Update

[lenny]

My son is now 19. Sick since 14, diagnosed at 16. Suffers mostly from constipation, fissures, weight loss, fatigue.

He is now on Remicade. (Since April) It seems to be helping because his weight is good. 6' 1" and 155 to 160 lbs. His appetite is good.

However, it is often painful for him to go. He's still constipated a lot and doesn't feel right until he does go, so he feels crappy half the day a lot. Then he needs time to recover..at least an hour, sometimes 3. "It can be very painful or just very tiring."

Yet, this is an improvement over a year ago. He was extremely underweight, no appetite, super weak..

He is too sick to work or go to school because he would need random 3 hour bathroom breaks and he's found that it's helpful to squat to go, which is not conducive to a public restroom..

Any ideas on what else I should be doing for him now? How to help him have more of a life or feel better..thanks!!

 

[Clash]

So sorry to hear that your son is still struggling. Has he had any tests recently to determine if his meds need to be adjusted?

It can take some time for remicade to fully heal the bowel bit close to a year is a long time and sometimes remicade alone isn't enough. Or there could be some narrowing caused by scar tissue from the past inflammation.

Maybe some imaging or at least a fecal calprotectin stool test if it has been a good indicator for him. I would alsoentire lab work but for a lot of kids it isn't a great indicator of active disease.

I hope things improve soon.

 

[lenny]

What's confusing to me is if there were narrowing, how could he have good days. Out of a ten day period, he will have 3 good days in a row. Like, he goes in 10 minutes and it doesn't hurt. Then a bad day, then a couple terrible days, then 3 good ones again..and this has been pretty consistent since he was diagnosed. At most he's had a good month, but then it always starts hurting again.

 

[lenny]

He hasn't had any tests done recently. Just the blood work at his infusions. Absolutely hates the tests and everything..is the type to just suffer in silence. He always tells his doctor that he's "fine".

 

[Tesscorm]

I'm sorry that he's not finding greater relief on remicade.

Going on the assumption that remicade isn't doing 100% of the job, would he consider a period of exclusive EN? Crohnsinct's daughter needed a boost to remicade at the earlier stages of her treatment. Her GI suggested MTX but she tried a course of EEN to see if that couldn't get her into remission. It seemed to work for her, once the EEN kicked her into remission, remicade was then enough to keep it going.

As well, it may alleviate some of his discomfort for, at least, a little while. When my son did EEN, he had diarrhea the entire time. However, there was no urgency or pain. As the nurse put it, liquid in, liquid out. This may offset some of the issues re his constipation and give him a bit of a break from the pain and exertion.

EEN also has healing properties - we were also told it can take the bowels quite a while to heal, perhaps EEN can help in this aspect as well.

:ghug:

 

[Tesscorm]

Just read your recent posts - I don't know the mechanisms/triggers to constipation (other than the obvious stricture, etc.) but, if it comes and goes, perhaps EEN would help that as well... instead of doing a straight course of EEN, when he starts with a 'bad' day, maybe he can try liquid only on that day?? Maybe that would help avoid a 'build-up' and let the 'bad' period end more quickly???

If trying liquid diet for this purpose only, then I don't think it would be essential for it to be the EN formulas only. The formulas would give him nutrition but, he could mix it up with soups, etc. But, keep in mind, I'm only thinking out loud here!! My son has never had issues with constipation so I don't have any experience in trying to deal with this.

 

[lenny]

He put himself into remission at 16 with EEN, but the second time it did not work and he vowed never again. So, no, he won't do it. He is convinced it's not healthy or natural. He would try it, if it were "actual food". Honestly, I'm surprised he agreed to the Remicade and worry at every infusion that he is going to say, no more. He's the natural type.

And he's forgotten how sick he was a year ago!!! He was dying.

 

[ronroush7]

Sending support.

 

[Jmrogers4]

Yes, my first thought would be narrowing. Have to agree with imagining and other tests. I know for us the first year was a time of healing and trying to get back to normal and the 2nd year he just took off and "normal" was our daily routine.

 

[Maya142]

Does he have hard stools? Has he tried something like Miralax? I agree that he needs other tests, but it's worth doing them because the solution might be surprisingly simple.

Have you heard of the squatty potty? Not something he can carry around, but easy to use at home. We just got one!

http://www.squattypotty.com/d-28/

 

[lenny]

He's had these troubles from the beginning, off and on. Wouldn't narrowing make it consistently difficult to poop? Of course I'm terrified of narrowing.

He is seeing the doctor on Tuesday.

Thanks everyone!!

 

[my little penguin]

Crohns can cause dysmotility
Without any narrowing
Miralax daily can help with that
It's not a laxative just an osmotic so the water stays in the stool and moves through easier .
It does not give you diarrhea on a daily dose
So little effort is needed

 

[lenny]

The new doctor apt. went well. She's actually a PA, but she was KIND and she seemed to understand his problems and wants to help. She gave him a medicine to hopefully heal the fissures and asked to see him back in 6 weeks. We're hanging in there.

 

[ronroush7]

Great

 

[Sascot]

Good news, hope the fissures start to heal

 

[lenny]

Son developed a low grade fever 1 month ago and still has it. 99.5. They said his liver numbers are "slightly elevated". So, he is going to have a MRCP (I think) scan next week. Info is upstairs and I'm stuck downstairs with dogs on my lap .

Has also developed pretty bad acne from the Remicade. He used to have perfect skin.

He's feeling "okay".

 

[ronroush7]

Son developed a low grade fever 1 month ago and still has it. 99.5. They said his liver numbers are "slightly elevated". So, he is going to have a MRCP (I think) scan next week. Info is upstairs and I'm stuck downstairs with dogs on my lap .

Has also developed pretty bad acne from the Remicade. He used to have perfect skin.

He's feeling "okay".

I am so sorry. Prayers.

 

[pdx]

Hope you get some answers from the scan.

 

[Sascot]

Sorry things are not going great, good luck with the scan

 

[Mehita]

Look in to a creme called Epiduo Forte for the acne. It did wonders for my son and is safe for people with IBD.

Good luck with the scans.

 

[my little penguin]

Probably rosecea looks like acne but extremely common with remicade

 

[lenny]

Wow. I was JUST told that my son's alkaline phosphatase has been elevated since November! The first they told us anything about it being "slightly elevated" was in March when it was 159, but it was 211 in November and NO ONE told us! At the January apt it was 166, then 159 and it was 143 yesterday. So, they managed to upset me pretty bad with what appears to be good news. Nice going guys.

 

[CarolinAlaska]

Wow. I was JUST told that my son's alkaline phosphatase has been elevated since November! The first they told us anything about it being "slightly elevated" was in March when it was 159, but it was 211 in November and NO ONE told us! At the January apt it was 166, then 159 and it was 143 yesterday. So, they managed to upset me pretty bad with what appears to be good news. Nice going guys.

Alk phos is typically higher in kids because of bone growth. It can be flagged as high on the lab because the normal range for an adult is lower. That is why a knowledgeable doctor won't say anything about it, but an uninformed nurse or medical student may say it's high, not realizing what is what.

 

[lenny]

He'll be 20 in November, so not sure if he qualifies as a "kid"?

Was told today PCRM was "positive" so they probably want to increase remicade.
I haven't even told my son, yet.

But, he had blood again today, so..

 

[my little penguin]

Most crohns "kids" continue growing well into their twenties due to delayed growth from active disease earlier .

 

[CarolinAlaska]

He'll be 20 in November, so not sure if he qualifies as a "kid"?

Was told today PCRM was "positive" so they probably want to increase remicade.
I haven't even told my son, yet.

But, he had blood again today, so..

Does he still seem to be growing? Are the other liver enzymes high?

 

[lenny]

He put on a lot of weight when he first went on Remicade and grew maybe another inch, but that's pretty much stopped. (He's 6' 1" 162 lbs)
So everything seems good with my son except the elevated temp and that has been steady since March. Always 99.3 to 99.5. He feels better than ever and they're telling me the temp is elevated in 7% of people on Remicade, so most likely nothing to worry about..hope so!!