Second Scope Test Tomorrow

[MissLeopard83]

I've been posting in the "Undiagnosed" forum but it's dead there so I thought I'd make a separate thread. I saw a new gastroenterologist earlier this month after reporting to my PCP that I've been dealing with worsening abdominal pain, diarrhea, and nausea. I thought my IBS was flaring up but she didn't want to just give me medication, she wanted a specialist input.

The first GI doctor I saw in December was an a$$hole, for real. She works with the same doctor I saw back in 2016 (he must have moved because he used to be closer to my house) and she treated me like crap. Didn't want to listen to anything I had to say and just said, "You've had all the tests so I'm not sure why you're here." I told her that my primary sent me because I have IBS and she wanted me to have a specialist help me manage it. All she did was offer a script for some brand new medication that was not covered by insurance (didn't listen when I told her that I have an HMO) and decided I needed 2 breath tests even though I had all the testing done 2.5 years ago (the tests she ordered were ones I never had). I felt like crap that day already because I woke up with really bad nausea and pushed myself to go to that appointment. I felt like it was a wasted trip and I am so tired of doctors treating me like I don't need to be there.

Later that day, I saw another doctor and the culmination of that day's events led me to be hospitalized because of suicidal ideations. I was really sick of being treated like trash and left in pain but I decided that that was not an option and sought help thru my psychiatrist. I was hospitalized for 3 days and I am MUCH better!

Earlier this month, I saw a new GI doctor that my PCP said was much better and easier to deal with and he sat down with me and listened to everything I had to say. He decided he didn't want to just go with the IBS diagnosis - he wanted to start from scratch because I received the IBS diagnosis at the wrong time and it turned out to be an ovarian cyst in 2016. I don't doubt I have it but something has definitely changed and he was concerned due to my family history of ulcerative colitis. He scheduled me for scopes (upper GI and colonoscopy) tomorrow and I had blood work done Friday for IBD. He said it could be UC or Crohns or another form of colitis. Or it could be my Celiac disease is uncontrolled because I'm being "glutened" from an unknown source so he'll look for damage from that, too.

All in all, I'm glad he's really being thorough but today has been torture!

TMI


I've been in and out of the bathroom all day and my butt is screaming because I've wiped too much! I've used cream but it's still very sore. I'll be glad when it's over!:sign0085:

 

[Trysha]

It’s too bad you have suffered through ignorant doctors...but it now looks like you have a doctor who knows his stuff.
Hopefully you will soon be properly diagnosed and given some treatment to help you feel better.
Good luck with the scopes and feel better soon
Hugs
Trysha

 

[MissLeopard83]

It’s too bad you have suffered through ignorant doctors...but it now looks like you have a doctor who knows his stuff.
Hopefully you will soon be properly diagnosed and given some treatment to help you feel better.
Good luck with the scopes and feel better soon
Hugs
Trysha

Hi Trysha,

Thank you! This morning went really well. I got the preliminary results and the doctor said that I have mild erythematous tissue in my gastric antrum AGAIN (I had it back in 2016 and it hasn't gone away) and a small hiatal hernia. He took biopsies of my jejunum for celiac disease and then proceeded to the colonoscopy. I have some small-mouthed diverticula in the recto-sigmoid colon and sigmoid colon as well as internal hemorrhoids (have had them before, too). The rest of the colon appeared normal on exam. He did state at my appointment that he would do a capsule scope, too, to visualize my small bowel since Crohn's can hide in there.

Anyway, I am supposed to see him in 2-4 weeks for the results of my blood work and biopsies. In the meantime, I have to follow an anti-reflux diet to reduce the inflammation in my stomach which means eliminating acidic foods like chocolate, coffee, cola, citrus, etc. I already sleep with my head elevated, so that is good, but I have to eliminate fatty and fried foods, too.

 

[Trysha]

Hi MissLeopard
Thanks for the all the news..and it’s so good to hear your morning went so well.
It sounds as though you have a first class endoscopist who has been very thorough in
the examination of your systems...hang on to that one if you can.
Diverticular disease can be a good mimic of Crohn’s and hard to tell the difference at times.
This was my final diagnosis....diverticulitis extensive plus small areas of Crohn’s.
The first GI misdiagnosed as Crohn’s .. I requested.the second GI andto whom I owe my life found the small area of Crohn’s,extensive diverticular disease plus a huge 4.6 tumour in the right colon...pre malignant..the surgeons removed the right colon and the following year the left sigmoid colon,I was so relieved to wake each time and find NO bags attached....very fortunate and fantastic GI surgeon....and my forever Gastroenterologist.
Seems you have found a good GI...hang on to him/her..
Feel better soon
Trysha

 

[Mountaineer01]

If the capsule endoscopy and colonoscopy do not show much, ask the doctor to order an MR Enterography. That's how I was finally diagnosed after over a decade and a half of pain and suffering.



With most people, Crohn's seems to start in the linings of the small or large intestine, but there's a handful of us who have it that started in the walls. From the outside moving inward, so to speak. A lot of doctors either forget this or don't see it often enough to consider it a possibility.

 

[MissLeopard83]

I saw some partial results of my lab work and I tested positive for the Anti–Saccharomyces cerevisiae antibody (IgG) and my Immunoglobulin A is low. The results from Quest state that ASCA-IgG usually point to Crohn's disease but could also be found in Behcet's disease, Celiac disease, and colitis (ulcerative or microscopic). My genetic test for Celiac disease came back negative so I do not have Celiac disease. I still have bad reactions to gluten so I likely have non-Celiac gluten sensitivity. That's good to know. I'm really baffled by the ASCA positive test as this is the first time that anything antibody related has come back positive since I have had a positive ANA result. I wonder if that's why my ANA was positive?

The results are partial so I don't have the full report yet. I got a follow-up appointment for the lab results and the scope tests on March 21st. I guess that's when I'll find out about the capsule endoscopy and any other further tests. I am so thankful this doctor decided to run further tests. The other GI was just going to let me suffer in silence. Not saying I want anything to be wrong, but, if something is wrong, I'd rather know so I can do something about it. I'm interested to see what the rest of the results show.

 

[teeny5]

So great to hear you found a GI that is listening to you and taking action! I agree, don’t want anything to be wrong, but would want to know so that it can be treated.

 

[MissLeopard83]

I'm wondering if the reason why the ASCA-IgA results came back negative is because my IgA levels are low. The transglutaminase IgA test said that results would come back negative if IgA levels are low, so it makes sense that the ASCA-IgA would be the same. Usually, both the ASCA IgG and IgA antibodies come back positive for Crohn's and only a very small minority have just the IgG antibodies. I'll have to ask the GI doctor if this is the reason why they came back negative when I see him next month.

 

[MissLeopard83]

The last few days, I've been feeling like crud. I have no energy and no appetite. When I do eat, I pay for it afterward in the form of abdominal pain and cramping, no matter what I eat. It's very frustrating. I keep counting the hours until the time I get to see my GI again. I'm checking the patient portal for the procedure results because, if they are posted within the next week or so, I'm going to call to see if they can bring me in sooner.