What to be looking for or asking about when test results return?

For the last 12 months I have been in the worst flare of my life. We all know that this effects us differently and my has come on head strong with constant D. Some of you can relate. I have no gallbladder and I had a resection because of a fistula taking out my parts of my colon, ilicel valve small intestine, and appendix removed. This was done in 2001 and was maintained well on Pentasa until last November.

Since then I have had it hard. With only 1 line of defense, rectal sphincter, a lot of trips to the Ladies Room are followed by a lot of cleanup. I don't know if it is a good or bad thing that I live alone or not. I have during the year suffered from depression. But thanks to all of you I know it could be a lot worse. I am very frustrated that nothing is changing:

Wanted to start me on steroids - refused - Went on SCD (I react horribly with on 24 hours to steroids)

Approved financially and started Humira Feb 2010.

Upped Humira to 2 injections every 2 weeks because showed no improvement in May.

Also during the year I have been on 2 courses of Flagel

Stayed on Humira while trying to find the money to get on Remicade.

Started Remicade Oct 21. -Nov 4- next on Dec 2

Went to GI yesterday No improvement. I still am up at lease 2 to 4 times per night, I still have mucus D 6-9 per day. No blood. Ask about Celiac? Ask about Hadda?

He did not want to do a pill cam because of my previous resection. But did order a CT Enterography for yesterday. Had that done. Also doing lots of blood work and ordered a three day stool study. Have to wait until Monday to start, so all the barium gets out of my system. Last Colonoscopy in Dec came back clean.
Also 2 small bowel scans showed -------.

I guess I am just so frustrated that I want some answers as to what is happening in my body! So after all this when the results come back can/will any of you give me feed back on what I should be listening asking and looking for.

I know this has been long and I have given you a lot of information, I just hope that I have made it understandable.

Thank you Thank you Thank you

Here's what I look for in results:

1-Are things improving. If yes, probably staying on current meds is the best option. I would ask what other things you might try to lesson symptoms. Maybe Immodium or other meds might help you manage day to day.

If things aren't improving, I would want to know if longer time on the same meds stands to continue helping (maybe they haven't "kicked in" yet and could continue in your system and potentially help eventually), or if it's time to add other meds. Still, it would be worth asking what to do to help manage day to day. I know others take anti-diarrhea meds (I personally do not) and it helps them get through each day.

2-Depending on results, I like to know what my doctor's long term plan is. Also, it's important to know what they think are options of other/adding meds to get things in check.

3-Are there supplements you should be taking since you're not absorbing nutrients? Should you be trying Ensure/Boost drinks to help get some vitamins?

It's so frustrating to have a normal test, yet still have problems. I hope they get you on the road to recovery! Sometimes having no symptoms then severe symptoms is worse than having some symptoms (yet more manageable) all the time. I'm the type, even when all tests are good, I have symptoms, but I don't have periods of unmanageable (knock on wood) problems that hinder day to day life.

Come back and let us know what the dr says! Oh, and make a list to take with you of any questions you have so you don't forget them!

Things to ask the doc about you didn't mention specifically, starting with possible assumption this is NOT a CD flare:

Testing for bacterial overgrowth in small intestine - can cause diarrhea/pain

Is the 3 day stool test a fat test? Where you eat a 100 g/day fat diet and collect stool for 3 days? If so then he's looking at fat malabsorption which could also cause diarrhea. Important to do this test correctly and directions are not always very clear so ask lots of questions and keep an accurate diet log to turn in cause they compare how much fat you ate to how much is in the stool. If they don't know that you went over/under then they can't do an accurate test.

Have you had repeated c. diff testing? Need 3 tests in a row within a few days to be sure there is no c. diff, especially if there's a history of c. diff infection

Are you still on Pentasa? You could have developed a reaction to it that may be the cause/contributing to D

Celiac's is always a possibility since this can develop at any time. Blood test is pretty good at ruling this out now.


If it is a CD flare:

Cimzia - some evidence this may be the most effective of the 3 Anti-TNF alpha meds

Starting an immunomodulator - either mercaptopurine or methotrexate (or both as some docs are doing) ? these drugs target a different part of the immune system and that may be what you need

Going on liquid formula diet at least 2 weeks to see if you get improvement; can be a very helpful bridge while waiting to see if immunomodulators will work