Hello everyone. My name is Jen, I'm twenty-three. This is my first time posting to a support/Crohn's forum. I apologize if this is a slightly rambling post but there's a bit to explain here, and I'm exhausted and just recently out of the hospital, as well as on a low fiber diet (lack of meat is really wearing me out!)
I believe I've had Crohn's for years, as I've always struggled to keep my weight on, to eat without pain (half the time I never had an appetite), I struggle with fatigue, my teeth are in terrible condition despite my attempts to take great care of them (I've clearly not been absorbing my nutrients.)
I'd been to multiple doctors over the years. I've seen a ton in the last two years, as I dropped down to 97 pounds, I'm 5'7" so I knew something was seriously wrong. I've always only been able to achieve maybe 118lbs at the highest... Which that only lasted two months. I usually stay around 103-106lbs (until lately, I'll explain that in a bit.) I'd been to a few GI doctors and told them I suspected I had Crohn's, but I merely got brushed off, no colonoscopy, nothing. At one point one tried to say it was my kidneys, and ran me through a battery of tests for my kidneys.
In January of this year I decided enough was enough. I got tired of my fellow college students whispering about me in the halls (you can only listen to 'she looks like she has an eating disorder/worms/AIDS/etc. so much before you get sick of it). I decided to try drinking a GNC weight gainer with 2200 calories in it. It helped me to get up to 136lbs, which was a miracle and a half! I changed my diet completely, I used to eat very healthily, I didn't make myself eat that way, I was just naturally attracted to healthy foods! So I knew that in order to gain weight, I'd have to mix up healthy with fattening foods as well, especially to keep my weight on.
Everything went well until the last two or three months. The pain when I'd eat started to come back, but it wasn't severe. I'm a chronic pain sufferer, I have migraines 15 days out of each month, so I have a pretty high pain tolerance (tack on hip dysplasia, and endometriosis and the pain tolerance shots up higher.)
September brought severe fatigue, I couldn't stay up for more than two hours at a time, and I started to develop this strong burning/searing feeling in my stomach/abdomen. This came after I had a tugging feeling when I'd urinate (I'd assumed it was merely caused by an overly rough pap-smear I'd just endured a week or so previous). I lacked a fever, but I had some vomiting and diarrhea, alongside the burning/searing feeling, which I had assumed was simply a flu-bug. I'd spoken with my cousin, her fiance, and a best friend of mine and they'd all had a flu-bug that presented itself in the same manner, so I brushed it off.
Three weeks into this searing feeling in my gut, I started to think about the fact that if it were in fact a flu-bug causing this fatigue and burning, it should have passed already. To top it all off, by this time, I'd started my time of the month, so my cramps were overriding any other pain signals. I also had gotten to the point where I couldn't do anything other than urinate. I chalked this up to my endometriosis, as it gets really painful for me to do anything other than pee when I'm on my menstrual cycle.
Last Monday night though, the pain turned into stabbing, knife like pains. I assumed (because I'd been told there was nothing wrong with me by countless GIs and doctors, and to increase my fiber in my diet due to my claims of having repeated bouts of diarrhea) that I was merely constipated and that the pains were from being so backed up, and having not eaten much in the last few days. Then, I couldn't burp without feeling extreme nausea. I slept perhaps an hour that night due to the severity of the pain, but alas, the pain did not exceed what I usually endured with a migraine, so I allowed this to go on until Tuesday morning (I know, pretty stupid of me.)
Finally my mother talked me into going to see our family doctor, who then told me she thought it was a stomach ulcer, and to go and have a CT scan done just to make sure it hadn't perforated anything. After waiting three hours for the CT scan to be done, I was questioned repeatedly by the nurses regarding whether or not I was allowed to go home. This, frankly, freaked me out. No one would tell me what was going on. Eventually my doctor called the hospital, and told me to get to the ER immediately, that they had found a mass in my stomach and that I would need more tests done.
When we got to the ER, it was explained to me that they had found a softball size mass in my stomach, where the small intestine and the large intestine meet, and that they thought it may be Crohns, but I would have to stay overnight and have more tests run to figure out what exactly it was. By this time, I had no pain whatsoever. (Funny how that works, isn't it? It's like when you try to take a sick child to the doctors, once you get there, it's like zero symptoms are present!)
They admitted me that night (my first hospital admission ever) and explained that I'd be on a fluids diet until Wednesday, when I would prep for a colonoscopy. I did the prep, and Thursday was the procedure. They found out that the mass was inflammation, and that my small intestine's opening had swollen down to a pencil sized opening. I stayed on liquids for three days until my release Friday. They gave me Pentasa as my maintenance drug, no steroids (as of yet), and I'm on a low fiber diet. I have the occasional pang in my stomach, which I assume is to be expected when you can hardly eat/process any solid foods. Meat is strictly out of my diet currently.
I had to have a small bowel follow through today, which went over okay, I assume. We were told about two feet of my small intestine are affected by Crohns, and that they can't see any scarring, but they're not sure. I lack 'skip lesions', which is a plus.
To be honest, I'm kind of freaked out by this whole thing. I worry that I will have to be admitted again, that I may require surgery. I'm new to having any serious medical ailments going on, so it's a whole new experience for me. It explains a ton of things that have plagued me throughout my years, but it's scary too. I have two doctors appointments in the next two weeks regarding my tests and diagnosis. I hope they go well.
I'm appreciative to have this whole thing diagnosed, but I am nervous about what my future holds with the diagnosis. Anyways, that's my whole bit. Hopefully I haven't rambled too much, I had no idea where to even start... Plus the exhaustion makes stringing together thoughts and sentences pretty difficult.
So, hello to everyone. I'm grateful to have a forum for this. I think it will be a great help and a wonderful place to go for support, as I don't really know anyone else with Crohns. Sorry again for the long post.
ale:
I believe I've had Crohn's for years, as I've always struggled to keep my weight on, to eat without pain (half the time I never had an appetite), I struggle with fatigue, my teeth are in terrible condition despite my attempts to take great care of them (I've clearly not been absorbing my nutrients.)
I'd been to multiple doctors over the years. I've seen a ton in the last two years, as I dropped down to 97 pounds, I'm 5'7" so I knew something was seriously wrong. I've always only been able to achieve maybe 118lbs at the highest... Which that only lasted two months. I usually stay around 103-106lbs (until lately, I'll explain that in a bit.) I'd been to a few GI doctors and told them I suspected I had Crohn's, but I merely got brushed off, no colonoscopy, nothing. At one point one tried to say it was my kidneys, and ran me through a battery of tests for my kidneys.
In January of this year I decided enough was enough. I got tired of my fellow college students whispering about me in the halls (you can only listen to 'she looks like she has an eating disorder/worms/AIDS/etc. so much before you get sick of it). I decided to try drinking a GNC weight gainer with 2200 calories in it. It helped me to get up to 136lbs, which was a miracle and a half! I changed my diet completely, I used to eat very healthily, I didn't make myself eat that way, I was just naturally attracted to healthy foods! So I knew that in order to gain weight, I'd have to mix up healthy with fattening foods as well, especially to keep my weight on.
Everything went well until the last two or three months. The pain when I'd eat started to come back, but it wasn't severe. I'm a chronic pain sufferer, I have migraines 15 days out of each month, so I have a pretty high pain tolerance (tack on hip dysplasia, and endometriosis and the pain tolerance shots up higher.)
September brought severe fatigue, I couldn't stay up for more than two hours at a time, and I started to develop this strong burning/searing feeling in my stomach/abdomen. This came after I had a tugging feeling when I'd urinate (I'd assumed it was merely caused by an overly rough pap-smear I'd just endured a week or so previous). I lacked a fever, but I had some vomiting and diarrhea, alongside the burning/searing feeling, which I had assumed was simply a flu-bug. I'd spoken with my cousin, her fiance, and a best friend of mine and they'd all had a flu-bug that presented itself in the same manner, so I brushed it off.
Three weeks into this searing feeling in my gut, I started to think about the fact that if it were in fact a flu-bug causing this fatigue and burning, it should have passed already. To top it all off, by this time, I'd started my time of the month, so my cramps were overriding any other pain signals. I also had gotten to the point where I couldn't do anything other than urinate. I chalked this up to my endometriosis, as it gets really painful for me to do anything other than pee when I'm on my menstrual cycle.
Last Monday night though, the pain turned into stabbing, knife like pains. I assumed (because I'd been told there was nothing wrong with me by countless GIs and doctors, and to increase my fiber in my diet due to my claims of having repeated bouts of diarrhea) that I was merely constipated and that the pains were from being so backed up, and having not eaten much in the last few days. Then, I couldn't burp without feeling extreme nausea. I slept perhaps an hour that night due to the severity of the pain, but alas, the pain did not exceed what I usually endured with a migraine, so I allowed this to go on until Tuesday morning (I know, pretty stupid of me.)
Finally my mother talked me into going to see our family doctor, who then told me she thought it was a stomach ulcer, and to go and have a CT scan done just to make sure it hadn't perforated anything. After waiting three hours for the CT scan to be done, I was questioned repeatedly by the nurses regarding whether or not I was allowed to go home. This, frankly, freaked me out. No one would tell me what was going on. Eventually my doctor called the hospital, and told me to get to the ER immediately, that they had found a mass in my stomach and that I would need more tests done.
When we got to the ER, it was explained to me that they had found a softball size mass in my stomach, where the small intestine and the large intestine meet, and that they thought it may be Crohns, but I would have to stay overnight and have more tests run to figure out what exactly it was. By this time, I had no pain whatsoever. (Funny how that works, isn't it? It's like when you try to take a sick child to the doctors, once you get there, it's like zero symptoms are present!)
They admitted me that night (my first hospital admission ever) and explained that I'd be on a fluids diet until Wednesday, when I would prep for a colonoscopy. I did the prep, and Thursday was the procedure. They found out that the mass was inflammation, and that my small intestine's opening had swollen down to a pencil sized opening. I stayed on liquids for three days until my release Friday. They gave me Pentasa as my maintenance drug, no steroids (as of yet), and I'm on a low fiber diet. I have the occasional pang in my stomach, which I assume is to be expected when you can hardly eat/process any solid foods. Meat is strictly out of my diet currently.
I had to have a small bowel follow through today, which went over okay, I assume. We were told about two feet of my small intestine are affected by Crohns, and that they can't see any scarring, but they're not sure. I lack 'skip lesions', which is a plus.
To be honest, I'm kind of freaked out by this whole thing. I worry that I will have to be admitted again, that I may require surgery. I'm new to having any serious medical ailments going on, so it's a whole new experience for me. It explains a ton of things that have plagued me throughout my years, but it's scary too. I have two doctors appointments in the next two weeks regarding my tests and diagnosis. I hope they go well.
I'm appreciative to have this whole thing diagnosed, but I am nervous about what my future holds with the diagnosis. Anyways, that's my whole bit. Hopefully I haven't rambled too much, I had no idea where to even start... Plus the exhaustion makes stringing together thoughts and sentences pretty difficult.
So, hello to everyone. I'm grateful to have a forum for this. I think it will be a great help and a wonderful place to go for support, as I don't really know anyone else with Crohns. Sorry again for the long post.
ale:
