• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

First Flare

Hello All!

It's been a while! Quick Background, my son Jax (13 ...14 in 2 months!) was diagnosed with Crohns in Nov. 2011, 6 week taper of Pred., Started Pentasa 3X daily, VSL #3, and EN therapy 80% of calories. Labs continued to improve with every appointment and in Dec. 2012 we tried 3 months of Rifaximin to see if we could get them normal...we did...In June 2013 his labs showed he was in clinical remission....continued enteral therapy, stopped pentasa.

Started to swim competitively in the summer of 2012...returned to doctor in Nov and labs were slightly elevated...no symptoms. Doctor mentioned restarting Pentasa. We figured the return to school, not being compliant, probably the culprit (still drinking the same amount as in June prior to swimming), so we opted to retest stool in 3 months and be more compliant with EN.

Returned in February and labs were elevated. Lacto. 9.88, Calprotect. 288. Still no symptoms, but we decided to go with the GI recommendation and restarted Pentasa 3 x daily.

He began having mild belly aches in March right after Silver/gold 13 and up championships (he did great!). --Week of March 10th. We added an additional shake and started eating really well...no processed foods/junk. Bellyaches went away for 1 week and then...their back! He fluctuates between days of feeling fine, to mild bellyaches after he eats. I should also say he was a once a day pooper and now is going 2-3 times a day. He also has a terrible Tree Pollen Allergy and stated taking his meds March 15th (Xyzol 5mg).

We are waiting for stools to return. His Bloodwork came back normal, EXCEPT for CRP which came back as 12.8.

So here are my questions:
1.) How much do I panic? It seems as though I am consumed with his health/condition and have not been able to do anything but surf the net and worry!

2.) Is it possible for this to be a minor set back? I mean I know crohns is different for everyone and I'm asking non-medical personal, but sometimes I feel like we are more experts than the experts!

3.) What do your kids' typical flares look like? He is going to school, hasn't lost any weight yet...still growing...hitting puberty hard! ;)

4.) We are going to see a nutritionist who specializes in IBD tomorrow, Dr. Melvin Grovit ( from Columbia Presbetyrian in NYC)...Can diet help or should I not mess around and get him on steroids right away? -- Waiting for GI to call after stool labs come in....

I am so scared right now. He has done soooo well and he is making his confirmation next Friday, going on his 8th grade trip at the end of May, and graduating 8th grade in June...with his first school formal dance. BOO!!!! :(

Thanks in advance for all the support....
 
I have no real advice for you. We are still working on achieving remission. I've asked my son's GI doctors several times if the symptoms and blood work always correspond to the disease...and they've never been able to answer me satisfactorily. I know that a high CRP can be caused by many things not related to Crohn's. Fingers crossed that it's just allergies.
 

DustyKat

Super Moderator
Wow! Congrats on the swimming results but so sorry to hear that things may not be going so well on the inside. :ghug:

1.) How much do I panic? It seems as though I am consumed with his health/condition and have not been able to do anything but surf the net and worry!

So much easier said than done to say try not to worry until you have all the results in front of you! The stool results will give you a more complete picture and if they are trending up too in line with the CRP then I think you need to start looking a little deeper into things.
Where is your son’s Crohn’s located?
If he has Crohn’s is located around the terminal ileum have the docs been able to feel anything when they palpate?
Has he had any imaging/scopes done since diagnosis?

2.) Is it possible for this to be a minor set back? I mean I know crohns is different for everyone and I'm asking non-medical personal, but sometimes I feel like we are more experts than the experts!

It is possible that it is a minor setback and he may be able to be pulled back into line quickly.
I just want to be perfectly honest and so will put this out there, my personal opinion only mind:
It does concern me that your lad appears to have taken quite some to reach remission, 18 months, and his only long standing maintenance therapy has been EN. EN is fab but is not a long term stand alone solution unfortunately. :( So what I am leading into is that regardless of having eventually reached the target of normal labs he had inflammation present for a long time and he may have continued to have some simmering inflammation hanging around even with normal labs.

3.) What do your kids' typical flares look like? He is going to school, hasn't lost any weight yet...still growing...hitting puberty hard!

I think you need to hone in on what is happening now. For some kids weight loss and failure to grow won’t be a symptom. You have pain and an increase in bowel motions so something is going on.
CRP its own may not be the best indicator, particularly with allergies, so it will be interesting to see what the FC returns as. Still, 12.8 isn’t a just above normal reading. :(
To cover all bases lets look at the Pentasa. A very mild drug with questionable effectiveness in Crohn’s, that said it can cause upset and increased bowel movements in some people. In view of the fact that he didn’t have issues with it when used previously then I don’t know that it could be blamed now but I’m sure stranger things have happened!

4.) We are going to see a nutritionist who specializes in IBD tomorrow, Dr. Melvin Grovit ( from Columbia Presbetyrian in NYC)...Can diet help or should I not mess around and get him on steroids right away? -- Waiting for GI to call after stool labs come in….

Diet can be very useful as you have already seen because you are already doing that to a degree. I don’t know that diet alone in this case will be enough but certainly use it in conjunction with whatever may be needed. I personally believe that something like a Low Residue Diet is useful in symptom alleviation when flaring as it reduces stress on the bowel, just as going back to an Exclusive Enteral Nutrition diet does, but it needs to be exclusive.

Good Luck! I hope you soon have answers, direction and your lad is feeling better fast to enjoy his upcoming events, bless him. :heart:

Dusty. xxx
 
The treatment approach you are describing is very conservative (as opposed to aggressive) and could be considered poor quality care by some.

Is this by your choice - that is did your doctor offer medications like 6-MP and Methotrexate and you declined them? Or did your doctor not recommend/offer anything other than Pentasa?

I"m not sure what advice to offer because it certainly sounds like he needs a step up in medications but I infer from your choice to go to Dr. Grovit that you are trying hard to avoid medications and feel a dietary approach will work.

Failing to get and keep him in remission brings with it a high risk of bad things happening - things like obstructions, fistulas, abscesses, perianal disease, stricturing. Unfortunately all these are invisible and may cause few if any symptoms until they are severe. It can seem like they come out of nowhere but actually they are the result of uncontrolled inflammation.

Best wishes with the dietary approach. I expect there are a few people who have successfully managed their CD with a rigid dietary regimen. What research we have in this arena shows the benefit of EEN to induce remission but also shows that it is not sufficient to maintain remission long term. Only the use of immune suppressing/modulting meds has been shown to maintain remission.
 
I don't want to scare you. In my daughter's case, tests and symptoms do not show the real thing. Her flare ups are 2 or 3 times going to bath, no pain, no blood. Just a little belly disconfort. slightly elevated Sed rate, normal CRP. Colonoscopy or MRI shows the bad things. She had no symptoms at all for a while and she developed an anal fissure, that's when we knew the disease was progressing. Everybody is very different. It may be just an infection but is better to check it up.
 
So I thank you for all your feedback!

My son is doing well and Dr. Grovit has him on a nutrition protocol that seems to be helping. He is back down to 1-2 Formed BMs daily and hasn't complained of even a mild bellyache in 4 days. He was up for school and dressed before me this morning!! lol At 14 that's an accomplishment!!

Patricia56 Yes, the treatment plan was conservative, but the Small Bowel Follow through showed no inflammation in December 2012 and the doctor was VERY happy/impressed with his progress. He grew just over 10 inches in 2 years and gained just under 50 pounds, placing him back into the 70%. She respects the fact that we do not want to use medication as the first line of treatment before exhausting other options. If necessary, we will certainly use meds (and have), but some may argue that the risks that come with these meds are just as dangerous. I pray that with good nutrition and mild medication we will be able to keep him healthy and safe. I believe that's all any of us want for our children. Some choose different methods of getting there. We test his stool every 10-12 weeks (thank god for our amazing insurance plan) for continued/unseen inflammation.

He is responding well to this new protocol and we are hopeful that EN and other nutraceuticals will become more mainstream with time. And we'll test his stool again in 3 weeks just to be sure it's going back down (HOPEFULLY!!) He is not tender in any area of his abdomen when manipulated/pushed on by his doctor and he has no blood/mucus in his stool. As ALL of you have said, you just never know with this disease!

Having said all of that, should medication be his future, we will attack that from all angles as well and learn as much as we can about what's new and upcoming and what traditionally works for his type of disease.

Thanks again all for your help and guidance, not sure what I would do without parents like you all to keep me focused and feeling supported!
 

DustyKat

Super Moderator
So good to hear he is responding to his new regimen! :):):)

I hope all continues to go well and your lad keeps going from strength to strength. Good luck!

Dusty. xxx
 
Top