Negative test results...can a capsule endoscopy still show Crohn’s?Advice appreciated
Hi Everyone!
I am in the undiagnosed club and have been for 2 years now. Being this sick for 2 years is so tiring, so I’m hoping some of you have some insight for me. I’m 23 years old and have been having pretty bad symptoms for a little over 2 years now. I have always had a weak stomach as a kid but it tapered off as I got older.
In April 2016, I got really sick with what was thought to be a stomach virus. I was throwing up bile, was going to the bathroom all day, and had bad urgency issues. While it was horrible, it only lasted 2 days. Fast forward to June 2016, I started getting diarrhea...at first I was going about 4-5 times a day. But after a while, it got worse and I was going 8-10 times a day. It wasn’t always watery but it was usually very soft. It was so hard for me to go to school and work going to the bathroom this much, so that’s when I started taking Imodium. The Imodium wasn’t really helping and I didn’t know what else to do.
Then I started getting stomach cramps almost every time I ate. I would eat something, the cramps would come, and I would immediately have to go to the bathroom. Before I knew it, I had lost 15 pounds in only a couple of months. I was getting worried because every food I thought was safe, began giving me a problem...even just white rice. I was losing my appetite and slowly began getting scared to eat. I am still to this day scared to eat out with friends because I have to go to the bathroom almost every time...unless I don’t eat. I also began feeling tired all the time and completely drained. I had a few episodes where I would get super dizzy, weak, faint, pale and tired. I would have horrible stomach cramps and would have to lay down until it passed. It would only last for a few hours...the most it ever lasted was a day...but it has happened multiple times. On a few occasions, I also threw up after eating. It didn’t happen often, but enough that it was noticeable. So I decided to make an appointment with my GP who immediately referred me to a gastroenterologist.
At my first appointment I went over my symptoms and my doctor immediately scheduled a colonoscopy because he thought I had Crohn’s disease or Ulcerative Colitis, and a blood test for celiac’s disease. At this point my weight loss was getting worse and I had lost a total of 30 pounds. My colonoscopy plus biopsies and blood test came back completely normal, so my GI said I had IBS, gave me a prescription for Imodium and sent me on my way. I went back because it wasn’t helping, so he switched me to Viberzi. After that medicine failed, I was losing hope. I also tried Bentyl, and hyosciamine, which did not work out for me. They made the cramps worse, and made me feel dizzy, and out of it. I also had blurry vision to the point where I couldn’t read a book because everything blurred together. This GI told me that I had IBS and I pretty much just had to deal with it. I was getting frustrated and still felt so sick, so I decided to get a second opinion.
My friend who has severe crohn’s disease (she has been in remission for 10 years!) recommended I go to her GI. Her Crohn’s was very severe but she said I have a lot of the same symptoms she did before she was diagnosed. My first appointment with her was great. She scheduled a lactose and fructose intolerance test which both came back positive...I was finally feeling hopeful. I went on the low fodmap diet thinking my symptoms would disappear...but that was far from the truth.
The diarrhea and stomach pain was still horrible and now I was getting a constant feeling of having to go to the bathroom. No matter how many times I went, I never felt like I was finished going. And everytime I went, I had horrible cramps, like I was pooping out glass (sorry! TMI) I was also pooping out a lot of mucus and some blood, even without a bowel movement. I know I do have hemorrhoids, so the blood might be from that, but the mucus is still a mystery to me. Sometimes I would think I had to go to the bathroom, but when I was done, it was just mucus. There is also always undigested food in my BM’s. I started getting really depressed because I wasn’t feeling any better but I wasn’t getting any answers.
My GI then prescribed me Colestipol and scheduled more blood tests and some stool samples...Calprotectin, a few for parasites, and some to rule out an infection. Those tests all came back negative,(not sure what the exact number were) and the Colestipol wasn’t working as good as I hoped it would. Then she prescribed me Lomotil, which I read good reviews about, so I was hopeful. (I am still taking Lomotil by the way) While it does help a little, I still don’t feel great and the side effects are pretty bad. It makes me feel so nauseous, almost to the point where I feel like I have to throw up. It also makes me super tired...like I can sleep for 11 hours straight and still be tired the next day, which definitely isn’t good since I’m starting nursing school in a few days.
I begged for more tests, because I was feeling so sick and I needed answers. So she scheduled a sigmoidoscopy...and what do you know...that test and biopsies for that also came back completely normal. I was at a loss. Still feeling completely horrible, tired, weak, and in need of answers.
As a last ditch effort my GI said we could try the pill cam...and that’s where I’m at now. I just scheduled that for October, pending insurance approval. So as of right now I’m still diagnosed with IBS, but I think it’s more than that. Not a single day goes by that I don’t have cramps, or nausea, or pain, or fatigue. I feel sick everyday, and that seems unusual for IBS. My 30 pound weight loss is also a big reason for thinking it’s something other than IBS. My GI said she is looking for Crohn’s and Celiac with the pill cam.
For a while, she was a little weary about a Crohn’s diagnosis, since my Calprotectin was low, but I heard that is not always a reliable test. She’s back on thinking it might be Crohn’s, since I still have symptoms, so I guess we’ll see after I get approval. I’m just really looking for something to validate how bad I feel all the time! So that’s my story, sorry it’s so long! I’m just looking for some answers. Any advice on what you guys think it is, or what else I can do, would be super helpful! I am starting nursing school on Monday and I am super nervous about it because of how horrible I’ve been feeling. Any insight is appreciated! Thanks for listening!
Becky
Hi Everyone!
I am in the undiagnosed club and have been for 2 years now. Being this sick for 2 years is so tiring, so I’m hoping some of you have some insight for me. I’m 23 years old and have been having pretty bad symptoms for a little over 2 years now. I have always had a weak stomach as a kid but it tapered off as I got older.
In April 2016, I got really sick with what was thought to be a stomach virus. I was throwing up bile, was going to the bathroom all day, and had bad urgency issues. While it was horrible, it only lasted 2 days. Fast forward to June 2016, I started getting diarrhea...at first I was going about 4-5 times a day. But after a while, it got worse and I was going 8-10 times a day. It wasn’t always watery but it was usually very soft. It was so hard for me to go to school and work going to the bathroom this much, so that’s when I started taking Imodium. The Imodium wasn’t really helping and I didn’t know what else to do.
Then I started getting stomach cramps almost every time I ate. I would eat something, the cramps would come, and I would immediately have to go to the bathroom. Before I knew it, I had lost 15 pounds in only a couple of months. I was getting worried because every food I thought was safe, began giving me a problem...even just white rice. I was losing my appetite and slowly began getting scared to eat. I am still to this day scared to eat out with friends because I have to go to the bathroom almost every time...unless I don’t eat. I also began feeling tired all the time and completely drained. I had a few episodes where I would get super dizzy, weak, faint, pale and tired. I would have horrible stomach cramps and would have to lay down until it passed. It would only last for a few hours...the most it ever lasted was a day...but it has happened multiple times. On a few occasions, I also threw up after eating. It didn’t happen often, but enough that it was noticeable. So I decided to make an appointment with my GP who immediately referred me to a gastroenterologist.
At my first appointment I went over my symptoms and my doctor immediately scheduled a colonoscopy because he thought I had Crohn’s disease or Ulcerative Colitis, and a blood test for celiac’s disease. At this point my weight loss was getting worse and I had lost a total of 30 pounds. My colonoscopy plus biopsies and blood test came back completely normal, so my GI said I had IBS, gave me a prescription for Imodium and sent me on my way. I went back because it wasn’t helping, so he switched me to Viberzi. After that medicine failed, I was losing hope. I also tried Bentyl, and hyosciamine, which did not work out for me. They made the cramps worse, and made me feel dizzy, and out of it. I also had blurry vision to the point where I couldn’t read a book because everything blurred together. This GI told me that I had IBS and I pretty much just had to deal with it. I was getting frustrated and still felt so sick, so I decided to get a second opinion.
My friend who has severe crohn’s disease (she has been in remission for 10 years!) recommended I go to her GI. Her Crohn’s was very severe but she said I have a lot of the same symptoms she did before she was diagnosed. My first appointment with her was great. She scheduled a lactose and fructose intolerance test which both came back positive...I was finally feeling hopeful. I went on the low fodmap diet thinking my symptoms would disappear...but that was far from the truth.
The diarrhea and stomach pain was still horrible and now I was getting a constant feeling of having to go to the bathroom. No matter how many times I went, I never felt like I was finished going. And everytime I went, I had horrible cramps, like I was pooping out glass (sorry! TMI) I was also pooping out a lot of mucus and some blood, even without a bowel movement. I know I do have hemorrhoids, so the blood might be from that, but the mucus is still a mystery to me. Sometimes I would think I had to go to the bathroom, but when I was done, it was just mucus. There is also always undigested food in my BM’s. I started getting really depressed because I wasn’t feeling any better but I wasn’t getting any answers.
My GI then prescribed me Colestipol and scheduled more blood tests and some stool samples...Calprotectin, a few for parasites, and some to rule out an infection. Those tests all came back negative,(not sure what the exact number were) and the Colestipol wasn’t working as good as I hoped it would. Then she prescribed me Lomotil, which I read good reviews about, so I was hopeful. (I am still taking Lomotil by the way) While it does help a little, I still don’t feel great and the side effects are pretty bad. It makes me feel so nauseous, almost to the point where I feel like I have to throw up. It also makes me super tired...like I can sleep for 11 hours straight and still be tired the next day, which definitely isn’t good since I’m starting nursing school in a few days.
I begged for more tests, because I was feeling so sick and I needed answers. So she scheduled a sigmoidoscopy...and what do you know...that test and biopsies for that also came back completely normal. I was at a loss. Still feeling completely horrible, tired, weak, and in need of answers.
As a last ditch effort my GI said we could try the pill cam...and that’s where I’m at now. I just scheduled that for October, pending insurance approval. So as of right now I’m still diagnosed with IBS, but I think it’s more than that. Not a single day goes by that I don’t have cramps, or nausea, or pain, or fatigue. I feel sick everyday, and that seems unusual for IBS. My 30 pound weight loss is also a big reason for thinking it’s something other than IBS. My GI said she is looking for Crohn’s and Celiac with the pill cam.
For a while, she was a little weary about a Crohn’s diagnosis, since my Calprotectin was low, but I heard that is not always a reliable test. She’s back on thinking it might be Crohn’s, since I still have symptoms, so I guess we’ll see after I get approval. I’m just really looking for something to validate how bad I feel all the time! So that’s my story, sorry it’s so long! I’m just looking for some answers. Any advice on what you guys think it is, or what else I can do, would be super helpful! I am starting nursing school on Monday and I am super nervous about it because of how horrible I’ve been feeling. Any insight is appreciated! Thanks for listening!
Becky
