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Searching for a diagnosis

  • By dulce2016

    Hi everyone! I’ve been reading through these forums and have learned a lot! I’d like to share my story and maybe get some advice on what questions to ask or things to bring up at a doctor’s appointment. Sorry, this is really long.

    I’m a 28 year old female and ever since I was in high school (more so my junior and senior years) I’ve had issues with abdominal pain and persistant diarrhea. I’d have to get up and run to the bathroom several times during class or stay home all together if it was particularly bad. My mom, who never believes anyone is ever sick, became concerned and we researched some things to try to improve my situation while we waited for an appointment with the GI specialist. I tried a gluten free diet at the suggestion of a friend who has celiac, and it really seemed to help. The GI specialist I saw was seemingly annoyed by my just being there but agreed to do a endoscopy. He very rudely told me my results were completely normal and gave me antacids and said “it’s probably heartburn, maybe IBS.”

    I decided to stick with the gluten free diet and have been gluten free for almost 10 years. Over the years I have still had issues with diarrhea and abdominal pain, enough to negatively impact my life. I’ve had to miss work and school, cancel on plans with friends, etc. I used to travel internationally (13+ hour flight) twice a year and I would eat nothing while I traveled so I would run the risk of dealing with diarrhea in the airport or on the plane. Obviously none of this is normal but I was so traumatized by how that first GI doctor treated me that I didn’t want to go back.

    About 5 years ago I ended up having issues with pain in my chest and joints. The chest pain was determined to probably be inflammation in the cartilage between my ribs (costochondritis) and the rhuematologist I saw wanted to do blood tests for celiac when I told him about the diarrhea, which came back negative. He made me an appointment with a GI doctor for a colonoscopy but I cancelled it because I was scared.

    In 2016 I got pregnant and around 5 months into the pregnancy started having a constant tenderness in my right upper quadrant. My OB thought it was my gallbladder so I had an ultrasound done which showed no stones so the OB said it was probably just normal pregnancy pains. The pain was still there when my daughter turned one so I went to my PCP. She tested me for H. Pylori (negative) and gave me a PPI to take for 6 weeks, which did nothing. I demanded a referral so I was sent to another GI office. I saw a nurse practitioner first who told me it was possible to still have gallbladder issues without stones so she sent me for a HIDA scan which was just barely outside of normal range. I saw the GI doctor at my follow up appointment and he was not convinced it was my gallbladder. He said he wanted to do and endoscopy and colonoscopy and, if those were normal, he’d send me to a surgeon to remove my gallbladder.

    So I did the endoscopy and colonoscopy the same day. The doctor said the endoscopy showed some inflammation in my esophagus but didn’t seem worried about it. He also said he found a few polyps in my colon but he didn’t think they were anything to worry about. Pathology didn’t show anything concerning about them. So I was sent to the surgeon and had my gallbladder out. This was well over 8 months ago.

    I felt really good after my surgery, no more pain, no more diarrhea. I was worried because I heard that diarrhea problems were common after gallbladder surgery. I thought this maybe had solved my problems.

    However, in the past month or two, things have gotten so much worse. The diarrhea is so unpredictable and if I have anything I need to do during the day I basically can’t eat anything at all. Even that isn’t enough sometimes. I had a meeting to go to at school recently so I avoided eating anything before hand and I still got sick. It came on so suddenly while I was driving I couldn’t even pull over anywhere. It was the most embarrassing thing that has ever happened to me.

    The stomach pains have been awful too. It gets so bad some times that I can’t even stand up straight and I come very close to telling my husband to take me to the ER. It often feels like I’m going to have a bad diarrhea episode but then when I go to the bathroom I struggle to pass anything and if I do it’s hard, dry stool.

    I’m currently in nursing school and dealing with this plus school is so stressful. On the days I have clinical I don’t eat until I get home. I’ve lost 30 lbs since August. I’m worried because next semester I’ll be in the hospital for clinicals a lot more and for 12 hour shifts so I don’t know what I’m going to do.

    I’ve made an appointment with a new primary care doctor so that I can get a referral to a GI specialist. It really sounds like Crohn’s or something else that I’m dealing with, which terrifies me. Any input or suggestions for me? I’d appreciate anything anyone can share.

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  • By thedancingcrohnie Moderator

    HI @dulce2016,

    I am so sorry you are going through all this. There is clearly something going on with your digestive system. I would absolutely go and see another GI to get another opinion.

    Now, of course I am not a medical professional, I am just speaking from personal experience with having Crohn’s since 2011. Since you had an endoscopy and colonoscopy done and neither showed significant inflammation. I would definitely ask the next GI doctor that you see, to please do a capsule endoscopy. This will show what is going on in your small intestine. It could be that your inflammation is occurring there!

    The endoscopy does not show your small intestine and the colonoscopy only shows your large intestine. So, to rule things out, I think its imperative for you to see what is going on in your small intestine. If it were me, I would really press for that test to be done. It’s super easy. You just swallow a pill that has a camera inside of it. When I did it, I was in a horrible flare with my Crohn’s and I had zero pain, it was so easy. So don’t be scared.

    Also, I am curious if they did blood work on you. For example did they check your C-Reactive Protein? Also, how about your Red Blood Cell, White Blood Cell count, iron level and vitamin D level?

    Keep us posted. Hope this helped. And feel free to message me whenever.

    Always dancing,
    Elizabeth (team member)

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    • By dulce2016

      Thank you for your reply Elizabeth! I am definitely interested in trying the capsule endoscopy. I have always wondered if there was something the tests I’ve had are missing so it seems like that would be a good route to try.

      As far as blood work goes, I had my Vitamin D level checked once and it was extremely low (don’t remember the exact value, but the doctor was a bit shocked). I don’t think I’ve had any of the other blood tests run though. I’m guessing it would probably be a good thing to ask for these tests?

      I have an appointment with the new PCP this Thursday. I’m hoping it doesn’t take too long to get in with a new GI. Maybe I’ll ask the PCP about ordering some blood tests while I’m waiting for a GI appointment.

      Thanks again! I’ll post with updates for sure!

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    • By thedancingcrohnie Moderator

      Yes, definitely ask your PCP to run those blood tests for you so you can get the ball rolling, at least I would! If your vitamin D still shows low, take a liquid supplement to boost it up.

      Keep us posted and good luck!

      Always dancing,
      Elizabeth (team member)

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  • By dulce2016

    Well, I went to see my new PCP yesterday and it was really disappointing and frustrating. He didn’t let me talk at all. In fact, as soon as him and his med student walked in the room he was telling me I had IBS with constipation (???) and was rattling off meds for the student to put into the computer. I could only get in a word or two before he’d interrupt me. I started crying (from anger and frustration mostly) and told him this is seriously impacting my life and I had concerns I wanted address so he told his med student to prescribe me an antidepressant and antianxiety med. I finally yelled at him that I lost 30 lbs in the past 3-4 months and then he changed his tune. He said maybe inflammatory bowel was the issue instead of IBS (I never got the chance to mention it at all, he arrived there on his own). So he starts saying things like, “oh but IBD patients usually have bad night sweat.” Yeah, like me. “Oh, and mucous in the stool is a problem with that too.” Yup.

    So, he agreed I needed to see a GI doctor and wrote me a referral. He ran some blood tests (almost none of the ones I asked for). Hemoglobin and hematocrit were normal. WBC count normal. ESR normal. All of that is a little disheartening.

    Not sure when I’ll be going to the GI yet.

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  • By dulce2016

    Just an update.

    It’s been a while, but I’m finally getting something done in regards to figuring out what’s wrong with me.

    I saw the GI doctor in January. He was really unhelpful and told me my symptoms were due to my gallbladder removal. I told him I’ve been dealing with these issues for around 10 years and he snapped back “yeah but it’s worse now, isn’t it?” Well yeah, it has always had times when it’s exceptionally bad, I’m assuming flares. So he prescribed me a cholesterol medication that binds to bile and theoretically will keep diarrhea from happening if that is indeed the cause. I tried it because my symptoms have been exceptionally bad lately and the only thing it did was cause painful constipation after one pill. The doctor told me to lower the dose if that happens but I was taking the lowest dose possible.

    The doctor also said he wanted me to have a CT done and a chest x-ray. His theory with the chest x-ray was that I might have lost all this weight due to lung cancer…even though I don’t have any symptoms of lung cancer whatsoever. It was at this point I knew I needed a new doctor. I went home and looked at my info on the office’s patient portal and he had listed all kind of symptoms I don’t have and never said I have.

    My insurance kept denying pre-approval for the CT scan and I was frustrated with nothing happening. Everything has been so bad lately as far as my symptoms. I’ve had to leave clinical early this semester because of my symptoms and it was incredibly embarrassing and is affecting my grades. Luckily, being in nursing school, my instructors are all nurses and are all understanding and really helpful. One has helped me trying to figure out what to eat on those long 12 hour clinical days and even helped me find a new GI doctor.

    Finally got approval for the CT and decided to do it even though I’ll be seeing a new doctor soon. I’ll be having it tomorrow. I’m really nervous that it will show nothing wrong. I just want to know what’s wrong so I can know what to do to fix it.

    I go see my new GI doctor on March 15. He has excellent reviews and is considered an “expert” in Crohn’s and UC. My husband works with a woman who has UC and sees this doctor. So I’m hopeful it will be a good step forward.

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    • By gpalmarella Keymaster

      @dulce2016 Thanks for sharing this update! Keep us posted on the scan and the visit with the new doctor. I really hope you find some answers soon between these two things. This really sounds like a step in the right direction. I’m crossing my fingers for you! -Graceann (IBD.net Team Member)

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