New diag but not too being sick

Hi,

Ive been I'll for the past five years. I actually have been sick for longer but that is when my severe abdominal pain started and the worst part of this journey began. Initially they thought i had sphincter of oddi and I went to univ of mi and also to a medical center in Minnesota. I was suffering with upper right quad abdominal pain, nausea, intermittent diarrhea and severe constipation. The pain never stops and basically has taken my happiness away.

Recently, my doc sent me to a rheumatologist as I tested hla-b27 positive (for the 4th time) along with arthritis, psoriasis, anemia. In the rheum. EvaluAtion and blood tests, he feels I have crohns. I am honestly in shock over this and honestly angry that its taken so long to get to this place.

I see a gastroenterologist in 3 weeks. Another doctor ~sigh~...

The rheumatologist is putting me on sulfasalizine as soon as my allergy sulfa test comes back. I'm hesitant to do anything at this point after being misled so many times.

So, if you've stuck it out this far, I have questions

Does crohns really cause this much constant disabling abdominal pain?

What about constipation? I'm on pain meds, which has slowed down the diarrhea, dis that happen with crohns?

Does anyone have eye problems? I've had blurred vision for quite a while off and on.

How do you LIVE like this and what reay helps.

In advance, I thank you for your patience.

Cassy

Hi Cassy and welcome to the community. I'm so sorry to hear of the struggles you've been through. I know the idea of another doctor is frustrating, but hopefully a GI will finally be able to get you a diagnosis. With everything you describe including the HLA-B27 being positive, there's certainly a decent chance it's Crohn's. To answer some of your questions:

1. Yes, untreated, improperly managed, or complications from Crohn's disease can lead to severe abdominal pain.

2. People with Crohn's can indeed have constipation. Some alternate back and forth between diarrhea and constipation. Everyone presents a little different.

3. The eye problems you're experiencing, especially with a positive HLA-B27 is probably Uveitis. You need to get to an opthamologist (I know, another doctor, but this is important). Let me reiterate that it needs to be an opthamologist, not an optometrist and you need to let them know Crohn's disease is suspected and you are HLA-B27 positive.

4. You don't live like this. You get diagnosed and on a proper treatment plan. Nobody should have to live like this. You deserve to feel well again.

We're here for you.

Welcome to the forum Cassy. I'm sorry you are having to go through a lot right now with your crohns and I hope after your new GI appointment in a few weeks you will get some answers. David has pretty much covered your questions but I had a question about your constipation question.

Are you currently constipated, or does it just seem like it's going in that direction? Did you usually have diarrhea before you started your current medicine? and what medicine are you taking that you suspect is causing this?

What past crohns meds have you been on as well? I wonder if it might be best for you to discuss biologics with your doctor so you can really try and get your condition under control so the abdominal pain will hopefully stop.

Hang in there, and I hope you find some answers soon.

Hey Cassy,

Sorry you are dealing with all this. I also am Undiagnosed as of yet. I have seem so many doctors( a few rheumatologists as well) and have been Misdiagnosed sooo many times it is really very scary. The fact that your rheumy doc is sending you to a gastro doc is good though. I mean at least he is getting you looked at. I am not sure about the HLA-B27 test, what is this test?? Is it the prometheus test?

I really hope you get a good gastro doc who will work with you in finding an answer to your issues. I also do Not have the typical crohns symtpoms. I never hardly ever have diarrhea. I usually have softer stools sometimes mixed with hard. My biggest issues is Severe pain all the time. Unfortunately, most GI docs will not believe you have crohns if you are not having diarrhea all the time( at least that is my experience). My gastro keeps saying IBS. Hopefully you can get some tests and at least find out if you have crohns or not. In the mean time, you are in my thoughts and prayers.. I know what your going through, it is so hard to live in agonizing pain every day and not know what is wrong....

Hi and thanks for the welcome. In answer to kwalkers questions. I have not ever been on anything for crohns. I was just diagnosed a week ago. I have been on many pain meds, and currently I am on a 3 day regimen of something very strong for pain. On top of that I take ultram for breakthrough episodes. 5 years ago, I had chronic diarrhea and that continued until the past few years since I have been on the pain meds. Since then, it's a fluctuation from diarrhea to constipation.

I will read up on bioligics(I have no idea what that is) before my appt.

Thanks again.

Cassy

I hurt,

Hlab27 is a genetic test. It is not a definately marker for crohns, but it can be an indicator. The rheum. Also did some other tests that came back for high inflammation in the digestive tract? Im new with all this, so hole that makes sense.

C

Glad you found us Cassy. I hope you can find some great support and information that will help you.

My daughter has a lot of pain when she is having inflammation too. It is hard to get all the meds balanced, but hopefully soon

Welcome Cassy. Have you been evaluated by a GI previously ... given 5 years with abdominal pain? I am really curious how your GI appointment and testing goes. My sons rheumi thinks he has Crohn's but the GI's we've seen are not certain. Good luck and I hope you get some effective treatment.

I have seen a number of gastroenterologist over the last 5 years, but not focusing on crohns. They thought I had sphincter if oddi dysfunction. There was inflammation in the biliary tract and they opened the sod. It never helped. Imagine that? My current primary dic thought that the inflammation was caused by something else, like crohns I suppose. I'm confused as the rheumy wanted to start me on sulfasalizine, and when I called his office today, he said he wanted to wait till my next appt on the 6th. March. I see the gastro mid march. I am so sick of the pain and not knowing what is causing this.

Unfortunatlely, you can't treat what nobody can define. So far it's All about masking the pain with meds which I hate taking.

I would be interested also in what you find out for your son.

C