really pissed off at this thing in my body that won’t go away. No matter what it is, I don’t like it at all. I am trying to be positive, but I feel really mad and not positive at all! :ybatty: <<<This describes my feelings quite well!
I am 38 years old. For probably the last 10 years I have had troubles off and on with being constipated for several days and then horrible diarrhea for a day or two. Sometimes I would be fine and go for weeks with no problems and then it would rear its ugly head again. Doctors kind of told me the same thing. Reduce stress, need to drink more water, eat more fiber, exercise more, maybe you might have a slight case of IBS so we can think about Zelnorm if you want to try....blah blah, blah. About 2 1/2 years ago, I started to bleed when I would poop. Thought I just had internal hemorrhoids which I have had before, but since I have family history of colon cancer, I got a little scared. Called a gastroenterologist and they scheduled a colonoscopy. I was a little out of it when I came to and all I heard was "No cancer, found ulcers, did biopsy, small internal hemorrhoids and will call in one week if anything". (This is kind of important for what came to be a few weeks ago). SO, I thought nothing more except that I was very relieved about the no cancer and have frustratingly "lived with it".
Back in February I got really sick with a fever and developed all of these ulcers in my mouth and back of my throat. Without the very, VERY long story behind all of that, for the past four months I have been on several courses of antibiotics, had my cheek swell repeatedly (PLEASE tell me someone else had/has that happen) and have been on tons of steroids for the swelling. I saw two doctors, got pushed off to two ENT's, a dentist, an oral surgeon and finally an oral pathologist. He did a biopsy on one of the swollen places in my cheek as well as one of the ulcers that never would completely heal. He calls me the next day and asks me if I have ever had problems with my stomach. I begin to tell him what has gone on with me for the last several years (Didn’t ever mention my tummy problems, because I never, ever thought that my cheek swelling and ulcers in my mouth had anything at all to do with my other end!). He proceeded to tell me that my ulcer had granulomas - YIKES - and that was something that usually was present in someone with Crohn's disease. And that a lot of times those ulcers are something that will happen. Well, I made an appointment with a gastroenterologist that some friends recommended (one of them has diverticulitis and has seen him for years). I got a copy of my old colonoscopy report and it said that I was supposed to call them in one week for lab reports. WOW! I about fell over. There were ulcers around my ileum, lymphoid aggregates, ileatic swelling and some granulomas...and a few other weird fun things. It said outside possibility of Crohn's and that I should repeat a colonoscopy in a year. I am mad they never called, but it was my responsibility to follow up on my health as well. And it is nothing I can do anything about now in the present day.
So, yesterday was my first visit with the gastroenterologist I will be seeing. He is very nice and won't definitively come out and say it is Crohn's, but insinuates it highly. He said that we will go through a ruling-out process to make sure that it isn’t something else like Ulcerative Colitis before he is even willing to discuss treatment plans. They took a whole lot of blood yesterday; I have a small bowel series set up for Friday and then another colonoscopy in early August, which seems so far away. I am tired. I run a low-grade fever off and on and feel slightly ucky all the time. Am sick of whining and feel pretty alone in this whole deal. My husband understands, but I think he is frustrated as well with my face swelling, recurrent ulcer deal and in general just being grumpy.
While I am grateful to that pathologist that finally gave me a possible answer, it is sure not what I really wanted to hear. I wanted someone to say, "Oh! Here is what is wrong, here is a prescription, you will be better in two weeks." I haven't had the horrible diarrhea that I have heard so many have and then get the weight loss and all the problems associated with that. I actually tend to go the other way with days of constipation and then the diarrhea. If what I have going on is definitely Crohn's, I hope that is something that I don’t have happen, but I do fear it.
I would love to hear similar stories and find out about how long it took for some to finally get that final diagnosis so that you could get “treated”. Anyone out there had the cheek swelling thing? Anyone have more trouble with constipation rather than diarrhea?
Just kind of scared, frustrated, and really pissed off at this thing in my body that won’t go away. No matter what it is, I don’t like it at all. I am trying to be positive, but I feel really mad and not positive at all! :ybatty: <<<This describes my feelings quite well!
).
