My son had surgery in September to remove a stricture at the end of the small intestine. He's had a difficult case that's never reached a full remission, and the stricture had most likely been there for years. All of the obviously inflamed part was removed, and he recovered quickly from the surgery.
The history is long and I won't get into it all here, but one thing we've always noticed is that many foods seem to provoke inflammation, even while on biologics. As a result, he's been on an exclusive or near-exclusive formula diet for most of the last 2.5+ years. Shortly before the surgery he had received an NG tube and was getting a semi-elemental formula, which seemed to do wonders for his symptoms at the time compared to the polymeric formula he had been having.
He kept the tube for another 6 to 8 weeks after the surgery, but we were all hopeful that he could start having more food and shift to using the formula as a supplement. Even a couple of weeks after the surgery we started to give him a little bit of food. A month after surgery he had a normal CRP and ESR, and since things were going well more food was added to his diet and eventually the tube was taken out, with the idea that he would still drink 3 or 4 bottles of polymeric formula a day.
Well it wasn't long after the tube was out and he was having more of his favorite foods like steak and homemade pizza that he started to get substantial diarrhea (maybe 3-5 times a day). We persisted with foods for a few weeks and started to bump up the formula quantities, but the diarrhea continued.
We realized that food wasn't really working out, and even shifting formula quantities up to about 80% didn't seem like it was helping much. He got a blood test, and his ESR was up to 22. So we went back to 100% formula, and we got a sample of drinkable semi-elemental formula (Pediasure Peptide). Within a week of going back to 100% formula--and one day after starting on all-Peptide--the diarrhea stopped.
Since then he's had his longest period of actually solid poops in at least a year and a half--over two weeks.
One thing I think is particularly notable about all this: 50% formula may not be that much better than zero formula, and 80% formula seems to be similar to 50%. However, 100% formula seems to be a completely different situation. This implies there's something in particular in the food that, even in small quantities, is causing a problem.
Overall, there's some good and some bad here. On the one hand, we've unfortunately learned again about just how strongly food provokes inflammation. On the other hand, the current status is finally looking good aside from not being able to eat ordinary foods.
I don't know how he's going to be able to both eat and have no inflammation given how extreme this reaction to food is. I'm not sure any biologics can effectively fight that, but stelara is most likely on the agenda anyway. I wonder if we can figure out exactly what it is in foods that's causing the problem. Is it like an allergy/multiple allergies to some common components of many foods? Is it some kind of digestive enzyme insufficiency?
I get the impression that even the doctors aren't used to seeing this strong a reaction to foods. Is this similar to anyone's experience here?
The history is long and I won't get into it all here, but one thing we've always noticed is that many foods seem to provoke inflammation, even while on biologics. As a result, he's been on an exclusive or near-exclusive formula diet for most of the last 2.5+ years. Shortly before the surgery he had received an NG tube and was getting a semi-elemental formula, which seemed to do wonders for his symptoms at the time compared to the polymeric formula he had been having.
He kept the tube for another 6 to 8 weeks after the surgery, but we were all hopeful that he could start having more food and shift to using the formula as a supplement. Even a couple of weeks after the surgery we started to give him a little bit of food. A month after surgery he had a normal CRP and ESR, and since things were going well more food was added to his diet and eventually the tube was taken out, with the idea that he would still drink 3 or 4 bottles of polymeric formula a day.
Well it wasn't long after the tube was out and he was having more of his favorite foods like steak and homemade pizza that he started to get substantial diarrhea (maybe 3-5 times a day). We persisted with foods for a few weeks and started to bump up the formula quantities, but the diarrhea continued.
We realized that food wasn't really working out, and even shifting formula quantities up to about 80% didn't seem like it was helping much. He got a blood test, and his ESR was up to 22. So we went back to 100% formula, and we got a sample of drinkable semi-elemental formula (Pediasure Peptide). Within a week of going back to 100% formula--and one day after starting on all-Peptide--the diarrhea stopped.
Since then he's had his longest period of actually solid poops in at least a year and a half--over two weeks.
One thing I think is particularly notable about all this: 50% formula may not be that much better than zero formula, and 80% formula seems to be similar to 50%. However, 100% formula seems to be a completely different situation. This implies there's something in particular in the food that, even in small quantities, is causing a problem.
Overall, there's some good and some bad here. On the one hand, we've unfortunately learned again about just how strongly food provokes inflammation. On the other hand, the current status is finally looking good aside from not being able to eat ordinary foods.
I don't know how he's going to be able to both eat and have no inflammation given how extreme this reaction to food is. I'm not sure any biologics can effectively fight that, but stelara is most likely on the agenda anyway. I wonder if we can figure out exactly what it is in foods that's causing the problem. Is it like an allergy/multiple allergies to some common components of many foods? Is it some kind of digestive enzyme insufficiency?
I get the impression that even the doctors aren't used to seeing this strong a reaction to foods. Is this similar to anyone's experience here?