The latest with my almost 15 year old

[cassimw]

I just felt like checking in for support. My nearly 15 year old was just diagnosed with crohn's and an internal fistula (the correct term slips my mind at the moment) just 3 months ago. She's had 3 Remicade treatments and has been on 6-MP for about a month. Additionally, she's been on a diet of mostly Ensure (she has about 400 calories for food) since her diagnosis, which immediately stopped her pain. Bloodwork indicates that inflammation has normalized and her iron levels are coming up (due to iron supp.). Her 1st calprotectin test was in the 2000's - I had no idea how bad that was until a recent retest indicated she's in the 400's now (I think that's still not great, am I right? I read that 50 is normal). All appears to be moving in the right direction.

She's had a few setbacks - she threw up on Christmas and New Years. We don't know why on Xmas as she didn't have a lot to eat. New Years she had way too much. Then last week she had pain again for 4-5 days for no apparent reason. A repeat ultrasound showed no new developments. We'll repeat the MRE in a few months, but the doctor wants to give the meds more time.

Due to the setbacks, my daughter is afraid to increase her food calories :-(

I worry about the setbacks and what they mean. And I worry that the fistula won't heal and we may have to discuss surgery.

Just looking for support and/or to hear from others who have been in similar circumstances. I get the impression that not many people (esp. kids) have these internal fistulas. I keep seeing posts about external ones. Anyone have experience with that? What about vomiting?

Best to everyone here. Good to be part of this group.

 

[kimmidwife]

Cassi,
Glad to hear she is improving overall. All our kids have setbacks now and again. It is not unusual. When she adds food back in it should be done slowly one thing at a time and see how she tolerates it. By internal fistula do you mean fistulizing Crohn's disease?
Fistulizing crohns is a little harder to treat. She just may need more time but it definitely sounds like she is responding to the treatment which is really good.

 

[my little penguin]

Ds used to have vomiting appt prior to dx
He was still vomiting a year after dx and three remicade infusions
Thankfully about 8 weeks after starting remicade his vomiting stopped .
6-mp takes three months to be effective
Most kids with Ibd do not get below 50 on FC
Ds has but he does other weird things like constipation flares and not diarrhea

 

[Tesscorm]

I remember being told it can take quite a while for intestines to heal. Also remember, for the first year after diagnosis, my son would have random symptoms.. nausea one day, then fine, tiredness, pain, mucous, etc. Eventually, I stopped worrying (as much) each time and learned to wait a day or two to see if it would go away. As long as the symptoms don't stay or worsen, and she's being monitored, I'd try not to worry too much but just watch and wait. But, easier said than done. :ghug:

It might help to keep a journal of her symptoms... this will show you if things are, in fact, improving over time and, if complications do arise, you have some background info.

 

[Mehita]

My son had an internal fistula. It connected an abscess to his rectum so the abscess was draining out through his bottom. He was hospitalized for it and put on IV abx for a month and also started Remicade at the same time. He responded really well to Remicade on all fronts and was in clinical remission two months later. Hang in there!

Personally, I always freak out when he vomits. Between having had a stricture and also having Celiac, I can't help it; and I have to remind myself that sometimes it's okay for kids to vomit. Overeating, viruses, stomach bugs, etc. I'd just track it on a calendar or something and look for patterns or an increase in frequency. As the others have said, if the meds work, symptoms will slowly disappear over time, but it can take awhile.

 

[pdx]

I understand why you're worried, but it sounds like everything is going in the right direction. My daughter's path was similar to yours: Remicade, immunomodulator added a few months later (MTX for her), and EN with a little food (about 200 calories a day) for 10 weeks. She had microperforations in her small intestine that caused problems early on, so probably the start of fistulizing disease. It took my daughter 6 months before she stopped having fairly frequent nausea and cramping. Now, a year later, she rarely has either one.

Give the medicines a few more months and I think you'll see continuing improvement. In the meantime, it's not the worst thing that your daughter wants to stick with a mostly liquid diet; it will continue to help her intestines to heal.

Good luck--it's so hard at the beginning, but it gets better!

 

[cassimw]

Ds used to have vomiting appt prior to dx
He was still vomiting a year after dx and three remicade infusions
Thankfully about 8 weeks after starting remicade his vomiting stopped .
6-mp takes three months to be effective
Most kids with Ibd do not get below 50 on FC
Ds has but he does other weird things like constipation flares and not diarrhea

This is useful to know that others have the vomiting symptom. My daughter had never really done that before dx, so it was upsetting when she did. Well, actually, she did have a few, odd, vomiting incidents prior to diagnosis - we just figured she ate something bad.

 

[cassimw]

I remember being told it can take quite a while for intestines to heal. Also remember, for the first year after diagnosis, my son would have random symptoms.. nausea one day, then fine, tiredness, pain, mucous, etc. Eventually, I stopped worrying (as much) each time and learned to wait a day or two to see if it would go away. As long as the symptoms don't stay or worsen, and she's being monitored, I'd try not to worry too much but just watch and wait. But, easier said than done. :ghug:

It might help to keep a journal of her symptoms... this will show you if things are, in fact, improving over time and, if complications do arise, you have some background info.

It's so helpful to hear that sporadic symptoms post-treatment are "normal" for a while. The journal suggestion is a good one. Thanks for your response.

 

[cassimw]

My son had an internal fistula. It connected an abscess to his rectum so the abscess was draining out through his bottom. He was hospitalized for it and put on IV abx for a month and also started Remicade at the same time. He responded really well to Remicade on all fronts and was in clinical remission two months later. Hang in there!

Personally, I always freak out when he vomits. Between having had a stricture and also having Celiac, I can't help it; and I have to remind myself that sometimes it's okay for kids to vomit. Overeating, viruses, stomach bugs, etc. I'd just track it on a calendar or something and look for patterns or an increase in frequency. As the others have said, if the meds work, symptoms will slowly disappear over time, but it can take awhile.

I feel so bad for our kids. Your son has been through so much! Again, it's useful to hear about the vomiting. I keep freaking out and thinking she has a stricture or a blockage. Thanks for sharing.

 

[cassimw]

I understand why you're worried, but it sounds like everything is going in the right direction. My daughter's path was similar to yours: Remicade, immunomodulator added a few months later (MTX for her), and EN with a little food (about 200 calories a day) for 10 weeks. She had microperforations in her small intestine that caused problems early on, so probably the start of fistulizing disease. It took my daughter 6 months before she stopped having fairly frequent nausea and cramping. Now, a year later, she rarely has either one.

Give the medicines a few more months and I think you'll see continuing improvement. In the meantime, it's not the worst thing that your daughter wants to stick with a mostly liquid diet; it will continue to help her intestines to heal.

Good luck--it's so hard at the beginning, but it gets better!

I know you are right - that we need to give it time. so glad to hear your daughter is doing so much better now - that certainly gives me hope! And you're right about the mostly liquid diet - I'm sure it's helping and I'm not sure why I'm so anxious for her to eat more solid food. I guess I just want her to feel more normal. But I think I'm projecting. I have to learn to stop doing that.

 

[cassimw]

This is the type of fistula that my daughter has:
"Fistulas linking different parts of the bowel or intestine together, bypassing a section in between. These are enteroenteric or enterocolic fistulas." (I'm not sure which she has, but enteroentric links small bowel to small bowel and the enterocolic links small bowel to large bowel). Does anyone else have this? If so, what has your experience been? Were you successful in healing it? Or did you ultimately need surgery? Or maybe you can just live with it? Did you develop more fistulas?

 

[cassimw]

Oh, and I also forgot to mention that she keeps testing slightly high on her liver enzymes. The doctor just cut the 6-MP dose back, so hopefully that helps. Anyone else have this experience with the liver?

 

[pdx]

Yes--my daughter's liver numbers jumped up right after starting MTX. Her doctor continues to monitor them, but they haven't risen any more after that first jump, so we haven't changed dosing.

 

[Farmwife]

As you can tell, we've all been there with the worry of setbacks.
Grace still vomit but not as much.
I hope it gets better soon!

 

[my little penguin]

Ds had high liver enzymes from 6-mp
Every time the Gi tried to get to therapuetic levels Ds liver numbers would go up.
Eventually Gi had Ds cut the dose by 75% and add allopurinol
That led the same problem
So after 8 months Ds stopped 6-mp and switched to Mtx as a monotherapy .
It was a failure as well


Good luck

 

[Catherine]

This is the type of fistula that my daughter has:
"Fistulas linking different parts of the bowel or intestine together, bypassing a section in between. These are enteroenteric or enterocolic fistulas." (I'm not sure which she has, but enteroentric links small bowel to small bowel and the enterocolic links small bowel to large bowel). Does anyone else have this? If so, what has your experience been? Were you successful in healing it? Or did you ultimately need surgery? Or maybe you can just live with it? Did you develop more fistulas?

We believe it mostly likely my daughter has fistula from small bowel to small bowel. It is currently giving her no problems. It was found over 3 year old ago. Yes she will just live with it. There was talk it maybe worth looking at remove that section of bowel if they couldn't get the anemia under control.

Hemoglobin is now borderline normal.

 

[Optimistic]

Hi. Just chiming in to say vomiting was one symptom that was slow to stop for my son. Even when everything else seemed to be going in the right direction it would happen randomly. We couldn't associate it with any particular event, food, whatever. I think it was the last thing to go before he hit remission.

 

[cassimw]

Ds had high liver enzymes from 6-mp
Every time the Gi tried to get to therapuetic levels Ds liver numbers would go up.
Eventually Gi had Ds cut the dose by 75% and add allopurinol
That led the same problem
So after 8 months Ds stopped 6-mp and switched to Mtx as a monotherapy .
It was a failure as well


Good luck

Thanks MLP. This is useful. Was your daughter ever on Remicade? Sorry you're daughter had such a rough go of it :-(

 

[cassimw]

We believe it mostly likely my daughter has fistula from small bowel to small bowel. It is currently giving her no problems. It was found over 3 year old ago. Yes she will just live with it. There was talk it maybe worth looking at remove that section of bowel if they couldn't get the anemia under control.

Hemoglobin is now borderline normal.

This is interesting to me, thanks for chiming in. First, it's heartening to know that one can just sort of live with it and that surgery isn't inevitable (or at least not for a long time, if ever). Interesting about the primary factor in surgery or not being anemia. Wonder why that is? Was she severely anemic? I'm not sure where my daughter's iron levels are currently, but I know the doctor said they were improving, so that's good.

 

[cassimw]

Hi. Just chiming in to say vomiting was one symptom that was slow to stop for my son. Even when everything else seemed to be going in the right direction it would happen randomly. We couldn't associate it with any particular event, food, whatever. I think it was the last thing to go before he hit remission.

Thanks. It was just so strange to me that my daughter vomited - it was a new thing for her and seemed so out of the blue. Not that I'm happy that others are vomiting, but it's heartening to hear that this is not unusual for Crohn's. Wonder what causes it? Also glad to know that these random incidents will hopefully taper off as you, and some others, have indicated.

 

[my little penguin]

My son was on every drug
Pentasa
Asacol HD plus all meds below at one time or another
6-mp
6-mp plus allopurinol
Mtx
Remicade ( stopped due to two allergic reactions)
Humira
And now humira plus Mtx
He has been on humira since April 2013

He was dx at age 7
Tried all other meds till remicade at age 8
Had to switch to humira after 8 months at age 9
He is now 12

Good luck

 

[my little penguin]

When the duodendum is inflamed for Ds he vomits
Others vomit from structures or narrowing of the intestine

 

[my little penguin]

Last thing
Get copies of All pathology reports
All bloodwork and physicians notes
Get a binder either electronic or paper
You need to be familiar with all terms and what her numbers are so you know when they are good or not
And can teach her

 

[Jmrogers4]

No experience with my son but my hubby had internal fistula at scopes 5 years ago at scopes in October completely gone. It was something they watched and monitored for surgery but as it was not causing complications they just took a wait and see approach. He also has random episodes of vomiting, usually when he tries to eat too much too fast actually it's not even a too much, more of a too fast, he has been dx'd over 20 years so has learned at least for himself that more smaller meals over the day work.

 

[cassimw]

No experience with my son but my hubby had internal fistula at scopes 5 years ago at scopes in October completely gone. It was something they watched and monitored for surgery but as it was not causing complications they just took a wait and see approach. He also has random episodes of vomiting, usually when he tries to eat too much too fast actually it's not even a too much, more of a too fast, he has been dx'd over 20 years so has learned at least for himself that more smaller meals over the day work.

This is incredibly hopeful news! That a fistula can disappear! That is amazing. PAW just had an ultrasound recently (mainly due to new vomiting symptom and also new on/off pain) and the tech said that she couldn't see the fistula in the ultrasound this time (she saw it plainly last time). She said that doesn't mean it's gone though - it's hard to see in ultrasounds - but I'll take what I can get.

Interesting about eating too fast. I'll tell PAW about that and see if maybe that's the problem.