Despite meds symptoms dont go away

[SZellis]

HI
My 12yo son with CD has been on 6-MP and prednisone and Pentasa for 6 months. He is being weaned off the prednisone. and is now down to 20mg (fr 60 in june). He was doing better (going to school most of the time, getting good grades, etc) when they decreased him to 20 mg pred about 2 weeks ago. Hes had constant diarrhea since then around the clock (anywhere fr 5-10 times a day), with over all malaise and stomach pain. He has tried a lite diet and it doesnt help. His blood work according to the doctor continues to be good so he wasnt so concerned but he is sick and hardly able to go to school.
He is having colonoscopy tomorrow in NY and Im so confused as to how he could be so symptomatic without significant changes in blood work?
Also, yesterday suddenly he got really nauseous and vomited what looked like reddish oatmeal. I am not sure what that was and it was really odd???Sheryl

 

[Mumof4]

Hi, I am sorry to hear your son is suffering so much right now. Hopefully the colonoscopy will show what's going on. Please be sure to tell them exactly what has been happening and in particular about that stuff he vomited. Hopefully someone more knowledgeable will be along to provide so e constructive advice but I just wanted to say all the best for tomorrow and I hope you get some answers.

 

[Tesscorm]

I know there are a number of members here whose bloodwork doesn't reflect how they feel. Hopefully, the colonoscopy will offer some answers. But, note that if your son's small bowel is affected, the colonoscopy will not be able to see all of the small bowel (actually, I believe it sees very little of the small bowel) - an MRE or pillcam will give more results from this area.

I don't have any experience with steroids but I have read that symptoms can return if the taper is done too quickly.

You don't mention that EN (enteral nutrition) has ever been tried. EN has comparable success rates at inducing remission as steroids but NONE of the side effects. Outside of the U.S., it's often the first treatment option for children but, for some reason, is not as commonly used by GIs in the U.S. It may be due to patient compliancy as it's not an 'easy' treatment - usually approx. 6 weeks of no food, EN formula only. However, as I said, it has no side effects, can be used in combination with medications (EN is a nutritional formula, not a medication), provides all necessary nutrition, and has anti-inflammatory and healing properties. Its usually used 'exclusively' (ie no food) for a period to induce remission but can then be continued at a lower dose as a maintenance or supplemental treatment. There are a number of kids here who use it as a supplement to their nutrition and my son has used it as his only treatment for over a year. (It is not as successful as medications at maintaining remission, however. ie my son will be adding meds soon.) Here is a link to some additional info on EN plus there is a subforum under the treatment section. http://www.crohnsforum.com/showthread.php?t=36345

Good luck at the colonoscopy... hope it provides some answers for you!! :ghug:

 

[Livilou]

Hi SZellis! I'm so sorry to hear that your son is symptomatic regardless of treatment, this disease is tricky and oh so frustrating! I agree with Tesscorm..labs do not always give a perfect picture of what is really going on. My daughter just had an MRE last week (colonoscopy was done about 8 weeks ago). She is currently on LDN and steroids, bloodwork is perfect! However, fecal calprotectin levels have tripled in 3 months...and my daughter is asymptomatic! All diagnostic tests are showing active inflammation, narrowing of intestinal lumen and definite progression of the disease!!! That silent inflammation is dangerous! I hope you can get some answers with the scope. Good Luck and keep us updated. Kim

 

[Jennifer]

Hi SZellis and welcome to the forum!

Sorry to hear that your son is having problems right now and hopefully you'll get some answers soon.

Lots of good points already mentioned such as other testing if he's being affected in the small bowel (MRE, pill cam (make sure he has the fake pill first to avoid surgical removal), MRI, CT scan and small bowel follow though. An endoscopy may be needed as well if he hasn't had one in a while). A colonoscopy will only show the opening into the terminal ileum but does not venture inside.

Also as mentioned coming down off steroids too quickly (depends on the person how fast or slow they need to go) can bring back symptoms (typically when they get around 15mg). Prednisone comes in 5mg tablets (which you can break in half) and I've even heard mention of 1mg tablets but never used them myself. Talk to his GI about coming off the Prednisone slower, he might have to go back up to his previous dose first.

Yes many people have blood work that shows they are perfectly healthy or close to it. My CRP was 9 last time it was checked where normal is 0-4. It's pretty low yet sometimes I'd have diarrhea, abdominal pain, mucus and joint pain. When I tried the high doses of Humira all of these symptoms went away. So its possible that his current treatment plan isn't enough or its also possible he's coming off the Pred too fast.

Yet there's another possibility which was already touched on a bit. There could very well be a narrowing going on which could mostly be inflammation but could also be some scar tissue as well. Since he's started having some random vomiting that is concerning. Before my resection the same thing started happening to me. I randomly threw up one day, had some abdominal pain and next thing I knew my mom was taking me to the ER that same day. I stayed there for about a week or two and got some tests done and nutrients from an IV. They found that I had a stricture/narrowing in my TI which was both scar tissue and inflammation. Medication cannot treat the scar tissue but it can attack the inflammation. Yet even though I was on the highest doses I could go with 6MP, Asacol, Prednisone and Entocort, the disease was simply out of control and I had to have that section removed to prevent a blockage and force me into remission. I didn't have the resection until a couple of years after that ER visit though.

Give his GI a call as soon as you can and let them know that you're son is having all these symptoms including the vomiting. If the vomiting continues or if he starts having a fever (could be a sign of an infection) and/or his pain gets worse then you might want to take him to the ER.

No matter what happens, he will be ok. Best of luck to you both and keep us posted!

 

[Farmwife]

Hi and welcome.
:rosette2:
My beautiful Grace is one of those kids with semi-normal results.
But plainly something is very wrong!
I hope you get answers soon!

 

[Sascot]

Sorry to hear about your son! My son has always had normal blood tests from before diagnosis until now. The faecal calprotectin is the only test that came back positive for him - and then the colonoscopy showed small ulcers and granulation. That's good that your son is having the colonoscopy so that they can see what's going on.
I agree the EN is a great route to go down. My son had the EN (Modulen) for 8 weeks via the NG tube and it allowed him a few months symptom free. If nothing else it will give your son's stomach a rest and give him really good nutrition. Good luck.

 

[kimmidwife]

Sorry to hear about your son. My daughter too is one of those with very normal tests that don't really reflect her disease process. People have made a lot of good suggestions already. Take a look at some of the threads under the treatments section to get an idea of different things available and please let us know how we can be of help!

 

[DustyKat]

Hi Sheryl and :welcome:

I am so very sorry to hear about your lad and all he is going through...:hug:

Unfortunately it is not rare for children to have normal blood results when their Crohn's is active, my daughter was on of those and it can make things so difficult. I am once bitten twice shy now and unless the results match what I am seeing in front of me I don't believe them.

You have already been given fab advice about EN

What have they said to you about getting your son off Prednisone? I know they are weaning him but he has been on them for quite some time.

Good luck with the scope! I hope it is able to give a clearer idea of what is going on.

Dusty. xxx