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Wife looking for advice about Crohn's

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Crohn's Disease
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Posted 7/18/2014 5:16 AM (GMT 0)
My 25 yo husband has been having frequent heartburn and a 'sensitive stomach' for years but things suddenly got worse. He got a stomach bug/flu back in March and even though he improved some after about 10 days, he is not back to his old normal self at all. He has abdominal pain daily and has not had a normal BM since, only diarrhea. He has fallen into some sort of pattern where he will be able to eat somewhat normal and be ok though he has some abdominal pain and diarrhea, then after a 2-3 weeks, he gets suddenly sicker for no apparent reason. He wakes up in the morning with nauseous and if its very bad, vomiting. He has a hard time sleeping even though he is always tired and has to wake up to use the bathroom. He has to go to the bathroom every hour or two, hardly eats, he's lost about 15lbs now since March, and he feels weak and sluggish. We've tried dietary changes but he doesnt notice much of a difference other than fried/fatty foods and spicy foods upset him a lot now.

The VA is our only healthcare for him and it was incredibly difficult to get him seen. They gave him one quick appointment when he was having a bad period and only gave him Prilosec, told him to take OTC meds (they dont seem to help though) and told him he'd have to wait until his August appt with his primary doctor before he could see a specialist. This was in May. We said screw that and in June when he had another bad period we went an hour and a half away to a VA hospital ER. They rehydrated him and finally gave him an appointment with a GI speacialist. He has jewish heritage on both sides but no history of Crohn's. Blood work was normal, stool analysis was normal, so they gave him a colonoscopy, it looked normal, and did a biopsy to check for UC.

While waiting the 2 weeks for the biopsy tests to come back he got very sick again. Worried I called the doctor but the test came back normal. They seem to think it is most likely Crohn's. Monday he is going in and they will put him under for an endoscopy to go further up to try and find what is going on.

My questions are, if it is Crohn's will they most likely see it and know right after the procedure? Or will we have to wait 2 more weeks for the lab results? Is there anything I can do now, especially when he is having a flare to help him while we wait for a diagnosis to get medical treatment? (Id have asked the doctor but my hubby didnt give me a chance to talk with him and he is nearly impossible to get on the phone!)

My biggest fear is they wont find anything Monday and the tests will be normal again leaving us with an 'everything looks fine' and no answers or no treatment. What should we do then? I ask because it seems like we often have to be demanding to get him seen and tested at the VA.

Any advice at all would be most appreciated!

Post Edited (Allasauna) : 7/17/2014 11:33:13 PM (GMT-6)

Posted 7/18/2014 3:38 PM (GMT 0)
Allasauna,

Welcome to the forum. You've come to a very good place to get the answers to alot of you quesitons.

First of all, considering you're husbands symptoms, he could really be facing numerous possibilities for an accurate diagnosis.

You've gone through some of the necessary steps, and when you get the biopsy results, you'll know alot more.

After the scopes, you might want to get either a Small bowel follow-thru, or an MRE, (sort of a gastro MRI). The SBFT, will get the best look at an area called the treminal ilium. This is the most common area where Crohn's is found.

Before you get to worried about a Crohn's diagnosis, it could be alot of other things, as I mentioned previously.

You should have him tested for both lactose intoloerance, and Gluten sensitivity.

In the meantime, he should very likely go onto a low residue diet. Very common type of diet for Crohn's patients experiencing symptoms. This should help calm his system down. Just google the diet and you'll get all the info you need.

Good luck, keep us up to date.
Posted 7/19/2014 1:57 AM (GMT 0)
Thank you so much 73monte! I forgot to mention we ruled out lactose intolerance already. I dont know about gluten though, definitely something to look into! His GI specialist told us she thought it was most likely some form of IBD, its just a matter of figuring out which one.

Today was a bad day for him, he told me and I quote, "Ive gone over 10 times already, I feel like Im pooping the life right out of me." :( He was kept up almost all night with trips to the bathroom and cramps. Thankfully he was able to get in a good nap this afternoon. I worry he doesnt drink enough water, (I try to get him to drink 60 oz a day at least but he doesnt always) and I also wondered if he should he be drinking like Gatorade or power-aid too?

Also his eyes have been very red and irritated so we thought he might have an eye infection. He had a regular doctors appt today and thankfully it wasnt an infection but eye inflammation. We got him some eye drops to help.

Thanks for the low-residue diet info! We knew that things like plain cereal, toast, pasta, and rice didnt bother his stomach as much but I wasnt sure which veggies and fruits were good or bad. He also seems ok with dairy but he doesnt eat very much normally anyway.

The other day my husband had some extremely sharp pain in his lower right side. He drank some more water and layed down and it slowly went away after a couple hours. Is that normal? When should be go to the ER? (obviously if he is bleeding a lot but other than that)

Post Edited (Allasauna) : 7/18/2014 8:25:14 PM (GMT-6)

Posted 7/20/2014 1:43 AM (GMT 0)
Lower right side pain is very typical of Crohn's. That's where the terminal ilium is located.

Still I would reiterate, you need to rule out Celiac disease, as the symptoms mimic Crohn's or Colitis.

Gatorade or powerade is a good idea. Also, a very common drink is Boost. There's another type as well, but they are a good meal replacement with much needed nutrients.

You should have you Dr. order some blood work. There are specific IBD markers to check for. Particularly, C-reactive protein, and Sedimentation rate. Also, check his white blood cell count, as it will be high if he's battling some sort of infection/inflammation. Check his hemoglobin to see if he's losing blood at all. Many feel they never see any blood, and figure they aren't bleeding, but with Crohn's blood can weep slowly, and even microscopically. Not present to the naked eye.
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