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Crohn's Disease
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Posted 10/9/2013 2:03 PM (GMT 0)
Hello, just introducing myself. I do have a lot of questions, but they are kind of general in nature, and I don't expect too many answers, but if you see something you can help me out with, great!

I have had Crohn's for about 9 yrs, although I have not been treated because I haven't had insurance, and really, I was not that bad. I would occasionally have little times of "flare", where I would have a lot of upper gastric pain after eating. A few times, I put myself on a liquid diet for about 5 days and it would seem to resolve. I dealt with bloating and gas a bit, but treated with gas-x and after a while, got used to living with it. Same with Diahrea--2-3 bouts a day, with no pain or cramping and it just became the norm. It didn't bother my life.


Over the summer, things have been ramping up, but I lead a very busy life, and it kind of snuck up on me. Around the 1st of September, I realized that I really needed to go get checked out. I have spent most of the month of September in and out of the hospital, and ultimately, on 9/26/13, I had emergency exploratory surgery. That surgery revealed not only a total blockage at the illium, but an abscess that was "holding it all together" and about 5 skip sections of active Crohns on my small bowel.

A resection was done removing about 6 inches total of my small bowel and colon ileocecal valve. I now have an ostomy bag and two stomas. My surgeon says when the CD is under control, she will be able to reattach my bowels in a few months.

My GI is putting me on humira as soon as we can get into the program and get going on it. In the meantime I am on prednisone and flagyl. I also take a multivitamin, probiotic, ginger, turmeric, l-glutamine, and GABA.

I am super confused about what food to eat. My GI is a heavy heavy proponet of letting the body heal itself by using foods. Specifically plant based, whole foods. He refers to nutritionfacts.org, and those articles make sense. However:

-plant based nutrition goes against everything I read about a CD diet. (low residue, easily digestible)
-I don't think I can be a vegan (which, he will not use that word, but that's what is) I don't really even like veg taht much!
-all of my known trigger foods are veg!

there are so many diets to follow, I am overwhelmed. I just want to get the inflammation down, but I get conflicting reports about what is or is not inflammatory.


I also asked him how will I know if the CD is under control? I was largely asymptomatic prior to the blockage other than the little bit of D. And now, with the ostomy, it's all D. I never had any bleeding.

I would like to hear from someone who is post op from a similar surgery to see what your outcomes were. What will it be like? I can't imagine I will be "normal". (I don't even know what that is). What is like to live without an illium? Anyone?

Thanks for reading, I know it's long. It does help me to list it all out here and tell my story.
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Posted 10/9/2013 7:01 PM (GMT 0)
Welcome, GrandviewAcres. Sorry you've had to have a bowel resection, and I hope your healing goes smoothly. I'll answer your diet questions in your other thread, but I wanted to say something about your low level asymptomatic disease.

I think you need to take a good long look at the past 9 years and really be honest about how "asymptomatic" you were. The evidence you gave of the amount of disease activity in the bowel indicates to me that you probably did have symptoms. What's tricky about Crohn's is that the bowel issues can be hard to pinpoint, other issues are nutritional and sometimes really vague, and the general fatigue many of us suffer can be blamed on other things, like the "very busy life" you've been leading.

Look, you had an abscess. This must have caused some pain. And the blockage must have given you pain over the past few months if not years. The amount of inflammation in the terminal ileum probably made you somewhat anemic and I'll bet you had low vitamin D, maybe you were also lactose intolerant and had low vitamin B12. It would be good for you to increase your body awareness and understand this disease more so you can work most effectively with your DR going forward.
Posted 10/10/2013 12:52 AM (GMT 0)
Thanks for the reply.

I don't mean to say that I was totally asymptomatic. I guess more accurately, if I would read about the symtoms of crohns, and read the stories of others suffering with crohns---that wasn't me. My worst symptom was periods of chronic upper gastric achiness. I have really only been feeling ill (and increasingly so) since mid-august of this year.

It's been something that I was just as easily able to attribute to food allergies or my gallbladder (felt just like GB pain).
Posted 10/10/2013 1:13 AM (GMT 0)
Yes, it can be tricky. There are a ton of nerves in the gut and sometimes when you feel pain in one place the problem can be in another. But as they say, when you hear hoof beats, don't think zebras. You know you have a chronic inflammatory bowel disease - if you have problems in your digestive system look at the Crohn's first.
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