In pain and doctors don't know why

Hi, I was diagnosed with crohns two years ago. Since then I have had a resection of my ileum. My maintance drug has been 6 mp.

About three months ago my symptoms changed and have become progressively worse. I began having severe pain after eating and occasional diarehia. The diarehia when it comes is out of nowhere and very painful. They tried treating me with Bentyl, it helped but now does not. Then prednisone at 40 mg which did not stop the pain.

At this point I cannot eat because the pain is so severe. I have lost over ten percent of my body weight.my GI has done a colonoscopy, endoscopy, capsul endoscopy, ultra sound, gaulbladder tests and lots of blood work. Everything says my crohns is in remission.

Nobody knows why I am having so much pain or where it comes from. If anyone has suggestions please help.

Hi Inpainphilly and welcome to the forum!

Do you have copies of your test results? Over the years I've found that if its not something major, doctors might not even mention it. From your post it sounds like you might be dealing with a narrowing/stricture/scar tissue from your previous surgery. Has your GI mentioned doing an MRI, small bowel follow through or a CT scan? If not try suggesting those tests so you can get an answer to what's causing the pain. Also have you noticed an increase in gas at all? If so then you may be dealing with some bacterial overgrowth in the small intestine (SIBO) and may benefit from taking probiotics.

Keep us posted.

Hi there! I had a resection two years ago and I had the same symptoms for a long time before anyone told me that, because the took my terminal ileum and my cecum, I lost a valve that controls the flow of bile and other substances (food) through my intestines. I was put on cholestyramine (sp?) which binds with the bile and slows everything down. It was a big help. This was only after tests for c-diff and a capsule endoscopy and everything. Might be worth checking it out with the doc before you go through any unnecessary testing. It may be as simple as that.

That would be the Ileocecal Valve and yes its removal can cause chronic diarrhea. Mine was also removed during my resection yet I do not have chronic diarrhea. Definitely worth talking about this with your GI as well as what I mentioned above.

Hi everyone, thank you for your comments.

I have had a CT scan and I do have the results. I have had three doctors review the results from all of my scans and tests and none of them can find a narrowing, stricture or scar tissue. They are all convinced that this is not crohns related, however none of them know what it is.

They suggested questran powder to help with the diarrhea. The main concern at this point is that whenever I eat or drink anything, even water I suffer from pain. The pain varies from a 3 for water to a 10 for solid foods. This has made it impossible for me to eat anything and forced me to begin taking tylenol number 3 with codeine. We are at the point where they would like to put in a picc line to feed me but none of them can tell me what they can suggest to do to help with the pain. I can't live off of tube feeding!

Thank you.

Inpainphilly where exactly is your pain located? How long after eating/drinking does it take for the pain to start? Can you describe the pain such as burning, stabbing, aching etc.

The pain is in my lower right abdomen. It happens within 15 minutes of eating. I would describe the pain as stabbing and aching. It feels like the same pain that I experienced before my resection, and in the same spot.
Thanks!

Inpainphilly said:

The pain is in my lower right abdomen. It happens within 15 minutes of eating. I would describe the pain as stabbing and aching. It feels like the same pain that I experienced before my resection, and in the same spot.
Thanks!

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That's where my pain was and after eating - my crohn's is in the terminal ileum and I do have stricturing in the small intestine. I know they told you that your crohn's is in remission and no strictures but have any of them suggested any kind of diet for the diarrhea? Although I don't have problems with diarrhea, I am on a low residue diet that has helped me tremendously - that and Asacol, have put me into remission. I don't know if it will work but since the whole idea of a low residue / low fiber diet is to put a lot less stress on the intestines, it might help you while the doctors are trying to figure out what's wrong. If you haven't tried it, it's worth a shot. I couldn't stand that pain in the lower right abdomen!! Hope you find help!


Diet Recommendations for Ulcerative Colitis Flare
Follow a low residue diet to relieve abdominal pain and diarrhea.
Avoid foods that may increase stool output such as fresh fruits and vegetables, prunes and caffeinated beverages.
Decrease concentrated sweets in your diet, such as juices, candy and soda, to help decrease amounts of water pulled into your intestine, which may contribute to watery stools.
Decrease alcohol consumption.
Try incorporating more omega-3 fatty acids in your diet. These fats may have an anti-inflammatory effect. They are found in fish, including salmon, mackerel, herring and sardines.
Patients often find that smaller, more frequent meals are better tolerated. This eating pattern can help increase the amount of nutrition you receive in a day.
Consider taking nutritional supplements if appetite is poor and solid foods are not tolerated well (see section on recommended liquid supplements).
Diet Recommendations for Crohn's Disease Flare
Follow a low residue diet to relieve abdominal pain and diarrhea.
If you have strictures, it is especially important to avoid nuts, seeds, beans and kernels.
Avoid foods that may increase stool output such as fresh fruits and vegetables, prunes and caffeinated beverages. Cold foods may help reduce diarrhea.
If you have lactose intolerance, follow a lactose-free diet. Lactose intolerance causes gas, bloating, cramping and diarrhea 30 to 90 minutes after eating milk, ice cream or large amounts of dairy. A breath hydrogen test may confirm suspicions of lactose intolerance.
If you have oily and foul-smelling stools, you may have fat malabsorption. Treat fat malabsorption by following a low-fat diet. Discuss these symptoms with your doctor or nutritionist.
Smaller, more frequent meals are better tolerated and can maximize nutritional intake.
If your appetite is decreased and solid foods not tolerated well, consider taking nutritional supplements (see section on recommended liquid supplements).

http://www.ucsfhealth.org/education/nutrition_tips_for_inflammatory_bowel_disease/index.html

Definitely does sound like the Ileum. Everyone has scar tissue after surgery (it was cut up and reattached, the healing process creates a scar). Its possible that the scar is a little more narrow than normal. Tests that I found to be really useful are an MRI and small bowel follow through. Do you know what your CRP is/was when you last had it checked?