Posted 12/16/2013 7:46 PM (GMT -6)
This has got to be one of the most frustrating diseases! I'm so sorry you are not feeling well. First of all, you need to try not to get triggered by ignorant remarks from friends, family and acquaintances. Most of them are just clueless but trying to be helpful. Try to just give those you care about basic information and then just change the subject.
The thing with diets is that it seems that no one has a sure bet on what you are supposed to eat or not eat. There is no official "Crohn's diet" to follow in the way, for example a diabetic diet might be. So lots of people have tried different things like SCD, paleo, low fiber/residue, etc. My personal opinion is that everyone is right to some extent...I think diet had got to logically change our bacterial balance, which then changes inflammation levels etc. The thing is we all have different bacteria in our gut, combined with different genetics, environmental exposure, disease location, etc.
Soo, what works well for one person with Crohn's may not work at all for another. For me, I can eat certain foods one day and I will be just fine, and then I'll eat the identical food on another day and feel terrible. It's maddening, really. So you are not alone in all of this.
If you get on the right combination of medications, you shouldn't be in terrible pain. I don't know if the humira and entocort just haven't kicked in yet, or if you need to be medicated with something else. If you are in bad pain, you probably need to be calling your doctor back and letting him/her know that.
When I feel really bad, I go to what I call my "white" diet....mashed potatoes, white pasta, oatmeal, applesauce, bananas, turkey or chicken breast, rice.....pretty boring but it seems to help me. Another person will come along and say that is an awful thing to do, but it does help me get things settled. When I'm doing better, I can then go back to a more normal diet. I also have developed an arsenal of symptomatic medications, like phenargan or zofran for nausea, pepcid for heartburn, miralax, fiber pills, colace for constipation, etc.
A couple years ago at Christmas, I was just recovering from a partial bowel obstruction and was on an all liquid diet through all of Christmas, and we had to go out of town to my husbands' relatives....it was a miserable Christmas, but I did it for my kids and I got through it.
I wish I had better advice, but I still don't think I understand this stupid disease that well. The best we can do is try to develop a good relationship with a GI that you trust and keep trying to do what feels best. AND you can always hang out here with us...we do get it and you are not alone! Sorry to go on so long!!
54 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have GERD and IBS (Dx. with c.difficile 1/12- now resolved)
MEDS: Pentasa- 6 500mg pills per day, Dexilant, Metamucil, colace, miralax as needed, probiotics .25 xanax for sleep prn