Doctors are stumped, but I'm so sick! Help?

[Essieluv]

After being hospitalized for two days last week for diarrhea and dehydration, I am super frustrated. During my hospitalization, I got a colonoscopy. In the words of my doctor, my colon looked "perfect." My SED, CRP, and CBC are all normal. I don't have C. diff or any other infection. However, my fecal lactoferrin was positive, I've been having on and off fevers, I am losing weight, and have D with nausea and pain. I am completely stumped!:ybatty: I have a small bowel follow through scheduled for Thursday, and based on that I will be getting a pill cam done. Is there any other tests I can have? I just know it is my Crohn's acting up, but I can't seem to "prove" it to my doctors. And of course, now I can't start any new med because my doctor doesn't even know what is causing my symptoms. I'm sorry if that is confusing and longwinded, I just need some support. I don't know what to do, and I feel so sick. Any suggestions?

 

[Cross-stitch gal]

Unfortunately, no suggestions here. :ybatty: But, I can send you lots of hugs. I too hope they'll get this figured out for you. Please keep us updated. :hug:

 

[Ihurt]

Have they given you anything for the diarrhea to help try and control it? I mean they cannot expect you to keep going on like that getting dehydrated. Are you able to drink? If so, you should drink something that has sodium in it in order to keep hydrated like pedialyte or something. What are the doctors saying they think is causing this? Maybe the pill cam is a good idea. I hope you can get some asnwers. Did they check you for parasites and other bacterial infections besides C-diff?

Did they do a fecal calprotectin? I know there is the lactoferrin one you had done. I have heard that the calprotectin one is a bit more reliable, but then again, I also have heard that many things can raise these levels too( i.e. infection, parasites, etc...)

 

[Essieluv]

They didn't give me anything for the diarrhea...and Imodium isn't helping. I am drinking lots of water and Gatorade, but it's still difficult to stay hydrated when you can't stop pooping, lol. I was checked for a couple different parasites and infections, although I can't remember which ones. They were all negative. I haven't had a calprotectin, do you think I should ask for it?

 

[wild_one353]

could be crohn's only affecting small intestine.


start following specific carbohydrate diet, its good at reducing symptoms.
reduce lactose and sucrose as much as possible to start. that means eating cheese in stead of milk, and eliminating refined sugar and even reducing high sugar fruits. you may also be sensitive and irritated by certain brands of wheat.

then just wait and see what the small bowel comes up with.

 

[Ihurt]

I guess you could ask for the calprotectin test. This just shows if there is inflammation in the intestines anywhere.

What kind of foods are you eating right now? Geez, that sucks that the immodium is not working. I know a few people here who take a drug called cholestyramine. It is used to lower blood cholesterol levels but has a side effect of constipation since it binds with the biles in the gut. It has been pretty helpful to some who have chronic Diarrhea from what I have heard. Maybe you can ask your doctor about it. But I agree, maybe trying to change your diet ( paleo diet, SCD diet etc..) can help.

 

[SN8888]

I agree that SCD might be worth trying....which raises an interesting question - is Gatorade ok? If carbs feed the bacteria that your body is reacting to, will Gatorade give them more sugar (and glucose polymers) to feed on?

In the past, I've taken Pepto with Gatorade in the hopes that it will help prevent bacteria (or yeast or whatever) from feeding on the sugar, since i've read that the bisumth can kill bacteria. I am not really sure this is something I would recommend, though. I guess you could ask a Dr.

Also - I am a believer in Saccharomyces Boulardii (ie Florastor and others), especially with a low carb diet. I am not sure if it's right for everyone...

 

[Essieluv]

The thing is, carbs are like my only safe food right now. I don't eat dairy, and fruits and veggies (unless they are cooked to complete mush) are out. The only meat I can eat is turkey and chicken, and a little fish. I would love to try SCD, but I just don't think it would be best for me right now, boo-hoo Also, with the probiotics, for some weird reason they make my symptoms worse. Every time I try taking them, even different kinds, I get bad cramping.

 

[Essieluv]

I didn't think about the Pepto. Do you guys think it would help if the Imodium didn't?

 

[Ihurt]

Hmm, I am not sure about the pepto bismol. I know that is contains salicylates which is aspirin. You could ask your doc about it though and see what he says. I also take Florastor(Saccharomyces Boulardii). It is a yeast type probiotic that can help with diarrhea. It is worth a try. Also, when you take the probiotics, do you wean on to them, like take a small amount and work your way up? That is just an idea. But yeah, some people are sensitive to probiotics and get the cramping. I hope you find something that will help you halt the diarrhea. I feel bad for you, you must be miserable. Sending big hugs your way!

 

[Essieluv]

I haven't tried to wean onto probiotics-my doc just usually throws the full dose at me. That would be worth a try. Thanks for the tips and advice (and hugs!), I have my small bowel follow through tomorrow so hopefully it'll give me some answers.