Thickening of intestinal wall

[northernca]

Hi,

I’m so thankful you all are here.

Have been ill for years.

Finally got diagnosed with BD this year.

Everyone sharing all of their challenges has been extremely helpful.

I’ve had almost every symptom that you speak about. A recent CT showed thickening of intestinal wall. So my rheumatologist talked to a Dr in NY who said it is not BD because of the thickening and heavy bruising . Anyone have any experience with this?

[Zuzu798]

Hi, I am glad they have finally diagnosed x, what I wanted to ask is which area did they find intestinal thickening? sorry for asking? I have it in my sigmoid colon. I had a CT scan & Specialist says Disproportionate fat stranding causing the pain in my bowel. It has to do with diverticulitis too that I suffer from, hope this helps somewhat too.

[northernca in reply to Zuzu798]

Hi,

Thank you for your reply,

Sigmoid as well. Today at GI appointment, i was told that nothing came up on CT or colonoscopy, and that it's just pain. Just?

My rheumatologist called last week, and said that after speaking to a colleague in NY for an hour, I don't have BD, because I am bruising so badly. So i have all the symptoms and have been "undiagnosed" by a Dr whose never seen me.

Any thought's?

Thanks

[Zuzu798 in reply to northernca]

😢How frustrating, I can't imagine what you must be feeling like. Just as you where close to an answer. so very frustrating for you I am so sorry. I must also mention that there is article the GP emailed to regarding Irritable bowel syndrome 😒 I was not impressed as you say the pain is so very real and I feel so frustrated. I am on a IBS approved diet for over a year to no avail. As far ad BD is concerned look at the main symptoms. One of the most common symptoms that I got diagnosed on was the fact that I had oral & genital ulcer's consecutively. Stay strong PS. there are many Auto immune diseases that are very close to BD that you even might be suffering from. It all depends on finding the right Specialist that deals with Auto Immune diseases.

[chlovak in reply to northernca]

Yeah, I wouldn’t take the word of a doctor who has never seen you, even if it were the famed Dr. Yazici (who has been known to make questionable calls as a clinician for other BD patients). Behcet’s is a clinical diagnosis, based on a combination of symptoms and ruling out other possible explanations for the symptoms. It’s unclear how additional symptoms could rule out a Behcet’s diagnosis, especially since Behcet’s often co-occurs with other diseases. Can you say a little more about the bruising? If you mean that you bruise easily and extensively, you’d definitely not be the first BD patient with that problem! I look like I’ve been beaten up most of the time. Some of it is from superficial thrombophlebitis which, surprise, Behcet’s can cause.

Anyway, I’m sorry you’ve hit these snags with doctors– they are unfortunately all too common with rare and difficult-to-diagnose diseases. What part of CA are you in? I’m in the bay area, and would be happy to help you find decent local doctors.

[northernca in reply to chlovak]

Hi,

Thank you so much for your informative reply.

I am in the East Bay, near the Caldecott Tunnel.

It would be nice to connect.

I've seen many Drs. on this journey, and they're trying to loop me back to dermatology & now hematology.

I'm seeing a rheumatologist through Sutter in Orinda.

He's great, but his learning curve on this one is steep.

I'm going to try to see Dr. Timothy Burger @ UCSF again.

He has great knowledge, travels to Turkey, etc. & diagnosed me in the first place.

The catch is, my skin has to have lesions somewhere, and by the time I get the appt., they're gone.

He says he can't see me unless it's a dermatology appointment with active lesions.

I get it, but I can't time it.

The bruising is on arms, legs, feet. I don't remember any specific trauma to those areas, but they are as small as cough drops and as big as the mouth of a drinking glass. I glance them in the mirror, and am surprised each time. Some hurt, some don't.

I'm aware that one needs not to have all of the listed symptoms to be diagnosed.

I have most all of them including the horrible gut and hip pain.

I'm trying the elimination diet to see if it helps.

Has anyone had any experience with nutritional changes?

Thanks again for all of your helpful replies.

Remembering to breath though the pain lessens it some.

I'm grateful that you all are here.

[chlovak in reply to northernca]

You're very close to me! We should get together and chat/strategize. For now, try to make an appointment with Dr. Molly Magnano at Sutter East Bay. My experience with her has been mixed, unfortunately, but it sounds like she may know more about Behcet's than the doctors you've seen, and so might be worth a shot. I'm sending you a private message so we can talk more. Hang in there!

[Expectthebest]

There was a rheumatologist in CA named Paul sussman. He retired but his knowledge of BD patients was exemplary. Perhaps his practice still has other MD's that could help???

[northernca in reply to Expectthebest]

Hi

Thank you so much

I will look him up

You are the best!