# Tired of being a mystery



## burslch (Feb 9, 2005)

I'm so stressed out from waiting. Hi, I'm new here, my name is Christine. I have a history of IBS w/ constipation for about 10 years. I have been very sick for about 3 months. Nausea almost every day, at times violent vomiting which has put me in the hospital 3 times since Dec. Constipation, diarrhea, wrenching abdominal pain (has also had me in the ER) and unexplained fevers. Finally had a CT Scan which showed thickening in the terminal ileum and cecal area as well as enlarged lymph nodes in the area. Then I had a colonoscopy which showed polyp like protrusions all over the ileum. They were hoping to diagnose Crohns... Biopsy came back not being Crohns. Biopsy showed lymphatic tissue in my intestine. Proved not to be cancerous. THen I had an Upper GI w/ small bowel follow through.. didn't show anything new... the terminal ileum is abnormal. Then I was sent to a surgeon to get an exploratory laparoscopy of my abdomen to check out the strange lymph nodes... he refused to do it and said take out the diseased intestine... (seems a little invasive to me as a first step in treatment!). So now I have a primary doc, a GI doc and a surgeon who are clueless as to what I have. It kinda looks like Crohns, yet the ANA was negative, the biopsy was negative and there were no ulcers in my ileum. They don't know what's wrong with me. They want to treat me as if it were Crohns by giving me 6 weeks of steroids. I'm afraid to accept steroid treatment for something they don't know what is! I'm waiting now for a second opinion with a famous Crohns/GI doctor, Dr Hanauer of University of Chicago Hospitals. His first available appt is JUNE! So I live every day with barf buckets and Tylenol #3 for pain waiting to find out why I'm such a mystery.


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## m_m_forth (Oct 21, 2003)

I am so sorry to hear what you are going through. I wish I could be of some help. Yours sure makes my problem seem minimal. Did the Doc's conclude you don't have any stomach ulcers, what about the vagus nerve is it maybe pinched. Maybe there's 2 separate causes. Just polyps plus something else making you nausous. Best wishes for everything


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## LaurieJ (Sep 3, 2002)

Hi,I am not a doctor either but from what I understand, it is not uncommon to use a short course of steroids as a way to diagnose a problem. If your doctor thinks that it is a safe treatment for you I wouldn't dismiss that out of hand...........For a lot of diseases, especially auto-immune ones, sometimes the treatment can be the best diagnostic test available. That is, if you take the steroids and you feel better then your doctors can be closer to the answer to what is causing your problems. Low dose or short term steroids are not as scary as people think as long as you are under close supervision of your doctor, you are alert for side effects and you do not stop them suddenly, etc... And if they work, you may be feeling better within days of taking them. (In addition a negative ANA does not rule out Crohn's or other autoimmune diseases. It helps sometimes if it is there, although there are alot of disease free people with positive ANAs, but not having one doesn't rule them out. Sometimes this is referred to as "sero-negative" x disease - where x is the name of the autoimmune disease that the doctor is trying to treat).Not as cut and dried as we would like it to be, but alot of medicine for chronic conditions is based on trial and error and if something works then you can presume that you have the disease that it is intended to treat.Laurie


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## Kathleen M. (Nov 16, 1999)

I don't have an autoimmune disease, but I have had to take steroids once in awhile for asthma and allergies (turned so purple from penicillin once you couldn't see my port wine birthmark







)Maybe because I have taken them before, in this situation I would probably give it a go to see if it made things better (which mostly tells you inflamation is part of the problem). Yep, sometimes it can be like swatting flies with sledgehammers, which is why they don't prescribe them for colds (although they are the best thing for calming down my nose if I have a cold at the time I need them for something else) or other minor things, but it sounds like the level of pain/problems you are having is definitely in the steroids are a reasonable thing to try category.The main thing is to taper off them slowly when you come off of them so your body has a chance to start making its own versions of them again. K.


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## burslch (Feb 9, 2005)

Thanks for your input. The past few days I've been alot more stable. After your ideas, I think I might try the steroids out when I go downhill again. It is afterall months until I can see this other doctor.


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## betagirl (Oct 12, 2002)

Hi BI go to a great GI at Northwestern Hospital, that may be able to help you. He definitely has free appts before June, and is one of the top IBD docs in the country. Dr. Hanauer is the best out there, but if you want I can give you my GI's info. Feel free to email me if you want.


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## burslch (Feb 9, 2005)

I'd really like the name! I emailed you but haven't heard back!


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