Just when we thought all was going well..

[Sonnyboy66]

Our 10 year old, son, who was diagnosed with Crohn's disease in the ileum, back in November 2015, is back in the hospital. On Sunday evening he had cramps in his upper abdomen, which went away until Monday evening and returned much worse and then he started vomiting.

We brought him to the local children's hospital, where all of his doctors are, and x-rays revealed that he had 3 large pockets of stool in his colon. Zofran and an enema were given and he had a BM, which relieved the pain and vomiting. Since then, we are now on Wednesday evening, he has not had a BM without an enema, mirolax and suppository.

Now he is scheduled for an MRE of the abdomen to see what is going on. His regular GI stopped in and mentioned that his intestines appeared to have little air in them, which meant it was just constipation or a stricture.

Other than being upset with the attending, who made no mention of the lack of air and planned to release our son without getting down to the bottom of the cause of his symptoms, we are in a quandary as to what is going on as well as what is next.

Should we be concerned that a surgery is around the corner for our son? Also is the remicade working as he had no symptoms since November and he has undergone 4 infusions and his remicade and inflammation levels have all good and he had no antibodies.

 

[Maya142]

I'll tag a couple parents whose kiddos have had surgeries. Paging Clash, Mehita and Kimmidwife.

No advice or experience with strictures here. Did his last MRE show any strictures? Let us know what the current one shows.

Sending hugs! How is he taking the hospitalization? Poor kiddo. I hope he feels better soon.

 

[pdx]

So sorry to hear this. It's good that your doctor is on top of it; the MRE should give you much more info about what's actually going on inside.

It's possible that your son won't need surgery. My daughter probably has some narrow spots in her small intestine, and she has had two incidents similar to your son's, with cramps, nausea, and vomiting. In both cases, the events resolved themselves with 24 hours of liquid-only diet. Now we're careful to give her a low residue diet, and she hasn't had any more issues since last fall. (Our doctor will order an MRE if it happens again, though.)

I also wanted to say that many kids, including my daughter, take a while to respond to Remicade, sometimes up to 6 months. It's working very well for her now. In her case, we needed to add some other treatments along the way to carry her over until the Remicade started working (EEN, budesonide, and methotrexate).

Good luck. Hope the MRE gives you answers.

 

[Maya142]

My daughter is also on of those kids who took a while to respond to Remicade. Don't lose hope! We had to increase the dose and frequency (10mg/kg every 4 weeks). She was also on MTX and Entocort at the time.

 

[Sonnyboy66]

The doctor previously said the remicade was working but I wonder if that is so with this episode whether it is or not? I was thinking of asking the following questions:Is there a stricture or not?; Was inflammation found? If there is a structure what is the length and amount of narrowing? What is the normal width based upon my son's anatomy? What are the short term treatments? What are the long term treatments?

If anyone has any other questions we should ask I would welcome those.

We should have the rsults shortly.

Thanks as always,

 

[Mehita]

A couple thoughts... one, he's never had an MRE before, right? So you don't know if there have been strictures before, correct?

Two, see if you can get the radiologist and GI together to look at the MRE. Ask them to meet. I wouldn't want to do surgery unless both agreed it was the best option.

How have his CRP, SED, and fecal cal been?

I wouldn't panic yet. It could very well just be constipation that needs to be managed for a bit.

 

[Sonnyboy66]

The SED rate was fine when he came into the ER 3 days ago and the CRP was normal at his last remicade infusion 1.5 weeks ago. They have not done a fecal cal test ina while. Overall the GI was happy with his progress prior to this episode.

Hopefully just constipation but the lack of air has his GI concerned, as it does us. We are also concerned as to whether the remicade is not working although his rate of remicade was high and no antibodies were detected a few weeks ago and the day of his last infusion 1.5 weeks ago.

I will advise once we see the doctors.

Thanks,

 

[JaimeM]

Sometimes with my crohns I get really constipated for no real reason.. I have to take miralax for a few days to get everything moving and then I'm good again.. I hope that's all it is.. But good luck!

 

[my little penguin]

Ds has constipation as part of his crohns
He has been on miralax daily for 5 plus years
Even then he can have issues
The Gi gets nervous if get any loose stools since that isn't his normal

Good luck
Hope they figure things out

 

[Sonnyboy66]

The GI advised that the MRE revealed no inflammations or structuring. Which is great news.

However they advised that at 1st read it appears that our son's cecum and appendix are in the upper right quadrant and not the lower right. The attending GI in the hospital did not seem to be concerned and said that our son had been living with this for 10 years so it was nothing to be concerned about. Our son's treating GI called in the afternoon after we were discharged and confirmed what was said about the lack of structuring and inflammation, but said he wanted to go over the MRE with a radiologist that he usually has read Crohn's patients MRE's and would get back to us. This is relative to the cecum/appendix issue. I asked whether it was something to be concerned about and he said he would discuss once he had reviewed the films with his radiologist.

This really took us from cloud nine to some place much lower.

Our concern is whether the cecum is floating freely in his abdomen and what to do above that.

Will advise once we hear back from the GI.

 

[CrohnsKidMom]

It's great news that there are no signs of inflammation or narrowing. It's so disheartening when there's a "but" added on. I hope this turns out to be insignificant and this is just a little bump in the road.

 

[kimmidwife]

Glad your son did not have a stricture we are dealing with that issue right now. Hopefully it is not a big issue about the appendix and cecum being higher up then normal. Keep us posted.

 

[Sonnyboy66]

We went to the GI today and we received mixed news, more towards the negative than positive, in our opinion.

The GI had a radiologist who reads his Crohn's patients films review the MRE as well as the CAT Scan which was done when our son had his initial blockage in November, 2015. Well there has been improvement there is a stricture in his ileum. They are unsure if it is scare tissue but believe it is, as the areas on either side show some dilation. There was also some area of inflammation in his intestine but that was quite small.

As for his issue involving the cecum being in the upper right quadrant of the abdomen, the GI mentioned that there could be catastrophic consequences if he has a malformed intestine. His words not mine. Now he has ordered an upper GI done to see if the intestine flows in the wrong direction. This would require surgery to correct. He said he just wants to be thorough.

He also suggested we see a surgeon just to meet him, and that he would be familiar with our son's case, should we need him, re: the stricture. He emphasized several times that he is not recommending surgery, and that our son could live with this for years. Only if he has repeated issues, either constipation or blockages. And I assume the cecum issue would also be discussed should it need to be corrected.

He was very happy with the remicade levels, which we in the 20's when he had his infusion a few weeks ago. He likes to see it around 10 or 11 on the day of the infusion, when the levels would be at there lowest. In addition there were no antibodies detected in our son's blood. Therefore, he would not recommend methotextrate at this point.

I asked him how long the stricture was he advised he would follow up with the radiologist on Wednesday. I then asked what percentage was the structuring. He said he would categorize it as moderate based upon the dilation on either side of the stricture.

Overall he said he was happy with the progress, especially the remicade numbers and improvement in the ileum.

We unfortunately walked out of the office quite bit less enthused than he apparently was.

Just as confused as ever and a bit annoyed at the discharge doctor, who was so wrong in what he told us when we left the hospital.

Does anyone have any suggestions on where we go from here, other than following the course and tests? What questions should we be asking? Are these results a major concern going forward?

Thanks.

 

[kimmidwife]

Sonny boy,
Can I ask where you guys are being seen?
Is it a major IBD center?
If not I would think about going to one for a second opinion. I would look into CHOP in Philadelphia.

 

[Sonnyboy66]

We are treating at Cohen Children's Hospital in New Hyde Park, NY and our son's treating physician was previously at CHOP in Philadelphia.

 

[xmdmom]

Sorry you are dealing with all of this! Was the doctor talking about intestinal malrotation which is a congenital problem? I guess I'd want to know if the GI doctor thinks that any symptoms are due to the malrotation or whatever positional abnormality of the cecum and appendix that they saw.

Sending positive healing thoughts your son's way.

 

[kimmidwife]

Sonnyboy,
Even though the doctor trained at CHOP, it might not be a bad idea to go for a second opinion. Some times another set of eyes has new ideas.

 

[my little penguin]

Second that
We have been with our Gi 6 years but still got multiple second opinion at other hospitals in the beginning .

Good luck

 

[Optimistic]

Hi Sonny. I'm sorry you have such a complex situation to make sense of.

Training at a renowned hospital is a wonderful quality to have in a dr. That is one critical way to build knowledge. Another very important way is being in environment with colleagues who are leading edge, seeing many many patients, discussing and continuing to learn all the time. Your dr is probably very good. Mine is too. But that didn't stop us from from getting to both Boston children's and Cincinnati. You lose nothing but some time and money and will gain either confidence or new thinking.

Good luck.