Very Sick, Undiagnosed IBD? or something else?

Hello,

I am a 25 yr old female and I have been sick with GI Problems most of my life with some periods of wellness in between. For the past 2 years I have been experiencing extreme waves of sickness with a few months of lesser degrees of sickness. Here's how it goes...

When I was about 10 years old I acquired a virus that made me very sick. I had an enlarged lymph node and became mildly sick, low grade fever and lump for about 2-3 months and had to have surgery to remove it. The cause of this lymph node was benign and unknown. The doctors said I had a virus and I got better and that was that. Soon after that I started having GI Problems. I would have periods of extreme Fatigue, weakness, severe diarrhea and spasms alternating with periods of continuous vomiting sometimes lasting all night. My mother took me to many doctors. Rheumatologist said I had borderline ANA, I tested positive for CMV but nothing other than that.  Out of desperation to find a fix for my problems my mother made me do high colonic irrigation, NOT FUN! they were the most painful thing I have ever experienced. They did not help. This went on from the age of about 10-16, the last severe episode I had ended up with me in the ER. I had extremely severe stomach spasms,very  high Blood pressure and the doctors gave me some medicine to make me feel comfortable and lowered my Blood pressure and then sent me home. After a while with no diagnosis I just gave up and after a while I seemed to get better.

Since then I have experienced brief periods of extreme spasms, diarrhea, nausea and extreme vomiting. The attacks happen in the middle of the night waking me up in extreme pain, I usually spend all night in the bathroom in agony and then for about 3 days after I have terrible pain in my abdomen.  

In the last 2 years I have had continuous diarrhea and stomach pain. This started after I had my first son 2009, the diarrhea started to become continuous 3 months after I gave birth via C-section. during that time I had one incidents where I lost control of my bowels and went to the ER where A CT scan was done. The findings at that time were "mild sickening of the colon" Colitis". They gave me fluid and sent me home and told me to follow up with a GI. I had to wait a few months because of insurance reasons, when I finally saw a GI he performed a Sigmoidoscopy and said he saw no evidence of disease.  I accepted this and thought, OK maybe this will go away.  that was in the later part of 2009. I did start to feel better after that, then in October of 2010 I became pregnant again with my second child. through out the pregnancy and in to 2010 i experienced extreme Diarrhea and spasms, in May of 2010 i again had to go to the ER because of extreme spasms and vomiting. They said it was a "transient bug" they could not find anything, also they did not do invasive testing because I was pregnant. I went home. I gave birth in July 2010 via Csection again. I had a few weeks of calm after that but the symptoms came back again.

Flash forward to today. I am experiencing the worst spasms and diarrhea I have ever had, extreme pain lasting for days, I get very dizzy, I feel confused at times, in the past 3 weeks Ive started to have night sweats, Ive had an intermittent low grade fever not exceeding 101. Lower back pain, Joint pain in legs and arms and hands, skin rashes over my hands and arms, nausea and decreased appetite.

I have been going to GI doctors since last August. I have had a colonoscopy that was stated to be NORMAL, the only thing they saw were internal hemorrhoids. I also had a upper endoscopy after the endoscopy the doctor said they saw some inflammation in my stomach and that  my oesophagus looked normal. There were also some small nodules and they looked in my small bowel. They took several biopsies, everything came back normal. I met with my GI doctor last week for a final follow up. He stated that he found nothing abnormal in my biopsies my small bowel looked normal. I asked him if this could be IBS, he said my symptoms did not meet the criteria for IBS. I asked him if it could be Celiac and he stated that it was NOT celiac. We spoke about my symptoms and the fact that they are getting worse, he stated that he thought it could be and endocrine problem. Other than that he could tell me nothing about whats causing this problem. through all of my blood work he said the only thing he saw was that the size of my red blood cells were small, he then said that my hemoglobin looked normal and so that the anemia there was not Iron deficiency.

I also have been going to an GYN to test my hormones and my blood work came back to be elevated in adrenal hormones. I have also had a CT SCAN of my abdomen all of which they are saying look normal.

I hope that some one can shed some light on this for me. I feel confused as to why its taking so long to figure this out.

I was prescribed Levsin for the spasms but unfortunately it did nothing for me.
I have scheduled an appointment for an allergist to get tested there. I am really lost as to what is going on with me.

Could this be Celiac? could this be IBD? is it possible to miss stuff during these procedures? I'm really lost. thanks for reading my post.

[michell221]

hmmm.  This could be many things...

My thoughts..  Have they tested you for carcinoid? You can request a urine test (5HIAA test) 5  Carcinoid syndrome...  is a group of symptoms associated with carcinoid tumors -- tumors of the small intestine, colon, appendix, and bronchial tubes in the lungs.  You can google it to find out more.

You mentioned your adrenal hormones were high. This needs to be checked out right away.  One thing that can indicate is Addisons disease.You would need to see an endocrinologist and get a ACTH stimulation test to check to see if that is it.  It is important to do this right away since if you ever had an addisons crisis it is serious.

  There is a cure for this if this is the issue.  You can take cortisol each day since your body would not be making enough.  This is a serious disease.  

The symptoms are usually

Muscle weakness and fatigue,Weight loss and decreased appetite ,Darkening of your skin
Low blood pressure,Low blood sugar,Nausea, diarrhea or vomiting, Muscle or joint pains
Irritability,Depression