My symptoms were also very atypical. I never got diarrhea or any symptoms at all before I got a partial obstruction in -89, more than 20 years ago. Then nothing happened, could eat and drink what I wanted, as earlier. Got no diagnose and no treatment.
Then in -04 I had some strawberries, and because of that, I got another partial obstruction. the strawberries couldn't pass, and I had severe colicly pain and cascade vomits.
Gradually got diarrhea, just a few times a day, distention, fever and pain, and got severe anemia. Got a colonoscopy and a gastroscopy. My GP told me I had IBS, and that there was nothing more to examine, I had got all the possible examination tools they could provide.
This was absolutely not the truth. I found out by searching the internet that they could examine the small intestines. I asked my GP fpr this, he still told me everything was done.
I did not leave his office untill he made an appointment to have a look at my small intestines. You know, may be 1/3 of us have Crohns there.
One week later he called me to appologize. They found that my disease was in the jejunum, and that there was narrowed areas there, causing blockage when food containing fibers was passing the narrowed parts.
My GI wants to do a surgery, a resection, when my symptoms is getting too much for me. That is my only option. I have been using LDN, low dose naltrexone for 3.5 years, this medication is keeping my symptoms at bay. LDN is an untraditional and controversial medication for Crohns, it works great for some Crohnies and don't work for other. Just as all the other medications we're suggested to use.
I have got what they call Diffuse Jejuno ileitis, we're just 3 % having this type. The most typical symptoms is a lot of obstructions because there is narrowed areas due to inflammation and later on strictures in the jejunum and in the ileum. This type is often burning out after years, starts with a mean age at 24, 10 years earlier onset than other Crohns types, but it seems I was atypical, mine started when I was 57 years old.
I have told you my story to show you how different this disease could be, and to never give up if your doctor is not doing his job. There are several ways of getting examined, I am quite sure you haven't got any colonoscopy /to examine your bowel, gastroscopy / to examine your upper digestive system (stomach and duodenum) or x-rays with barium contrast / to examine your small bowels /intestines. You would remember this.
You need a diagnose to get a proper medical treatment to get rid of your abscesses and to get a maintanance medicine for your disease. Good luck!
