Is he doing fine?

[xmdmom]

The GI doctor says my son (crohn's x 2 yr) is doing well. My son (21) is underweight (BMI 17.7%).He lost 5 pounds this summer and he can't gain it back with 2 BOOSTS a day.He is anemic Hgb=11.7 (14-18 nl) and he's tired, falling asleep in the early eve. He doesn't have diarrhea but has on and off gurgling, abd cramps. His CRP is better than before 6.7 (<5 normal). He has an ileal stricture that is worsened on MRE but otherwise no inflammation*. The doctor says "sounds like he's doing fine."

I said then what's causing his anemia and why can't he gain weight? No answers...

Also he had an episode of vomiting and pain for a day (wanted to go to the hospital) that passed and I wondered if it might have been a temp obstruction. The doctor thought this was very unlikely and thought it was more likely viral or food poisoning but seemed diff to me and my son.

The doctor says he can continue on his therapy and just watch.

What do you think? Is he doing fine?


* MRE initially read as completely normal until had it was compared to prior MRE and then, lo and behold, they saw the 10 cm stricture and said it was worse than before. So I'm not feeling confident with the entire MRE reading...

 

[my little penguin]

Maybe a second opinon ???
When I have more questions than answers from the doc I tend to error on the side of caution and get another set fresh eyes.

Anemia -is the doc treating this at all?? Did the doc give a reason for not treating it ??
Weight loss - is he on a restrictive diet ( paleo scd etc..)? That could explain the weight loss . If not does he track his calories in on something like my fitness pal to see if he is consuming enough without the boost.
Stricture not sure on that one no experience .

Hope you can get answers soon.

 

[xmdmom]

He eats a lot of meat and also BOOST has iron. He's on iron (diff to tolerate) but what's causing the anemia if not Crohn's?

He restricts raw veggies, spices and some foods that bother him but he is getting a lot of calories.

 

[Momtotwo]

Is he seeing an adult or pediatric GI? I know some ped GIs follow kids into their 20s.

My feeling based on what you shared? The GI is not aggressive enough. When was the last MRE? What is he on for medications? If he developed the stricture on his current meds and had signs that he isn't absorbing what he takes it, doesn't that indication active disease?

 

[xmdmom]

He sees an adult GI. His last MRE was in July.

We didn't want imuran/6MP so he's been on budesonide and naltrexone, juicing supplements. His doctor doesn't think he's sick enough for remicade. Not sure what other options there might be.

My son is quite concerned about the stricture. It seems like we're just waiting for it to get worse.

 

[Clash]

Regardless, of his treatment regimen if his 2 MREs have shown a progression in stricturing then it may be time for a change in meds. Usually, stricturing or fistulizing are cause for biologics to avoid damage or possible surgery.

With all the symptoms you listed it seems fairly obvious he has some active disease somewhere. A second opinion may be in order.

Hope you find some answers.

 

[Momtotwo]

But when was the MRE prior to July? How much time did it take for the stricture to get worse? I understand the Imuran/6MP concerns. I think an outside reading of the two MREs could be helpful since the worsening stricture was missed. When was his last coloscopy? Does he have disease in locations other than the ileal stricture you mentioned? Does the dr have a plan to prevent worsening of the ileal stricture? Does methotrexate do anything for that diagnosis? (I"m not much help, huh? But I share your sons concerns about the stricture and I think I would take steps to prevent that from getting worse.)

 

[xmdmom]

A second opinion sounds good but who? He is moving to another city for school and we tried to make an apt with a GI there (so he could be followed while at school) but it is likely that he'll be seen by a fellow. (The adult GI didn't want to see him bec. the referral said he was doing fine.) It's difficult for him to take any time off when he's in school.

He only has his initial endoscopies and the disease was in the terminal ileum.
The next MRE was in early 2013. The stricture was 20 cm and now it's read as 10 but it is tighter than before.

I want something to prevent this stricture from worsening if possible and others forming. Nothing has been suggested by current gi.

 

[Tesscorm]

I agree with getting a second opinion. I think it becomes easy to accept certain symptoms and/or behaviours when they occur over a long time. You need to look back a year ago or more and then compare if this seems 'normal'.

I understand that having crohns may sometimes cause certain symptoms, ie eating foods that bother you, etc. but, aside from that, I think if you are in remission, you should not be seeing symptoms very often. If your son did not have crohns and was eating a decent diet (including the Boost shakes) yet lost 5 lbs, was anemic even with supplements and fatigued, you wouldn't be questioning if this was normal - you'd know something was 'off'. Your instinct is telling you something isn't right and I would follow that.

He has an ileal stricture that is worsened on MRE but otherwise no inflammation

What does 'otherwise' refer to? Does he have active inflammation at the stricture? If yes, then it seems his treatment is not working well enough (or not working 'yet') so I would ask 'when' would he expect to see improvement?

Is your son open to seeing another GI for a second opinion?

:ghug: :ghug:

 

[my little penguin]

I am with the others if the stricture is new - yes the other drugs have potential risks but surgery ( anethesisa alone) has a greater risk .
If your not slowing the disease the risk from just taking buesonide is high.
As far as second opinons call around until you find a good one your happy with - given its August your might be able to schedule by winter break of you call now .
Agree on biologics ( aslo realize I have seen this before when a Ibd kid /parent does not want to do whatever drug xyz the docs sometimes out of respect of that go a lot less agressive since your not comfortable with standard 2nd tier drugs for Ibd).
That may not be true in your case ( just a mom not a doc)
But I have seen it more than few times .
Doc says do this
Parents say no
So docs approach is slower unless things are really bad .

 

[Tesscorm]

Sorry, some posts occurred before mine above... so a bit behind the conversation...

I would try contacting a couple of other GIs near your son's school to see if you can get a second opinion. If not, can he schedule an apptmt with a GP at the school (or nearby) and get a referral through them (bypassing his current GI and his 'doing fine' referral)? (Not sure how referral process works there.)

Next time he has symptoms (such as the vomiting), I would also try to go to the hospital and see if you can be seen by a GI (again, not sure how it works there but this is how my son was assigned to his first GI)...

 

[Momtotwo]

Is his college in/near a large city? I don't like fact that he will be seen by a fellow because he is stable. That will not be a second opinion- and it sounds like minimal follow-up. Any chance of going to Cleveland Clinic or Mass General? Is his current GI an IBD specialist?

 

[Patricia56]

Questions that need clarification possibly through 2nd opinion:

1. Was 1st stricture read as due to inflammation or scar tissue?

2. Is 2nd stricture read as inflammation or scar tissue? If the later, this could explain the changes in the appearance of the stricture. This can only be fixed by surgery.

3. Continued elevation of inflammatory markers combined with anemia and weight loss strongly suggest to me that he has continuing inflammation that requires more aggressive treatment. What treatment(s) are you/he open to? Methotrexate? Biologics? I agree that you will probably have a hard time making a case for biologics given his "low grade" symptoms - insurance would probably deny it.

4. If you make it clear to GI you want more aggressive treatment what is his response? Many adult GI's are much less aggressive in treating adults than Ped GI's are in treating children and you have to push them or find one that sees things your way. Writing out your observations and position and giving that to the doctor when you go to an appointment does a couple things. First it makes it clear to the doctor what you want to discuss and second it gets your concerns/observations into the clinical record.

5. What facility is "fellow" associated with? I would give this a try if it is a facility where he will be treated by an IBD clinic rather than a regular GI clinic. Usually the teaching hospitals have the attending come in and review the findings of the fellow so you do get a chance to talk with the attending about your concerns and observations.

6. What happens if you contact your insurance company with your concerns about the referral? Sometimes this can produce helpful results.

 

[kimmidwife]

I have to agree with the others. These findings are not doing fine! Anemia, an elevated CRP, and a stricture are all signs that his disease is not under control. I really think a second opinion is in order. I am going to also send a PM now.

 

[Maya142]

What about Methotrexate? I agree, it definitely does not sound like he's doing fine.
If you're in NY have you considered Mount Sinai in New York City? They're known for IBD.

 

[xmdmom]

Yes I know he's not doing fine if he's anemic and tired and low weight but I needed your confirmation because when I talk to his doctor he acts like I"m overly concerned. The city is not NYC. The new city has an IBD clinic but the most experienced doctor is not accepting new pts and the secretary said he was likely going to be seen by a fellow. I'd prefer someone with a lot of experience.

Tess: The doctor said he thinks the stricture is probably fibrosis. I'm not sure how he knows. He hasn't seen the film only the report. I really lost confidence in the reading based on the fact that the first reading missed the stricture on a person with Crohn's.
There was no inflammation seen/read (most recent mre).

Patricia: The fellow is associated with an IBD clinic but they triage to an attending or a fellow based on what an attending thinks after reading the referral, which said he is doing well. I realize he's doing better than many but not as good as we'd like! I asked the doctor about other treatments and he said he'd have a hard time recommending remicade at this point. I'll consider the insurance angle.

MLP: I think the drugs he's on are controlling the inflammation to an extent just not normalizing things. It's hard to know but I'm guessing there's inflammation somewhere that isn't showing (or wasn't read) on MRE and that he isn't absorbing completely normally.

Maya: I don't know much about Methotrexate in Crohn's.

I appreciate all of your responses!

 

[Johnnysmom]

I think it is completely reasonable to expect that your son has good energy and is at a healthy weight, without having to drink ensure. When DD was having difficulty gaining weight and had a high fecal cal, I didn't understand why his GI was satisfied with where he was. I thought maybe this was the best we could expect him to feel. Looking back, I think things just weren't bad enough, yet, to make med changes. Johnny ended up getting dramatically better just about 6 months later. His fecal cal dropped to normal and he just started gaining weight. I think healing and solid remission can take some time.

That being said, it sounds like you are having some other concerns so maybe it is time to take a look at other GI's?

 

[Tesscorm]

Hadn't thought about an FC test until Johnnysmom mentioned it. Can you request an FC test? A fairly easy and noninvasive way to test for intestinal inflammation...

 

[Patricia56]

Do you have copies of the reports? What exactly do they say?

What meds, if any, is he currently taking?

 

[DustyKat]

If the doctor is happy with this treatment plan and he has been on it for some time then in my opinion no, he is not doing fine.

Responding well to treatment shouldn’t mean being anaemic, losing weight and being dog tired. It’s not fair to your son that the GI thinks that it is okay for your 21 y/o son to live his life that this. :yfrown:

Dusty. xxx