Stricture found on colonoscopy, sick for 3 months, still no answers from my doc!

Hi,

I'm a 20 yr old female who was diagnosed with Crohn's in 2007. I've never had to have surgery or anything but have never had a real remission period of any significant length. Ive been on everything from Imuran, Prednisone, Asacol, Bentyl, Lomitil, Phenergan, etc

I was doing ok until roughly 3 months ago when I started to have lower left pain (usually i have lower right pain) coupled with nausea, vomiting, diarrhea, fatigue.

Docs couldnt decide what it was so they ran a bunch of test and found a left ovarian cyst. well 4 days later they did a ultrasound and the cyst was gone but the symptoms were still there. so they sent me to a OBGYN and he gave me some antibiotics which did NOTHING. so he did a diagnostic lap, cut some nerves and found nothing out of the ordinary other than some inflammation in guess what, my intestines.

So its back to the Primary and the GI.

They decide to put me on Asacol (400 mg 3x a day) and Pred. (30 mg 2 x a day) and run some more tests.
multiple blood work, a small bowel series (which took forever cause the barium didn't want to move through me once it reached a certain point), and CT's later they decide its my Crohns after all.

SO, im back with the GI who decides he wasn't a upper endoscopy and a colonoscopy.

At this point the pain is back on the right side, I'm still nauseous, I'm having infrequent very small pencil thin watery BMs, passing a lot of gas, and my stomach is bloating every day to the point where i look prego. and this is happening every 3 or 4 days
I think its a partial obstruction but nothing ever shows up on the tests. Personally I think the GI tests which always make me have diarrhea are causing the obstruction to go away before it can show up on the tests....but hey what do i know...

Upper endoscopy turns up mild esophagitis and gastritis but that's it.

The colonoscopy i had done Wed and it showed up some non bleeding ulcers and hemorrhoids but most importantly it showed a stricture at my ileocecal valve.

I tried to ask the doc what this means but he refused to say anything. just told me to see him in 6 weeks. i called his office because i really am worried and they told me they would know more when they get the biopsies back... which wont be until late next week...

I have a pic of the stricture and to me it looks like a pencil couldnt even fit through the part of my intestine... Im REALLY worried.

Could someone who knows more about this take a look at the stricture and tell me if im over reacting or not???

I'm a first year nursing student who has already had being sick mess up my first 2 years of uni I REALLY cant afford to not get being so sick taken care of before uni starts back in Aug... If the stricture is really as bad as it looks to me then i need to know if i should be finding a new doc asap who will fix it.

Thanks so much! xoxo

[lizziecee]

Hi - I have just had my first resection (last part of my small intestine, ileocaecal valve and first part of my large colon) because of multiple strictures. I had never heard of the ileocaecal valve until then. I have had Crohn's since 1970.   I never saw any of the photos taken during colonoscopy prior to the surgery. The strictures were found some 3 yrs ago when I had my first MRI with contrast. Your photos are too small for me to comment on them, but I would think from your symptoms, particularly the lower abdominal pain and thin pencil like faeces, that the strictures are causing your current problems.

I have a wonderful, very intelligent and up to date gastroenterologist who has taken care of me for the last 7 years, but he had to refer me to a surgical gastro for his opinion. He agreed that I needed surgery as no medication can make the strictures go away.  That was 4 months ago, and I am just recovering...still got severe pain early morning before having a movement, and most days, explosive watery diarrhea, so I am wondering if the surgery was worth all the discomfort. I do think though, if I had refused surgery, the strictures would have eventually burst, which could be life threatening.

Can you get a referral to a surgical gastro? He can look at all your tests and make his own expert opinion.

Be proactive - 6 weeks is a long time to wait for answers when you are in pain.

Take care,
Liz.