New member

I've been reading posts here for the past few days and figured it was about time to write my own.

I'm in the process of being diagnosed with Crohn's.  My ordeal started about 18 months ago with stomach pain, diarrhea, shortness of breath, skin rashes and Raynaud's.  The doctors thought I had some unknown autoimmue issue due to an usual ANA lab results.  Never was able to pin anything down though.  I was then diagnosed with gluten, egg, dairy and soy allergies and proceeded to remove them from my diet.  Over the next year I'd have periods of times where I felt almost normal, and periods where I was pretty sick.  The periods of not feeling well became worse and longer and it appeared that I had something going on besides food allergies.  After several weeks of increasing upper right quadrant pain I had a CCK Hida scan to discover a ejection fraction of 13% with my gallbladder.  Had my gallbladder removed.  about two weeks after surgery my upper right quadrant pain returned with a vengeance, only it seemed to be slightly lower and farther to my right side.  There are no GI in my town, so at this point I started seeing a GI Dr 360 miles away from home.   A MRCP showed a blocked bile duct.  MY GI Dr. said that he would un-block the bile duct, but he did not think that was the cause of my extreme URQ pain.  I had an ERCP to open the bile duct and a stent put in.  The stent made me very very sick and had it removed 10 days later with an endoscopy which also showed inflammation of the esophagus, stomach in addition to the bile ducts.  The extreme pain from the stent went away, but still was having bad URQ pain along with constant upset stomach and diarrhea.  I had another MRCP to check on the bile duct and a CT.  Bile duct was just dandy, but the CT showed inflammation in the intestines which lead to a colonoscopy that showed inflammation and ulcers in multiple places including the terminal ileum.  The GI told me it was most likely Crohn's.  Biopsies came back which did not clearly confirm, but my GI said that he still very certain it is Crohn's.  I've been on Entocort for 4 weeks with no improvements yet and was just started on Asacol (in addition to omeprazole, vicodin and zofran).  My GI said to give it two weeks before we move onto the next medication.  Since May I have missed a very large amount of work for surgery recovery, traveling 360 miles to see the GI and just from days/weeks of not being able to function.  I don't want to be offically diagnosed with a disease I will have to deal with the rest of my life, but at this point, I don't really care what it is.  I just want to know what is wrong so that I can get on with my life and hopefully find a way to manage it.  I'm wondering if gallbladder and bile duct issues are common with Crohn's, or did I just have bad luck in everything happening at once?  Also, the majority of my pain seems to be fairly high, right beneath my ribs on the right side.  I do have some LRQ pain, but the worst of it is upper.  Is this normal?  Thanks for your time and thoughts!          

Heya Cat,

yup, that  is an almost perfect description of how it started for me, blocked bile ducts, gallbladder removed, ulcers, pancreatitis....

I did not see you mention anythiing about checking your pancreas, liver or kidneys. If your bile ducts were clogged for a long period of time there should be some testing done to check out those organs, lipase would have backed up into those organs rather than gone into your intestinal track to help digest fats.

Those organs should be checked just to make sure they are operating at "peak" efficiency my friend :)

Currently beginning to resuffer these very same sympyoms...

But yes, all those things you describe sound connected, they were for me.

I know Docs, and other folks and your own mind can try and make you think some times that it's all just one run of bad luck, like dominoes falling.

I used to think that way to, but that was many years ago. To much coincidence usualy means, if it quacks like a duck.....

Keep on top of it, keep asking questions. Alot of things you may be able to get done via email with you Gi, like requesting blood tests, or scans, depending on wether you can have those farmed out to you localy.

Gl , wishing you well and your in the right place for help and advice

Thanks

Jon

As you are getting sorted out with this, you may also wish to look at your diet. For some diet changes can really help, of course with others it does not seem to matter. There is tons on information here and on the web. Unfortunatly although every diet will tell you that they have the cure, the diets frequently contradict each other. I know when I started looking into it I found this really frustrating. In any case it is one more thing that for some really helps

Best to you

Dave

Thank you everyone for your kind thoughts and comments/suggestions. It is actually kind of comforting to hear that my diagnosis of CD sounds spot on. I'm ready to know what is wrong good or bad so I can focus on how to manage it instead of worrying "what is wrong with me!"
I have had my liver and pancreas tested, but I don't think I've had my kidneys tested. I will make sure to ask my doctor about that. I am on cholestyramine and it does seem to help. My diet is something I know I need to try to work out. The last year I have been on only on fruits, veggies, meat, fish, pork, rice and the occasional coconut milk, olive oil, nuts etc. This summer about 75% of my diet has been raw fruits and veggies, so after reading up on Crohn's, three weeks ago I went on liquid/juice and rice/rice products. I believe this is why pain has been more tolerable the past few weeks. Most days I have been able to work 4-6 hours. Last night I ate about 3 forkfuls of pork and green beans and I'm suffering from it today, only made it an hour at work. I'm very lucky to have an employer who is very understanding and is allowing me to work as I am able. I guess I'm also "lucky" in the fact that I'm currently overweight. I have lost about 30 lbs this summer, 15 in the last three weeks, but I have another 40-50 to go before I need to start worrying about being underweight. I've been doing some research into probiotics and enzymes and hope to get started on something soon.

Thanks again for all the support!