Undiagnosed and truly frustrated at this point!

[tiredofbeingsick]

I have had problems with D all my life. Especially when I would go somewhere. When I was 17 I was dx with Panic Disorder with Agoraphobia. The Pdoc attributed the D to the Agoraphobia. At the time I had bad stomach cramps, lost over 50 pounds, D on a daily basis, weakness..fatigue the whole gamut.

Fast forward to 2004, started having elevated liver enzymes, had liver biopsy and blood work, multiple sonograms and CT Scan and MRI, all were negative. The Hep doc attributed it to: Probable Autoimmune Hepatitis which was not severe enough to treat. So the plan was to draw liver levels every 3 months and just monitor it. My symptoms at that time were stomach pain in upper RUQ area, D, Nausea, Fatigue, Itching, Rash, Joint Pain. (My LFT`s were 7 times the norm when first dx thus the reason for the liver biopsy)


Fast forward again to March of this year. I got sick and ended up on antibiotics. After I finished two rounds of those, I broke out in a rash on my forearm. It was painful and burned, it was red and raw too. I tried several prescription creams and finally had to go and get a Cortisone shot and some Cortisone Cream to clear it up. It finally went away. After that was overwith within a couple weeks I had severe pain in my lower right abdomen, to the point it scared me and I thought it might be my appendix. Went to the ER and they did a CT scan with contrast which showed my Gallbladder wall was thickened. So they suggested I see a surgeon. They gave me a couple shots of something to stop the billary colic as they termed it.

I had no insurance at the time so delayed seeing the surgeon until our recent move at which time I got in to see an internist who sent me for an ultrasound. The ultrasound showed Gallbladder Polyps. He referred me to a surgeon. The Surgeon did a HIDA Scan, it came back normal and showed that I had some Billary Reflux into the stomach. He stated he did not feel removing my Gallbladder would help the situation so he sent me to the GI doc.

Saw the GI doc in October of this year. Since then I have had the following tests:

• EGD-Normal, Hiatial Hernia Found and inflammation of esophagus/biopsied and was normal!
• CT Scan w/Contrast: Normal

I got the results of the CT Scan Friday and wouldnt you know it that was normal too! So now my GI doc has set me up for a Colonoscopy on December 5th.

At this point I am going crazy and really starting to question my sanity!:sign0085:

It is not normal for someone to have D on daily basis, within 15-45 mins of eating it goes right through me! Some days it is worse than others too. Sometimes I awaken in the middle of the night with stomach cramps and that urge to defecate. I have lost control of my bowels twice just out of the blue over the past year. I hurt in my upper abdomen near what my GI doc said was the opening of the small intestine area. I also have pain in my right side and near my belly button as well as lower abdomen/groin area. It is sore to the touch and sometimes it burns. I have reflux also. I feel weak and tired all the time.

I just dont know what else to do and I am starting to question my sanity at this point. Why is something not showing up? The last time I checked it was not normal for one to have daily bouts of D multiple times per day. I cant even go out anywhere, if I do I cannot eat anything because I may not make it to the restroom.

Any thoughts?

 

[UnXmas]

Hi, sorry you're having such a frustrating time.

It's not normal to have diarrhoea. On the other hand, it seems to be very common to have that and other symptoms and yet have no cause show up on tests. That's when doctors usually diagnose Irritable Bowel Syndrome, which is a catch-all term for digestive symptoms with no other cause. There's no end of conditions which can cause diarrhoea.

Do you still have symptoms that aren't part of Irritable Bowel Syndrome (like bleeding or fever or weight loss)? If so, it means they're missing something. Bowel movements at night can be a sign something more is wrong. Losing control of your bowels might mean there's a problem with the spincter muscles or nerves - I've had that kind of problem, it's a seperate issue from Crohn's/Colitis and there are different tests to assess it. I was assessed by a colorectal surgeon.

It does sound like you've had quite a few tests already, though. In the mean time, or if you do end up with a diagnosis of IBS or a "functional" disorder (meaning it's not a serious threat to health, and there's no objective signs of disease, just symptoms), you need an understanding doctor who recognises that the symptoms still impact your quality of life and will help you try to get them under control. Is anything being done to treat the symptoms? Have you tried anti-diarrhoea meds? Have your doctors suggested what they plan to do next?

I hope you get some answers soon. You're definitely not crazy! Medicine simply doesn't have all the answers.

 

[Natty]

Hi,
I have been ill since as long as I can remember. I was told by many doctors that I was either making it up, my abdominal pain was "hormonal related", or it was "stress related". Quite honestly you have to be your own advocate. It's hard, frustrating and mentally and physically exhausting. It took 18 years to find an amazing gastroenterologist and through two years of SO many tests I finally found answers. He initially thought I had Crohn's but he wanted to rule out other diseases. Because of his patience and determination he ended up discovering I had Gastroparesis, Celiac disease and subclinical Crohn's disease. The last was the hardest to diagnose and the last to be confirmed. I don't test positive for both chromosomes nor do I have the typical symptoms. You should ask your doctor about this. I really hope that you receive answers soon.

When you're suffering you feel alone, like no one can understand, but we are here for you. You're not alone.

You're not crazy either! Don't let anyone make you feel that way ESPECIALLY doctors. There are new studies coming out about Crohn's and other IBDs every year but autoimmune diseases in general are not being studied. With more and more people being diagnosed hopefully that will change.

 

[Jennifer]

Hi tiredofbeingsick, completely understand the user name.

There are so many tests out there is crazy. Have they done any stool cultures to test for blood, inflammation, parasites, etc? Have you been tested for allergies (there's a skin test they do to test for multiple different ones)? Were you tested for C. diff? Have you had an MRI, MRE, small bowel follow through or pill cam done? Have you had your vitamin levels tested especially B12, iron and vit D (being low or deficient in nutrients can cause all sorts of symptoms from fatigue to depression which goes hand in hand with anxiety)?

If you can get a second opinion for the gallbladder I'd do that and if you aren't comfortable with your GI and think they are blowing off your symptoms you'll want to find another GI as well. It seems hard to find a good doctor these days. D:

In the meantime you should be able to take something for your symptoms. There are meds out there for reflux, diarrhea (I take Lomotil as needed) and to help ease the pain (I take Tylenol 3 as needed).

Don't give up! Its definitely a long bumpy road for many but there's always a reason for all these symptoms. May be more than one thing going on. Either way they should be treating your symptoms while you get a diagnosis. You aren't crazy and you never were. My scopes came back great and I get diarrhea for what seems no reason. My GI wants to throw up his hands but my Rheumy is treating my Crohn's now as its affecting my joints (I'll be starting Remicade in Jan.). Keep your head up and keep us posted! We're here for you!

 

[tiredofbeingsick]

Thank you to everyone. My bowels went as near normal as they could get for the last week and then this morning I woke with horrible cramps and the big D once again. I had to take Immodium this evening for it. Its back just like it was and for the past few days my left knee cap has been aching, when I get up to stand or walk or bend my knees its painful. I do not know what has triggered that and I have been feeling just drug out and exhausted today. My Colonoscopy is scheduled for the 5th, I sure hope I get some answers.:shifty:

I just cant help but feel that even then they probably will not find anything. Someone asked above if I had ever noticed any blood in my stool and the answer is yes on a couple occasions but I never mentioned it to my doctor and its been several months since it happened. I assumed it was from straining or something or a tear so I really did not pay much attention to it, it was not old looking more reddish pinkish which I attributed to not anything severe. Maybe I was wrong?

 

[Jennifer]

Bleeding is never a good sign tiredofbeingsick. There are many different causes for bleeding and it'd be best to let your doctor know about it even if its stopped already. Hemorrhoids and fissures are possible with bright red blood yet you can have bright red bleeding from your small intestine. I had bleeding from ulcers in my terminal ileum so its best to have it checked out to be sure. Hope the scope gives you some answers! Keep us posted.

 

[tiredofbeingsick]

Bleeding is never a good sign tiredofbeingsick. There are many different causes for bleeding and it'd be best to let your doctor know about it even if its stopped already. Hemorrhoids and fissures are possible with bright red blood yet you can have bright red bleeding from your small intestine. I had bleeding from ulcers in my terminal ileum so its best to have it checked out to be sure. Hope the scope gives you some answers! Keep us posted.

Thanks Crabby, I will def mention it to him, he asked if I had noticed any bleeding and I told him no but I had forgotten about it until I got home and then I was going back over my symptoms in my mind and my husband reminded me about it and I just never mentioned it to the doc because so far he has done so many tests and nothing has shown up so I figured I was just making a mountain out of a mole hill. But I will tell him. Thanks again!