Pain - inability to eat

[bny806]

I am new to all of this, so don't know what is "normal" with it all.. I am undergoing all the testing (have a sister with severe Crohn's and we have the same symptoms), dr's thinking that's what I have. Biopsy results still pending from the scopes.. meanwhile I am MISERABLE

I don't know what to do.. I am awaiting the results, and then have the small bowel follow through I need to schedule this week, followed by the pill cam.. but I just can't eat.. it hurts... it hurts to be hungry, ,hurts to eat.. and I am having blood in my stool.. worried that it will take a couple of weeks to get all of this testing done (insurance approval etc etc).. and that I might be letting this get out of hand.. I had to go about 24 hours without anything but one potato chip (salt always seems to soothe).. I ate finally, and it just stimulated my gut to move faster it seems

what do you do when it gets really bad?
What am i supposed to do about eating? I'm already vitamin deficient and anemic.. I feel like I"m gonna waste away
Is there a quicker way- would a CT or enterogram(do they do those ?) be a quicker way to get a defenitive answer?
I feel like something could go wrong during this waiting game.. ugh..

 

[shamrock15]

Unfortunately, the tests take time. My diagnosis took almost a year, and there are many here who have had longer times. You can try taking multivitamins right now, try liquid forms if you can get them. Try a diet of soft food and fluid. You probably have inflammation in your bowels, and lowering the bulk going through can allow you at least some nutrition. Meal replacement shakes and products like ensure and boost can help as well. You will probably end up on prednisone when diagnosed, and you should notice an almost immediate return to appetite.

Take care, fingers crossed for a rapid diagnosis.

 

[Orchid]

If everything causes you pain to eat, then you should consider diet replacement shakes like Ensure and multivitamins. Maybe try broth for when you need a change of pace, warm soup has always been a great way for me to feel better. In my experience yougurt, even the kind without any fruit bits, just made things vastly worse. Have you had a colonoscopy yet? If you're suspected of having Crohn's the areas seen by a colonoscopy, the terminal ileum and colon, are the typical problem areas.

 

[lbligh]

Did your doctor mention EEN as a possible therapy? Ours never did, we had to find out about it on our own. Exclusive enteral nutrition is rarely used in the US, but it is in fact the preferred, first-line therapy for pediatric Crohn's in Europe and Australia. It is as effective as steroids, or nearly, for inducing remission in pediatric Crohn's. The drawback is that it is almost impossible to stay on long-term as a "sip feed", that is, just by drinking the stuff during the day. (For little kids, they'll usually set them up with a nasogastric tube and a pump, and feed them through the tube at night.)

Also will probably cost you $10/day for the Ensure shakes. Possibly less if you can get them on sale. But you can also use Carnation Instant Breakfast -- that is advertised as complete nutrition, and I think they can't say that if it isn't in the same class as Ensure/Boost -- things that have been shown to provide complete nutrition. Just make sure you drink enough, of whatever it is, to give you the daily calorie count that your doctor recommends. You can also drink water (of course), and I think that some regimens allow some limited fruit juice, and bone broth. But that's it.

You've got to eat something.

Once you are feeling a little bit better, you might look into the Specific Carbohydrate Diet (the book is Breaking the Vicious Cycle by Elaine Gottshall). A lot of people with Crohn's do well with that diet or its cousin, the Paleo diet. Many continue on their prescription meds but some are able to discontinue them.

I hope you feel better soon.

 

[bny806]

Thank yall so much... I am feeling better right now.. but that's kind of how it works.. I can hardly eat,, so I will do liquids only for a few days (though even those hurt- even water will hurt)! and then I feel decent, I eat lightly and then about a day or so later feel awful again.. I am losing too much weight, I can't stand it!

Yes - i definitely want to try the specific carb diet! I have read great things about it... right now I just am happy to eat crackers (gluten free) I will also look into the EEN..

I have my barium small bowel follow through next week - I just feel like I am going to waste away by the time we get this figured out! They are thinking small bowel crohns (my scopes showed friability of most of the tissues, but nothing obvious for crohns).. though I have al the same symptoms as my sister who has a bad case of confirmed crohns..