Need a diagnosis

need a diagnosis

I would really appreciate any feedback from all of you. I have been sick for 2 years and still no definitive diagnosis! I have had 4 colonoscopies in the past year showing inflammation and ulceration "suggestive of Crohns". I also had a parathyroidectomy last year and have developed pre-diabetes, intermittent mild anemia, intermittent high cortisol but tested negative for Cushings. My symptoms are: pelvic pressure when I sit;tightness in throat-reflux,hiatal hernia;tachycardia, lower abdominal mild to moderate cramping on and off. I have 2 pretty normal bowel movements each morning.
I am very nervous because the last few weeks I have noticed a burning sensation on my face, and some red blotches on my neck and arm that come and go. I had a fullworkup for neuroendocrine tumors/carcinoid because one marker(out of many) was elevated but no tumor was found and I had many blood tests and scans. I have been to many gastros and they all say they aren't sure if it's Crohns because no diarhea! This ordeal and not feeling well with no definitive diagnosis has made me very depressed and anxious and scared.
Questions: Does anyone else have flushing/blotchy spots on and off on their face and body? Has anyone else with Crohns just felt ill consistently for long periods without diarhea? I always thought people are sick for awhile and then well for awhile...with me I've just felt ill the whole time with active chronic ileitis and colitis seen on biopsy.
One gastro said it's mild, early Crohns....does that sound like what others have had in the beginning? I really feel like I am losing it and not sure what to do. My main gastro wants me to try Entocort but my endo. says don't because of the pre-diabetes. This is crazy. Any feedback appreciated! Also, I have gained weight this year and am not on any meds.

Hi Downtown and welcome! You have alot of issues with your health and not many here have them all or just one. Crohns is very hard to diagnose and I have Crohn's in the Ileum and just recently (awaiting biopsy tomorrow) with Colitis. I do not have diabetes, but I am careful of sugar now anyways. I was on Entocort and it is a mild to moderate drug but failed on me, now on Pred. As far as diabetes go I don't know much of it with the meds you can and cannot take. Are you on insulin? Try to control if you are not... you really have to get this Crohns under control if that is what you have. I was never a bleeder until recently. Everyone is different here, all we can do is tell you our own experiences. I lost weight and was trying, just doing the proper eating and size and portions. I dont get blotchy or red, and I usually have loose stools but now on Pred I tend to bind a bit. If you dont get your answers soon, I would get a second opinion, the longer untreated the worse it CAN get.

Lots of people go to help you with some of your issues. Take care!

Take a look at the symptoms of systemic lupus erythematosus (SLE), in particular a butterfly rash, if that would happen to fit your symptoms.

It is just something to consider, and may not fit, but it is one of many possibilities.

Dan

If your drs can't find out anything off of a biopsy you might want to ask them for a recomendation into the Mayo clinic. Good luck hope they figure out what's wrong.

I was going to suggest Lupus as well. It is characteristic to have a red rash on your face. It is an autoimmune disease that can be associated with other autoimmune processes. What was the reason you had your parathyroid taken out?

Hello and welcome to the forum!

Yes, I agree with the others...
take a look at Lupus.

All the best~Nancy

Hiya
and welcome xx

Thank you all so much. I am very interested in your feedback. I tested negative for Lupus...it is a flushing that just comes on as a bit of a burning sensation on my face, and blotchy neck and arm on and off without triggers. Does anyone with Crohns have this and cramps but no diarhea? Thank you so much. Also does Mast Cell Disease ever go with Crohns? I am being tested for that as well.

Any muscle weakness?

Dan

Stress/anxiety can cause the flushing that you described. That happens to me when I have a panic attack.

My sister has pain without diarrhea and she also has crohns. Its not far fetched. Gas can cause pain and so can stool passing through narrow openings from inflammation. Perhaps try a stool softener and see if that helps with any pain.

Hi there! I too have been sick for the past 2 years with no concrete diagnosis (tentative CD based on irretation seen on pill cam)...I also have not experienced what seems to be a common symptom of CD - diarhea. It doesn't sound like your rash is indicative of Lupus - the butterfly is really easy to pick out. However, the occurance of rash does sound like it could be autoimmune (if not related to stress as Crabby mentioned). Have you seen a rheumatologist or gotten your ANA tested? I had a weakly positive ANA (which was later described to me as being normal for a woman), so I went to see a rheum and they asked about 5 times if I had any rashes. My answer was no, but I got the feeling it may have been a big clue to them if I had. I hope you get your answers so you can start feeling better soon!

downtown1 said:

I tested negative for Lupus...it is a flushing that just comes on as a bit of a burning sensation on my face, and blotchy neck and arm on and off without triggers.

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Hi downtown1 - for the past few months I've been having a lot of facial flushing. This is a new symptom for me, and it started about the time that I developed blood clots so I don't know if this is related to my Crohn's or to my possible clotting disorder (waiting for the repeat test to confirm). I don't have the burning sensation you describe, but "out of the blue" (often in the evening) my whole face will turn bright red and hot. I don't think it's stress because it will often start at times I don't feel particularly stressed at all. I wish I knew what this was... I also tested negative for lupus (ANA came back negative twice).

downtown1 said:

Does anyone with Crohns have this and cramps but no diarhea?

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My most recent Crohn's flare started with bloating/gas, and cramping with BMs. It took about a mth for the diarrhea to start. But it was weird because I would have a BM that was D and then literally 3 minutes later have a BM that was not D. Weird.

I hope you get some answers soon!

Hi downtown1,
When I was 13 and first diagnosed, my mother could always tell when I was in pain from my Crohn's, as my face would flush, and become warm to the touch. It only happened when I was in a lot of pain. It even got to the point where my face flushed before I was getting any pain - which got annoying when my mother asked if I was in pain, but I wasn't.... yet. After 16 years, I now have permanent "rosy" cheeks. Diarrhea wasn't always an issue with me, but if it wasn't there at the start of a flare, it was soon enough.
I hope you find some answers soon.

Good health and best of luck.

InkyStinky said:

I don't think it's stress because it will often start at times I don't feel particularly stressed at all. I wish I knew what this was... I also tested negative for lupus (ANA came back negative twice).

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When it comes to panic attacks for instance, its a common misconception that one is stressing out and works themselves up into a panic. Often times they happen in a regular store that you've never had any problems with and will even happen on days when you're perfectly relaxed and happy. They symptoms come first in many cases. Anything can trigger them like sweating, warm weather, cold weather, excitement (happy or not), etc. I'm not saying that you have panic attacks, just wanted to clear that up.

Hi Downtown1! Good luck finding a diagnosis and welcome to the forum!